A proud Mama...

This past weekend Grace competed in a tournament in Pennsylvania. She did an outstanding job! We are all so very proud of her, not just for how well she did, but for how much effort she put into doing her very very best. Way to go kiddo!!!

We sadly had to put our beloved fur baby to sleep this week. Belle was an angel with fur, but was beginning to suffer from the effects of old age. It was getting to the point that it was the best choice to let her go into our heavenly fathers arms. I'm sure she'll keep the welcome mat of heaven toasty warm until we get there to meet her again.

And we spoke with the Genetic advisor today... a whole lot of nothing to tell. Chars lab work was askew again, but we still don't know why. The good news is that the metabolic errors they tested for were all negative. Her methylmelonic acid however, is still too high. The first lab showed her at 58, and this last test had her at 429. Obviously not such a great number as the normal is under 6 for her age group. We are still waiting on the chromosome testing to come back. We see neuro for another CT scan and an EEG in a few weeks. Until then we wait.

Longest week ever!

This week is dragging.... I need some answers with my baby girl. Its really weighing heavy on Rob and I both. We can see there is something going on just by looking at her, she has no muscle tone, in addition to other things. She is ours, we love her no matter what, but something isn't right. We put a "full size spare" on her head to make her giggle...well, she didn't, but we did!

And the race is on!

This week has been a whirlwind of activity here in the Luce house. Grace had her honor role breakfast on Wednesday morning. Which was a lot of fun by the way! I cant being to tell you how proud I am of my sweet baby girl, shes amazing. Aaliyah got her ears pierced this week which really made her happy.Shes wanted them done for quite some time, so finally we let her. Jake turned seven this week! Where on earth has the time gone?

Our sweet Charlie is doing good too. We found out that she loves ice cream! She sat on Daddy lap and ate almost an entire ice cream sandwich herself!! She has and appointment with physical and occupational therapy on March 1st and we will start therapy soon after that I hope. Hopkins is able to get her in with genetics on March 12th so we are hopeful that appointment will yield some concrete answers.

Hey mama!!

Yesterday my little Aaron gave me a well needed smile. While watching some television with the kiddos, Aaron hopped up on the sofa with me. He looked at me with a smile and then plopped himself right next to me, he threw his leg on mine and said "oot, oot" (that's Aaroneese for foot). That little stinker wanted me to rub his little foot! He kept on and on until I tickled his little stinky 'oot'. I needed that smile!

So our little Charlie-bird.... she's as happy as can be, a little gem we love so much. She's started chewing on her hands, and considering she hasnt until just a few weeks ago this is wonderful news! She's smiling and doing things a baby should do. We did get in to meet with her pedi and the news wasnt exactly what we expected. We were expecting her amino acids and organic acids to come back fine. They did not. At this point we do not have a concrete answer, other than something isnt quite right and we have a few ideas of what it could be. Right now things point to a mitocondrial disorder. We have a referal to see a genetics physician at Hopkins, and it looks as though we will be able to get in a little sooner than we initally thought. 



Handmade

For you created my inmost being;

you knit me together in my mother's womb.

Psalm 139:13

It's amazing to see how our little ones are each so unique and have their own individual personalities. Each one so different, but all a masterpiece knit together by our heavenly father himself. I could have never imagined being so blessed just once, let alone six times over! Thank the Lord for filling our house!

Tomorrow we meet with Char's doctor to 'talk' about more lab work and to weigh her and check on her growth. Last week her doctor suggested we meet with an endocrinologist if nothing has changed. Rob and I selfishly are more content just letting her grow at her own pace. I dunno... we really don't want anymore bad news. We are so thankful that Aaron has overcome and adapted, but enough is enough already. We haven't shared much of whats going on with Char with anyone other than she just isn't growing like she should. We need time to find some concrete answers, and time to digest everything as a family. Right now, we're going to focus on knowing that God created her and knit her together as perfect as perfect could ever be. 

Stepping Back from the Cheerios

Taking a minute to step back from the mess of half chewed strawberries, cheerios and animal crackers I looked at my kiddos and thought about how blessed I am to have them. The homework, messes, piles of dirty clothes, countless toys, stock in huggies, giggles, and I love yous are a constant reminder of how dull our lives would be without children. Because after all, children are a heritage.

We have a preliminary answer on Charlies growth. Her pedi is calling it Constitutional Growth Delay. Right now she's a hefty 12lbs and 23.5 inches tall! Yay for growing! She's healthy, happy and all of her lab work so far looks good. We're still waiting on the amino acid thingy and the organic who-knows-what, but her pedi doesn't expect there to be anything abnormal, more just a matter of ruling out those things. We love the little bippy and I guess this means we can snuggle out little one a little longer than we thought :)

Suprises Every Day...

Tomorrow we find out why our littlest little is staying so little. They suspect her thyriod levels and hormones are playing into the lack of growth but we arent sure. We will meet with the doctor in the morning to get some solid concrete answers. We pray those answers are simple and easy to adjust to. We are keeping in mind that the smallest things in life often bring us the greatest joy!