Blogger has finally let me into my blog. It's been blocking me for some time, hence the lack of blogs. I have some huge updates on our baby girl. First, she's making HUGE strides. She's playing with toys that are appropriate for her adjusted age. Her doctors and therapists agree that she's moved beyond her 0-3 month development and is well into 4 months. While this seems small, as she's 3 years old, she's been "stuck" in a newborn stage for months. Her development has blossomed in the last month. The feeding tube has been nothing short of a miracle. She's gained almost 6 pounds! Her hair is filling in and her cheeks too. Her eyes are lighting up. She no longer has purple rings under her eyes. You can just see the life pouring back into her!
We were referred to Kennedy-Kriger Institute in Baltimore. They have one of the best feeding clinics on the East Coast. We had to wait a long time, both to get an appointment and wait for the adoption to be final so she would be on our insurance. So FINALLY the time came. Carlee and I went up to Brandy's on Wednesday so I wouldn't have to drive into Baltimore. The weather was horrid and the traffic was bad and I thought we would never get there, but we did. Brandy drove us into the city on Thursday morning. In the rain and traffic. Then we waited some more.
Three doctors/specialists came in. They sat with us for over an hour and listened to her life story. Which is long and sad and still makes me angry. Then they watched her eat a few bites of food. Poor little thing gobbled it up and then immediately started gagging herself. They within in seconds said that it wasn't just rumination. This was HUGE news. Rumination has been her diagnosis for awhile now, something that is psychological, and not something actually 'wrong'. They said her swallowing mechanisms weren't working properly. Her food is sitting on her gag reflex, causing, well, causing her to gag. I told them that she can throw up hours after she eats. They gave me a big long medical word. When your body isn't getting the right nutrition, it can make itself throw up. Which is probably what was happening. They gave me a very detailed feeding plan. The goal is to get her to tolerate food enough that she can lower what she gets on the tube until she doesn't need it anymore. It's a long process, but it's so much more hopeful than anything we had before. We were also given a plan to raise the amount of food she gets by tube per hour so that she can have time off the tube. The goal is 12 on and 12 off. This means she could either go all day free of the tube OR go all night free of the tube. We'll probably choose night right now because she's sleeping in her swing and I'd love to get her back into her crib. It's just too big of a risk right now with the tube.
So here's the sad part. They said the cause of the this probably stems from poor feedings her first year of life. Because she was a micro preemie, they believe she wasn't fed properly her first year. That her formula was thicken with cereal and that she was probably offered baby food too soon for her adjusted age. Because her swallowing wasn't good enough, her body started the gagging as a defense mechanism to keep from choking. This all seems to make perfect sense from what I've heard about her first foster family and from the medical records I have. So once again, this was something that could have been prevented by proper caregiving. But I won't dwell too much on that.
She's now had three meals and has only gagged a few times, keeping nearly all of it in her body. She's eating 2 ounces of stage 1 baby food and a few puffs to keep her chewing in tact. She's allowed only 1 ounce of liquid a few times a day. But she's doing amazing. She just started on a new seizure medicine. Her seizures have been getting out of control again. This is typical for Lennox-Gastaut Syndrome. We have her on the new medicine and her old medicine. Hopefully this will control the seizures without causing any delays in her development.
Well that's about all. Prayer works and God is amazing. Our baby girl is slowly showing us who she is and I bet she surprises us all!
