Merry Muscles

A few days ago, I posted a couple of videos of Kinnick and Carver in a baby Johnny Jump-Up. They both LOVED it. However, they're really too big for it. The max weight is 24 lbs and it doesn't offer much support. After posting, a lady that follows my blog commented about "Merry Muscles". Merry Muscles is a special needs Johnny Jump-Up. The small size goes up to 40 lbs. We ordered the medium size (pictured below). I'm not sure how much weight it holds, but surely it can be used a long time. We're excited to get it. We should have it for Christmas.

Here's a picture from the Merry Muscles website....

Can't wait! Oh, and btw.... if you can't get your child to jump..... this will do the trick!

Auditory Conditioning System for Carver

The training protocol for Carver's auditory conditioning system is almost ready. We meet with Kat on December 7th to try out the actual auditory conditioning system for Carver. The lady (Kate) who wrote the protocol is also going to join us to see her experiment unfold. The Blind/Deaf with Cochlear Implants Project was kind enough to write an additional grant to provide funding that will allow the team to develop a tool that will help us get Carver "booth test ready". What does this mean? Carver is Blind/Deaf and has CP. These 3 things really make it difficult for Carver to respond to the standard hearing booth tests that typical deaf children use to determine the correct CI mappings. This auditory conditioning system will be set up on the computer to allow us to track Carver's progress with accuracy. The program will present Carver with different sounds (similar to the sounds that would be presented during a booth test). Carver will use switches to indicate whether he heard a sound or not. An interrupter switch will be used to exclude instances where Carver was "playing" with the switch vs responding to a sound when it is presented. The hope is that we can condition Carver, so that this system can be used to map his CI's in a booth test. If it is a success, it could be used to help other children like Carver. To date, all of Carver's CI mappings have been based on NRI responses - basically, the computer is telling the Audiologist how to map Carver based on how the nerves respond to sounds sent through the CI from the computer. While this gets us in the ball park, it isn't the best possible mapping for Carver. A lot of people have been involved to help make this a success. We're excited to be a part of the experiment, and are very hopeful that this will be a success. Wish us luck!

Still working on jumping....

Kinnick Jumping....




Carver Jumping....

Feeding

So, today our SLP and OT came to observe Kinnick and Carver's feeding routines. After observing, they came up with some new things to try.

The following is what our SLP and OT observed, and what they would like to try as far as swallowing goes:

Kinnick:
1) Breathing. Kinnick has limited respiratory intake and output. Therefore, she needs time to catch her breath after she swallows. Sometimes she needs to swallow a couple of times before she is ready for another bite. I (SLP) think she gets stressed out, then her breathing quickens, then she has to swallow, then catch her breath, and be ready for the next bite. This could cause her to stress out even more, choke, and then refuse, and she's back to square one. During lunch, Nurse Marci did a great job making Kinnick feel safe and comfortable. We (SLP and OT) allowed Kinnick to "wait" for a little bit before the next bite. I (SLP) also cued her to say "wait", which she is still learning to do. At one point, she asked for "more"! :) We (SLP and OT) also let her know when the bite was coming ("Here comes a bite, Kinnick). Kinnick typically closes her lips when she swallows.

2) Limiting oral intake to 30 minutes. Mom and Marci already do this, but I (SLP) wanted to be sure you knew why the limit is 30 minutes, especially for Kinnick. Eating takes lots of energy, b/c of coordinating chewing (or movement of the food to the back of the mouth), swallowing and breathing. Kinnick's breathing is still effortful. If oral intake goes over 30 minutes, the food Kinnick is eating will be used up as energy for eating only.

3) We (SLP and OT) noticed she is not drinking her milk. It could be the flavor. Nurse Marci said Kinnick is drinking or learning to drink from a sippy cup and that Kinnick also likes juice. Kelly (OT) and I (SLP) are excited for her to learn to drink from the sippy cup on her own, then move on to a cup. Go, Kinnick!

4)We (SLP and OT) worked on appropriate refusal ("no, thanks"), rather than screaming.

5) At the feeding conference Kelly (OT) and I (SLP) went to, we learned that kiddos with texture/flavor aversions are given a variety of flavors through their g-tube. The logic is that when gas is burped from the stomach, it can be tasted. Sounds gross, I (SLPL) know, but this is a way for Kinnick and Carver to try something new without it being too offensive. Of course, Kelly (OT) and I (SLP) would NEVER try this without your explicit permission. This was just an idea we were tossing around. We (SLP and OT) will also continue to orally introduce new flavors and textures.

6) We (SLP and OT) are going to work on more oral stim with Kinnick to help with toothbrushing.

I (SLP) am very pleased that she did not demonstrate great discomfort/aversion during mealtime, and was very willing to continue with therapy. Way to go, Kinnick!

Carver:
1) What an awesome little man! You have done a fabulous job of teaching him how to use a spoon! Kelly (OT) and I (SLP) are excited for him to learn to feed himself!

2)We (SLP and OT) are looking at helping Carver close his lips around the spoon, rather than the spoon scraping the food off of the roof of his mouth.

3)He is enjoying lumpier textures which is great. We are still encouraging oral stim with a nuk brush and z-vibe (basically, a rubber tipped vibrating stick) to help with tooth brushing and chewing. Because of his tonic bite, he may need support for chewing and I (SLP) am currently looking into this. Kelly (OT) and I (SLP) would also like to vary his flavors orally.

4) I (SLP) would like oral stim with a nuk brush to take place at home. This could only take about 2 minutes out of his day, if Mom and the rest of the team are ok with that. If Mom would like, I (SLP) would be happy to demonstrate or show you, Nurse Marci and anyone else, how we (SLP and OT) do this.

5)Just like you all encouraged "pretend eating" with the spoon, I (SLP) would like to encourage "pretend drinking" with a cup (for both Carver and Kinnick). This will help them be aware of the corners of their mouth, the tip of their tongue, etc.

Got the "All Clear" to re-implant the Right CI

Carver's Doctor called to inform me that Carver's CT scan came back with good results. He gave us the "All Clear" to re-implant Carver's Right CI. Now, we're waiting on Insurance approval.