Wednesday, December 29, 2010

Going to Playa

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.

Saturday, December 25, 2010

Christmas

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. 

Friday, December 24, 2010

Merry Christmas and Gracie's 3rd Birthday

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.

Thursday, December 09, 2010

Santa and Yo Gabba Gabba







Friday, November 26, 2010

The Tree Ceremony

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. 

Wednesday, November 24, 2010

Pre Thanksgiving

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.

Friday, November 19, 2010

Things About Gracie...Age 2 going on 11

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. 

Monday, November 15, 2010

I think it' s back on

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.

Friday, November 12, 2010

I CALM NOW MAMA

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.

Tuesday, November 02, 2010




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!

Tuesday, October 19, 2010

Not Again...

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.

Saturday, October 16, 2010

I am that kind of mom...

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. 

Sunday, October 10, 2010

Sleep Deprivation



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.

Tuesday, October 05, 2010

Busy Times

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. 


Wednesday, September 29, 2010

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

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!

Monday, September 27, 2010

I shoulda....

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

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. 

Wednesday, September 22, 2010

Does She Speak English?

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. 

Sunday, September 19, 2010

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.

Sunday, September 12, 2010

One of those weekends...

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.

Saturday, September 04, 2010

Good News & Stress

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.

Monday, August 30, 2010

Darn those expenses!

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. 

Saturday, August 21, 2010

Our First Mommy & Me Class

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.

Friday, August 13, 2010

First Week Back

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)

Wednesday, August 04, 2010

The Cough is Back

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

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.

Tuesday, July 27, 2010

Progress

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.

Friday, July 16, 2010

Panic Mode

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.

Tuesday, July 13, 2010

Single Momhood - Me Days

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.

Saturday, July 10, 2010

King size bed and more medical drama sort of

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.

Friday, July 02, 2010

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.

Thursday, June 24, 2010

Heart Update

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.

Sunday, June 20, 2010

Happy Father's Day and Yesterday in the ER

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.

Thursday, June 17, 2010

Yo Gabba Gabba is her medicine

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.

Wednesday, June 16, 2010

The Cath Experience

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.

Monday, June 07, 2010

Family Day - Note to My Girl




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

Monday, May 31, 2010

Memorial Day Photo Shoot and the Heat







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.

Wednesday, May 26, 2010

Updated Info

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.

Tuesday, May 25, 2010

Big Shock
















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.

Sunday, May 09, 2010

Happy Mother's Day




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.

Sunday, May 02, 2010

Botanical Gardens


Thursday, April 29, 2010

The Beach




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.

Monday, April 19, 2010

The Cardiologist and Kiddie Park











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.

Saturday, April 17, 2010

Cardiologist visit

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!

Friday, April 09, 2010

Going into the 2 year old class

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.

Monday, April 05, 2010

Beautiful Bluebonnets


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

Sunday, April 04, 2010

38 and Easter











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.