11 months!

Charli was 11 months old yesterday! She's getting to be so big. I just can't believe that she will be a year old in one month! Time really flies. I swear it was just yesterday we brought that teeny tiny baby home. Man has she come so far since then. We have so many people to thank for all her progress. Everyone has been so supportive. Her development and physical therapists are so wonderful! They teach her something new every week and she catches on so quick. I have a feeling she might be walking by my post for her 1st birthday! Most of all we have to thank you for your prayers! Charli is so blessed to have so many people continually praying for her.

She has learned to pull herself up to stand, so there's not too many naps going on at our house right now. The world is too much fun! She still sleeps wonderfully, about ten hours, at night so I won't complain too much about the lack of naps :).

 Most of Charli's routine check ups have come and gone with all good news to report. We have one concern right now. Her platelets are low, they have dropped to 50,000. They are now saying that it can not be NAIT causing the low platelets because they antibodies should be out if her system. Unfortunately for us they don't really know what else it could be so they will have to do further testing to rule out something's and to see if its a platelet production or destruction problem. This means they need to know if she is having problems making the platelets or if once they are made something is destroying them. This means Charli is going to have to have a bone marrow biopsy. I've been trying to avoid this for almost a year now. It's scary. If you don't know what a bone marrow biopsy is its where they go into the bone in your hip or back and take a sample of the marrow and also a little biopsy of the bone itself. Thankfully she will be asleep for the whole thing. Her doctor also assured me that babies bounce back twice as fast as adults. They said she would be up and going like normal in a day or two at the most. What scares me the most are the results. It could come back negative which would be the best possible outcome because that would mean she has no problem making them. I'm not really clear on what all the possible diagnoses could be if it comes back positive. If it does course of treatment could range anywhere from just continuing to watch her platelets every three months to a bone marrow transplant (terrifying!) We really won't know until after the test, which will be this Friday.  After that I would guess it will take about a week to get the results back. So please please pray for little Charli. Pray that she would do ok with the biopsy and recover quickly. Pray that we don't get results that would mean a transplant. Pray for her family that we stay strong in our faith during this troubling time. Thank you all for your love and support. There's a song I listen to just about every morning and sing it out as a prayer. It's so so true. Ill finish this post with a few of the lyrics and pictures of our sweet girl! 

"Need You Now (How Many Times)"

........

Standing on a road I didn't plan

Wondering how I got to where I am

I'm trying to hear that still small voice

I'm trying to hear above the noise

How many times have you heard me cry out

"God please take this"?

How many times have you given me strength to

Just keep breathing?

Oh I need you

God, I need you now.

Though I walk,

Though I walk through the shadows

And I, I am so afraid

Please stay, please stay right beside me

With every single step I take

How many times have you heard me cry out?

And how many times have you given me strength?

How many times have you heard me cry out

"God please take this"?

How many times have you given me strength to

Just keep breathing?

Oh I need you

God, I need you now.

........

 

July 4th

Up to no good with sister

Checking out the menu..

11 months

 

Crawling!

10 months!

Ok so I'm 2 months behind. For some reason I thought I posted last month. Obviously I have a lot to update you guys on then!

Charli is a big big talker. She babbles CONSTANTLY. They say she has the vocabulary of an 11-12 month old. This is the only category she is ahead of her age or adjusted age. Well of course she is. You know what they say.. "She get it from her momma." Speaking of Momma... Charli says momma, dada, bah-bah, and heeeeyyy. Yes just like that, dada walks into the room and she says "Heeeeeyyyy dada." Total ham I'm telling you.

She's eating all the fun baby foods like rice cereal, bananas, apples, pears, green beans, peas, carrots, sweet potatoes. We even tried avocado, although she wasn't a big fan. She recently started trying to drink out of a sippy cup. I talked with the nutritionist this week and we get to start on yogurt, pureed meat and little cracker puffs. That's going to be pretty fun to watch her try and get them to her mouth.

Charli sits up very well on her own now and can go from sitting to all fours and back up again. Just this week she started trying to crawl. It's so cute! Hopefully I can get the video posted for you to see.

As far as Doctors go things are going pretty good. Most of her appointments come around every 3 months so we just got through with a lot of those. Shes about 26 inches long and 15.5 lbs which puts her at 5% and 3% respectively. They all say its ok because she started out small she will probably stay small. Her cyst is doing good, still staying stable. We will have a repeat MRI in September to compare to the one she had when she was 2 weeks old. That will give of a better idea if there have been any significant changes. We don't see the hematologist until next week. We are hoping that her platelet count will be over 150,000. If so we can start the count down to being discharged from hematology's care. Her platelets have to stay over 150,000 for 9 months, so we've still got a while to go even if they are where we want them to be next week. Its not that I mind going to the appointments it just so hard to have to help hold a baby down and watch her scream so they can draw blood. It's heart breaking. More than once I've told them no more.

To sum it up Charli is doing pretty great! All her doctors and caregivers are so pleased with her progress. The neurosurgeon told us we were really lucky, but we know that's just not true. We are just really blessed by all your prayers for our sweet girl! Thank you, thank you, thank you!

Ill leave you with lots of pictures!

Baby dedication on Mother's Day

9 months

Memorial Day

First time in the pool!

Fun with Niko

Swinging with Daddy

8 months old!

I'm pretty far behind this time, last week was a busy week and I kept saying "I'll definitely do it tomorrow..." So Charli turned 8 months old on April 14th! She is really really close to 14 pounds! It's so hard to look at her now and remember how she started out so so small.

Everything is going good with doctors appointments. The neurosurgeon said everything was stable.  They plan on doing one more ultrasound in June before her soft spot closes up. If everything looks good at the last ultrasound they will just monitor her with head circumference and developmental progress. So here is to hoping everything is stable in June! We sure would love to cut out appointments any where we can :) Speaking of cutting out appointments...

We saw the Hematologist at the end of March and her platelets were 115,000!!! This is the highest they have ever been on their own. They were so pleased with this number and so were we! Normal is 150,000 or above but she's working on getting close. They said we will come every three months and once she reaches 150,000 she has to stay above that for 9 months. When she does that we will be discharged from their care FOR GOOD! Don't get me wrong, I love St. Jude, they do awesome work there and the staff is great. But these are by far the hardest appointments on her and we would just love to not have to put her through all the blood work.

I can't think of anything else of major significance so this post will be short. I promise I'll make up for it next month ;)

Can you say personality?

Charli. She's full of it. We call her a ham all the time, because that is exactly what she is. This kid loves attention. Loves to get it and give it. She squeals and screams and smiles and grabs. She's so happy as long as she is being loved on or loving on someone. And trust me there is no lack of love around here. Shes a people person, a social butterfly. The only down side is we really have to work hard on alone time. Laying in her crib and going to sleep by herself, playing in her swing or chair by herself or being in a play pen. All of those are ok if someone is right there with her but don't you dare walk off to get something done. No ma'am, its Charli time all the time! She's spoiled rotten and I love her for it. Things can wait, babies only stay little for so long.

Getting there

Doctors appointments are going great. Not to many since the last post since we only see most of them every 3 months now. She had her head ultrasound and saw the neurosurgeon Monday and her cyst it still staying stable. We will have another US and appt in 3 months. Her head circumference is staying in the normal curve. All good news PTL! We has an audiology appointment a few weeks ago and hearing is great! The reason we so that is because she had gentamicin in the NICU and it can cause hearing problems. Shes had two tests so far and have passed both wonderfully. Although I could tell you she has good hearing because she can hear you coming down the hall while she's sleeping with her sound machine on ;) We go to hematology, neurology, and endocrinologist in the next two weeks so I will have an update on those next month.

Charli is still eating really good and now she is doing so well with the cereal I think we will start baby foods soon. Im thinking about pureeing my own. Any moms out there do this? Is it worth it? So again next month we should have some great pictures of baby food faces! Oh and she's almost 13 pounds!

She had her picture taken for the Children's Classic for the Covington Leader so if you live in the Tipton County area make sure to pick your paper up and don't miss it! I must say her picture is pretty stinking cute.

And I leave you with more pictures!

7 Months!

Children's Classic

First stroller ride around the neighborhood

A big girl and an emotional Mommy

6 months! Six! Half a year! Where did the time go? It seems like just yesterday I was holding my little 3 pound baby for the first time. Now she's a 12lb 24inch long ball of joy and bundle of energy! This sweet girl is spoiled rotten and sure keeps us busy. She's a very social baby, meaning she likes to be around people ALL the time. There's no leaving this one to play by herself too often. She is also a very happy baby. Always smiling and squealing. We still haven't mastered the laugh yet but boy can you tell she wants too. She will get one out every now and then. She had her 6 month check up and shots yesterday and everything looks good there. She's on the low side of the scale but we new she would be. We also started to try rice cereal. Pretty funny, she just didn't know what to do with the stuff so she just tried sucking the spoon like a bottle. Which resulted in cereal flying every where.

We still have lots of appointments to go to... Neurologist, neurosurgeon, endocrinologist, hematologist, ophthalmologist, audiologist. But it seems that the appointments are getting farther apart and she's passing with flying colors! She's definitely are miracle baby, sorry if I sound like a broken record. We are just so happy she's come so far and doing so well. We thank you so much for your continued prayers.

Couldn't do it without all of you!

TEIS has started sending therapy out once a week to work with Charli and make sure she is hitting all of her milestones. She is doing pretty good with it, except she still hates tummy time and likes to scream and roll herself off the mat. But hey at least she is rolling! We are so lucky the State of Tennessee offers this service for preemie babies up to three years!

Just a little tummy time

In all we are doing great and that's for thinking of us and checking in on us! God bless!

Dad and his minnie me

Big sister love

Big girl in a bumbo and her favorite toy from Aunt Jen!

Happy Valentines Day!

Little Monster

Cousin Olivia wanted to take a picture with napping baby Charli

 

 

Lots of pictures

Im 5 months old now!

Look at those chunky legs!

Look how far Ive come.. 4 months on left and 1 week on right!

Always moving

Family photo

Christmas cutie