Saturday, March 20, 2010
March 20th, 2010
It's been awhile since I posted. So, I'll try to update you on everything that has been going on.
We had Kinnick and Carver's IEP meeting. I wasn't thrilled with the meeting, but then again, I wasn't real sure what to expect. IEP stands for Individualized Education Plan.
Carver's primary goals will be to sit, roll with purpose, stand, learn to communicate, and to improve feeds. There are a lot of details in the plan to explain what we'll do to get there. The part that I wasn't thrilled with was the amount of therapy that Carver will receive. He'll see his TOD (Teacher of the Deaf) 80 min/week plus 30 min/week assisting Carver's other therapists. He'll see his SLP, PT, and OT 90 min/MONTH. He'll see his VI teacher 60 min/week. I'm happy with the TOD time and the VI time, but I'm not happy with the SLP, PT, or OT. Carver has so much work to do that I just don't feel like this is enough time. I was originally offered 60 min/MONTH for SLP, PT, and OT. The school agreed to meet me in the middle and gave me 90 min/MONTH. I wanted 120 min/MONTH. They seem to have some really good ideas and a good plan, so we'll see what happens.
Kinnick's primary goals will be to walk up/down stairs using a hand rail. Learn to protect herself from a fall. She will work on strength exercises. Learn right/left. This will help her get around later. Learn where her body is in relation to other objects. She will explore many textures with her her hands (wet, slimy, cold, bumpy, rough, etc). She will learn to hold her own cup and spoon. She will work on decreasing her hypersensitivity to taste, temperature, smell, etc in order to improve feeds. She will learn to undress herself, and she will become familiar with a braille writer. I wasn't unhappy with the amount of therapy that she was given. Believe it or not, she was offered more therapy then Carver. She will receive 120 min/MONTH of SLP and OT. She will work with O&M (Mobility) 30 min/week. She will receive 80 min/week of VI, and she will receive 40 min/MONTH of PT. I think Kinnick is receiving an appropriate amount of therapy.
The other thing that really bothered me was the reality of Kinnick and Carver's disabilities. The IEP process really puts you face-to-face with the extent of the disabilities. I have plenty of healthy term kiddos that have gone to preschool. Therefore, it is very clear that there are some pretty big differences between what Kinnick and Carver will be working on vs what my healthy term kids have worked on in preschool. Kinnick and Carver are spending a great deal of time working on developmental items that come so naturally to a healthy term child. A lot of Kinnick's delays are a result of her being blind and her severe tactile/sensory issues. I believe a lot of Carver's delays are related to being blind and deaf. I just hope we have an aggressive team that is prepared for the challenge ahead of them. We have a huge mountain to climb and I'm in a hurry to get to the top.
Outside of the IEP meeting, Carver got tubes in his ears on Thursday. The surgery went well. He really needed the tubes. His right ear has lots of junk pouring out of it. His poor head had to feel terrible. It does appear that the seroma is shrinking in size. I'm still hopeful that the seroma will be gone in the next week.
Bob and I leave for Cancun, Mexico first thing Monday morning. Nurse Jane and Nurse Marci are working lots of extra hours to help with Kinnick and Carver. My sister, Tonya is coming to stay with the kids, and my Mom is coming to help over the weekend while we're gone. I have the best nurses. I don't know what I would do without them. We have been really lucky. My sister and my mom have both been so generous with their time. They always happily agree to come help while I'm gone, and the kids love having them.