The orthotist called me back about the helmet we were discussing having Isabelle fitted for to help reshape her head. Well he doesn’t feel like the helmet will be beneficial to her and that the risk with putting counter pressure on certain parts of her head could cause problems with the way her shunt is working. Basically, the helmet is a no go, because it could be too risky and cause her to have internal cranium pressure that we do not have right now and we do not want to have. He suggested that we talk with the neurosurgeon and a cranial facial surgeon and see if surgery would be an option for Isabelle, so not having to go back to the neurosurgeon for 6 months was too good to be true for me, we go in January to discuss the possibility of the surgery and what it will involve and if it will be of any benefit to Isabelle.
We had a check up on the 3rd of this month with the neurologist (this is the doctor who told me that Isabelle was missing the communication part of her brain) and she is doing great. She was interacting with the nurse practitioner and the doctor, she would smile and move her hands around, she was pulling on her pacifier, and she even started babbling to them before the left the room. Her seizures seem to be controlled right now so it’s just a matter of as she gets bigger having to adjust her dosage. I asked when they might consider doing a CT scan or a MRI and right now that don’t want to risk having to sedate her to do the scan for no specific reason, but they probably will do one when she is 2 or 3 yrs old. We don’t have to go back for 6 months to them unless something comes up between now and then. When we do go back in 6 months they are going to do an EEG (brain activity test) to determine what is going on because there is obviously a lot more than they ever thought there would be.
On the 4th we went to the ENT that we had been referred to for possible putting in tubes for her ears, well sure enough we are getting tubes put in on the 23rd. I am told that she will be back to her normal self on the very next day so let’s hope so. I just pray that the tubes help because you can tell she is still having trouble with her ears and that they bother her a lot.
Isabelle had therapy on the 17th and her therapist was so impressed with how well she is doing that we are going to make plans to up her therapy sessions at the beginning of March. She will start vision therapy once a week with a vision therapist in January. So she is continuing to make good strides in her development.
Quincey has had a busy month so far with school, they have sung for the forever young at the church and also at the Presbyterian Home. They visited the Christmas tree farm and then visited Santa at the bank the next week. I didn’t tell Quincey they were going to see Santa because every time I’ve asked her if she wanted to go see him and tell him what she wanted for Christmas she said NO!, so I really didn’t know how that would go. She sat in his lap and told him that she wants Pink Toys for Christmas. That’s all she tells anyone that she wants so who knows what Santa might actually bring. She had her Christmas party and I went and helped her teacher with that and all I can say is Bless the Teachers, they have their hands full.
Quincey, Isabelle and I were all in our Children’s Christmas play at the Church. Quincey was a Hula girl ornament, Isabelle was baby Jesus and I was Mary. Thank goodness I didn’t have a speaking part. I’ve got to watch the video to actually see the play but everyone says that kids did a great job and from my view point they really did.
We think Isabelle is trying to cut some teeth so maybe she’ll get her some teeth for Christmas. You can see little knots under her gums where the teeth are pushing and she is gnawing on her hands constantly.
Both of the girls have been to see Santa, but not at the same time. I pray that everyone has a happy and safe Christmas and that we all stop to reflect on what the true gift of Jesus is to us.
