Life with Grace

Happy New Year

2011-12-31T22:52:00.000-06:00

I can't believe 2011 is already over. This has been a very tough year but also a year of miracles. My Gracie has turned 4 years old. She's smart and incredibly sassy. She's changed the words to LMFAOs "I'm sexy and I know it to, "I'm sassy and I know it!" We are working on patience on my part and cooling down the temper on Gracie's part. We both want to be control and it's almost a battle royale some days when neither one of us will back down. I just can't wait until she's a tween or teen. I'm going to need to go to Mass every day so I can survive.

As I think about my girl this year, I have learned so many new things about her...
1. I knew she was brave and tenacious but I didn't know how incredibly strong and brave she is until this summer. She is way stronger than any super hero...Seriously.
2. She is a scaredy cat...she gets scared of things really easily, even when she likes them...She loves the music and Belle from Beauty and the Beast but the movie makes her very nervous. When bad things happen on tv, she panics...she gets scared very easily
3. She doesn't like Disney World
4. She says sorry for everything, for example, "I don't like Disney World, sorry!" Poor baby...I think that is my fault because I am a big believer in apologizing for poor behavior.
5. She has a 10 minute attention span on most things...toys, playing, etc.
6. Gracie likes to pretend to take orders...she has a notepad and everything...she pretend to answer the phone and we have to "drive" to pick up the phone...maybe that's my clue to cook more at home?
7. Gracie loves the beach...LOVES!
8. Gracie slept in her own bed in her own room for a while but now is back in my bed...she says she's not ready
9. Gracie loves stickers, paper and big pencils to write with and also likes to stuff envelopes
10. Gracie's favorite foods are waffles, enchiladas, and cheese

It's so weird that here I am, sitting in bed and will probably fall asleep before the NY rings in. I remember the days when I was younger and childless...my night was only beginning and I would be out until who knows when. It was fun but now I feel so much more happier and I look at my daughter who is sprawled out hogging my bed next to me. I know that 2012 is going to be a great year full of blessings. I pray that everybody has a wonderful and blessed 2012.

Merry Christmas & Gracie is Now 4!

2011-12-25T21:40:00.000-06:00

Christmas Eve (Gracie's birthday) and Christmas were even more special this year. I am so thankful that we have her this year after this past summer. We came so close to losing her twice. Right now, I'm honestly a little on the edge because something isn't right. Thursday night sweet girl was mean girl (which means she is tired or not feeling well or out of control). We went to Costco with my sister and her kiddos and my girl turned blue...lips and hands. We went home and I took her oxygen sat levels which were good for her, 84. But she started complaining of a headache and then she got her low grade fever. She's had the fever and headache for the past 4 days. It goes away after tylenol. She is also on oxygen at night (cardiologist wants her to charge her batteries...he wants it to be in the mid to upper 80s). I have her on 2 1/2 L right now and her sats are 77...can you imagine what they are without oxygen? She also has a runny nose. So, I am watching her closely and calling the cardiologist on call in the morning. Our doctor is in Hong Kong for Christmas. I am just a bit on the edge. I really hope that everything is okay and I'm just worried for nothing.

Our Christmas was very nice. My sister had to work until 1:30 p.m. so we did Christmas later. I grilled burgers, hot dogs and sausage because I was tired out from the turkey and ham (crazy I know...I love turkey but I wanted to give myself a mini break from the heavy cooking). I also made my Popo's pinto beans and mashed potatoes. Everything turned out yummy. I enjoyed spending time with my family. I am very blessed they live within a mile of me.

Gracie had a nice birthday breakfast yesterday. She didn't realize she was now 4 years old until my mom said she could now say she was 4. She loved that. She had a great birthday party the week before at an art place. She had so much fun. I didn't realize how stressful it is to plan a birthday party even when it is at another place.

Gracie was obviously on Santa's nice list. She got the roller skates and elbow and knee pads she asked for. As for me, I got some pretty nice things too...super excited about my Mr. Coffee Keurig machine and I don't even drink coffee but I do love me some tea and hot chocolate. I guess I was on the nice list too.

I hope everybody had a blessed and wonderful Christmas. I wish you all a New Year full of great blessings.

Catching Up

2011-12-08T13:33:00.000-06:00

We survived our first Gracie & Mama trip. Right before Thanksgiving, we went to Disneyworld. We had a great time but I discovered that Gracie wasn't quite ready for the experience...she loved the characters but the rides left a little to be desired. She did love the two Toy Story based rides because they were interactive. She HATED "It's a Small World"...the dolls freaked her out a bit. She got sick...like she was blue on Thanksgiving. Her oxygen sat levels were okay...not the best but okay. I took her to visit our friend who is a PICU doctor the next day and they thought she looked okay. But we are now doing oxygen at night every other night. We had a nice holiday but I noticed that schedules really help her behavior (either that or the idea of being on Santa's naughty list is motivating her)...she was really mean during the rest of the week we were home together during Thanksgiving break.

She has discovered roller skating (via physical therapy)...she LOVES it. She can skate better than I can. She's asked Santa for skates and elbow and knee pads for Christmas. We also got an Elf (Elf on a shelf) which Gracie named Cookie. He seems to be a good bad behavior deterrant.

We are getting ready for her birthday party on the 17th of December. It's our first big party with friends. It should be an interesting experience. I think I have the goody bags together. I need to get the snacks, cupcakes, and ice cream cups and drinks. Then I'll be ready to go.

We have a mended little hearts Christmas party tonight. She'll be styling and profiling. I had to get new black mary janes which led me to discover that all of her shoes were too small and her toes were curling up. It would have been nice if she had told me. I didn't know because she dresses herself and puts on her own shoes.

I keep getting sick!

2011-10-30T22:35:00.000-05:00

My 3 almost 4 year old took care of me and her Thursday night. I was exhausted and sick as a dog with a raging sinus infection that was rocking my whole body...mostly my head. She had a tough day herself. She got blood drawn for a CBC & INR test by Junebug our awesome home healthcare nurse and she found out we will have to repeat the INR this week because her number was lower than her doctor would like. She really hates pokes and frankly, I can't blame her. Anyways, I really felt like I had been run over by an 18 wheeler. I was laying on the couch with a heating pad on my face while my daughter ate her dinner (which I had made/heated...beef ravioli with parm. cheese (her fave cheese) and watched Nick Jr. When she has an especially tough day, that's how she unwinds. I was falling asleep during the shows and she would announce one show was over and another was beginning. She would periodically ask me how I was or tell me I was snoring (because my nose was stuffed up). I heard Go Diego Go and decided that would probably be a good time to go upstairs and lay down in my bed. I told my girl that she could watch TV in my room or the upstairs TV room. She opted for my room in bed next to me. I, of course, fell fast asleep (it was only like 7:30 p.m.). I made sure I had given her all of her meds and I had her juice. I even turned on her Ikea flower & bug lights in her room when we got upstairs, just in case I fell asleep (I know myself). I vaguely remember her saying that Team Umizoomi was over and to move over please. Which I guess I did. I woke up at midnight...the TV was turned off. No Gracie in my bed. I panicked briefly, walked quickly to her room to see that she had tucked herself into bed. She even had her Abby Cadabby potty book that she likes to read, right next to her. I felt so bad but at the same time I was proud of her for taking care of me and her. I felt better the next morning. Unfortunately it was one of those up and down things. I knew it was getting worse slowly. Mornings are always good for the most part. I was able to feel good for the Duck Race Saturday morning in which my sweet girl dressed as Snow White (she should have won the costume contest but whatever! we still got a great raffle prize) and this morning at the park. I decided to go a 7 day a week clinic because it is hard to get into my doctor outside of the work day. It was as I suspected...a sinus infection. I got a shot and an antibiotic. I should be good to go for Halloween tomorrow. Gracie is ditching Snow White to be a giraffe...her cousin is going to be a pig...wants to be in the animal category. Glad we had those old Halloween costumes from my niece and nephew.

Trying to keep our heads above water

2011-10-16T18:42:00.000-05:00

My beautiful girl started getting grumpy and mean...that can only mean one thing...yep she's sick...strep and an ear infection. She's been on antibiotics now for several days and is doing much better. In fact, she is now on her scooter wearing nothing but a pair of boots, a helmet & inside out panties...she had been wearing her Snow White costume but one of the ribbons ripped off and we have fabric glued it back (it is now setting).

We went to the pumpkin patch yesterday. She had a nice time. It wasn't too far from our house and not too hot outside. We're finally getting out of the 90s. I'm waiting for the fall weather to finally begin.

Work is okay. It's so hard doing everything without an assistant. I'm incredibly busy despite the fact that I don't have an assistant and my circ numbers are higher than they were last year. Not sure why but they are. I'm still have problems trying to convince the powers that be that circulation numbers truly aren't a reflection of my program. In fact, I've been doing more teaching this year. I've been frustrated to the point where I honestly think a change will be good for me...not immediately. I love my faculty so much. I am looking at maybe the new middle school if the bond passes. I think a new school would be a great challenge. I have been at my current school for 10 years now...the longest I have been in my education career. I think change will be good for me. Right now though I am trying to keep my head above water in my professional and personal life.

We go back to the cardiologist on Thursday. I hope we get good news again. I still keep waiting for the other shoe to fall. I hate that I don't feel like it's over yet. She is now sleeping in her own bed. She's had some night terrors and one accident but she's been there now for one week. I am super proud of her. She tells me she doesn't want to sleep with me because I have stinky feet (one day my shoes got wet and gave me stinky feet...one day!) but I'm glad she's in her own bed. I think it is good for both of us. I am sleeping better.

We are still taking our days one day at a time. We are still on some heavy meds but the thing is we still are. And our lives are almost normal!

Life in the Fast Lane

2011-09-10T21:42:00.001-05:00

We've been out of the hospital almost 3 weeks and it seems that life is suddenly on fast forward. I always feel like I'm trying to catch up. I came to the conclusion yesterday afternoon at work that it was never going to happen. I just had to give up the fight and get done what needs to be done...forget about the stuff that I would have like to have done but it'll be okay if it never gets done, and just keep up with the present..I call it real life treading water. I am keeping my head above water. It's not just work (which I do love but it sucks this year that I have lost having an assistant so that makes it a lot more difficult) but just keeping up with the medical side of my sweet and sassy girl...every week week there are 2 days of PT/OT & Speech, one afternoon visit by JuneBug the best homehealth care nurse to do INR (finger poke tests for coumadin), and I've added Play therapy to the mix. 3 afternoons a week we have something and my parents take her for speech and OT on Monday mornings. I'm getting up at 5 a.m. to give her round 1 of her meds and then as we are walking out the door around 7:15ish, round 2 of meds (that I have to compound) and in between that time her asthma puffs. When we get home in the afternoon repeat the morning routine but throw in some coumadin (that also has to be compounded). Someone told me today that they didn't know how I did it but you have to...there isn't another choice. I have to remind myself that I would rather have my Gracie than not have to have all this "insanity" of medical mania. And you know, if you really think about it, there are parents out there that have to deal with a lot more than what I deal with. I don't have feeding tubes or catheters or wheel chairs. Those parents truly are amazing. Whenever we go to a Starlight Foundation event, I am reminded of that. I have a very smart, amazing, funny, beautiful, sassy miracle child. I'm blessed. She reminds me of the beauty, love and power of God. And she's doing great! She's back at school helping her "boyfriend" Danny out by reminding him to put on his glasses or put his blankie in the cubby. She's crossing her arms when she thinks she was wronged and is not afraid to say something about it. She's got an opinion about everything under the sun and is always asking why. I think I'm going to try to follow my daughter's advice of slowing down.

We're Home and I'm back at work

2011-08-30T21:18:00.000-05:00

We came home Friday afternoon. Gracie was antsy to get back home. She's done incredibly well with spending most of her summer in the hospital. I don't know if she's quite processed everything. I know I'm still processing things. I know that my daughter is a miracle child. I know that there were a couple of times I almost didn't have my daughter. I know that I still get a little emotional when I talk about some of those times. I feel guilty sometimes because my parents have been watching Gracie while I have been at work this week. I don't ever want to feel like I'm taking advantage of them. They have pretty much been my main support system as far as the actual physical care of Gracie. Everybody else I know has to work like me. I worry about my job, falling behind, and getting my pay docked. I also worry about another trip to the hospital. I keep telling myself that I have to do what I have to do and God will provide. He always does. I also have to keep telling myself that Gracie is going to be okay. She knows herself. She used to want to wear her canulas for oxygen the second time we came home. This time she says she doesn't need it. I think she does though, at least some of the time.

Gracie is doing okay. Her sats were a bit better in the hospital but she's also been more active. She's been playing like mad, singing along to the Fresh Beats,watching Hello Kitty and Ni Hao Kai Lan. She has also been acting out more, especially in the evenings when she's tired. It got to the point one night that she ended up sleeping in her own bed in her own room. She stayed there until 4 a.m. when she appeared on the side of the bed, sweet as pie, wanting to sleep with me. Of course I let her. We go to the cardiologist tomorrow and to play therapy to help her deal with her anxiety issues and the big changes in her life. I am praying for good news and I think the therapy will be good for all of us.

She wants what?

2011-08-21T08:38:00.000-05:00

After all that has been said and done to my sweet miracle, I am finding it hard not giving her most of what she wants...I don't want to create a bratty monster. In fact, she really doesn't ask for or demand anything. But she blew me away Friday evening when she asked me for a sister. So, after my best friend, who is pregnant and due tomorrow, leaves Gracie says, "I want a sister." "A what?" I ask her because I couldn't really understand what she was saying. I start naming things around the room and she shakes her head no, that wasn't what she wanted. Finally she said it slowly, "I want a sisss-taaaahhh, please, please, please." "A sister?" She nods her head yes very vigorously and continues with her sweet please, please, please plea. I said to her, we can talk about it when you get healthy. She grins and nods like she has won the lottery. I think she thinks she is going to get a sister and it'll be fun. I volunteered my best friend's new baby to be a trial sister for her but she said that she wanted her own. She didn't want a baby sister though. She wants a younger sister who she can play with. I honestly have always imagined having a second child, a sibling for my sweet girl. However, in light of her serious health issues, I took it off the table so the focus would always be Gracie and I never wanted a sibling to ever feel slighted because of the attention to Gracie's health. We talked about how a sister would affect our life, not being able to travel as much, etc. She briefly changed her mind but went back to wanting a little sister. She totally threw me a curve ball...she had totally been okay with being an only child and now she wants a sister. Something to think about. Not immediately. Maybe in the future.

I believe in miracles!

2011-08-20T08:24:00.000-05:00

I always knew my girl was a miracle girl...first even making it 18 months in China without surgical intervention. Then on July 14, 2011, when she suffered heart failure, we almost lost her, but the awesome medical team at Santa Rosa gave her the medical intervention she needed so she could survive. But yesterday was probably, in my opinion, the one that just blows my mind. Yesterday, we were holding our breaths because the doctor was going to do a risky procedure in the cath lab to save her life by busting and sucking up the large blood clots around her Fontan and her pulmonary artery. When he went to do pictures before he actually began the procedure he found nothing...NO CLOTS! He double checked, triple checked...no clots! It could be argued that the CT scan that showed this clot was seriously wrong but I like to think it was a miracle...the power of God and the many prayers...I am so awed by my God and so thankful to him and all her prayed for us. I am eternally grateful. The other great thing is that they think they know why Gracie's sats were off...high pulmonary pressure in lungs...found that nitrous works and they think they have found a medicine that will work like the nitrous...which means maybe no o2 for her when we go home. We probably have about a week here. My students come back next week but my supportive and fantastic principal is closing the library next week so I can be here with my sweet girl. We are still in PICU but we hope to transition to IMC (intermediate care) unit later in the week. Thank you all for your thoughts and prayers. Keep them coming as she recovers and starts this new medicine. I hope that it does what she needs it to and gives her the extra boost to recover from the heart failure and allow her to be a 3 1/2 year old little girl.

Back Yet Again...Critical Yet Again

2011-08-19T03:26:00.000-05:00

I should be sleeping. I just can't though. I feel like I'm living in a neverending nightmare. We are back at Santa Rosa in the PICU...her blood clot around her fontan has decided to rear its ugly head with vengeance. If you were looking at my girl, you wouldn't know how critical she is...she doesn't even think she's sick. Her sats were significantly lower, we had to bump up the oxygen at home, she was bluer, less active, and heart rate erractic. We took her back to the cardiologist Wed. morning and we were admitted to IMC that afternoon. We couldn't get her sats above 80...We had been home 3 weeks. We were doing okay...she was on oxygen and we were weaning but she was feeling good, eating but it seemed that we were building more clot (even though we were on coumadin). So, you might wonder why she's so critical...the huge clot around the fontan, can't remember what they are calling it right now...it could easily break off and going into places that can cause serious damage, heart failure/stroke...she wouldn't survive...so on agatraban a clot buster...but then you have to do something more...so a heart cath is scheduled. It is supposed to bust and suck up a lot of it...however it is incredibly risky...but it we do nothing, she'll die...the medicine approach has its own drawbacks and it may not be effective either...it's hard to make that sort of decision. I pray I made the right one. I watch her sleep and think to myself, please help her be strong....help me to be strong...the doctor said that she'll need lots of blood and that she's going to be sick afterward...who knows how the other little pieces that break off that aren't filtered as well will affect my poor sweet girl...I'm praying for a miracle that somehow preserves her life without much damage to her precious and fragile body and mind...I just am trying to keep my mind positive but at the same time you can't help but be incredibly terrified of the unknown and the unwanted what if...I have incredible faith in God but I also know that God's plans are sometimes not the same as mine. That scares the heck out of me...Then in the back of my mind, I keep thinking of my job...school starts with kiddos next week...just found out they are counting my 2 1/2 absences...going to end up being docked my pay because I will have to use more than the 10 days I had..probably going to do FMLA but I feel guilty for my Wood family (staff and students) because there is no library assistant and seriously unless you bring in an actual former librarian, how will they be able to run the library and all that comes with it? And the battle in my control freak brain hates the idea of someone who doesn't know jack about it messing everything up that I have worked hard to establish and I already feel like I am trying to catch up with everything at work from round #2 in the hospital. Honestly, I am super overwhelmed. I want to get off of this roller coaster (which I ususally love roller coaster rides at theme parks). Please pray for my girl...pray for me and my family for strength to get through this difficult and trying time.

My life in the hospital

2011-07-28T22:16:00.002-05:00

It has been three weeks today since we have taken up residence in the Santa Rosa PICU. We got readmitted to the hospital that Thursday during our follow up appointment because the left side of Gracie’s chest had fluid. We thought it would be as simple as pop in a chest tube for a few days and then back home. Yeah, not so much…she was up and down. Tuesday morning, she was okay, not great but okay. By Tuesday evening, she had really declined. She was in heart failure. They were finally able to get her stable by putting a central line and arterial line in…this was about midnight. By 6 a.m., she started declining again. She was breathing like a fish out of water, barely keeping her eyes open. She had that gray, pale deathly hue. She kept asking me to tell her The 3 Little Pigs over and over again. I knew we were at that point…the heart team wasn’t supposed to do rounds until after 9 when the whole team busted through the room…I knew from their faces it wasn’t good. They decided to put her on the ventilator to help lighten the heart’s load. It is a risky thing to do with a recovering heart kiddo but it had to be done to save her life. That was the worse day I have ever had in my life. As I write this account, I feel the tears forming in my eyes. Even though you have a heart kiddo and they are at a higher risk of dying, you just don’t go there. I never lost faith in God. I knew I had a great team of doctors. They were able to stabilize her by noon. They found more fluid on the other side and put in another chest tube and they also found that she had a blood clot in the fontan as well as in her right leg. They made me go home and rest. That was the second hardest thing I have ever had to do in my life. But I realized that I couldn’t do anything for her. I wasn’t going to be able to save her. I needed to let her rest and heal. I needed to rest and heal.

So, fast forward to 2 weeks later…she is off the vent (got off of it 4 days later)…she went through terrible withdrawals and is now being weaned off methadone. She had a PICC line for 10 day and it got removed yesterday. They have her on Coumadin but are trying to find the right dosage. She isn’t eating as well or not at all really so they put a tube that goes into her tummy and are now doing night feeds. We might be switching to another anti-coagulant medicine that has to be injected twice a day if we can’t get the Coumadin working right. She’s still on oxygen and she might be going home with it. She’s angry and frustrated about being stuck here. She is limited in going to the playroom because she has to be monitored (heart) and has oxygen. She is still sweet, charming and funny but you can see the weariness and wariness in my sweet girl’s eye. I’m trying to arrange play therapy for her to help her work through the major trauma she has gone through. I’m going to therapy to work through the trauma. I had been doing pretty well, feeling pretty okay when the rug was pulled out from underneath me. I stress over going back to work August 8th…will we be out in time? I only have 10 days to take and then I get docked. What happens if I get sick or she gets sick later on? Who will take care of her if we get out in time, she can’t go back to school just yet. The unknown is darn scary. I know we will survive but it would be nice to have some answers.

I am so ready to go home. I hate having to wear my clothes to sleep in. I hate having no potty in our room so I have to walk all the way to the waiting room to go. I hate the walk of shame, it really isn’t but it feels like that when you have to go potty like at 3 am with your hair messed up in the clothes from the day before. I hate not sleeping in the same bed as my girl and holding her all of the time. I hate that both of us have been changed and are wounded creatures. I hate that my baby is scared and has been traumatized. I hate the fact that there isn’t anything I can do to make it better. I hate that she didn’t get a summer vacation or get to recover with me. I hate that it’s going to be hard to transition back to home life if we have accessories like an ng tube and/or oxygen. I just hate feeling like our lives have been put on pause. I hate feeling like the world is passing us by.

On the plus side, I have met some wonderful people and have become friends with many of the doctors and nurses. I have seen them fall in love with my girl. They are her greatest cheerleaders and they adore her and lavish a lot of love and attention on her. I pray that in less than 2 weeks, we will be sleeping in our own bed and staying strong and healthy. My Gracie is my everything. I am thankful that God has blessed me with her. I know that He gives me only what I can handle and I know it’s for some purpose. I am stronger. It’s just how scary your life can change in a blink of an eye.

Ups and Downs

2011-07-06T19:38:00.000-05:00

Recovery from the fontan has been a lot harder than the Glenn. I had heard this was a tougher procedure but I didn't realize that also the recovery would be harder and slower. We are sort of managing the pain with motrin and tylenol but when they start wearing off, you can tell. She has not a lot of stamina and really isn't eating a whole lot. She is eating pretty much rice and some eggs. I've tried to get her to drink a pediasure a day but we aren't really successful. She is incredibly stubborn...but that makes her the survivor that she is. We're still working on the antibiotics. I have to threaten with the hospital but then I also have to give the dose in halves because she'll throw it up. She gets that anxious.

I have been feeling a little house stir crazy. It's hard because all she wants is me and is very high maintanance. I get it but I finally got a break thanks to my parents. I got a pedicure and the hour away made me feel like 20 times better...almost human again. I think that is something you need when you have a big emotional thing like surgery and an extended hospital stay. I think it is easier for two parent families to stay in the game emotionally and mentally because they can be spelled by each other. Single parents have to rely on others but the problem is when your kiddo will not give you up. It's tough but I'm thankful my parents gave the break at home and my bestie at the hospital.

We go to the doctor tomorrow. Crossing my fingers that everything is good. I think I'm going to address the pain issue with him. We'll see what happens.

In the meantime, I'm going to post some of the pics from our Make a Wish trip.

Sesame Place & Surgery

2011-07-03T18:03:00.000-05:00

Gracie, my mom and I went to Sesame Place near Philadelphia courtesy of Make a Wish. We went right before Gracie had her surgery. It was a blessing because during our tougher days after the surgery, we would try to talk about the trip. I have pictures which I will post later I have just been soo exhausted because of the surgery.

The Fontan was rough. I don't know if it was harder this time because she was older or because I really knew her and knew how much pain and how scared she was. It was an emotional roller coaster. No big, scary moments like the first surgery where they had to bag her. She got a feeding tube this time because she couldn't keep anything down. We were also in the hospital longer because of the fluid coming from the chest drains was more than they wanted. We had a scare yesterday when her fever kept spiking when the motrin was wearing off. She had a rough night and we took her back this morning. I really thought the doctor would keep us but he trusts me and so he took off one stitch in an incision that was bothering her and put her on an antibiotic. She is doing better watching her new favorite, Snow White. She discovered that in our 14 day hospital stay. Ask me how many times I've seen it? Like a zillion. But, it makes my girl happy when she's uncomfortable and that is my priority for her as she heals. I'm hoping we'll continue with this positive progress but we are not out of the woods yet. Keep those prayers coming. We appreciate it and thank you. Prayer is incredibly powerful and it has helped us through these rough couple of weeks.

Happy Mother's Day to All Mothers

2011-05-08T21:31:00.000-05:00

Happy Mother's Day to all mother's out there! It's a tough job but only the toughest can take it. I mostly enjoyed my day with my family except when Miss thang decided to become Miss Bratasaurus towards the end of the evening. But she did pretty good and even sang her "I love Mama" song to me which my nephew put on Youtube. I think both of us are gearing up for the cath on Tuesday. I think it puts both of us on the edge and so we kinda get grumpy easily. I'm not looking forward to the cath and most likely we'll be spending the night in the IMC for observation. YUCK! But, it's better to be safe than sorry. After the cath they will be scheduling her fontan for this summer. I should have a better idea of when the surgery will be by the end of the following week.

In one month, we will be going to Sesame Place for our Make a Wish trip. We are so super excited. PA here we come!

Morgan's Wonderland, Princess Tea & Osama

2011-05-02T10:12:00.000-05:00

Wow! What a weekend! It was jam-packed with excitement. When I got up Friday morning, I flipped on the TV to watch Princess Catherine & Prince William walk down the aisle as husband and wife. Gracie could have cared less. She wanted to watch Max & Ruby. We spent the afternoon and part of the evening at the World Wish Day celebration at Morgan's Wonderland. My daughter made friends with the UTSA roadrunner mascot on the carousel. I think he was enamored of her too. She wanted to go where he went but I told her he wasn't just hers. She said, "I have to share?" Yep Gracie, I'm afraid so. She made me sit in the backseat of the car that they have...I think that is a good glimpse of what is to come in her teen years...mom gets to sit in the back. Of course, I can be a good backseat driver! She had a blast and I'm again so thankful for Make a Wish. They have done so much for my little family. A friend of mine said, "For having such a sick child, ya'll get to have cool experiences" I know. I know.

Speaking of cool experiences, we went to a Mommy & Me Princess Tea put together by another fabulous organization, Starlight Foundation. We had so much fun (even though on the way, I bit it in the crosswalk (my heel got caught and I was hurrying because the guy at the stop light was revvving his engine) and took the skin off my knee. It was bloody and gross. Thank God Gracie was okay and I was thankful I kept her band-aides and doctor grade neosporin in the car. I cleaned it up with wipies, put on the medicine and a lot of band aides and hobbled back. Poor Gracie didn't want to cross the street again. I assured her I would be careful and she cheered for me when I crossed. She said, "Yea! Mommy didn't fall this time!" We had a wonderful time and the St. Anthony was gorgeous! The food YUMMY! Gracie at first was nervous about the princesses and then fell in love. She couldn't get enough of Snow White. Again, the whole, my princesses came up and I had to explain we share. When they would get out of her sight, she thought they had gone home to their mommys and daddys house. It was nice to talk to another mom about how great this organization is because we don't have to worry about people staring or asking questions. We just get it because we've been there. I also have so much admiration for these moms because their kiddos are even more fragile than my child. It makes me so much more thankful for my situation. I am truly blessed by my child, family and all of the special blessings like Make a Wish, Starlight Foundation & Mended Little Hearts. It's like being surrounded by soft fluffy pillows (or blankies in Gracie's case) that make everything so much easier and tolerable.

So that brings us to Sunday night...I finished watching the Lifetime movie about Prince William and Kate and I turn it to watch the weather and I see that Osama's dead. Wow! I'm still chewing on that because I hope it can bring closure to those who lost friends and families in terroristic attacks but at the same time I'm scared of the ramifications it will bring. I will just say a prayer for peace.

Easter

2011-04-25T10:24:00.000-05:00

You know your kid is getting sick when she has meltdown upon meltdown all weekend long...one so bad that she's hyperventilating. She won't tell you she's having problems breathing but you sure find out quick. So, we had a rough weekend, to the point where all weekend Max & Ruby watching was taken away and I was pretty sure the Easter Bunny wasn't going to visit but in the end I know that being 3 and having a hard time breathing is a decent excuse for second chances. We had a better Easter, especially since she slept in instead of going to Mass (which we both needed). Needless to say, the EB did come and he brought her the Jeep that Santa got on sale during Christmas...good thing because it is small and it fits right now. She drives like a maniac and hasn't mastered steering or braking. All in good time though. She calls it her "Beep".

This week is TAKS testing. YUCK! I get to be a test administrator, lucky me. I'll be glad when this week if over. We also get to go to National Wish Day this Friday at Morgan's Wonderland, which we are excited about. Fifteen more days until Gracie's cath. UGH! We have been talking about that lately. I don't want to sugar-coat it and I want her to know it's coming. I always tell her about those types of things and I don't lie about them. We talk about how scary it is and that I'll be there to help her. I also think of treats for her....like I have a Max & Ruby DVD for the cath. For the surgery we'll do some sort of surprise every day while we are in the hospital. I have also talked about why we are doing this too that she has a heart that is special and needs extra help. I know it frustrates her because she wants to be like everybody else. But we take it a day at a time. She was pushing her baby, Kiki in her stroller the other day and I thought, "Will she have the opportunity to be a mommy?" and "She can adopt if she wants.." Who knows what the future holds for any of us.

Dang You Texas government!

2011-04-21T10:45:00.000-05:00

Last Thursday started out as a great day. I went to TLA in Austin the day before. Got to meet some great authors and speak to awesome people. The morning was fabulous. And then right at the end of the day the words, "I need to visit with Shannon" came out of my principal's mouth. I knew then that I was losing her as my assistant. What I didn't know was that she totally lost her job after being at my school for 9 years. She has been with me for 7. I cried and cried and cried after my initial shock wore off. She not only is my library assistant, she steps up when we can't find a sub (she's taking classes to be a teacher), she laminates, does the morning live announcements, helps fill in for ISS, attendance and sometimes the front office, troubleshoots technology and other stuff, not to mention all of the library stuff. There will be an opening in attendance but she was told that because she doesn't speak Spanish, she wouldn't be hired...REALLY? REALLY? REALLY? I just don't get it. The counselors who deal extensively with parents don't speak a lick of Spanish and they get by...front office, tex-mex...REALLY???? I don't understand why. Hard worker, multitasker, familiar with the job, sounds like a candidate to me...I just feel so helpless and angry and sad and scared. I am losing one of my closest friends and there is nothing I can do to help. I don't really know who I am upset with...I think the bottom line is that the Texas government has really failed Texas and Texas education. We are losing some of the best. It's so scary to be in education. Heck, it could be me next year. I don't know. All I know is that I'm really sad. I know that when a door is "closed', God opens a window. I truly believe that but I wish I knew how to give comfort and reassurance to someone who had a crappy hand dealt to her. I am still praying for a miracle!

Speaking of miracles, my miracle, Miss Gracie and I went to the coast last weekend. We enjoyed getting away even though the coastline was covered in seaweed and was cold. But, my child LOVED the water and didn't want to leave on Sunday. My poor niece was sick the whole time.

I can't believe we are at the end of April. In a couple of weeks we will be having Grace's cath procedure and get the total lowdown and what's going to happen surgery-wise. I am preparing myself mentally, or at least trying to because I have a feeling it's going to be a crazy summer. We will be going on our Make a Wish trip in June and we can't wait. So, good stuff before the yucky.

Happy Birthday to Me

2011-04-02T10:35:00.000-05:00

On Wednesday, I turned 39. The night before, I received the most unexpected and incredible birthday gift from a complete stranger. She posted some orphanage pictures during the time that my Gracie was there. When I read the message on my phone, I kept hoping and hoping that maybe I would be able to see her at 6 1/2 months old. Of course, technology was not working with me that day. Finally after trying and trying to get it to come up on my phone, I tried my school laptop. I didn't think it would come up because we have a lot of filters. Lo and behold I was able to access my orphanage group and at first, I didn't see my girl. But when I flipped through to wardsthe end, I thought, that one up front sure looks like my her, could it be??? I printed it out and asked Shannon. I wanted to make sure I wasn't seeing things. Yep, lo and behold my girl was sitting in a walker with the same look she does. I was so excited. I had another piece of my baby's puzzle. That was the best feeling of the year. I am so eternally grateful to that mom. It was the best present ever.

Speaking of presents, my friend Shannon gave me a great giftcard and her words to me were this..."You it on yourself and not Grace." I love it! She knows me too well and how I have a hard time spending money on me and don't bat an eye spending money on my girl. I used to be the one who had all of the cute clothes. Now I'm a scrounger of my closet. I think we moms tend to do that but I'm learning it is okay to buy cute clothes too. I finally got my hair cut and colored on my birthday. So, it's kind of a goal to do a little better in the clothing, makeup and hair department. It hurt when my mom said that I let myself go. It was brutally honest. At the time, I didn't like to hear it. But, I think I needed to hear it and was ready to hear it. So, I'm going to get back to at least caring about my appearance!

And...another cool thing, I'm going to go see Rock of Ages with Shannon, her hubby and one of their family members. I can't wait! It's not until May but it is something to look forward to. That and the coast.

Things have been good. We went back to the doctor for another strep test to be on the safe side and she tested negative again. We think it's the oak that is making her mocoso and yucky coughing at night. I'm just praying and praying we'll keep being healthy and strong. We have surgery this summer and we all need to be healthy and ready and cute!!!!!

2011-03-21T12:36:00.000-05:00

I know it has been awhile since I blogged. I'll give you one guess why? Yep, Gracie had been sick for about a month. The last week before Spring Break was pretty rough. It all started the week after we got back from Mexico. She got strep. She took antibiotics, everything was great until the day after she finished taking her antibiotics when she got sick again. It was strep AND a fever (she normally doesn't get fever with strep). I had taken her in because of the nasty cough (which I later found out is that when she gets that nasty cough...it's her cardiac asthma that is flaring up as a result of the strep). So new antibiotic but this time she has high fever, like 103. We went to the ER on that Sunday (she was diagnosed with strep on a Friday), luckily it wasn't anything major, just a virus. Monday we go back to the doctor, new antibiotic. We go to the pulmonologist later in the week...more inhaling meds...fast forward to the following Monday, she's still not well...turns out she has a raging ear infection in her right ear. She has to get antibiotic shots as well as full blood workup and x-rays, second time in two weeks. In the end, she had to get shots Monday, Wednesday and Friday of that week and finally, we saw the light at the end of the tunnel. That whole 3-4 weeks is a blur. It was tough times. She's doing a lot better now, knock on wood. I sent her to school during spring break so I could catch a small break and try to get things done and rest since I hadn't in over a month. I enjoyed my break, especially spending time with my bestie eating pizza and this cool outdoor pizza place.

Make a Wish is planning our trip to Philly to see Elmo at Sesame Place. We are super excited. We are also going with the rest of the family to the coast in April. I am looking forward to going to the beach. So is Gracie. Texas beaches are not Playa but it's the beach right?

No Way Hosey

2011-02-07T15:02:00.000-06:00

We went to Playa del Carmen with my mom to see Gracie's "Fengxin Sister", Leilani and her family. We had such a great time. Gracie already misses her Lani and it became very clear that if Gracie could have anything, she'd want a daddy. She LOVED Leilani's daddy and he was so good to my girl, letting her climb all over him. I am so happy that they are part of our extended family. We really enjoyed our time and wished we could have had more time. This morning when we got up both us said that we wished we were at Playa.

Gracie was a great traveler. She did so well. Only one meltdown in the airport on the way back, last leg, after long immigration line and another security check...it was all about her shoes and getting them on in a timely manner. We are both incredibly stubborn people and sometimes I think I can escalate the situation through my tone. She ended up with her shoes in my backpack and her crying while we were hurrying to our gate...we made it right when they were boarding and we had a 2 hour layover in Houston International (YEP! Immigration lines were CRAZY long)...In Mexico, everybody wanted to touch her and ask about her and Leilani. Gracie came up with her own phrase while in Mexico..."No way Hosey" instead of "No Way Jose". She made the waiters laugh at a Spanish restaurant when I asked her what she wanted to eat, she said, "Enchiladas!" They made her a good sopita instead. We ate incredibly well but we lost weight because we walked so much and it was pretty humid. The beach was gorgeous and I can't wait until I have another opportunity to go back.

Playa

2011-02-04T16:00:00.000-06:00

Playa

2011-02-04T06:46:00.000-06:00

Ahhhhhhh it had to end right?

2011-01-26T21:15:00.001-06:00

Gracie hadn't been really sick since November. We saw the pulmonologist a couple of weeks ago and I made the comment that she's been healthy for a couple of months and what happens? She gets nasty nose boogies and then two days later it turns into a nasty cough. Her strep test came back iffy so we changed antibiotics and yesterday she was put on a steroid for the cough. The steroid worked wonders (I am knocking on wood as I type this) and has lessened it so she can sleep again. I, of course, got a nasty sinus infection that was the result of nasty inventory last week (which resulted in 5 boxes of moldy books!) FUN! So both of us are on meds! Never a dull moment in our house.

Gracie's speech progress is really starting to show. Instead of "houf" she's saying "house" but she's still saying "huppy" instead of "puppy". I'm really proud of her hard work. She got knocked down by her friend the other day right before I came which resulted in a bloody nose. When I walked in to get her, I saw the blood drip down her face and onto her shirt. I think her teacher was worried about my reaction but I also know that being on a blood thinner makes it worse than it is. I also understand how it is with 3 year olds...very much like middle schoolers.

We leave for Playa in a week. So much to do in so little time. I can't wait though. It'll be good for all of us!

Who's Afraid of the Big Bad Wolf?

2011-01-20T21:38:00.000-06:00

Apparently, my daughter is afraid of the big bad wolf. They read the story the other day at school and since then we have to check the car for the big bad wolf in the mornings before we go to school. She had a wolf color page that she refused to have in the backseat with her and I ended up putting it in the recycle bin to make her feel better. Irrational fears! It's interesting how she's really starting to have these issues. She is very vocal in letting me know the things she doesn't like and the things she likes. But, the one thing I admire about her is how for the most part, she faces her fears or things she can't do head on. She keeps doing it until she feels comfortable. It's really amazing. I know some adults who would rather bury their heads in the sand rather than do the "hard stuff." I think it's probably because she doesn't know better. I hope she'll do this for life. It'll help her succeed.

My lovely niece has been watching Gracie for an hour a week so I can get things done. It has been a Godsend. Gracie has also been healthy (knock on wood) since November. Today we ended having to go on antibiotics for a boogery nose that was going towards infection. We have to nip those in the bud. I think her being healthy has relieved a lot of my stress level. We aren't rushing from doctor to doctor. We are just going for checkups which is so nice.

Two more weeks until Playa. I can't wait!

Going to Playa

2010-12-29T07:11:00.000-06:00

It's almost 7 a.m. I am sitting on my rocking chair, catching up on e-mail and watching my sweet girl sleep. It is one of those rare treats when I am the one up first without having to be frantically getting ready for work. I actually got up early so I could work on my contract work. Ask me how many questions I wrote this morning? That would be 0! But I have a lot of that order done. I will feel loads better when I put that order to bed and the second order as well. Don't get me wrong, I do love doing contract work because I always learn something new. I can be a procrastinator and wait until the last minute and stress majorly until I get it done in the nick of time. I used to say I did my best work under stress. I contribute that to silly youth! I hope Gracie doesn't get that from me. It's not one of my best traits.

It's official. We are going to meet up with Gracie's cribmate in Playa Del Carmen in February (the family lives in England). I asked mom if she would like to come and she's decided to come too. We made reservations and booked our flights. I cannot wait to smell the ocean breeze and sit on the beach and just unwind and relax. I am afraid I won't want to come back. I can't wait to see Leilani and her family. It's a small thing I can give to Gracie every year. After speaking to an older kiddo who also was adopted from China, I realized how important it was for Gracie to have this link. This young lady has yearly reunions with her China sisters. I think that's cool. So, some way, some how, I will make sure Gracie will see Leilani at least once a year. I hope we can see her other cribmate as well. She lives in Canada.

I can't believe that we are almost at the end of another year. I still can't believe how much Gracie has changed and grown. It feels like time has sped up and I'm just running to keep up (and man do I hate running). Things are going okay. I really do have a blessed life. God has been exceptionally generous to me. I hope that things will continue to blossom and bloom in the new year.

Christmas

2010-12-25T21:59:00.000-06:00

We survived our second Christmas as a family. Gracie who went to bed last night at 10 p.m. was up at 6 a.m. and took only a 45 minute nap all day actually was decently behaved for being tired. She got the trike she wanted from Santa and I got a Kindle. This evening though she was in monster form hitting me, poking my eyes, and pulling my hair because she didn't want to go to sleep. I know she's exhausted when she is raging like that. She is also off her schedule which also makes her rages come on more frequently. Her school is off next week so we'll be home together. I am going to work hard on keeping a good schedule. I also need time to work on my contract work...I'm halfway done with the first order and th deadline is coming fast. I'm hoping my niece will come over and play with her while I work. I am working on finding a babysitter for like an hour or two once a week so we can get a break from each other besides work/school. It's been nice not going to a doctor's office in the past two weeks. Our copays start again in January (we met our copay deductible in June or July). We will probably meet our deducitible again this year because we should be having our second open heart surgery this summer. We also have 3 therapies every week. I'm not sure how long we will need to keep going. She really has made a lot of progress.

I hope everybody enjoyed their time with their loved ones. I did. I am very blessed to have a wonderful family. I also have great friends. I hope that all my friends who are still waiting to bring home their child from China will have great news this new year.

Merry Christmas and Gracie's 3rd Birthday

2010-12-24T17:10:00.000-06:00

Today my baby girl turned 3 years old today. I couldn't help but think of her biological parents when I woke up this morning and watched my girl sleep. I am eternally grateful to them despite whatever circumstances led her to Fengxin. She is everything to me. She is getting taller and bigger. Her oxygen saturation levels have stabilized to about an average of 80. She is funny. She likes to make jokes and tease. Her speech is behind but she is talking a lot more than before. She likes to hop places because she is proud she can do it.
Anything Elmo or Yo Gabba Gabba reigns supreme. She made friends with Santa so she is excited that he is coming and she hopes he will bring her a bike. She has a short fuse, temper-wise and gets very feisty when she doesn't get her way. Her favorite color is purple and she loves to eat hot dogs (which is why we had a hot dog luncheon birthday party with the family). I am so thankful that she is in my life and is my daughter.

That being said, I haven't blogged much because a lot in my own personal world has been going on. I hesitate to even blog about it but I think that maybe if I do talk about it, I might help heal myself and others too. I started therapy. I realized I wasn't happy and was pretty depressed and overwhelmed with all the big changes in my life. I wasn't really dealing with it...I was sort of just burying it all and moving on so basically there were potholes all over and I finally got to the point where I couldn't escape falling into one. I want to say first and foremost that I do NOT regret my decision to bring Gracie home to be my daughter and that she is very safe being with me...I wasn't even close to the point of hurting either one of us. I was just not liking me. Grace really is the best part of me right now. I am working to put myself back together and not just live to be Gracie's mom but also to be me, Jamie. I am working on being honest about my feelings and not feeling guilty about it. Nobody ever blogs or writes about the tough stuff. It's always about the nice fluffy stuff. I guess we don't want air our dirty laundry or strip our souls bare so to speak. I totally get that. I just know if I keep pretending that everything is peachy keen, I won't be helping myself out. So, things are slowly getting better. I am taking it day by day. I know that with the grace of God, it will get better.

Santa and Yo Gabba Gabba

2010-12-09T23:02:00.000-06:00

The Tree Ceremony

2010-11-26T21:56:00.000-06:00

I had such a great time this evening at the lighting of the tree in Alamo Plaza. What an amazing opportunity we had to be part of it. Thank you so much to Make A Wish and HEB. They are the best. The other young lady who also helped light the tree was such a sweet girl and an inspiration. She took my breath away with her zest for life. She just had some major surgery and she was smiling and having a blast. It's small things such as this that make me realize how truly precious life is and how blessed I am. I have pictures of the event and I will be getting more from Make a Wish so I'll post them. Grace did cry when she saw Santa but calmed down when he sang Jingle Bells with her (I told her that she said she wasn't going to cry but she still kept on crying). We also found out that HEB has indeed adopted Gracie's wish. We are so thankful to them. I was so overwhelmed by their generosity that I really felt like crying. Gracie not only got to ride in the carriage with Santa, she got a cool ornament that is hanging from the tree in Alamo Plaza that has her name on it, a gift bag from Radio Disney that was Tangled themed (she LOVES the doll with the super long hair), a $50 gift certificate to HEB and just the coolness of being part of that ceremony and the afterparty. It was an experience I will NEVER forget. On this post Thanksgiving Day, I have even more things to be thankful for.

Pre Thanksgiving

2010-11-24T22:14:00.000-06:00

Gracie has been healthy for a month...knock on wood, Thank God! It does wonders for her mood, for the most part. We went to her school (me and dad) to eat Thanksgiving lunch with her. My intentions were to leave her there to take her nap and get stuff done but she gave me the sweet face and said, "I wanna go with Mama!"and of course I folded and brought her home. Most of her friends had left and I didn't have the heart to leave her. She was so good when we got back. I helped my parents take some things to Goodwill, bought 2 pies at Sam's and came home to clean the downstairs and wash the dog. Gracie stayed out of my way when I vacuumed and mopped ad she "helped"/watched me give Hope a bath (she stunk!) That's another great thing about this age, they want to be helpers. Grace really is a great helper. She helps unload the silverware from the dishwasher. She helps put the wet laundry into the dryer and take the dry clothes out of the dryer. She likes to hand me the hangers to hang the clothes.

I am cooking tomorrow and bringing the food (well, I'm making beans and the turkey breast this year) to my mom and dad's house. We'll spend the day with them. Friday we'll be lighting the tree in Alamo Plaza (well, Gracie will be using her "wand" with Santa). It's an exciting week. If it's on the news I'll post the link so you can see.

Things About Gracie...Age 2 going on 11

2010-11-19T22:43:00.000-06:00

I was re-reading a post from last year when I wrote about 10 things I had learned about Gracie. So, I thought I would make an updated list about Gracie age 2 1/2 going on 11 (actually 3 but it seems like she's trying for 11)...

1. She has a great belly laugh and she likes to laugh especially at silly things
2. She's obsessed with the moon
3. She likes to watch airplanes in the sky
4. Her favorite thing to eat is hot dogs and to drink, Sprite
5. She likes to hop, especially down the stairs
6. She has to always have a blankie...her polka dot one is her current favorite
7. When you tell her she's silly or a turkey, she says, I no whatever, I Gracie.
8. Elmo, Yo Gabba Gabba and Max & Ruby are her favorite characters
9. She isn't much into desserts, mostly vanilla ice cream
10. She loves stickers

I can't believe that in a month, well a little over a month, she'll be 3. Time has flown by. I wonder what she'll be like at 3. She's constantly growing and changing. Before I know it, she'll be in school. All I know is that knock on wood, we've had a healthy 3 weeks (Thank you God!) and I pray it continues. Next week I'm off and she'll go to school 3 of those days. I plan on going to see Harry Potter, get some shopping, cleaning and work done. We'll see...it seems it never works out the way I plan.

I think it' s back on

2010-11-15T21:51:00.001-06:00

We met with the pulmonologist today for our follow up and we discussed the tonsilectomy. He feels strongly that we should and I really respect his opinion so I think I will be scheduling it for the Christmas holiday break. My poor girl will be so uncomfortable for 2 weeks but in the end it should help her be healthier for her fontan in the summer. Her strep test came back negative which shoots down her cardiologist's theory that maybe she's a carrier...so it looks like it's a go.

A good thing that happened today is that my Gracie gets to help Santa light the tree in Alamo Plaza a week from Friday. It's a big deal. She was chosen because she's a Make A Wish kiddo and she gets to ride on the sleigh with him. I'm super stoked but hoping she doesn't freak out on seeing Santa like she did last year. I'm trying to prep her now. I need to find pictures of him so she knows who he is. So, next Friday night, my girl might be on the news but in a good way! I think this is going to be another great family memory to put in her lifebook.

I CALM NOW MAMA

2010-11-12T20:58:00.000-06:00

We had a rough start this morning after almost two weeks of bliss...my girl has been healthy and happy...healthy is the best part. Anyways, I was rushing her to get ready. She was watching Max and Ruby while I was getting ready for work. She decided she didn't want to put on any clothes so I had to manuever her to get her clothes on. It was like putting clothes on a fish flopping on a dock. She was screaming the whole time so I turned off Max and Ruby. She calmed down enough to get her hair brushed and fixed and downstairs. She sees the leftover cheese on the table that I was too tired to clean up and she decides she wants shredded cheese to eat. I offer a cheese stick. NOPE, that won't do. Tears start flowing and then the mouth opens with the "WAAAAAAAAAAAAA!" I close the fridge and tell her it's either the cheesestick or nothing, then she throws up the "I WANT HOT DOG!" in the crying wail. We are running late, I have a 7:30 meeting and it's 7 and I still have to drop her off at school. I get her the hot dog. Because she has been a bratasaurus, no Max and Ruby in the car. That starts off another meltdown. I have told her in the past that when she stops crying and calms down I will listen. She's screaming at the top of her lungs she wants Max and Ruby and I'm telling her she needs to calm down then I can listen to her. I'm saying it at a low, calm tone. She stops crying but screams at me, "MAMA I CALM NOW!" Yeah, not so much. I can laugh at it now and at the time, I didn't think it was so funny. It wasn't until I was retelling the story to a teacher at my meeting when I heard how funny it was. I can only imagine what our arguments are going to be like when she becomes a tween or teen. I think I might need to get a precription for valium now!

But, other than that she has been doing well, knock on wood, Thank God. The second opinion really helped and her cardiologist wants another strep test while she is healthy. We'll talk to the pulmonologist on Monday. I'm praying we can put off the tonsil stuff for a year or so because it's incredibly painful at her age and I don't want her to have another painful surgery. I'm praying she does well this winter and her heart keeps on pumping strong so we can have surgery this summer. She amazes me every day with the progress she has made. She has come a long way.

2010-11-02T22:04:00.002-05:00

2010-11-02T16:08:00.000-05:00

I've been wanting to blog but it seems that I've been falling asleep next to my Gracie before I can get to it. Last night, poor Hope ended up spending most of the night outside because she didn't want to come in when I was getting ready for bed last night. I had every intention of going downstairs and letting Hope in after I had watched Mike and Molly and Children of the Paranormal that I had recorded the night before, but I fell asleep during Children of the Paranormal. Poor Hope is afraid of thunderstorms and I heard that it rained pretty hard around 11 p.m. I woke up at 2 a.m. when I heard the cold front coming through and I let her in. She looked at me like I was the meanest owner ever. I told her, "Hey, if you came in like I asked you to the first time, you wouldn't have been stuck outside for so long." I remember the days when Hope's safety and comfort were priorities for me...now not so much.

So, on the Grace front, I am currently dealing with whether or not to take out the adnoids, tonsils and put in a ear tube. We are getting a second opinion next week and I'm weighing in the pulmonologist's opinion (and cardiologist...now that I think about it he hasn't called me back! NOT COOL!) I know a lot of people think it's a slam dunk sort of thing to help cure her issues with strep throat but when you have a heart kiddo, you have to be more cautious. This procedure would have her in ICU at the end, not coming home. It's precautionary but it's PICU! The whole idea of PICU gives me the willies. We'll be there this summer for a few days so I really don't care to see it sooner. The other thing is that the procedure would be done at another hospital...the one that gave me someone else's meds and an EEG when I had the chicken pox (yeah, didn't need the brainscan...someone else's)...so I'm a little leery. I'm taking my time making this decision and making sure all of her doctors are on board.

Halloweeen was a fun time for Gracie and her cousin Brennan. They went trick or treating around his neighborhood. It was incredibly hilly and she walked most of it. She wouldn't let me hold her. Finally at the end of Brennan's street, she asked me to pick her up. I did. I was proud of my little Mulan. Yep, that's who she dressed as. On Saturday, I dressed her as Kai-Lan because she likes wearing her hair the Kai-Lan way. When she has her hair that way she says, "I no Gracie...I key-lan." Crazy girl!

Not Again...

2010-10-19T21:32:00.000-05:00

Yep, it's back...that nasty strep along with a double ear infection and wheezing on her right lung. So back on antibiotics (it's been what almost 3 months nonstop) steroids and breathing treatments. It sucks! I feel so helpless and horrible that she is this sick. I am supposed to call the ENT and the pulmonologist tomorrow and see if they can also see her since she is a high risk. I'm going to take off and we're going to have a pajama day unless we get into those doctors tomorrow (that's wishful thinking). I'm praying it gets better and that maybe we can find a solution that can just stop it all. The poor girl can't cut a break. It's when she's sick that I am so thankful that we cosleep. It's easy for me to check on her or give her meds or breathing treatments. I know there are some folks who think by 2 or 3 they should be in their own bed but for our situation, it works out well. The biggest problem we've had lately is that she wants the lamp on because she's starting to have some night fears so I try to turn it off after she falls asleep but usually around 2 am she'll awake and say "light on" and so I turn it on and put on my sleep mask and go back to sleep.

Let's hopeand pray that this set of meds kicks everything to the curb and that she heals and feels better.

I am that kind of mom...

2010-10-16T17:51:00.000-05:00

I never ever thought I would be that kind of mom but it turns out that I am. An Elmo show is coming to town next month and I got tickets. I ended up getting front row tickets which is awesome. I think I will only get to be on the first row for kiddie events. So, Gracie is going to get to see Elmo and Muno within a few weeks of each other. My poor mom is coming with us. I know she was bored at the Storytime Live show so I hope the next two shows are way better.

The nasty cough is back and it is keeping me up and of course she's not getting the best sleep. We will be seeing our fave doctor on Tuesday so maybe we can get it under control. I think it's the allergens in the air.

My blood pressure has been on the higher side which concerns me. ack of sleep, stress, extra weight. I know I need to lose weight but frankly I'm too tired to do anything about it. I put back on the weight I lost since coming home. I know I can lose it but my mind isn't there. I need to get it there fast. My goal is to lose about 30 lbs before Grace's surgery this summer.

Sleep Deprivation

2010-10-10T22:18:00.001-05:00

Sleep is a luxury with a toddler. I am finding that lack of it has taken its toll on my health but unfortunately when you are a single mom, it's part of the job. Gracie and I went to a fantastic party for one of my friend's 40th birthday party. It was great that there were other kiddos for G to play with. She had so much fun running and playing, especially with my friend's 8th grade daughter. I had so much fun socializing with adults on a Saturday night. I'd forgotten what that was like. I even had a beer! We stayed until 9ish. The big girls didn't want Grace to play with them anymore (they were afraid the ball was going to hit her) and that basically started G in meltdown mode. She screamed/cried all the way to the car and all the way home. You would have thought she would have fallen asleep...nope...she kept asking for my friend's daughter saying, "My Seph-neee" She finally fell asleep only to awaken a few hours later and it took another hour to fall back asleep. She wants the lamp on. Nightlights, which we have in our room aren't enough. I wear a sleeping mask to sleep in now. This morning we woke up almost at 8 a.m. which is later but boy did I feel horrible, like hung-over horrible. Lucky for me that we were both able to take a 2 1/2 hour nap this afternoon. I still felt awful! Oh well. I didn't get done what I needed to do this weekend but I did get to sleep a little. I'm learning that plans are great but you have to learn to be creative and flexible in accomplishing goals. And I'm learning that sleep when you can because you never know when you are going to get to do it again or it your sleep will be interrupted. It's all part of being a mom.

Busy Times

2010-10-05T21:40:00.000-05:00

Things have been so incredibly busy. Grace is going to be in two heart calendars this year...the local mended hearts calendar and the national Saving Little Hearts. I think it's pretty neat that she gets to be part of these two organizations. She's also getting her Make A Wish to meet Elmo (at Sesame Place). I think we are incredibly blessed that we get to do these neat things. Of course, it sucks that the reason she gets to do these things are because she has some pretty serious health issues. We still have one more surgery and we are trying hard to stay healty. Cross your fingers that she doesn't get sick again...we finished antibiotics (for the 4th time) yesterday. She was cranky yesterday and this morning but in a great mood today. I don't think the allergens help. I can't wait until she has her second surgery and gets older so that her immune system is built up and she doesn't catch everything. I'll be glad when we aren't visiting our doctor every other week, even though we like her a great deal.

Congratulations to My Friends Seeing Their Baby's Face's for the 1st Time

2010-09-29T22:11:00.000-05:00

I am super excited for my May LIDers who are finally getting to see their child's face for the first time in 4 years since they started the journey. If I hadn't gone the waiting child route, I still would be waiting, the next in line and probably totally sick to my stomach. I am so proud of them for their patience and they are soon to be united with their children. YEA! I pray they get speedy travel approval and that all goes well.

They thought the 4 years was a hard wait, this one is even worse because you know what your baby looks like! Keep the picture on you at all times and yes, you will always keep thinking back to your child. I don't think it ever stops!

I shoulda....

2010-09-27T21:33:00.000-05:00

I should have known better to let her eat the spaghetti and pile on the cheese and have some of the gooey garlic toast. I should have known that all her meds plus what she ate plus the horrid evening cough would most likely make her cough so much when she falls asleep that she throws up. I should have known that when she was falling asleep, she wanted her belly rubbed and that her oxygen sats weren't the best. I should have known by her more "devilish" behavior that she wasn't feeling so great. So, I have a little one who threw up on her blankie and three times in my hand and who is now sound asleep on my side of the bed. My mommy sense must be a little off and experiencing technical difficulties. The good thing is that she's not coughing up a storm or complaining her tummy hurts. I am learning about what not to eat when one has the nasty coughs and is on yucky meds (Grace says, "I no like this one") I hope she's okay for the rest of the night. I am hoping it will be a good, good night (in the lyrics of the great Black Eyed Peas).

We got a call today from Make A Wish and it looks like our wish will most likely be to Sesame Place and not to the Beaches resort in Turks & Caicos. Miss Thang was pretty upset she will not be meeting Elmo at the beach. I told her it would be either meeting Elmo or the beach. We looked at pictures of both and she decided Sesame Place was what she wanted. They aren't open during the school year so it looks like it will be a summer trip but it will have to wait as Gracie will be having her second open heart surgery this summer. I am just so grateful to Make A Wish that they will make my girl a great memory. It's an awesome thing to do for a person.

Mommy's Sense

2010-09-27T06:08:00.000-05:00

I have learned that like Spiderman, mom's have a sixth sense when it comes to their children. As a new mom, I have seen it with others, but I wasn't sure how mine was developing. Turns out, I definitely have that mommy sense. Let me just start out by saying this past school week, my daughter has been back to her Grace-face self and not having the serious meltdowns. It has been heavenly! Thursday evening, she wasn't really eating a lot and I asked her if her throat was hurting. She said yes. Hmmmmmmm....there was also a report of strep in her class that week, she was off antibiotics since Tuesday.....AND Friday morning she had that smell on her breath when she has strep. I took her to see our favorite doctor, Dr. Ohhhhh as Gracie calls her because she can't say her full name and she tested positive for step again. Poor baby! So, we are on another round of antibiotics. This will make 8 weeks on antibiotics. And Saturday night, the cough came back. I gave her so benadryl last night which helped a bit but I think I am going to have to call the doctor back and let them know. Aye Yi Yi! She is sleeping though and I'm trying hard to let her sleep as long as possible.

I also am sick but am in recovery. Walking pneumonia has totally whipped my butt but I am feeling better, at least breathing-wise. I'm just exhausted easily. So, the two of us are sickies. But the thought that terrifies me is that if she keeps getting sick, they are going to want to do the surgery earlier. We are not ready for that. Say a little prayer for Grace's recovery and that we can figure out what's going on and why she is getting sick over and over. Her hemotologist said that her tests came back normal so we aren't sure why the test was irregular before. I guess that is a good thing but I wish we had some clear cut ideas about why she is always getting sick and why it takes so long for her to heal. I am learning so much about the body systems and how they work that I could start my own doctor practice! Not really but it's interesting how much my focus has changed and what I research has changed. in a year. It's going to be a day at a time week. She has speech and occupational therapy this morning and I'll try to make an appointment this afternoon to check out her cough.

Does She Speak English?

2010-09-22T06:06:00.000-05:00

When Grace and I were leaving her new school yesterday, another mom approached me and said, "She's sooooo cute...." and in the next breath asked "Does she speak English?" Okay, the protective mom in me flashed briefly and wanted to say, "Does your kid?" Instead I said, "Yes, she speaks and understands English. She has been home for over a year." My mom asked me if I was bothered by the comment but it's more annoying. People are gonna ask stupid questions like that. It's just people and it's their ignorance. I've gotten a lot of those stupid questions, "Is she yours?" "Where is she from?" "Is she Korean because my whatever adopted a baby from there" and I did get the dreaded "How much did she cost you?" I choose not to get upset and answer them in a nice way. Most of the time the question ended with that question and either the comment of "She's so beautiful" or "What a Lucky Girl!" I always say she is beautiful and we are both lucky girls to have each other. My beautiful girl is going to have to deal with these types of questions and she looks to me on how to handle them. If I get all bent out of shape, then most likely so will she.

Her new school is going well. She is adjusting and is quiet and clingy when she gets home but I know it will take her time. It's a big change. She is at least not kicking the heck out of me when she goes to sleep. Last night she wanted the lamp on and the TV on. So, she started watching Glee with me but then fell asleep halfway through. I'm still the walking dead with walking pneumonia. I walk a little and then cough my guts out. I'm doing better though than the day before and I actually made it the whole day at work. We go see the hemotologist on Thursday and I think he is going to take more blood. I might just bring Gracie back to school with me and then she can stay with her Mimi and Pa after their doctor appointment. It just depends on how it goes.

2010-09-19T19:41:00.000-05:00

I have walking pneumonia and trying to heal and rest with an active 2 year old don't really go together. My sister and my niece took her to Mommy &Me dance class yesterday. I was so glad they did. Both girls had a good time. My biggest issue is feeling so worn out doing little things. I need a lot of rest. What makes it worse is that Grace's sleep issues have become worse. She doesn't want to sleep and when she is falling asleep or half waking up, she kicks and hits. She's not really totally with it. I think something is up but I haven't quite figured it out yet. She HATES to go to sleep. She is very active and funny, especially when she yells in her sleep, "NO HOPE! MY HAM! MY HAM!" (Hope is our dog). My daughter does love her ham. We talk about it in the morning and we talk about how we keep the ham away from Hope and that Hope sleeps downstairs.

Grace qualified for speech in our school district and will start receiving services when she turns 3. The ARD hasn't happened yet but it should soon. Grace starts her new school tomorrow. I think I am more nervous than she will be. I hope it's a great day.

One of those weekends...

2010-09-12T23:05:00.001-05:00

My beloved Gracie, who has been on antibiotics for about a month and was off for one day ended up testing positive for strep yet again. I, also went to the doctor on Friday and I have a bad sinus infection and a crackle in my right lung. This makes for one very tired mama and one cranky little girl. And when the empress gets cranky, she gets downright mean and screechy. And, she's feisty and tenacious in her meltdowns...girlfriend can outlast people with her shrill shrieking. I was literally in tears while waiting to get her new antibiotics (in the Walgreens drive-thru) because she was melting down big time. Those are the days when I just feel so emotionally drained. It has been like this all weekend, on and off. Whenever she doesn't get her way or if I don't give her my 100% attention 100% of the time, she would lose it. Surprisingly, I have been calm and I either put her in the naughty chair when she started kicking and hitting (especially when she was hitting the dog and pulling her fur) or just holding her and walking around with her. I just held her and let her cry...she didn't want to be held sometimes but I would tell her I wanted to hold onto her until she got calm and I would put her down when she was calm. I wouldn't say anything to her but hold her closely to me and walk around and remind her that when she was calm, I could put her down. I wanted her to be safe. And when she was done, I would ask her if she felt better and she would always say yes. Then we would talk about why we shouldn't hit the dog or that Mama needed to...Then I would tell her to say sorry to Hope or me and if it was me I would say, I'm sorry that you were angry. I hope that you feel better and I love you. I also think part of her meltdowns stem from lack of sleep (she is in that antinap mode on the weekends...we are trying) and the steroids she is taking. I really should be sleeping right now as she is asleep, but I needed to kind of unwind and catch my own "breath" which is kind of appropriate since I have been having breathing issues and am on an inhaler. It feels good to unload that. Don't get me wrong by any means, I love my daughter very much but it's times like these that I get so drained and I need to find an outlet. I haven't discovered it yet. I have a lot of guilt, which I put upon myself because I chose to be a single parent. I chose it and I chose my daughter so in my way of thinking, it is my responsibility to deal with it. But, I am slowly learning that it is okay to ask for help. I know that parenthood is valleys and peaks. I know that my daughter has a lot on her plate physically and emotionally. There are a lot of wounds and scars that I can't see. I just want to try to help her get through them. She just had a night terror and I ran quickly to the bedroom to make sure she was okay. God is definitely teaching me patience and understanding with my daughter.

On a brighter note, Grace has been potty accident free all weekend and has been wearing panties all week. Woo-hoo! Make a Wish came this week and my daughter wished to meet Elmo at the Beaches Resort in Turks & Caicos. I hope she is able to get her wish. Heck, we both could use a little vacay in the Carribean.

Good News & Stress

2010-09-04T22:17:00.000-05:00

My life as a single mother is never boring. It's constantly changing and it's always busy, even when you are just hanging around. We've been blessed lately with good news...Gracie got into Brighton which has a learning center for children with both special/non special needs. We've been on the waiting list for a long, long time but we finally got a spot last week. I cried in making the decision because we really love her teachers where she's at but where she's going she'll have more specialization, more experience with medical kiddos and it's signifiantly less than where she's at (it's subsidized by federal government). Grace goes there once week to meet with her early childhood interventionist. So, I think this whole thing has her a bit out of whack. She's having problems going to sleep and waking up early and incredibly mean. We're having a lot more meltdowns. Time out and taking away things aren't working anymore because she's kicking and hitting in her anger and she doesn't have the language skills to express what she's feeling (and she probably doesn't even know why she's so mad either). So, I'm doing a holding time in of the count of 30. Like whe she kicks me I firmly but gently hold her legs and count to 30. Then when she doesn't immediately kick me I tell her thank you for not kicking me. I like that. I always tell her I love her and that I can see that she's angry and upset. We are working on trying to find the words. This is more successful that the other strategies, at least at this moment. I'm finding that I have to not get upset even when she's kicked the heck out of me, slapped me or pulled my hair. She grabbed a big ol fistful of hair this morning and yanked away when I was alseep. I don't know if she was totally awake then. She's started her night/nap terrors for the past couple of days. It has been pretty tough for me. I feel emotinally drained sometimes because I'm trying to help her and sometimes I don't feel so successful. I know it's going to take time but it was just a tough day today. I was exhausted.

But, on a brighter note, she is really progressing on potty training. She's telling me when she has to go and tonight she's wearing her training panties (not pull ups) and her Muno panties on top of them. She even went at the restaurant tonight. I was so proud of her. I'm also proud of her in Mommy & Me class. My girl can roll like a hotdog and bear walk like there's no tomorrow. I think she likes the tumbling part more than the other part. We might end up trying tumbling class, maybe next year.

Make a Wish called today and they are coming over on Tuesday to interview us about Gracie's wish. I told them that she loves Elmo, the beach/water and Yo Gabba Gabba. Interesting combo I know. I've asked Gracie about what she wants and she sometimes will say "I dunno" and shrug her shoulders. She said tonight she wants Elmo and the Beach trip. We'll see. Everytime she sees the promo for the Beaches resort that has Elmo, she gets excited. So, who knows what'll happen. Keep your fingers crossed that it'll be a happy wish.

Darn those expenses!

2010-08-30T23:17:00.000-05:00

Can I just say how thankful I am that I have a great job and how even more thankful I am for my friend who helps me get contractual side work? Daycare and medical expenses are eating my lunch, literally. I understand how people can get into major debt if you don't stick to your budget. I'm going to have to make some major sacrifices including Gracie's Mommy & Me dance class so that we are not continuing to delve into our savings. Needless to say, I am counting down until Gracie is not in daycare anymore (or less expensive Ready! Set! Start!). I am also praying that my car can last for another 2 years (it has had a couple of minor issues this past couple of weeks) and that my parents' fridge that they gave me keeps on trucking for at least a year more. There was a time when I was considering putting Gracie in Catholic school, but financially, I'm leaning more towards public elementary school and then maybe private middle school. Who knows what will happen then. I think I'm gonna buy a lottery ticket tomorrow.

Our First Mommy & Me Class

2010-08-21T19:46:00.000-05:00

We loved Mommy & Me Dance class today. I actually broke a sweat. We hopped, stretched, went side to side, all great things to help Grace with her gross motor skills. She has started her night terrors again but at least the coughing has subsided. I think the change in schedule as well as moving into a new class has freaked her out a bit. I still think she is having a tough time adjusting to school full time. Speaking of school, I love my new principal. She is so approachable and understanding. I also like our new assistant principal. I hope it'll be a great year. Tomorrow we are going to see StoryTime Live. I hope she enjoys it.

First Week Back

2010-08-13T22:16:00.000-05:00

It has been a roller coaster week back at school which is a good thing because it kept me incredibly busy. We got a new principal and assistant principal, both of which I like. So, it's kinda crazy because everything is in transition, including my child. She really had a hard time going back to school full-time. She cried the first two days but now I reassure her that I will be coming to get her. The other crazy thing is that the cough is now stronger than before. It looks like I'll be calling the pulmonologist for antibiotics. I don't know if it will help though. I've already had to run out of this room twice while typing this entry because she was hacking up a storm in her sleep. I worry because it always signals lower oxygen saturation levels which might lead to an open heart surgery in a month or so. I really would prefer the summer when she gets healthier and I can take care of her for two months. So, I'm really praying for that.

Grace riding the train at Morgan's Wonderland (at Mended Little Heart's Anniversary Celebration)

I was reading the singles' forum in the Rumor Queen and the topic was how do you afford a second child being a single parent. I, too, wondered that myself. I know how difficult financially it has been with one child. Of course, my child is special needs but even so just to even consider another child at this stage in the game is something I can't wrap my logicial side of my brain around. I would love for Gracie to have a sibling but I know I can't afford it at least not now. And emotionally with all of the medical stuff, I think she is the only child for me right now. We (she and I) talk about babies and siblings and there are days she wants one and other days where she's good being an only child. I read a Time magazine article the other day about only children and it turns out that they are not socially maladjusted as some studies concluded (like from the 60s or 70s) and do rather well. This is due that the resources go to that one child. In my case, my sweet girl is going to start Mommy & Me dance class next Saturday and she is also going to see Story Time Live and Yo Gabba Gabba. Yep, all my resources go straight to my daughter but I wouldn't have it any other way. She is my heart and makes me a better person.

Grace at Morgan's Wonderland (Mended Little Hearts Celebration Day)

The Cough is Back

2010-08-04T22:41:00.000-05:00

I Love Watermelon at My Mimi's ad Pa's

I jinxed myself...said several times today to multple people that we've had a healthy summer but now I have to take a step back. Gracie started the night coughs last night. YUCK! So, that means we are now on yellow on our asthma action plan. I have a funny feeling we'll be progressing to orange in the next day or so. I'm praying not. I have to go back to work on Monday. My daughter is totally stressed and tells me to "stay". Then she goes on with "My Momma". We are starting two word sentences which is great. Her favorite words/phrases are, "Mine", "No!" and "My Turn" (which really means it my turn now no matter if she just took her turn). She is going through a "My MiMi and Pa" phase in which she cries hysterically when we leave my parents' house after a visit. I think she's upset because I am going to be leaving her more now at school and she feels like the rug is getting ready to come out from under her. We've had a great summer of bonding. I wish I didn't have to work but as a single mom, I gotta. Maybe I need to start playing the lottery.

The Cough is Back

2010-08-04T22:35:00.001-05:00

Progress

2010-07-27T21:34:00.002-05:00

She pet the dog! Gracie actually is now petting Hope. She doesn't want to pet her head but she likes to pet her back. It happened because my wonderful nieces and nephews were petting Hope and she decided to try. That's one of the coolest things about my daughter. She really tries to deal with her fears head-on. Sometimes it will take a lot of time, but she keeps trying to push through it. She's dealt with pulse oxs, blood pressure cuffs successfully. Now she's working through her dog fears and the waterfalls in the kiddie pool. I am so proud of her.

She has been going to the pool with me a couple of days a week. She says that it's more fun with her cousins. So, I try to bring them along. We also signed up for a Mommy & Me movement class. We bought her pink leotard, tights and ballet slippers. She loves putting it on. Maybe I should get a matching outfit!

We are going to see Story Book Live in a few weeks. I hope she enjoys it. I know I will since I watch so much Nick Jr. I've learned that you have to embrace it or you're going to be miserable. I am really trying to stay unmiserable so I have decided to embrace them all.

I got the report back on the possibility of finding Grace's birthparents. It basically says that the only way to find information is to find her finder (I have his name) and/or have someone check the records of the hospital and health center. I feel it is in my daughter's best medical interest if we do have at least an idea of who her birth parents could be. I need to figure out where to go from here and soon before the trail gets cold.

I go back to work in two weeks. YUCK! But, I am going to have a better attitude and enjoy the school year this year. I think I am finally getting better footing. Of course life with Grace comes with lots of surprises. I pray they are good ones.

Panic Mode

2010-07-16T21:03:00.003-05:00

I HATE panic mode. I hate it because I lose all control of myself. Yesterday morning, I hit panic mode. The night before, we came home from the pool to a hot house. I thought to myself, this is strange...it was working earlier. I hear the air conditioner on...so I go outside (mind you, both Grace and I are in our wet swimming suits with our coverups on) and check the outside unit...the fan isn't going. Great! I check the breaker box in the garage...the masterbedroom was off, so I turn it back on...I go outside...still nada...call Airtron...yadda, yadda, yadda...they have me check the outside breaker and reset it. I do it and I tell them in the conversation that I do need a person to come out and check because I have a child with a heart defect and the heat is not good for her...his last words...I'm gonna send out a technician tonight unless you call to say that it came back on...this is about 8 p.m. I hear nothing for over an hour. Poor Gracie is exhausted and falls asleep in the rapidly heating up room...I call Airtron again at 10 p.m. for an ETA...they say, "We have you scheduled for tomorrow between 6PM and 10 PM...ARE YOU SERIOUS? So, I explain to her about my child and I'm thinking about my kid and they tell me that they have no technicians...finally she says they can get someone at my house but not until after midnight...REALLY? They can come in the morning...so my fried brain thinks I can go to my mom's house for the night and spare my girl from the heat...forgot that she is FAST asleep and waking her would NOT be a GOOD thing...so I tell them okay but I want to be the FIRST one...yes they assure me. So, I open all of the windows. All ceiling fans are on high. We make it through the hot night. I gave Grace ice water several times during the night to cool her down. I get her to school so she can have AC at 7:30ish and I come home. I call Airtron again to make sure I'm first...YEP, he will call me when he's on his way but he's loading up his truck. Okay...thinking maybe 30 to 45 minutes. I get a call about 9:30ish...still no Airtron but the daycare saying Gracie threw up 3 times...I burst into tears...CRAP...It's my fault that I didn't wake her up or make Airtron come after midnight...the fools still haven't called...I'm a bit overwhelmed. My sister calls I can't say one word because I keep balling...so I call Airtron and ask them and tell them, my kid is sick...probably because she slept in a hot room and ya'll were supposed to come last night and didn't and you should have been here at 8 am fixing the problem...(OH did I mention I had paid over $1700 for a 10 year maintanance plan?) so they wanna know how long it's going to take me to pick up my sick child when they could have already been at my house and done (because when they did come it was a fuse and it took about 30 minutes!)...so I pick up my girl and they come like 5 minutes after we get home.

It was such a frustrating day that later on Grace had a major meltdown because she couldn't watch Yo Gabba Gabba. It was one of those days. I probably needed that cry and I probably should have finished it...it has been one heck of a roller coaster ride summer emotionally and I don't know if I really have emotionally have come to terms with everything that has happened. It's days like these that I question my sanity it becoming a single mom. But it's days like today when everything goes well that assures you that you are doing okay as a single parent. Nothing beats one of those days or the hug or kiss from your child.

I only have 2 more weeks of vacation left. I promised myself that I was going to take care of myself and be a better librarian this year. I also am considering working on my doctorate...it won't come to pass until next year...the program is in its planning stages. Don't know what advancement it would bring me but I think the whole idea of lifelong learning is exciting.

Single Momhood - Me Days

2010-07-13T22:03:00.003-05:00

I send Gracie to school two days a week during the summer. Part of it is for her to have the regular scheduled thing and keep in the groove of school so it's not such a hard transition when I go back to work in August. The other reason is so I can have some "Me" time. I am learning, and it has taken me some time, that this time is incredibly important when you're a solo parent. I do all the things I can't do when Grace is around. I also do things for myself like go to the movies, get a pedicure, go to the outlets, that sort of thing...fun stuff. I also will sleep a little extra. I get a little extra hour and a half on Wednesdays because she goes to a ECI program and works with the Early Childhood Interventionist. It's a gift of time to myself which I cherish. During the school year, my "Me" time is when Gracie goes to sleep. I don't get a lot of time but it's enough. I highly recommend single moms making sure they get some time to themselves. We have to do everything and we are on 24/7 without someone to spell you. My daughter is incredibly high maintainance....not just because of her health issues but she wants my attention ALL of the time. She is now starting to play a little on her own but she still prefers me to be right there. We are working on that. I am thankful when I can get a little break. I always come back refreshed and excited to see my girl. When I'm away from her I do miss her but I know I need a little breather to get back into the game of single motherhood.

King size bed and more medical drama sort of

2010-07-10T21:44:00.003-05:00

I decided to upgrade my bed from a queen to a king because my daughter is a bed hog. When we went to Houston we slept in a kingsize bed and for once I was able to sleep without being kicked or hit or rolled on. So, I found a beautiful bed and a super comfy mattress set from Rooms to Go. Of course the day it's delivered it was raining and the a/c guy and the Salvation Army truck all come at the same time. The delivery guys had a heck of a time trying to get the mattress upstairs. I put my old bed, Grace's changing table and the ergo carrier on Craig's list and I sold them the next two days. That was exciting.

I got Grace's passport, or should I say applied for her passport on Friday. I was worried about the waittime so I traveled to New Braunfels which is a lot smaller and to their district clerk's office because I figured most people were going to post offices. I lucked out. I walked in and was helped immediately. Grace behaved beautifully. She is going through her terrible 2 stage which everything is hers and she's not big on sharing or doing anything that isn't her idea. She's pretty stubborn and I'm thinking that it's gonna be "lovely" when she gets into her tweens and teens.

Friday I also got the news that her bloodwork came in and there were some deficiencies in her immune system. I really didn't understand the spectrum or tests but our pediatrician is concerned enough to send us to a hemotologist. So, we're going to add another doctor to our stable of doctors. So now we have a pediatrician, cardiologist, cardiothoracic surgeon, ENT, pulmonologist, genecticist, speech therapist, occupational therapist, physical therapist, ophthomologist, and now a hemotologist. Holy cow.

2010-07-02T23:03:00.004-05:00

I should be in bed but I'm not quite sleepy enough. The rain bands from Hurricane Alex are hitting again and I'm distracted by the rain hitting the roof. The past couple of weeks have flown by and lots has happened. Grace won't be having surgery this summer. The only reason they are considering the early Fall is to beat flu season. But, the cardiologist said that if she continues to do well on this medicine, then we can wait until next summer. That is what I am hoping and praying for. So, I've been trying to downshift from that stress and focus back on the things I need to get done at home. I bought a kingsize bed since my lovely daughter sleeps with me and is a total bedhog. She was kicking and I wasn't getting any sleep. The new bed comes Thursday, and it can't come fast enough. Last night I got hit at least 3 or 4 times, twice in the head.

Grace and I went to Houston to be on a waiting family panel. I was the only family who had some negative things to say...I wouldn't say I said don't do it but I said to expect the worse and be prepared and that it wasn't easy. I really dislike when parents who have a child with a CHD minimalize that special need as something minor. I'm super glad that your child only has to go to the cardiologist once a year and the hole will close up. That's awesome but that isn't alway the case. Then parents who check that off get a child who is only supposed to have a small hole actually find out it's larger and there has to be surgery and then they feel that this wasn't what they signed up for. I just want all parents who consider CHD to remember that it's major and that there might be the possibility of surgery. Do the research and even then it might not turn out the way you expect. Grace's fix should have been simpler and one time...didn't happen that way because of the anatomy of her heart. I'm also not saying it's a bad thing either. I just want people to be educated about whatever special need they are considering and be honest about what they really could handle. Gracie is the best thing that ever happened to me. She was meant to be my daughter. I just don't think I realized EVERYTHING that was necessary such as all the doctor visits and how minor things are kinda major for us. She is getting better. The lisenipril is helping her majorly. She's feeling better and her naughty nature is coming out. She is in the terrible 2s! She does what you don't want her to do and smile and laughs. She broke a vase at the furniture store and had a grin on her face when she did it. Thank God I had already bought my furniture. Everything is "hers" and every answer is No. She doesn't like to share and it has to be her way. She was ticked at me last night for not having Sprite in the house. But she is also showing her funny side. She laughs more and makes silly faces and jokes. She likes to sing and dance around. She's an amateur beatboxer thanks to Biz and she told me she wants to play drums. Her language is getting better (we're still behind). I see some of my mannerisms showing up in her body language. And her newest word is the Southern greeting of "Hey!" She drives me crazy but I wouldn't want her to be any different. She's my Gracie.

Heart Update

2010-06-24T22:45:00.002-05:00

We were able to talk to the heart team today. It seems that everything looks good and they are happy with what they saw. There was some leaking in one of the valves but they weren't overly concerned. I do love Dr. Hussein and he makes me feel better. They want to possibly do the Fontan in early fall before flu season. Of course, my problem is the time off. I'm a single mom and I don't have the days. The doesn't seem to matter that much to Dr. Calhoon but they will try to "work" around my schedule. He made a comment that she will be okay during the day if I have to go to work. Yeah, nurses have a lot of time to babysit my child. I just don't want to even think about that. There is a possibility that we can wait until next summer. The team doesn't want to make that the plan. They want to take it a few months or a month at a time. I want what's best for my daughter but at the same time, it stresses me out thinking of having a surgery during the school year and not having the days or someone to watch her afterward. That's one of the sucky things about being a single mom is that you don't have that luxury of having at least someone else to share this "burden". I just have to have faith that it will work itself out and God will always provide the right time and will get me through it. He always does.

On a brighter note, the high blood pressure meds seem to be helping. She is happier and I can tell she's feeling better. She's laughing a whole lot more. I don't know if it's the meds or if it's because we are together alot more (she only goes to school 2 times a week during the summer). Maybe it's a combo. All in all, things could be a whole lot worse. There was a little boy who was in the clinic who was preparing for a heart transplant. Yikes! That makes our issues so small in comparison. I'm gonna say a little prayer for that sweet boy.

Happy Father's Day and Yesterday in the ER

2010-06-20T21:18:00.002-05:00

Gracie had been having chest pains since Thursday night. She was waking up crying...not night terror crying but pain crying. She wanted me to rub her chest and she said it hurt. I gave her the purple Tylenol which helped but it seemed that she was asking for the purple almost every 4 hours. That isn't like her. She doesn't complain about pain rather she becomes a troll and acts out when she's not feeling great. I had called her cardiologist and he wasn't too concerned. I was concerned after several dayscrying, tylenol and chest rubbing so we spent Saturday afternoon in the ER. I just wanted to make sure for my own state of mind that her little heart was okay. After 5 hours, it turns out she is okay. I was relieved. I think what frustrates me is that I don't know a lot about these things and her particular cardiologist doesn't really reassure me. It's almost like a blow off. She's doing better. We've only had one call for Tylenol in the last 24 hours. So, I'm waiting to hear from the doctor about her surgery this week, hopefully Tuesday afternoon.

We had a good Father's Day with my dad. We are lucky to have him and I hope he likes the Muno shirt we made him.

Yo Gabba Gabba is her medicine

2010-06-17T23:19:00.002-05:00

Who would have thought that a children's program can help make a child feel better? Well, it seems that Yo Gabba Gabba is Grace's special medicine that helps her. Right now she is obsessed with the doctor episode. We are watching it at least once every day. I had to convince her to watch another one but she ended up asking for the doctor and "Teeeee" (totee). It's probably because she can relate that someone else feels horrible and has to see a doctor. Lord knows my girl sees enough of them. So, one thing I never ever thought I would ever say but Thank You God for Yo Gabba Gabba.

The Cath Experience

2010-06-16T22:07:00.003-05:00

Yesterday my baby had her first cardiac cath. It won't be her last. We had to be at the hospital at 7:30 a.m. We got there early and the Kidstop was full where they were registering kiddos having surgeries. But, we were in the prep area in about 45 minutes. We met with the cath doctor who is awesome and the anesthesiologist. He said if he saw anything wrong, he would try to fix it. I think that should have been my clue #1 for the day. They gave her some medicine to relax her and she was loopy watching Yo Gabba Gabba (which I think is how it began in the first place so I think it was even more enjoyable for Grace...last thing she said to me before they put the mask on her was Mama...Muuuuuuuuuunnnnnnnnnnnoooooooooo). So, the doc tells me to give him about 3 hours. That's a super long time. We are in the waiting room on the 5th floor and we are the only ones until a homeless couple comes in and plops down, changes the channel and starts discussing how she told the cop that she didn't want to press charges even though this man she was with had hit her and she didn't want the man locked up and every other word was a four letter word. And she says that he can marry her now. Then they decide to leave because she wants to see if the shelter/free lunch has sodas. When they come back an hour or so later she is talking to herself and singing in the bathroom...they only stay for about 15 minutes to go back to the shelter. Apparently, this happens a lot. It's kinda scary but the nun said they couldn't do anything about it. From a safety standpoint, I think they should. Anyways, back to the cath, they find a vessel that is leaking and so they put in 8 coils to close it. He finds that there is a leaky valve too and other vessels but they are too small to get to. So, 3 hours turns to a bit longer. The doc says everything looks good and he's happy with what he saw. I don't think they know what is causing her low sat levels and they don't know what is going to be the best route. So....they are going to present her case next Tuesday to decide about surgery or what intervention will be done/not done. I should know something next week. Gracie did well. She was really groggy until about 3 a.m. and we had to stay in IMC overnight for observation where she was constantly desatting. I hate the alarms that go off there but the room is private, we had our own bathroom and I felt better that she was being monitored even though it was a pain to stay overnight. I think subconsciously I didn't pack a lot because I wanted to go home yesterday but looking back, I'm glad we did. She's been on and off fussy today which I totally get. Hopefully she'll feel even better tomorrow.

Two other things...her cath was captured by the local fox news kabb 29. It was very freakish seeing your child's torso knowing what was happening...the pediatrician called as we were leaving the hospital...Grace tested positive for mono. They did blood work last week as a just in case (she tested positive for strep)...so had to call the cardiologist...hoping it will not affect anything. Oh well...I think Grace needs her own soap opera about all the medical issues one little person can have in 2 years of her life...but it could be a whole lot worse. We truly are blessed by God and He never gives us what we can't handle. If I knew I was going to be a medical expert, I should have gone to medical school.

Family Day - Note to My Girl

2010-06-07T21:49:00.002-05:00

My precious Gracie…
One year ago, was the best day of my life and the toughest. I was sooooo excited that morning when we flew from Beijing to Nanchang early in the morning. I was exhausted from travel and sightseeing but I couldn’t wait to be united with you. Grammy and I went to the marketplace to get diapers, snacks and other things you might need. I couldn’t think of anything but you. I was excited and nervous and scared and thrilled…just a jumbled mess. Veronica, our guide told all families to meet on the second floor at 3 p.m. Grammy and I got there about 10 to 15 minutes before. You were already there. I caught a small glimpse of you from the hallway and I literally felt like throwing up with the enormity of the whole situation. I was going to be a mom in a short amount of time. I physically saw you for the first time and got to hold you in my arms. You were tiny and really blue. You looked so scared and confused. You let me hold you but it was not close. I remember that you had no diaper on because you had pooped in the one they had you in and they didn’t have another. Grammy kept telling me not to expose your hiney (you had on split pants and no diaper). I don’t have the words to tell you how I felt the moment when they put you in my arms. It was surreal and I expected tears and joy but I felt so much more than that…just know that phrase in Jerry McGuire, when Tom Cruise says, “You complete me…” that pretty much sums it all up. You were restless and upset when we went back to our hotel room in the Jin Feng hotel. I knew something else was up with you and I took your temperature and sure enough, you had a super high fever. We gave you Tylenol and that seemed to help but that was a tough night. You were scared and rightly so. You didn’t sleep well. I cried a lot on that trip because I felt so helpless. It turned out that you had chicken pox. At the time, I didn’t know how bad it was for you to have it with your special heart. The other thing I didn’t realize at the time was how bad your little heart was and that you surviving so long without medical intervention is truly a miracle. I believe it’s your strong stubborn will that is partially responsible.
So much has changed in the past year. You’ve had a major open heart surgery and will most likely have another in a month or so. You’ve gotten taller and gained weight. You are walking and sorta running. Your speech is getting better every day. You love to play and you laugh, especially when you say the word, “boob”. You give hugs, you snuggle close and you call me “Mama.” You are more relaxed and trusting and you have a large extended family who loves you very much. I have become a more patient person and now I put someone before myself. I feel so incredibly happy and content (and stressed sometimes and sleep deprived but that’s part of motherhood). I’m so proud of how much we have grown in one year.
Today we were supposed to enjoy our Yo Gabba Gabba cupcakes and eat Chinese but unfortunately strep throat change our plans (my poor sweetie…I hate that we are always battling the sickness). I guess it’s ironic that our first day as a family you were sick and a year later on our anniversary, you are also sick. We’ll get over this one like we did the last one. Just one request, please don’t pass on strep to your mama like you did the Chicken pox.
I love you, my sweet baby girl. You are always and forever my beautiful daughter.
Love,
Mama

Memorial Day Photo Shoot and the Heat

2010-05-31T21:19:00.002-05:00

First of all, I am so thankful for all of the servicemen and women who have given their lives and time for us.

Today we did the photoshoot for Mended Little Hearts calendar. It was at one of the beautiful Spanish missions. It was SUPER humid which made it a little tough to breathe. I can't wait to see how the pictures came out. Gracie took a picture with another little girl who had the same surgery that Gracie is about to have. She is truly a miracle child because something went wrong during the surgery and basically her parents were told that she wasn't going to make it but less than a year later, she is walking, talking and growing. She's a beautiful little girl. If I am able, I will link the blog of the photographer to my blog so you can see the pictures.

The heat is tough on Gracie. It makes her oxygen levels drop drastically. I wish our cardio had told us that but it was a Mended Little Hearts mom who gave me the term, "heat sensitive" and that a lot of the kiddos have that. It can be scary when she drops into the 60s quite fast. I'm lucky that the xopenex nebulizer helps. I'm now hoping we'll have the surgery so that she has a better o2 level and that we won't be so struggling in the heat and humidity.

Updated Info

2010-05-26T22:24:00.002-05:00

So, the nurse who schedules all of the heart stuff at the hospital calls me. I'm in my car at the parking lot of Office Depot. She says, "Hi, I'm calling to schedule Grace's fontan, I mean cath and sedated echo." Yikes...that's a freudian slip. So she gives me the date of June the 15th and tells me that we might have to stay overnight and then her case will be presented the following week to the surgeons and then surgery will be scheduled. So, I said...it's a pretty good chance she's gonna have surgery? There's a pause and then she says probably so. Basically these tests are the precursor. The surgery will happen 2 to 3 weeks after...just all depends on the schedule and both surgeons have to be around because her case is pretty complex, her words, not mine. So, again, I started feeling a little bit woozy and emotional because yet again I'm not emotionally prepared. I know the positives that she's younger, she'll forget it, she'll heal faster, she'll get it done faster...I know there's a lot of good things about the surgery...I just hate that she's going to have to have another traumatic event happen to her in less than a year. The worse thing...the daycare called and said her sats were really low after playing and just a bit a go they were again in the low 70s which isn't a great thing right now. She still has a nasty cough we can't kick. So, in my emotional mind I'm thinking she's really getting bad again which scares the heck out of me which makes me think let's get this thing done NOW!

On a brighter note, my girl is going to get to be in the front row of the Yo Gabba Gabba Live Tour in December! She is so in love with that show, especially Muno and Biz Marky. She wears her Muno shirt to bed and when she takes it off, she gives him a kiss and tells him bye-bye. If she could have any wish right now, it would probably be to see Muno and or Biz . We have like 4 shirts, the sheets, and all of the DVDs. It is what keeps her calm and we take the portable DVD player and the DVDs everywhere. I'll be bringing them to the hospital. I am hoping that the Gabba bunch will be the calming medicine when we go. I wish I could somehow contact them and tell them thank you for helping my girl when she's having a tough time. They make her day.

Big Shock

2010-05-25T22:06:00.004-05:00

Today started out a great day. My school got "Recognized" status and my principal said we could paint our office. Then I get a phone call from Gracie's physical therapist. She had written a letter to the pedi cardiologist about Gracie's o2 sats falling during physical stuff. We have been keeping a log since that started two weeks ago. Anyways, to make a long story short, the pedi cardiologist is very concerned and it looks like we might be having part 2 of open heart surgery this summer and not next summer as planned. We have to get a sedated echo and then they are going to do the cath lab. Yes, I am totally freaked out and I feel as if the rug has been pulled out from underneath me. I was preparing myself for summer of hell for next summer, not this summer. I truly had hoped that she would get a little break but it doesn't look like it. I'm scared because I know this next surgery is a lot tougher and we're going to be hospitalized most likely a longer time than last (we were there 9 long days!) I have mixed emotions: get it over with so she'll feel better and her sats will be in the 90s; give her a year to not have so much trauma...she's had a lot in this one year. In 13 days, we will have been a family for a year! I can't believe it. We took pictures this weekend and I will post them from work because it has the CD capability that my netbook doesn't have (and frankly I don't want to turn on the other computer because it takes forever). On Monday, we will be doing a photo shoot for Mended Little Hearts calendar (ironic huh?) I will be talking to some of the moms whose children went through the surgery that Gracie will have to go through. I guess I'm just scared and overwhelmed and surprised. Life is like that and you have to take it as it comes and pray a lot. I do have faith and I know that there is a reason for everything. The good thing is that if we do have surgery, the timing is great...I'm off of work in 15 days.

Happy Mother's Day

2010-05-09T20:43:00.002-05:00

It was my first Mother's Day with Gracie. It was a great morning following by bratasaurus Grace in the afternoon because she is refused to take a nap. Discipline with her is a whole different ball game that I have ever played before. All of the things that worked with the other children I have ever cared for don't really work with her. She is one of the most tencious persons I have ever met. I admire it but yet it is a big ol burr in my saddlebag and quite frankly it exhausts me. I know that it is her tenacity that kept her alive so long. She really shouldn't have survived so long without medical intervention. So, I always have to remember and respect the survivor instinct she has in her and try to remember that when dealing with her when she is being incredibly stubborn. I do know that despite everything, she is the best thing ever and I love her with all of my heart. I'm not looking forward to middle school when that tenacious streak really shows up in an ugly way but hopefully by then I will be ready for it...NOT

But, you know that's all part of motherhood. I have learned you sleep differently (and don't sleep as well); you watch all the TV shows your kids do (and learn to love them like Yo Gabba Gabb); you miss spending time with your friends and going out to the movie theaters but when you watch them sleep the sight makes you forget all that stuff; you go to the bathroom, take a shower with the door open or with your child either opening the shower curtain or standing next to you in the bathroom (sometimes the bathroom is the only time you have to yourself); you always feed your child first and your child starts wearing the cute outfits instead of you; you hum and sing all of the songs from the Sesame Street CD or the TV show your child loves (right now ours is Yo Gabba Gabba and I'm always singing "Hold Still") at work driving your poor co-workers nuts (or in my case, poor Shannon is now singing them and she doesn't watch the show); you find yourself falling asleep right after your child goes to sleep or sometimes before if you are super sleepy; when they go to sleep, you know you should too but you try to get caught up on your own stuff, like I should be going to sleep instead of blogging. But, in the end of it all, it makes you a stronger person and in the words of Jerry Maguire, my Gracie completes me.

Botanical Gardens

2010-05-02T21:53:00.000-05:00

The Beach

2010-04-29T21:53:00.003-05:00

We went to the beach this past weekend and it seems that my girl, although a bit cautious, is a beach lover like her mama. Her favorite part of the weekend was shoveling sand and pouring water on it. I think she was amazed the way the ground sucked in the water so quickly. She had us all running for water the whole time. Now, walking on the beach, that took more time. The tide was high and it freaked her out. It wasn't until we were getting ready to leave that she attempted to walk along the waterline. Then she liked it a lot and had a fit because we were leaving. She is definitely in her twos! Holy cow! That girl is stubborn and wants it her way and if she can't have it her way, she has a major meltdown! And she doesn't let it go! I think she was that Chinese Empress who built the Summer Palace in another life. I heard she was a bossy firecracker like my girl! But, I wouldn't want her any other way, even if she likes to just punch my buttons by picking up random things and throwing them down.

The Cardiologist and Kiddie Park

2010-04-19T20:14:00.002-05:00

Last week was a week of good news. We saw the pulmonologist who said that she's doing great and we don't have to see him for three months. Grace did super well at that appointment and even let them put the blood pressure cuff on her. I think the doctor was shocked at her turnaround in behavior. Last time she wasn't having anything to do with him. She's that way with most doctors except our pediatrician who is AWESOME. Now, her visit with the cardiologist I could tell wasn't going to be great because she woke up in a bad mood and it seemed his nurse did too. She was grumpy with Grace and she had a hard time getting the EKG stickers on. Grace worked herself up and had a hard time calming down. The cardiologist had to stay in the hallway to get an accurate pulse ox. But, he's pleased and is planning on doing the Fontan the summer of 2011 unless her o2 sats fall in the low 70s (which they were before the pulmonologist visit). So, it was good news there too. Now we are going to visit the pediatrician because she has this nasty cough that started last Sunday and it's waking her up. She's choking on all of the drainage, poor baby. I'm constantly jumping out of bed making sure she's okay. This lack of sleep is also triggering her night terrors (and it could also be the change in classrooms too). So, needless to say, I'm also lacking sleep. She fell asleep this evening at 6:00 (usually she goes down around 8:30). I should be asleep but I'm trying to catch up on work stuff (I was out at TLA last week and had a blast...it was nice seeing the other librarians that I don't usually get to see and seeing cutie Matt De La Pena!)

Sunday we went to my friend's daughter's birthday party and Kiddie Park. Grace wasn't feeling super great but she was a trooper. She was leery of the rides at first but I was proud that she tried them and she actually enjoyed them. I felt so bad when she wanted to get on the "bus" that kind of went fast. She wanted to get on and I made sure she was strapped tight. Her eyes were huge as it whipped around the corners and she had a death grip on the seat in front of her. I waved at her as she went by and kept yelling "You're doing great!" I don't think she'll ever think of the song, "The Wheels on the Bus" in the same way.

Cardiologist visit

2010-04-17T21:50:00.003-05:00

We saw the pulmonologist and the cardiologist this week. Both doctors had good news for us. Grace is doing well. She does have a nasty cough though. Most likely we'll go on antibiotics this coming week. It looks like she'll have her second open heart surgery next summer (2011) if her oxygen saturation levels remain where they are. If they drop then we'll be doing it sooner. She did very well with the pulmonologist but not so hot with the cardiologist behavior-wise. I don't think my cardio's nurse was feeling too hot and she was super grumpy with Grace while attempting the EKG. Grace woke up in a foul mood that day too and I know that didn't help. I wish they could understand that first of all she's only been here for 10 months and in that time she has had open heart surgery, lots of blood taken, tubes in her ears, and lots of other scary things not to mention having a brand new family to deal with...it's gonna take time and be patient with her. Geez and she's only 2!

Speaking of 2, she likes her new class and she peed in the potty in class and for me today. YEA! Baby steps right? We're going to go to the beach next week. I hope it's not raining!

Going into the 2 year old class

2010-04-09T22:03:00.003-05:00

Grace is going to start visiting the 2 year old class and you know who's nervous? Me! It's a great class with a great teacher but I love the teachers she has now. But, I do know she needs to be with the kiddos her age, especially to help her with her speech. She does have a lot more words than before but she's not really putting them in sentences. I know that will come with time.

We got good news from the doctor that she does not have malrotation of her stomach! YEA! She does have her gastrointestinal organs flip flopped (except for intestines, I think). This won't be a problem but she'll have to wear a medical alert bracelet. Her o2 saturation levels have been great too. We are going to see the pulmonologist and cardiologist this coming week. I'm hoping he will give us approval to fly. Maybe we can visit Leilani and Lillwinn (the cribmates) this summer.

Beautiful Bluebonnets

2010-04-05T22:09:00.001-05:00

One of the reasons I love Texas in the Spring...beautiful bluebonnets and other wildflowers.

38 and Easter

2010-04-04T22:24:00.003-05:00

I turned 38 this past Tuesday and I had a great day. I have to say that I have the best friends and family ever. Even though I had to go to the doctor because I hadn't gotten better and I ended up with a steroid shot, it was a marvelous day. I remember last birthday I couldn't wait to get to China. I was waiting for my LOA and I was hoping it would be my birthday present. I think it was dated on my birthday but I didn't get it for like another week. How much my life has changed in one year.

Grace celebrated her first Easter. She is SUPER afraid of the Easter Bunny. When we went to the Easter egg hunt yesterday, she saw the bunny and stopped in her tracks. She clung to my leg. The funny thing is that she loves her bunny named Bunny Hop. She had fun at the hunt and got some candy and won a, you guessed it an easter bunny which we have named Fluffy in the drawing. She had fun dyeing Easter eggs and making a bunny cake with her cousins. Today we went to 8 a.m. Mass and she did okay until towards the end. It's hard to enjoy Mass with a two year old who is in constant motion. She kept hugging my neck and kissing me which made her constant motion a lot easier to take. We went home and took a nap and went over to my parents' house for lunch. It was a nice laid back day. Grace loved the kitchen the Easter Bunny left. Can I say how hard some of these things are to put together? Lord I needed to be like Arnold Schwartenegger to put on the refrigerator and oven doors!

Tomorrow we are scheduled to do an Upper GI. They were going to do a CT of her chest but because her SATS are not the greatest, they didn't want to do it (because she has to be sedated)...so my doctor is checking out other options. Let's hope it goes well tomorrow. I feel bad for her because it seems like it's doctors and lab testing lately. I figure in the next couple of years she'll be all fixed up and good as new. I am glad we're figuring out things now rather than it blindsiding us later on down the road.

Sleeping Issues

2010-03-28T22:15:00.002-05:00

Grace now is in her big girl toddler bed which is super great right? Well, there is the problem that now Miss Thang can get out of her bed on her own accord, especially at nap and bedtime. At first we didn't have this problem because she didn't realize she had the power to do that. But now, she knows she has the power. It was getting into a major power struggle which I know isn't a good thing. I've done all the Love and Logic classes, read books, etc. I dealt with these things with middle schoolers for over 14 years now and I have learned my daughter can outlast them...she is one of the most tenacious people I have ever met in my entire life. It's like a no win situation. When we have the power struggle it ends in major temper tantrum/screamfest which leads to a bad night sleep. So, by accident I solved the problem but at the same time, I feel like a slacker parent. Let me explain. So, it was getting to be 9 p.m. Grace was popping out of her bed like a weed. I'd put her down. We did our whole nightime routine...lotion, pjs, books, prayer, music, back rub...she still wouldn't go down. I was so frustrated. I walked downstairs. Came back up because I felt incredibly guilty for the screaming even though I was still talking to her telling her where I was. So, I ended up laying on my bed, turning on the TV and watching one of my TV shows...guess who fell asleep shortly thereafter? Naptime on the weekends is the same way so I put on Yo Gabba Gabba and tell her we are going to rest watching the show. She falls asleep and I guess it's because she has seen these episodes like millions of times. Her sleep is for more than an hour and it's restful. So, putting on the TV before she falls asleep is becoming a routine. I feel like it's probably not the greatest thing but it's working for us. She's falling asleep in a peaceful way and she's staying asleep peacefully and getting up refreshed and in a good mood. I know some people would totally frown on this but it's working for us right now.

Here is the one thing I am learning about motherhood that I didn't get before. You have to try and do some things that others disprove of and that's okay. So, I have a lot more understanding of moms and dads now parenting in unique ways. I used to be very judgemental before but now I get it.

Ahhhh Genes!

2010-03-23T13:31:00.002-05:00

Yesterday we went to see the geneticist about the extra x chromosome. I was kind of overwhelmed with the amount of information. The bottom line is that she's going to have to have more testing done. She was concerned about her organs being flip flopped, specifically the stomach so now we are going to have to have possibly an upper GI. So, at this point, we know there is an extra pair but we are not totally sure how it is affecting or if it will affect her.

I hated the fact that they had to draw more blood. It was painful because the tech was digging around my poor girl's arm looking for the vein. Finally the nurse came over and got the blood. My poor Gracie was crying and crying and crying. Charlie Brown, her new friend, couldn't make her feel better. She fell asleep on the way home.

She is still sleeping in her big girl bed, though she falls out of it at least once a night. Last night I woke up and found her on the floor asleep next to her bed. Earlier that night she was standing up beside her bed with her arms outstretched yelling, "Mama! Mama! Mama!" I picked her up, rubbed her back, kissed her and put her back into bed. She had been asleep the whole time. She is now letting me comfort her whereas before she was so distraught nothing could calm her down. We have noticed that she's smiling and laughing more. I think part of it is because the saline nebulizer is working and the weather hasn't been rough on her o2 sat levels.

Today is my mom's birthday. Happy Birthday Mom/Grammy. We love you and thank you for all the things you do!

The N Word

2010-03-16T21:32:00.002-05:00

Yep, my daughter used the "N" word today for the very first time. I had used it with her about 15 minutes before she used it when she was trying to stick her nebulizer tube in the outlet that I had just unplugged the nebulizer from. She decided to try out her new word when she was going to bed. She popped up and said loudly,"NO!" and then she liked how good it sounded that she continued, "No! No! No!" I don't really think she understands what it means but I think that's just around the corner. I think it's going to be a word that I'll be hearing a lot. She is very stubborn and she wants things done HER way. She throws major bratasaursus fits when it doesn't happen the way she wants it to.

On a brighter note, my daughter is sleeping in her big girl toddler bed. This is night #3. She hasn't fallen out of bed (well half of her has but she stayed in bed).

When you have a 2 year old...

2010-03-12T22:05:00.003-06:00

I admit that before Grace, my car was not exactly always spic and span. You would think that because my job requires serious organization that I would be extremely organized....yeah, not so much. I can though give the general dewey decimal number for most things. Anyways, I realized today that having a 2 year old increases the disarray in a car. The reason I found this out is that I had to pick up the author we were hosting from his hotel this morning. It took me a good long time to pick up all toys, straws, old capri sun pouches, books, papers and then vacuum the car. Let me tell you, there were cheerios and m&ms all over the place not to mention a half naked Ling doll on the floorboard of the back seat (poor Ling!) You know what the sad thing is? I have an organizer for Grace's stuff hooked onto the back of my seat. It obviously isn't working for me. The good thing is I was able to get it cleaned up so that Rick Yancey (our author) didn't sit on boogie wipes, m&ms or any other trash. It looks clean but I highly doubt it'll last much longer. Oh well. Que sera sera.

PS...Happy Birthday daddy! Gracie & I love you!

Special Needs thoughts

2010-03-02T20:11:00.004-06:00

My grandmother's funeral and rosary was lovely. I was glad to see all of my extended family. Some of them hadn't met Grace. She did so well despite the later nights and missing naptime. Of course though, the nasty wind blew in which affected her oxygen levels. I almost thought we were going to have to make a run to the ER because it wouldn't stablize despite nebulizer treatments. Luckily, it finally did get to where we needed it to be by 1 a.m. and it stayed like that for the rest of the night. I'm glad I only had to do 2 treatments.

Of course, it doesn't end there. Gracie and I got up this morning. She is now into Blue's Clues as well as Yo Gabba Gabba. She watched the show as I gave her the pulmocort nebulizer treatment. We were both able to get dressed and I was able to give her meds before we left for school. I should have known that she wasn't feeling so great because she didn't fight getting buckled into the car seat (that is now our big hurdle sometimes) and she let me start the Sesame Street CD at the first song and usually we have to start our trip with Rubber Ducky. When we got to school, poor thing just threw up and threw up and threw up. I wiped her up as best as I could and we headed back home. I cleaned her up, put her in new clothes, took her temperature and she was fine. I guess it was the combination of mucous and meds doing a mambo in her belly that didn't agree with her. I took her back to school and all was well. We had a great evening and she seems to be feeling better.

So, I started thinking about Grace and all the stuff we've been through healthwise which led me to start thinking about an e-mail from my agency about waiting child and the policy that only people with LID dates could apply for children with minor special needs such as CHDs or cleft lip or palate...minor...it's the word "minor" that I'm not so sure about in the same sentence as CHD (or any other special need). I hope that people realize that even if they only want a "minor" special need, it doesn't guarantee that it will be. There could be other things related that aren't documented that the parent will have to take care of as well. Grace's SN was supposed to be moderate but in fact it's severe. We've also had other health issues related such as pulmonary issues. I just hope that when people do decide to go the special needs route to be prepared for the unexpected and that there might be a lot more to the special needs that meets the eye. Don't get me wrong. I am glad that I did go this route and I am Grace's mom. I have learned so much and have gained so much from being a parent to a special needs child. It's incredibly challenging not only because of all of the things we are currently juggling healthwise, but also because I am doing it as a single mom (with help from family and friends). I just want people to go into the experience with eyes open and not feeling like the rug was pulled out from underneath them.

Passing

2010-02-27T21:12:00.002-06:00

My grandmother passed away a few days ago. I'm glad that she was able to meet Grace before she left this world. I'm glad she is finally resting and is at peace. Right now, I can totally imagine her dancing with my grandfather and playing canasta with her sisters. It's what made her happy. Tomorrow evening is the rosary and Monday is the funeral. It should be an interesting experience with a two year old...especially since both are around her I'm about to fall asleep times. Let's pray that she does well.

I had a stomach virus Tuesday night and onto Wednesday. I barely got Grace to school and I, of course, had to set up something for work, so I dragged myself in. I was able to get it done fast and I was back in bed by 7:45 a.m. I slept hard until almost 1 p.m. I felt better but weaker. Grace did me proud. She was so good and I had no problems getting her into her car seat or getting her into school. My parents were their usual great selves bringing my child home to me in the evening along with soup, which both Grace and I ate for dinner. Again, I reiterate, being a single mom and being sick suck! Make sure to have someone who can help you out! I'm a lucky one. I lost 5 lbs in one day and I'm still not totally up to par in the eating department. I am kind of wary right now.

Grace is doing well. I am hoping she is not going to get sick. She was a bit cranky today and normally that's the precursor to some sort of issue. She has red patches on her knees, elbows and wrists which my sister says is eczema and that it comes with respiratory issues (her boys would get it worse when an asthma attack was coming on). I'm glad we'll be going to see the pulmonologist next week.

Grace is also a Yo Gabba Gabba aholic. She has a shirt that she loves to wear. She does some of the dances and loves to go crazy in the dancey dance part and then flop down on me. She's talking a lot more. She's also "singing". She was "singing" the Sesame Street anthem in the car this morning. It makes me happy.

One of those Days

2010-02-21T20:12:00.003-06:00

It was one of those days where my daughter is showing her terrible 2's side. A few hours of whining, crying, throwing tantrums, hitting, pulling hair wears me out...I'm exhausted and I think I've aged a bit. She had a great morning but she didn't get a super long nap....maybe 30 minutes. So, it was understandble. Thank God she fell asleep right after her nebulizer treatment...an hour earlier than she usually falls asleep. I hope she sleeps through the night. She's sleeping so deeply that I keep checking on her to make sure she's okay. I've taken her temperature like 3 times already just to make sure she's not sick. She's started having her hot head sweats. We still haven't figured out what causes it. I think it's uncomfortable for her.

On a brighter note, Grace had a great day yesterday. We went to the Asian Festival and had a great time. The food is soooo good. Grace loved the tea and the potstickers. She is definitely a girl who prefers pork over other meat. She did well this morning too when we went to visit my grandmother in the nursing home. We've been told that she's probably not going to last much longer...they have put her on a pureed diet and she was on oxygen. I just don't want her to suffer anymore. I think she is finally ready to go. I'll miss her but I know she'll be in a better place with my grandfather and her sisters.

Tubes Update

2010-02-17T20:13:00.002-06:00

Grace has tubes! It was s super long day. We got up at 5 so she could eat a good breakfast because the latest she could eat was 6 and drink was noon. What totally sucked was that the doctor was an hour behind and so poor Gracie had to wait for an extra hour. She did great walking down the halls and pushing her stroller. She wasn't grouchy despite the fact she hadn't eaten in a long time or had something to drink or a nap for that matter. I was so proud. The pedi ENT said she still had the fluid in the one ear which he got out and they put in the tubes. She has great hearing in the left ear but some loss in the right...not sure why. We are going to explore it more in the months to come. I'm exhausted but glad my girl is okay. I hope tonight will be restful but I'm not sure since she had some trauma. Say a little prayer we both get some sleep tonight.

CNY & Valentine's Day

2010-02-16T21:09:00.002-06:00

My first CNY/Valentine's Day with Grace was nice. We hung out and played together and then went over to Grammy & Pa's to go out and eat Chinese food with them. I gave Gracie a Yo Gabba Gabba DVD. It is my savior in the mornings. When she gets up (which is right before I do or shortly after I do) we go to the upstairs playroom/den and do a pulmocort nebulizer treatment while watching an episode of Yo Gabba Gabba. Then she will watch a second episode while I get ready for work. Biz's beat is one of Grace's favorite parts as well as Mark the art guy. She tries to imitate his beats and she waves at him when he waves bye-bye. She loves Plex and I think Tootie but Plex is her favorite. I think it's because she's as bossy and know it all as he is. Someone said to me that having to watch that all of the time would be horrible but as a parent of a child who loves it, you learn to embrace it because it does give you a few moments to get done what you need to get done.

Grace is getting tubes in her ears tomorrow. They moved it back and so it's throwing everything off. I feel horrible for her because they aren't doing the procedure until 2 p.m. and the latest she can eat is 6 a.m. She's going to be starving. I couldn't change the date of the procedure and they just told me about the change the day before (and I was the one who called them!) I'm not happy with the ENT's office. I love the doctor but they've had like 3 weeks to tell me they changed the time and I could have changed it to another date/time that wouldn't be as tough for us. Grace is a trooper though and will be okay. I plan on getting her up at the crack of 5 a.m. and feeding her well. She can have clear liquids up until 12. I have sprite and capri sun for her to help fill her tummy.

Inspiration

2010-02-13T21:41:00.002-06:00

These past few weeks have been incredibly challenging and exhausting. Both Grace & I have been down with a virus but now we're on the mend. Today, I found inspiration at my school's 5K run/walk. One of our student has cerebal palsy (I think). He relies mostly on a walker to get around. He did the whole 5K. You should have seen him working so hard and not giving up. He kept saying he wasn't going to let my friend, his English teacher beat him. He would slow down and then suddenly burst out in this fast little sprint. He didn't care that his legs wouldn't go exactly the way he wanted...he just wanted to beat my friend and he did. He said to me, "When I get something in my head, I don't let it go." Wow! This is something I will keep with me forever and the picture of his back running in his walker will be the mental image I need to remember when I'm having a "I can't do this" moment. He truly is an inspiration.

Grace is getting tubes on Wednesday. Our awesome doctor put her on pulmocort this past week and it seems to have really helped her (knocking on wood). We're going to see the pulmonologist early in March and the genecist late in March. In April, we go back to the cardiologist. Grace gets more and more sassy every day and is saying a lot more things. She's obsessed with Elmo and Yo Gabba Gabba and The Wheels on the Bus and Twinkle Twinkle Little Star. She's been bit 3 times in the past 2 weeks and it seems that she's starting to lose her patience a bit with the smaller kiddos in her class. She's really growing up and is so incredibly stubborn. She is every bit the stubborn 2 year old. It's her way or the highway. She totally fits in with our family. She received her first Valentine's gift from a very cute little 2 year old boy yesterday. She loves those bracelets.

Health Updates

2010-02-06T20:08:00.003-06:00

This has been one of those weeks where you think to yourself, "My poor baby!" We went for our well child visit on Monday and Gracie had a 102 fever and her oxygen levels dropped. She couldn't recover. So....we went home, did a nebulizer treatment that helped tremendously. The mommy in me could't totally relax so I kept checking her 92 levels like every other hour that evening. I stayed home with her on Tuesday just in case and she was great...she even got her synagis which seemed to perk her up despite the pain and stress of the shots. On Wednesday afternoon, we had the squatting and the whining. Sure enough, her oxgen level were down and not coming back up. Again, another nebulizer treatment which seemed to help her once again. She had one more instance that evening but it stablized quickly so I didn't need to do the treatment. Thursday we went to the ENT and we've decided to put tubes in her ears. We're hoping that it will help get rid of all the ear infections and help her with her speech. That's going to happen on February 17th and they are also going to check her hearing. Then, Friday, I get sick. I think I had what Grace had earlier in the week. I have the chills, fever and a sore throat. I have it still today but I'm good when my Tylenol is working. So, it has been one heck of a health week but all in all we're good. Today was pajama day and we watched so many episodes of Yo Gabba Gabba that I'm sure I'll dream about them when I fall asleep. Grace cracks me up doing the arms at the beginning the way DJ Lance Rock does. She also made me laugh watching Finding Nemo when Coral was trying to save her babies and Grace said, "Dooooo! Dooooo!" which translates to goooooo! Man, I love that girl!

Major Meltdown at Target...Lord Help Me! The 2s

2010-01-30T11:26:00.002-06:00

Yes, that was my kid screaming at the top of her lungs this morning at SuperTarget. No, I didn't spank her. No, I didn't yell or scream at her. Yes, she was getting tired (close to nap). No, I hope she isn't sick. Yes, I was close to the end of my rope and I almost had it. Yes, I felt uncomfortable with the stares. My daughter was having a temper tantrum because she was trying to put a Yo Gabba Gabba video down my shirt and I already told her no and I told her the next time I was going to put Yo Gabba Gabba video in the cart. Yep, that's what I did. That is how I "abused" my child. I put the video in the cart and refused to give it back to her. So, please cashier lady...I know you were trying to quiet my kid (and yes, I know how sad she looks when she's crying and crying enough to make herself choke)...leave her be. I really hated the looks and was embarassed but what could I do? I guess we could have left the store but we had driven 30 minutes so we could buy a birthday present for the party we are going to tomorrow. The good thing is that she fell asleep on the way home. We got the gift and now she's taking a nap and I can take a breath and relax a bit. The terrible twos...gotta love them. NOT!

Flip Flopped

2010-01-25T20:43:00.002-06:00

Renal scan was today. Gracie did well. She cried most of the time but she was still. She has discovered Yo Gabba Gabba so we did a lot of singing of the Yo Gabba Gabba theme in the waiting room which I think helped. So, the tech kept asking me things about transposition and I told her that she didn't have transposition in her heart. She just kind of shook her head and I got the feeling that something weird was up and of course that made me worry a bit. I decided though that I wasn't going to stress and if there was something wrong, Dr. Oliver would call. So, this afternoon, who do I get a call from? Yep, the great Dr. Oliver (I mean this truly...she is the BEST pediatrician ever). She was calling to check on how Grace was doing. I told her better but I felt that the cedar was not helping her. I told her that we got the scan done today and she says that they already faxed the results to her and her kidneys look great and that they found something interesting. Ok...first thought is interesting is a neutral word...is she going to drop a bombshell on me? She does but it's nothing horrible. It turns out that Grace's liver and spleen are flip-flopped, meaning they are on the opposite sides of where they should be. But they are healthy and this happens sometimes with heart kiddos, especially with the severe heart issue she has. It is good to know about this on so many different levels! She was surprised the hospital hadn't told her. Guess they were more interested in her circulatory system. So, all is good in our world.

Here Comes the Sun

2010-01-22T19:47:00.002-06:00

Not only has the weather here gotten so lovely lately but I'm seeing the silver lining all around me. I'm so thankful for the kind words and encouragement. My friend tells me it's only natural to have these overwhelming feelings and even more so when you're a single mom and sleep deprived. My dear girl is finally feeling better. I had no problem getting her to bed and she slept through the night without major coughing. YEA! I'm all about the routines but I changed it up a bit yesterday and tried it again tonight and it seems to work. So even if I want to get her asleep before 8 p.m., I need to put her down closer to 7:30. We watched Jack's Big Music Show or Yo Gabba Gabba then put on our pjs, read some books (her faves are Pat the Bunny, The Very Busy Spider and Go Dog Go!), say our prayers and go to bed. I put her down at 7:20 and she was asleep by 7:30. YEA!

I could tell that she was feeling better because she was bopping her head this morning to the radio when she woke up (my child loves Lady Gaga and Black Eyed Peas). When she was laying on my bed waiting for me to finish getting ready I hear her little voice sing "Mama, mama" when the line said, "I got it from my mama. I got it from my mama." She's starting to imitate me when I do certain things like lick my fingers when turning a stuck page. It's funny.

We went to the eye doctor today and we got good news...no glasses at least for six months. YEA!
Monday, Grace gets her renal scan and Friday her hearing test. We don't see the genecticist until March. If she does indeed have the Triple X syndrome, it could be our ticket into the Ready Set Start program earlier than we expected. That's a good thing. Life is good and I'm finally breathing again peacefully.

Bitter with the Sweet

2010-01-21T20:08:00.002-06:00

It has been a rough couple of days. Grace is sick AGAIN! It turns out she has the croup plus an ear infection and then today we went back because she wasn't getting any better. She was fussy all afternoon and screamed...Yes, screamed, not cried, for over an hour before bed last night and was fussy again this morning. It turns out that on top of the other two things, she also has strep. This has been like the 4th time she's had it. But it gets better...Tuesday afternoon the developmental pediatrician calls to tell me Grace's lab work came back with an issue...something in her chromosomes. So, I kind of let it go because she was a little concerned about Grace's thyroid level and my pediatrician said it wasn't a big deal. So, I was good until 4 pm on Tuesday when Grace's pediatrician, the fantastic Dr. Oliver called (she did, not her nurse) and she was pretty serious. So, to make a long story short, we now have to have more tests on body systems as well as see a Genecticist. How fun is that? How much more can my baby take? We're going to the eye doctor tomorrow and Grace may be getting glasses. It has just been one of those weeks. I am trying hard to keep it together.

Awwww cr*p!

2010-01-17T21:20:00.002-06:00

As I climbed my stairs for the third time in five minutes like the pack mule I have become because I forgot my debit card, I uttered aloud, "Awwww crap!" Not a second later, a little voice in my arms repeats the lovely word several times with a big ol grin. She's very proud of herself. Not that she knows what it means (though I suspect she really does because that grin was one of those, "I got ya now but I'm super duper cute.") I really try to watch what I say but that seems to be the one word that I need to work on harder. Good thing it sounds like "up" because I would hate for her teachers to think that her mama is a potty mouth.

Blankies, tiaras and Dudes

2010-01-10T21:00:00.003-06:00

My daughter can be very peculiar. Her big thing right now is her blankies. She loves to smell them and she wants other people to smell them too. At night, she sticks her blankies through the slats in her crib and wants me to smell her blankie and then pass it back through the slats. The other interesting thing that she is doing is wearing her birthday tiara everywhere. And everybody, well family memeber that is, has to wear one too. She wears them to the doctor, to go out to eat, everywhere. I guess she truly is an empress.

The one thing she is doing that concerns me is that she goes upto strange men. We were at Ihop on Friday and the busguy gave her her blankie that was on her chair. She looked at him and then stuck her arms up for him to pick her up. I was getting our stuff together and my hands were full before I could stop it. He actually picked her up. I'm worried about this behavior. I have noticed that it's only with men, not women. She's done it before but didn't ask them to pick her up. She just went up to a table full of young guys and gave them high fives. That time it didn't occur to me as a bad thing but not I'm concerned. Is it because she doesn't have a dad, only a grandfather? Or is it because she's not familiar with men in general. I just worry that it could lead to something bad.

Happy New Year

2010-01-02T21:01:00.002-06:00

So, when you have a 2 year old who you have to put to bed at 7:30ish, watching the ball drop or going to a party is probably not an option. I have to admit that I had some longings for the carefree, footloose and fancy free days of the past. I was a bit envious of my friend D, who was able to go to a party (I'm glad she had fun...I hope she had fun for me). I was in bed by 10:30. I hardly even rolled over when I heard the fireworks. I think it really hit me that I am a mom and my daughter is a priority and I can't just do the things I did before. I miss going to the movies...I miss leisurely shopping...I miss going to dinner with my friends past 7 p.m. One of these days I'll get back to that but right now I'm doing what I need and want to do. Change is hard but it's good and it makes you grow as a person.

I can't believe we are in 2010 already. Six months with Grace have passed and it just seems to have happened so quickly. My 20 year high school reunion is in June. I'm a little freaked out by that. I am going to go and I've already asked my mom to watch Grace. I used to think about New Year's resolutions but I haven't even thought about them. I think I just want to take it day by day, be a good, patient mom to Grace. I would love to lose weight but we'll just see how it goes. For right now, I'm taking baby steps.

Sickness & Single Parenting

2009-12-29T22:55:00.002-06:00

Okay...one of the downs of single parenthood is sickness...either your child, you or both. Grace has been sick on and off since Thanksgiving. Turns out when I took her in yesterday, she had strep. Guess who had a stomach bug yesterday? You guessed it? That would be me. Guess who was sick? My support system. And besides that, even if you have a great support system, your sick kiddo doesn't want them, she wants you. So what do you do? Well, what I did was put Grace in her PJs early and then both of us went to bed early. I think I fell asleep before she did (we were in bed at 7p.m.) I woke up at 8:30 p.m. or 9:00 and she was totally crashed. I felt bad because I remember her rolling around in bed but that's all I remember. She had a coughing fit around 2 a.m. so then I did a breathing treatment on her in my bed and she stayed there until she woke me up at 7 a.m. by poking me in the face. I guess it was her way of saying get up mama, we have things to do, which we did. Thank God I felt so much better in the morning because we had to get her 2nd round of shots that we had postponed because she kept getting sick. She did well but the antibiotics have given her the runs which isn't fun. I have to call the doctor and let her know. She said it could happen but 5 times in a 3 hour period isn't a good thing. My poor baby. I hope everything is good tomorrow because I want to take her to school. She misses her friends and her teachers, and frankly, I need a small break. She's only been to school once in the past two weeks because of sickness and holidays. I think she needs a break from me too. She starts school full-time next week. Sheloves it and it has been good for her. She is really starting to bloom even more.

Our First Christmas Together

2009-12-25T21:42:00.003-06:00

It went well despite the fact that Gracie still isn't feeling great. This mountain cedar (at least I think that's what it is) has given her this horrible cough and runny/stuffy nose (with her nose swollen on the inside). I feel like we've been fighting this battle for a month now and we only had a brief reprieve when she was on antibiotics (and I accidentally gave her a little too much a couple of times). You know what the hardest part was? Being Santa's elf putting together her slide. Holy cow! It was a 2 person job to manuever that plastic into tabs. Being a single mom, I had to get creative. I was surprised how I got it done. Grace LOVED it so it was totally worth it. She also got a rocking/bouncy horse at Grammy & Pa's (another thing that I, as Santa's elf had to put together and it too was a little physically demanding...there were people there but they watched me do it). She got some great gifts from our family. I loved the aquadoodle my sister's family gave her. It was super cool. But you know what the best part of Christmas was for me (besides the rocking turkey I made...it was so juicy and had yummy flavor)? Having my own family. Grace was the best present ever. It is like my life was in black in white before her and now it's in like HD! Even when she's being Empress Grace, I can't imagine my life without her.

I am so sad for those families waiting in line for their children from China. I know how hard the holidays are. I think if I hadn't gotten Grace, I would have been incredibly depressed. I say a prayer for ya'll every night for peace and strength to make it through the wait and a speed up. It is Christmas time and it's a time for miracles. I truly believe in them. Grace was a Christmas miracle. I think it's very telling that her birthdate is Christmas Eve. It's a sign that she, like Jesus will bring good things to the world. Merry Christmas and peace and blessings to you all.

Grace turns 2

2009-12-24T23:31:00.004-06:00

Today was my Grace's 2nd birthday. I can't believe she's 2! She has grown a lot and made much progress in the past 6 months. We had a small party for her but I still don't think she gets the whole birthday thing. One day she will. I am so blessed by her and I wonder if her birth parents ever wonder about her. So, if I knew them, this is what I would write them:

Dear Gracie's China Mama & China Baba,

Thank you so much for letting me raise our daughter. She is doing so well. I don't know if you knew this, but she has a heart problem and she had to have surgery a month after she got home to the United States. She did very well but she will have to have another one in a year or so. Our girl is a fighter. She's strong willed and so smart. Whenever we go places, people tell me how cute or how beautiful she is. I have to agree, but of course, I am biased. She has a wicked snese of humor and she loves music. Right now she is especially fond of Lady Gaga. She turned 2 today is continue to grow. She is still petite but that doesn't keep her from having a healthy appetite. She's a good girl and we are incredibly blessed. I, more so because I get to raise her and love her every single day. Thank you again for your gift. She is the best thing that has ever happened to me.

Love,

Gracie's Mama

It's Hitting theFan

2009-12-17T21:49:00.002-06:00

So, today, it hit the fan...you know the proverbial sh**t. My school did this Date Grant thing where one of the elements was a bonus for teachers if students were to show a specific marked improvement. It was packaged to us in a way that said that all staff including electives, administators, assistants, etc. would get a piece of the pie, so to speak. I didn't think we would be getting any money since we didn't hit those targets but it seems that there was a hidden second part...if you were a core teacher (no electives or support staff) and when they did an analysis and found improvement within certain perameters, then only those teachers would get a bonus check starting at about $1000, mostly averaging close to $2000. And if your subject area didn't improve, guess what? You missed out on the bonus. So, today some people got an early Christmas present in their paycheck and others (like a core subject, electives, P.E., support staff, etc) didn't. It came as a surprise to all. There was no forewarning or preparation. Those that got it were happy and felt guilty. Many of those who didn't get it were bitter and angry. I didn't get the bonus but I was truly happy for those who did, especially my friend D who needed it and she shouldn't feel GUILTY even though a certain teacher made her feel very bad. That certain teacher though really should have gotten it because she may not officially teach English but she teaches ELL (English second language) which basically is language arts for our ESL kiddos. But here is the thing... it is going to make divisions within our team...why should one department want to help another one when they get dinged? Whoever decided how to divide up the money really screwed up. When you start rewarding like this, it causes much strife which leads to division. This isn't what we agreed to when we voted on doing the grant. United we stand, divided we fall. I know a lot of people's feelings were hurt. All of the staff did deserve it. I know we all could use the extra money but you know, God always gets it to us when we really need it...at least that has been my experience. So, I hope that the tear this money monster has created will be mended and that we can get over it and continue to help each other help our kiddos.

The other thing I wanted to blog about was something I have been chewing on since Saturday. I wasn't sure if I wanted to publically write about it but I feel like I need to get it out so I can get over it. I was really bothered by what happened. I took Grace to the a Christmas party on Saturday. We were having a good time UNTIL....pin the tail on Rudolph. I am NOT in any way criticizing the party or the games...the ladies did a fantastic job. I am upset by a parent's actions. So, Grace, granted we are slow and she was a bit grumpy, was walking out to get in line to pin the nose on Rudolph. Another little girl, she was about 3 or 4 pushed Grace over so she could get in line. The mother was behind me and said to another mom, "Oh well...it's a tough life, you gotta learn the hard way." I was flabbergasted. I didn't know what to say. I didn't want to look at her because I was so boiling mad. Ok...I get kiddos pushing each other to get into lines....I work in a middle school. But, what I don't understand is that the mother allowed it...what happened to manners? If the mother had said, "Oh, I'm so sorry...so and so, say sorry to the little girl you almost knocked down." I wouldn't have been angry. Yes, the mother was probably embarassed but that is how we teach our children that it's okay to be rude and it's okay to do whatever we want when ignore these types of things. These are things that I wanted to say to her but it would have come off as bitchy..."I don't know if you know this, but my daughter is a heart baby and had open heart surgery in August. We go a little slower because my daughter doesn't breathe as well as your child. We are sorry that we slowed down your child." or "Wow! Your child has great manners. I hope my daughter doesn't learn those!" or "Wow! I can see the apple doesn't fall far from the tree in how we treat others." or maybe I should have pushed the mother and seen how she would have liked it. Yes, I know it's petty but it really bothered me. It also made me realize that this group mostly has older girls and so we'll probably not be going to any functions for a while. It's hard on Grace when she doesn't have anyone her age to play with. Maybe when she gets faster, ya think?

Tea Party

2009-12-14T19:38:00.007-06:00

Grace loves her tea set. It has become her favorite thing. It's the one thing that allows me to do some things on my own like a take a shower or laundry (even though she's a good laundry helper putting things in the dryer). I am so thankful that her sponsor gave her the tea set. She's at that stage where she likes to put things in and take them out. She loves to put her cookies or cheerios in the cups.

This is the last week of work for the year. YEA! Grace will be starting daycare full time in January. She seems to like it a lot. I've seen a lot of growth in her as a result of going. Next week though will be a bus week with doctor appointments and blood work. YUCK.

We're also going to work on taking a bath in the real bathtub since she's outgrowing her toddler tub. The other thing I hope to work on is Hope. She still has a strong aversion. It seems to have gone a little backwards. Grace is not a fan and I feel horrible that Hope is being emotionally neglected a bit. I don't have the time to spend with her and she can't be with us because Grace is still afraid. My mom keeps suggesting finding another home for Hope and I just can't even imagine that. I love my dog and I feel so guilty that I don't have the time for her and I wish Grace would feel comfortable with her but she SCREAMS and panics whenever Hope comes near her. She wants to give her snacks but that is as close as it gets. I just don't know what to do. I guess hope that Grace will eventually feel comfortable with Hope.

Christmas Parties

2009-12-12T20:50:00.005-06:00

Tis the season for Christmas parties. We have gone to 2 already. The Mended Little Hearts party was so awesome. Southwest airlines sponsored it. Each employee adopted a heart kiddo and bought him/her presents. Grace LOVED her gifts. She got a tea set, keyboard, magna doodle and a little people castle. We met our sponsor and he was so nice. It was great to see Miss Kara and Deanna who helped make our stay at Santa Rosa even better. Grace is not a fan of Santa Claus. I think he was interesting far away but up close, he made her very nervous.

Tis the season for nasty allergies as well. Grace still can't kick that nasty cough. She went back to the doctor and she still has an ear infection on top of the nasty cough. She's now on like 3 meds and has to do albuterol treatments this weekend. She's taking them well. Here's a hint...get the kiddo comfy with a favorite lap toy and turn on their favorite show...for Grace that's Barney or Jack's big music show. It helps tremendously when you have to put the mask on their face.

I am excited about Christmas and Grace's 2nd birthday. She doesn't quite get either concept. I know that it would have been tough this season if I hadn't been matched with my girl. I'm still thinking and praying for all my friends still waiting. I think I am trying to only get Grace a few gifts because I don't want her to be overwhelmed. I also need to go through her stuff and give away the stuff we don't use anymore. I guess I'll do that on break...that and get her eyes checked,bloodwork done, shots and OT, PT& Speech. We are going to be busy girls.

KABB Fox San Antonio :: Top Stories

2009-12-11T14:13:00.000-06:00

KABB Fox San Antonio :: Top Stories

Me & Grace made the news but in a good way...we're shown a couple of times for Mended Little Hearts Christmas party.

Family

2009-12-06T21:10:00.004-06:00

Family comes in many forms. We often define our families through our bonds of blood or marriage but also friendships and sometimes circumstances. I was lucky enough to add another bond as a result of Grace's adoption. I am so glad that Patricia, Tony and Leilani visited us this weekend. If you remember, Leilani was one of Grace's cribmates at Fengxin. In most of our orphanage pictures, Grace and Leilani were in the same crib. The cool thing is that the girls remembered each other and they had a good time playing together while we the parents lovingingly looked on. It was like our girls had a special sister relationship because of their circumstances. We are going to try to visit each other as well as the other part of the trio (actually there is another little one in the group but we don't know who the little one is and if he/she has found his/her forever family). We had the best time this weekend. I can't explain it but it feels like we've added to our family. We are truly blessed. I'm glad will always have this part of her story. The girls can always share this common bond.

2009-12-04T10:04:00.001-06:00

Send your own ElfYourself eCards

Meeting Leilani

2009-12-02T21:20:00.002-06:00

This evening had to be one of the coolest dinners I have had in my life and it wasn't because of the food (which was good). It was because of the company. Grace and I had dinner with Leilani and her parents. Leilani was one of Grace's cribmates in Fengxin. Her parents, Patricia and Tony decided to come visit us from England via New Jersey (Patricia's mom lives there). We enjoyed the evening despite Grace feeling a little under the weather and tired. I am so excited about spending the day with them on Saturday. We've started comparing notes and our girls have similar habits/behaviors like the night terrors and hating water on their heads but also good stuff like dancing to music. Leilani is so beautiful and she's incredibly animated. I'm posting a few pictures of our first meeting. We plan on continuing to keep in touch and have visits.