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Wednesday, July 11, 2012

Letting Hope In


(I apologize I don't have any pictures to post! It's been so hectic)
It's been a little over two weeks since Caleb had his surgery and man has it been busy!! We got home on Sunday afternoon and Jason's mom was here to help us for a few days.  We took the evening just relaxing and being home with the girls again.  Man we missed them!
Monday was a chill day at home.  I went to work in the late morning for a few hours and later that afternoon our first meal was delivered.  We have been SO blessed by everyone who has brought a meal, and they have all be so wonderful!
Tuesday we had Dr. appointments.  The first one was with the MDA doctor at Children's Hospital.  She also happens to be a Neuromuscular specialist which we were pretty excited about.  We were warned that she doesn't have a very good bedside manner, so be prepared.  We gave her assistant the run down of Caleb's history and then she came in.  According to her records Caleb does not have the type of Mito we were told he has.  (not that it changes anything really, I mean he still has Mito we just don't know the specific mutation) This is the second time in the last few weeks that we were told something different than the specialist told us, and both of the other doctors had it in writing to show us! So we will have to ask the specialist for some clarification, somehow the lines got confused somewhere. 

The MDA doctor was very concerned about Caleb's decline in the last few months and seemed to indicate it might continue.  We were not thrilled with this news so the rest of the appointment was a little frustrating.  Not to mention we weren't planning on being there as long as we were.  We saw a PT, an OT, a social worker, and an MDA representative.  We didn't spend a whole lot of time with any of them as we are pretty set up with what we already have in place.  They each came in and asked us some questions and told us we are good! The MDA rep was helpful in that she told us what MDA would cover.  They did some lung tests, and want another one done and the Doctor also wants some heart testing done.  We are ok with getting a check and baseline to make sure everything is ok, so we will proceed with that.  MDA is a great resource to have and I'm going to see what they might have as far as a power chair for Caleb in the near future.  If they have one that will work it is "loaned" out to us for as long as we need it.  Pretty cool.  We will go back and see that Doctor in about 3 months.  

After that appointment I wasn't really sure what or how to post.  It was a little disheartening to say the least.  We had just been in the hospital for 10 days and Caleb had gotten pretty weak from not moving for that long.  Hearing the doctor say it was probably going to progress pretty quickly was not something we were prepared for.  But what a difference a few weeks make! (back to that in a few)

We then headed over to Scottish Rite to get his stitches removed and wrap up a few loose ends over there.  That went pretty well and we finally headed home later that afternoon.  Jason's mom left that night and we were so thankful for her help.

Wednesday Jason headed back to work and my mom came over to help.  Early Friday morning my neck went crazy and I was paralyzed in bed.  Jason had to stay home from work to take care of the kids and my mom came over to drive me to the Chiropractor.  Thank God for Chiros!! I'm guessing all the stress finally caught up with me, and it was no fun! (it's been over a week and I'm just now getting back to normal) Then Friday evening Caleb threw up.  We were pretty bummed but didn't think much of it.  Then after he went to bed he did it again.  Allison had gone over to Alyssa's house to spend the night and as we were cleaning up Caleb they called and said Allison was throwing up.  We were so excited!!! Yes, I know that's a little weird, but this meant that it was probably a stomach bug or food poisoning and not Caleb's normal throwing up!!! So Jason had to drive and go get her close to midnight.  She was pretty much ok by the time she got here and went to sleep.  Caleb still threw up 1-2 more times during the night but then he was fine the next day.  It really was just a short little something and we were so happy. :)

The next week went pretty well.  We had our 2 week follow up with the Surgeon and he said everything looked good.  We went to our second Mito Meet up this last Saturday and it was nice to see our friends.  It's funny how much has changed in 2 months.  I was so incredibly glad to have the support system of 2 ladies in particular from the group that I could ask questions and talk to.  Both of their kids have tubes and we got to see one of them while we were at Children's for testing the Tuesday before surgery.  I am so thankful for them, and grateful we went to that meeting 2 months ago! 

Caleb's energy has been picking up and he has even been wanting to get down out of his highchair.  (something he had no interest in doing for the last 2 weeks)  He is nicely protected there (we did have an incident with Jordyn grabbing his tube) and he didn't want to move.  But today he did great with his PT standing and even playing in Henry. (his Kid Walk, did I tell you we named it? Well we did) He also ate Kix cereal today.  Not a big milestone usually but at the very beginning of June he was choking quite regularly on them so I stopped giving them to him. He has been eating pretty well besides his feeds.  Oatmeal almost every morning, yogurt, applesauce, and PB & J, which are all of his favorites.
 Last night we had a little dance party with the Beibs.  Allison has a toothbrush that sings "Baby Baby" and she was dancing.  Jason was holding Caleb and dancing but Caleb wanted to get down.  So Jason held on to him and he started moving his legs and wiggling around.  We laughed and laughed and were so amazed at our incredible little guy.  He is such a fighter!!  I am so encouraged by all of this! (my comment above about a few weeks makes a difference.....) He is stronger than he was when we went into the hospital and I'm praying he continues on this upward incline.

I don't think we are where we need to be yet on calories, we see Dr. Adams next Monday, and I want to talk to them about Blenderized Diet at that point.  I started researching and joining facebook groups when we found out about the whole G-tube thing.  I found a few people talking about Blenderized Diets and I was very intrigued. I looking into it more and it is something I want to do, without a doubt! It totally fits into my personal beliefs and values about food and I am thrilled to be able to offer Caleb true nutrition. (Disclaimer: I know that some people can't do BD and formula is their only choice. I thank God for the life sustaining formula in those circumstances, but I have to try this for us and see if it works) It's not just putting what we eat for dinner in a blender and feeding it to Caleb in his tube.  It's a pretty set "meal" that is blended up daily and fed to him over the course of the day.  It has to encompass many different things, but keeping the volume low and calories high are the main tasks.  I did ask the dietitian about it before we left the hospital and she was thrilled and very excited to help us.  So I'm looking forward to figuring out what real foods we can feed Caleb.  

Which wasn't even an option, until today.  One thing that really helps the BD diet is a high powered blender. It is possible to do it without one, but so much easier with one.  A Vitamix or Blendtec are the two top brands that people use.  Today I got word that someone is providing us with a Blendtec blender!! I am so super excited.  Seriously.  This blender is about $450 new and makes the BD a reality for us.  I want to have a meal plan all lined up so the day we get it I can start making this boy some food!! We are so blessed!!

One last thing, our appointment on Monday will also be with the Speech Therapist we met with during our inpatient stay at SR. She wants to help us get a communication device for Caleb.  I am pretty thrilled about this idea and it could mean so much for Caleb!! She knows lots of places that will provide one and has lots of experience in this area.  I can't wait to see what she has in store.

Thank you again for all the meals, the prayers, the texts, the thoughts. This is such a hard road but we know God is with us and thanks to so many of you we are navigating it.  We still don't know exactly what the future holds for us but I keep trusting God is there with us.  

Love to you all,
Jessica