Wednesday, October 31, 2012

Happy Halloween!

I am glad it is over!  Not that I don't love Halloween, because after all it is my favorite holiday.  This year I am so excited for Christmas!  I am ready to decorate and for the season to start.  Last year I really missed out  at Christmas time.   Matt was still regressing very rapidly, it was his longest regression we had seen.  It alone  was scary, I remember not knowing what I could get him for Christmas that he would be able to play with because he had lost so many skills and I didn't know where it was going to end.  We were testing for very scary illnesses.  We were testing for leukodystrophy and then batton's disease.  Both awful terrible illnesses that would take my son on a long painful death.

This year we are still testing for scary illnesses, and there is still a chance that my son won't make it to adulthood, but this year the regression hasn't been as bad and living this life of uncertainty for over a year you get used to it. You still cherish every day and try to enjoy everything as much as possible, but you are no longer living in the constant crying mode so scared of everything.

Welcome November!  I am excited for the next two months.  I want to cherish every part of the holiday season.  I am in no way ready for what the next year will bring so I want to stay right here in the holiday season of 2012.

I don't believe in this saying, but I am going to say it tonight to start the next two months.

Happy Holidays!!!!! 

P.S.  I will post more about our Halloween week soon.  We didn't fit everything into it we had planned, but we still had a nice time.  Matt was a ninja turtle. 

Thursday, October 25, 2012

Halloween Week!

We have lots planned this week!  Very excited and I hope Matt makes it through the week with out getting sick and plenty of energy.
Tomorrow - Boo Bash, a Halloween party at a local Children's museum with our playgroup.
                 - Sea World to see the Howl-o-Scream event.
Saturday   -  Carving the pumpkin Matt picked out (It is a great pumpkin I don't think I could
                     have picked better)
                 -  Fall Festival at a local church that usually isn't very busy so Matt has a blast!
Sunday      - Church
                 - Accessabiltyfest, I am looking forward to connecting with some local special needs
                   We are currently in between therapy companies and if I find one there I like better
                    I might switch.
Monday     -  A laid back day, but we do have a visit from our home health nurse.
Tuesday     - Another laid back day, but we have play therapy.
Wednesday - HALLOWEEN!!!
                   -My church has an awesome fall festival, with pony rides, trains, food, and moon
                   - Then a Halloween party at my best friends house which includes trick or treating
                      in her neighborhood, that was a great place to trick or treat last year.

When we are not busy we will probably be doing some last minute Halloween crafts and helping my best friend prepare for her party.

There is supposed to be a cold front this weekend, I am glad we have stuff planned to enjoy it.  The bad news is Halloween will be hot again.  :-(

I hope everyone else has fun plans for Halloween.

Wednesday, October 24, 2012


I am very glad to announce that Matt now has a mic-key button!  After almost 5 weeks of a PEG tube he now has a small button on his tummy!

This was Matt's PEG tube, I am amazed that I don't have any better pictures.  I have lot of pictures of the granulation tissue around the tube, but this was the only picture I took of it in place, and this one you can see chocolate chip cookies in the tube.  I wish I had a clean view.

This  is the button.  Even though it has only been a few days I am hopefully that it the answer to help granulation tissue.  

So far along this journey Matt has been "hooked up" 22 hours a day.  Since the tube I have been aiming for 16 hours a day, most of those while he sleeps.   Trying to increase his feed speeds hasn't been easy. too fast causes distention or vomiting.   

Friday, October 19, 2012

Sorry for the long over due update

I plan to go back, write and back date post for future reference.

Matt is doing great.  He is finally able to eat most things again with out throwing up and we have seen major improvements.  His tic that was happening the last few weeks is almost gone!  PRAISE GOD!  He also has so much more energy.  The other day he ran for over 5 MINUTES!!! WOW!!!!

On Monday Matt's PEG tube will be changed to a mic-key button.  I am looking forward to this change, enough though he is currently on continuous feeds so he will still have a tube on him most of the time.  He hasn't been able to tolerate faster feeds yet, still working on a good balance.  I am hoping the button will help with granulation tissue.  - He can grow lots of it VERY FAST!  A upcoming blogpost will be titled..  granulation tissue; it will happen to you.

I am finally getting into the stride of things and he is healing well.  Hopefully more post will be coming soon!