Saturday, May 12, 2012

Update-Lots going on!

I fully expected Caleb to start going downhill after my last post....but he hasn't!! He is still able to hold on when you hold him and he army crawls sometimes too.  We are so excited to see his continued energy, maybe the vitamins are making things more even for him, or maybe they are just keeping him from going down.  Whatever the case, Praise God!  I just received some Juice Plus vitamins from an awesome friend so I have started giving him those as well as his prescribed vitamins.

Don't touch my corn!
 His appetite has gone up some and we aren't having to threaten (haha) him as much.  The other night he even ate what we ate! (chicken fried chicken, peas, and mashed potatoes) We have switched to goat's milk and pediasure in his bottles and he seems to tolerate it fine.  We are really trying to get the calories on him so we are trying out different mixtures and might try and switch to a higher calorie drink.

Along those lines....we were able to attend a Mitochondrial Disease meeting last week and it was great! There were about 8 families there and they shared some good information and then we hung out and talked to each other.  This was only the 2nd or 3rd meeting in our area but we plan on attending the bi-monthly meetings from now on.  Many of the families have kids age 5 and under with Mito so it was great comparing notes with them. Since there is no cure for Mito you really just manage the symptoms.  So for some of the kids their GI doctor is the main one they see since they have lots of stomach, intestine, digestion, issues.  Some have major heart or lunch issues.  Caleb's main issue is his muscles.  So after talking to some other families Jason and I are considering adding some other doctors to Caleb's "team."  We went to a GI last summer and I really liked him.  I think we will go back if for nothing more than yearly check ups, but he may be able to help us as well.  Caleb is still really small and has a hard time gaining weight.  At the end of last year he was up close to 18.5 lbs.  But recently he was closer to 17.  It seems like he gets stuck and can't make it over a certain point.  Last summer we couldn't get him above 16.  We REALLY don't want to have to do a feeding tube so we want some help on how to get his weight up.  If he needs the feeding tube we of course will go that route (It wouldn't take the place of his normal eating, just supplement)  but if there is something else we can do we want to try that first.  So it's probably best we have a medical doctor helping us out.  We are also looking at some other "natural" doctors and practices to add to Caleb's "team" and at this point are a little overwhelmed with where to start!

Caleb has a head lamp on, they love to play in these "doors"
Something that might determine how many people we are able to add to The Team is insurance.  What we currently have is no longer working for us since Caleb's diagnosis. (it's not really for people who actually need any type of on going care, it's really just for occasional sickness and emergencies)  We tried to apply for a different kind of individual insurance but because of Caleb's condition they wanted to more than double the already expensive premium! (that on top of the high deductible and co-insurance) Soo, we are looking at other avenues.  Caleb does qualify for a Medicaid Waiver but the waiting list is 3-5 years and we aren't sure that would be the best route for us anyway.  However, Jason talked to a company yesterday and they told us about something that may just work.  It is a State Pool insurance for people just like Caleb.  He would be on it by himself and then the other 4 of us would get a different plan.  (Jordyn is currently not on any insurance because our current company won't let us add her and we can't cancel our current policy and get a new one because of Caleb, and round and round the cycle goes.  We have been working on this since Jordyn was born) We are really praying this works out, and that we can find affordable insurance for the 4 of us.
Here is the chair that was given to us
In more exciting news we got a Kid Walk!!!  Like we have it at our house and Caleb loves it!  Here's how that all went down; Last week we went in to see our Wheelchair lady who had helped us out at Scottish Rite.  We brought her the chair that we had been given that needed some repairs and additions.  (our Physical Therapist had it at her office and it was donated to them but had been sitting in a closet for almost 3 years, just waiting for us I think!) So we took measurements and looked at options for that chair.  She also had a Kid Walk that we got to try out and see how we like it.  Here is how that went:

video
So we were sold! We had a Ministry that offered to buy us some equipment so we told them we wanted that chair.  They came back and said they didn't have that much money at the moment but would work on getting it.  So I thought of a plan B.  We have been looking at Craigslist for the last few months for pediatric wheelchairs and power chairs.  I finally figured out a way to search all of craigslist instead of just city by city.  We figured if we needed to drive to save a few thousand dollars we could make that happen! So I searched for a Kid Walk.  Lo and behold, 1 came up, it was in Oklahoma and it was 1/3 of the retail price and was hardly used and looked to have the options we needed.  We contacted the owner and started discussing where we could meet.  Then I remembered that my Mom was visiting a friend in Oklahoma City. (about 2 hours away from the owner) She would be coming back to Dallas the next day, so I called to see if she could meet this lady.  She said, "of course!" So the lady agreed to meet her and she was able to pick up the chair the next day!! (Jason was going to have to drive up there on Sunday, about a 5-6 hour drive, and back home that day as well.  Something he was willing to do but sooo nice he didn't have to!) We contacted the ministry and they said they had the money so make it happen.  We almost couldn't believe how seamlessly it all worked out.

We put Caleb in the chair last night for the first time and he cried when he had to get out.  He still has some work to do before he can really walk more than a few steps, but one other great thing besides walking is that he can stand up and play with toys.  He stood and played at his train table and his tool bench last night and had so much fun.  Normally he is in a chair or someone's lap.  Even then he is very wobbly and has to work so hard at stabilizing his upper body that he can't really play with 2 hands.  It was so great to see him really be able to play with the toys and not have to work so hard! There is a seat in the middle that he sits on so he wasn't really standing, but that is great for him to have that option and just to be vertical instead of laying on the ground was great too.  We are so blessed!

I guess if I posted a little more often I wouldn't have to squeeze so much into one post! But it seems like not much is going on, and then WHAM, everything happens in one week! Anyway, I wanted to give you guys some things to pray about for us.  We appreciated all of your love and support and prayers, so here are some specifics:

1. We need some wisdom and direction on which Doctors to add to our Team
2. Pray that the insurance situation gets taken care of.  We would like Caleb to qualify for the Pool Insurance and to find something affordable for the rest of us. (does that even exist? affordable insurance? :)
3. We need to do a little construction on the house.  We need a ramp put in so Caleb can have access to and from the living room and out the back door as well.  We aren't really sure how to approach that and don't have the funds right now to make it happen on our own.
4. Continued strength for Caleb and that he would be able to tolerate/cooperate eating more.

I think that's it for now.  Thank you again for praying for us!

Love,
Jessica




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