The babies turned 9 months old on Friday. We had a Pediatrician appointment to get the final RSV shot, Hep B, and their checkups.
Brody has gained a good amount a weight and now weighs 15.8. We are very excited about his improvements with eating. He is actually eating 4 food meals and 2 bottles per day!!
The Pedi said for us to lower their formula from 22 calories to 20. "Normal" babies are on 20 calories. This is very good because it mean we will be on track to start regular milk at one year.
Madi is doing great. I asked the doctor about the dots that appear on the top of her head, I forgot what they are called but they are from rapid growth. She is growing so quickly. It's nothing to be concerned with.
Gracie's visit didn't go so well. Well, it started out great.... Every single visit the nurse gets their weight, length, and measurements of their heads, and then they enter all of the information into the computer. Gracie's head is growing way too fast for the rest of her body. The growth from last month to this month is extreme. The doctor said it could be fluid not draining the correct way in her brain or a number of other issues - All of which are concerning. We now are going to do brain scans and see Neurology. There are many other "issues" her wrist are very small and her arms are large, her leg, her foot, her eyes and nose, her neck, her curve that her body makes, and a couple of other things that are concerning. He said that Genetics and Neurology will be able to find out what is going on, what disorder she has, and how we will deal with it. He said he isn't sure what her brain function will be. I asked him if he thought her brain was still bleeding but he does not because she wouldn't be active at all. I kept asking him what his thoughts on all this were but he didn't know. He said that he is just as concerned as I am and he will continue to look over their charts every night to see if he can figure it out but it would take a team of doctors to really pin point all of this. Of course he knows I'm worried and can't help but worry until we have our appointment with Genetics next week. I left there shaken. I was not expecting this after all, we were just going for their 9 month check up. We left and on we went to Gracie's appointment for her helmet. We have never been there and as soon as we met the Orthosis he asked what disorder she had. I looked puzzled and he said we have another patient that looks like she does and I can't remember the name of the disorder, what does she have? I said she does not have anything..... I mean come on. He took a bunch of measurements and scans and proceeded to tell me that she has severe misshape, so severe that her helmet will be covered 100% by insurance. Whatever! I picked her pretty little lite pink helmet, they told us she would get it in a week or two and we left.
I have never been in denial about my kids' situation... ever but when I look at Gracie I see a beautiful little girl that touches your soul with her smile. What I don't see is a disorder or wrong. There is nothing wrong with her but everything right. I just wish people who don't know her would understand how she has fought to live from the moments she was created. I wish people would know how she couldn't move and was stuck together because she had no fluid, how her kidneys didn't work at all, how we were told to plan a funeral, how she was the smallest, how she had all odds against her but she beat them, how she got a deadly intestinal infection and didn't die. I wish those who don't know her would see how special she really is and how she is a true miracle, a living, breathing miracle from God. That is what I wish. I hope her smile is never lost because it is from God. But most of all, I pray that she does not have to go through any more invasive procedures and she can just grow and be happy.
I don't know what the future holds. No one does. What I do know is I will take one day at a time. Deal with what is set in front of us and never forget how lucky we are to have each other and be a family of 5.
Krista
