Wow, what a crazy past couple of weeks. Things have been so up and down starting with Kendall's 2nd birthday party. The crowd was small per our design, with the thought about focusing on her completely and not a monster crowd like we had with Carsen's 2nd birthday party (80 people). Kendall's 1st birthday was mentally rough going and we were able to pass this next milestone with a better understanding of what Kendall's future may hold. Overall, the day went well and we closed it out by having the Lucania kids over for the night.
Kendall has her 2 year review coming up next week. These reviews are conducted every 6 months to assess how well she is progressing in her development. All of her specialists get together to give their synopsis and we all compare the before/after notes to determine what may transpire over the next 6 months. Usually, her illnesses and hospitalizations have set her back but I think that the last 6 months have been solid for her. She will most likely place at a 9 month old for most of her areas except speech. She continues to make gains in her fine motor skills and is getting motivated to grab toys within her reach. She can also hold herself up in a standing position, but cannot get herself into that position. She is not talking, but is mimicking some basic sounds and is making more noises than she did 6 months ago.
Her largest gains that I have seen are in her feeding. This has been a significant area of concern for us since she was born. Her gag reflex is starting to go away and having food in her mouth seems to be a more familiar thing to her. We try very hard not to use her feeding tube if at all possible. Oral feedings are the most important thing for her to master at this stage of her development. We use the tube to supplement her feeding or to feed her when she has no interest in letting us get the spoon near her mouth. Overall, she has been doing great. She still has to eat mostly pureed foods, but we're getting more into the textured foods and hopefully she will continue to understand that food in mouth means that her hunger will go away. She's a long way away from eating a sandwich or picking up food on her own to eat when she is hungry. We continue to make all of her food using our new VITAMIX blender, giving her the chance to taste more.
One other developmental gain that she has made recently has caught our attention. I'm not sure it is something that appears on any evaluation list, but I think she understands the whole pooping in the toilet thing. A few weeks ago, I decided on a whim to put her on the toilet when she was making her grunting sounds. We always know when she is filling her diaper and I don't know why I decided to do sit her on the toilet, but I did. It's been an on and off thing for us to see if she'll poop in the toilet, but as of late I've been putting her there at times when she usually goes, but hadn't shown us the signs we are used to seeing. So, last night right after dinner, I put her on the throne and she made her business! I did it again this morning after breakfast and again after dinner tonight. Both times, she made an attempt to go and made #2! I know that she doesn't have the wherewithal to tell us she needs to go, but the fact that she went when placed there is something that made us so happy. There have been very few signs of her understanding things and to see her act upon sitting on the toilet told us that she really gets it and is continuing to learn. The best part is that she seems to have fun with it and when she is done, she starts clapping!
Well, our house is in baby and kid mode all the time and when things are smooth with Kendall, the house is in a better place. She is digging 'new baby' (Cailen) and likes to play with her. Carsen still likes Cailen better (maybe since she looks so much like him), but in his own way he is working with Kendall and her development. Just the other day, Kendall got to play with his Ironman doll so he could play with one of Kendall's new toys. Kendall didn't care and had fun regardless.
One last note- I found a few connections to other parents with WHS children. We have been somewhat silent lately in our quest to communicate with others in our situation but have read some great stories that we will be following. Here are a few:
