Happy New Year

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!

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

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!

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

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

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

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?

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!

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

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

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

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

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

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

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

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!

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

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!!!!!

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

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