Wednesday, March 31, 2010
Wow, it was soooo nice out today.
Carver is loving his new tricycle. It really makes him work on head/neck control while giving him just enough support.
I can't wait for Kinnick to figure out how to pedal her tricycle. She makes us push her around forever. We got some new pedal attachments, but she's still not strong enough to pedal herself.
Tuesday, March 30, 2010
Monday, March 29, 2010
Sunday, March 21, 2010
My oldest daughter, Kirsten received her acceptance letter to Dental Hygiene school. I'm so proud of her. The University only accepts 36 students a year with up to 200 applicants per year.
Ok, so you've probably been wondering where the videos are that I've talked about. Well, the stupid Flip new generation doesn't "consistently" work with a Mac computer. The USB port doesn't fit. It's a hit or miss if you buy one that will work. We bought 4 or 5 of them before finally giving up. I called Flip and asked if they could send me one that would work for sure. They said that they couldn't even send me one that would work for sure. You would think they would do a recall if they knew there was a problem. However, they did tell me that the problem was only with the new generation version. So, I bought the step down version that only records an hour instead of 2 hours, and guess what... it works. So, now I can finally get some videos going. It probably won't happen until I return from vacation, but I'm excited to start filming.
Saturday, March 20, 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.
Thursday, March 4, 2010
Wow, things have just been crazy lately. The trip to MI went well. Kinnick's eye is still irritated and is really watering, a lot. It seems to be pretty sensitive. I called the doctor today and they said this is normal - just part of the healing process. Carver's eye is still getting nasty junk in it. The new med that we're using is helping, but the eye is still irritated. Since the membrane was removed that was blocking Carver's pupil, he has really started showing an interest in lights. He's starting to put lights up to his good eye.
This is our last month with Rainbows (EI - Birth to 3). Today we met with the Audiologist. She brought an audiometer to test Carver's response to certain frequencies. If you remember, I wasn't satisfied with the "no change" that we received in the booth test. I know that it was a very subjective test and the Audiologist wasn't familiar with Carver. I'm not faulting anyone. I just had a gut feel that Carver could hear better then the results indicated. The audiometer produces sounds like you would hear in a sound booth. She presented several sound frequencies to Carver in his home environment. He responded very nicely to all of the sound frequencies presented - indicating that he probably does hear better then the sound booth indicated. The difference was that we were able to share things that we've learned, with the Audiologist, about Carver's responses or behaviors to sound. For example, asking Carver to listen before a sound is presented. Once the sound was presented, and Carver showed a response (typically a big smile), he was rewarded with his favorite chew toy. We are hoping to develop a consistent way for Carver to tell us that he hears. It's important to get good feedback from him in order to tweak his CI programs. The more we can tweak them, the better he will hear. Right now, his map is set at somewhat of a "generic" setting. It could be better and it could be worse. His newest thing is to do this little wine whenever he drops a toy. It's almost like he is saying "Oh, man!" No words, just a wine. He did this all of the way to/from MI in the car. Anytime he dropped his toy, you would hear the little wine and see a 1/2 smile. He knew that Nurse Marci would climb over the seat to retrieve his toy. So cute!
Kat will be back on Monday to work more with Carver. We're always excited to see her. She has the best ideas and she is so good to work with. She has an amazing way of connecting with Carver.
We seen Carver's ENT on Tuesday. Carver continues to have fluid behind the eardrum. He is scheduled to get tubes in his ears 3/18/10. I hate having another surgery, but what do you do? The fluid isn't coming out. The Dr. believes that it is possible that the seroma and fluid behind the eardrum are related. The hope is that the seroma will also drain with the tubes.
Kinnick also needs a sedation scheduled. She needs to have the pressure checked in her eyes. We want to make sure that the surgery brought the pressure down to a reasonable level.
We are preparing for K&C's IEP (Individual Education Plan) meeting on 3/12/10. K&C's Dr. does not want them to attend school at this time due to all of the illnesses going around. He has sent a letter requesting home bound services. I think it will be good for the team to get to know K&C in their home environment, so not all is lost.
Our Yukon XL lease ended, so we had to get another vehicle. We thought long and hard about what to get with 2 handicapped kids and 5 others. While I loved my Yukon XL, it was so big and used a LOT of gas. When gas prices go up to $3/gal, it costs around $120 to fill the tank. A tank lasts about a week. So, with that in mind and the fact that leasing an American vehicle is the pits right now - $1,000/month to lease the same vehicle (currently we only pay $600/month - big increase), we decided to go with something a little smaller, but with quite a bit of cargo space. We are now the owners of an Acadia. It's quite an adjustment. It's like going from a house to an Apt. I think it will work out fine, it's just taking some time to adjust.
Ok, enough for now.