Wednesday, October 27, 2010

Fall Fest

Our church fall festival was this past weekend, a welcome distraction from all we have been coping with over Sam. I think we have to find our "normal" and just start living more.. We can't stay stuck in this neutral mode..I am ready to move on to whatever God has planned.

The girls threw on last minute costumes and we headed out for a fun family outing. I suspended my worries about the many millions of microbe viruses that could be awaiting in the crowd to bring illness to Sam. We can't live in a bubble and his growth needs to include a wide variety of experiences. Isabella dressed as a clown and Sofia was a care bear.. rainbow bear to be exact. Her outfit was about 6 sizes too big but she absolutely had to wear it even if the trim dragged behind her. They loved the bouncie castle most of all and Isabella especially enjoyed the dangling donut game.. however she could not manage to keep her hands off the donut. It is always a great event!

Monday we had to drive an hour out to Pensacola to get Sam's medication that keeps HR in check and that was a big ordeal during rush hour with 3 kids. Even better is that the insurance company won't cover the meds as they are in IV form (although I draw it up by needle syringe and then just put it in his gtube). The pharmacy furthermore could not give me his full months dosage as they would have emptied their supply needed for within the hospital stores so they apparently "owe" me the remainder.. not looking forward to more long drives to that pharmacy. You know you have had too much history there when nurses in line with you already know your son and are excited to have reunion time with him while you wait. But the real kicker to the day was driving home while Sofie continuously tryed to take off the seat belt. I was soo mad and I finally had to pull out the big guns and tell her she would not have her "lovey" to sleep with if she did not stop it..well that ended badly. She absolutely lost her control..and eventually made herself sick all over the floor of the car out of anger..needless to say, it was a loooong night scrubbing the car. YUCK.

As for Sam, he has been doing pretty well with only one bleep on the radar this morning. He had a brady (low HR drop) while I was doing dishes and on the phone long distance. He had been just doing floor play time and nothing seemed to bring it on but when I got to him he was a washed out grayish tone. All it takes is mere seconds. This is why I can't ever feel comfortable out of the room or while sleeping I jump at the smallest noise. His HR did quickly come back up and all was ok. It was the first episode since the drops post op last week. I have to get him in for followup with his pediatrician this week. I know the big question I am not ready for is about vaccines..we have always stayed current with them with our kids and Sam has been the same but as he was in the hospital for so long over past month, he missed his 6 month set. In the meantime, I have found some concerning reports from parents of kids with mitochondrial disease (condition he is being tested for along with others) that they have had major adverse reactions and regression following vaccinations. This group for some reason seems to be possibly at higher risk of some type of trigger to additional problems. we do them without knowing our diagnosis or just space them out or just not worry about it..? This will occupy my mind all week I am certain.

Well the other big news of the week is that we got to enjoy some time with my grandparents (my mom's parents) who are down visiting in the area. The girls and Sam really enjoyed spending time with them at dinner tonight after Bella's soccer game. It was nice having a relaxing meal with family and Sam was lucky enough to get some time watching his little cousin Eleanor too who is a little over 4 months older than he is. I will have to get some pictures of them together before they head back to Germany.

The only hard part of today was getting an email from the specialist who is analiyzing all Sam's labs and biopsys in his lab. They sent me a new patient report summarizing Sam in general and then what they would be testing for and possible was not easy to read. Setting that aside though and just planning to be optimistic and await the results..It will be a loooong 6 -8 weeks. I just hope that if they are going to show something that it is not vague and cause more questions. We have enough already. I read a few blogs from other parents who are in similar situations and it seems they went through a very long process for a diagnosis and the muscle biopsys were not always clear enough to give a set answer.. I think that is a reasonable expectation..we just have to know what we are dealing with.

Lots of Halloween plans ahead for the girls. I am going to be a giant crayola crayon for Sofie's school function..never thought I would see the day that I would be caught in a crayon costume.. but the kids will love it!

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