Just giving an update on Tesh.
She is doing awesome! Her development is going well. She was nearing the time to where an OT would have been needed, but crawled at the last minute before I had to make those arrangements. She started crawling at 10 1/2 months, then she started pulling herself up on furniture just a couple weeks ago at 11 mos. She'll be 12 mos. (1 year old!!!) Oct. 18th. We are very excited about it.
Her dysphagia issues continue to improve. I've moved her from pureed foods to thickening it up more, and chunking it slightly with very soft foods. (example- bananas) She'll still get overwhelmed at times with the thicker stuff, but she pulls through it ok. She hasn't gagged in a few weeks. She's also learning to drink from a sippy.
As far as her allergy/intolerances go..... we've found she can't have oatmeal either. And she's allergic to dogs. :( (non-hypoallergenic dogs) Poor girl!
Her head is coming along great. We had our 3 month post operative appointment yesterday. An xray was taken and showed good improvement of head shape and no progressive fusion. The skull, where it was cut, is now "jelled" together, but that's ok. The "jelling" will still move, allowing the brain to grow properly. In the xray you can see the faint grey areas where her gap was and that's the "jelling" What we don't want is there to be hard skull in those areas, that would mean premature fusing again, which would result in a second surgery. Right now she is safe. She is deemed helmet free. That "jelling" will protect her head for the most part. Some extra care needs to be had still, but there's no complete gap like a newborn's soft spot anymore.
There was only one main concern I still had about her head that I talked to the docs. about. Her sweet forehead. Where her temples are and it dents in, leaving her forehead very narrow still worries me. My personal concern is that the metopic is fused and that her forehead won't move. The docs. do not see that happening, at least not for medical concerns. They said that she'll probably always have her narrower forehead because the older they are when surgery is had, the more "stuck" the skull gets. She was much older than when they normally have these surgeries because she had so many other medical issues that needed attention first. They said it should widen a little as she grows, but that it'll be something her hair will have to cover. It was also discussed that if it bothered us we could have her go in for another surgery for cosmetic reasons to fix her forehead more and that they usually do those when they are 7 or 8 years old. I turned it down right away, I won't make any of my kids go through a surgery like that for just cosmetic reasons. If it bothers her that much then she can beg me when she's WAY older and we'll talk. But I have a feeling that it'll be just fine. She's got such a happy-go-lucky spirit about her, most of the time. I don't see this getting her down.
But for now.... she's healthy! Happy! Learning her boundaries! and enjoying life as only a baby, soon to be toddler can..
She is growing up way too fast. It was nice coming into an appt. feeling very optimistic and going away with a smile of relief on my face.
While we were there, we talked to an interesting 19 year old girl that had spinabifida. They had been in and out of Iowa City since she was 7, her mother said. This girl was walking so normally, I would've never guessed, that that was what she had. She had her almost 2 year old son with her and was told she shouldn't have babies, and she's looking forward to having more. And she was in a bike accident. So with all these things together, she's had to learn how to walk 4 times. She had such a good attitude about life. It was inspiring hearing her story and seeing a family pull together like that. She is "walking" proof that miracles do still happen.
