Went really well. She is developmentally right on track, if not ahead in some areas.(YAY) Her only problems were that she has lost some weight and won't bear weight on her legs. The thought is that it is a sensory issue because she has the strength, but chooses not to bear weight on her legs at all. It is a wait and see situation that I will be all over until she does it. She gets all over the place by rolling, rotating her body and pushing off on her foot. She scoots backwards and gets stuck in furniture too. Completely normal for now, but it won't be if it does not change soon. We are supposed to ask the Pediatric Neurologist about the weight bearing too. Our pediatrician does not seem to think it is a big deal at this point. I told her Seth walked late so it could be all his fault-haha.
Her weight is down because she is refusing bottles. Whenever she drinks a bottle she has multiple seizures and she only has them now when she drinks. Sippy cups too because you have to suck out of them. Some days we have only gotten 5ozs into her. I have to make a call into the Ped Neuro to update her progress tomorrow and will report this, but I was also told to wean her onto a cup. With persistence we will be able to do this (so I am told). I don't believe it. The kid is awake 8 hours of the day and I can't see myself now trying to get her to down 24ozs out of a cup for 4 of those hours. I don't feel like I have time to be persistant. I will try it, but with two other older active children I am not hopeful for success. That and the fact that she does not even hold a bottle, Yeah. lol In the meantime, I bought new sippy cups and will take out the stoppers and got the fastest flow nipples for her bottle to see if that works.
No vaccines for a long while now. People with Epilepsy are not supposed to get certain ones and her Doctor asked if she was getting vaccines today (she said because she has too, AAP), but agreed with me that it would not be a good idea to get them for a long time. Her system is too sensitive.
It feels good knowing that she is ahead of the game cognitively given all the challenges she has had so far. SO, good appointment.
Now off to try the fast flow nipple. :)
OUR FAMILIES JOURNEY: OVERCOMING A DIVERSE AMOUNT OF LIFE'S CHALLENGES. Type 1 Diabetes, Autism, Epilepsy and G-Tube Feeding.
2 comments:
Does Keira really like her bottles? For some reason I was able to get rid of bottles completely by age 1 for K & B. I was shocked!
I hope the new faster flow nipples will work. The stoppers in sippy cups are awful. I took them out with both of my girls because it seemed impossible for them to create enough suction to get even a tiny drink. At that point who cares about spills!
Maybe try the cups with plain snap on lids with a spout and no stoppers? We primarily used those. I'm sorry Keira has been having seizures and I hope she will grow out of them, fast!
And I'm sad for Kailyn, too. I know you are supposed to help her be tough. And by gosh she IS tough. But it all really sucks. I'm with her and hoping for a cure soon!
How is Sam doing? You and your kids have really had a tough couple of years. I understand, and know that you must be thinking enough is enough!
Lots of love to you all!
Yes, enough is enough, but I have a good support system in place that helps me to get through and to stay positive most of the time. The faster flow nipples did not work and she HATED drinking out of a cup. I need to try those ones that you are talking about. I saw them and thought about it, but did not pick one up in hopes the faster flow or sippies would work. I also called the ped neuro to see if he had suggestions to get the liquid in. I know Keira hates the bottles now, but I have to keep her hydrated.
Sam is doing great. I was about to make a post about him today. He got a new big boy bike and thinks he is so cool! :) Hope all is well with you :)
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