Two more down

We spent another full day in the hospital, but we are making progress. B had a double dose with two procedures today. The first was to get tubes for both ears - a really basic surgery that should help with both his hearing and chronic infections, yippee! The second was to replace his feeding tube because he has already grown out of the one we did a month ago. It was really good timing too because when they went to put the new one in they found out that the old one had slipped almost completely out and was nearly back in the stomach which may have been adding to the increased reflux he has been having. It was not as slick as we would have liked, but this time he was sleeping soundly and should have no memory - thank goodness! So in a few days when his ears feel better and the outside and inside of his tummy aren't bothering him, if he can't get a good night's sleep, I don't know what will do it:) Since Grandma gets him all next week we are keeping our fingers crossed that he is an angel so that she will volunteer to give us a break again soon!

August?

So, I am not sure where the past 2 months have gone. Looking back, it seems we spent half of the time having fun with family and the other half on dumb doctors...

Blake and I took a trip to UT at the end of July for a family runion and had such an awesome time seeing everyone. My family celebrates with all sorts of fun and silly activities like archery, a fly-off, a pinata, watching movies projected on the garage door, skim boarding in the canal, etc. and I love it all! We also got to go swimming at aunt Jill's so it was great to catch up with the Shupe side as well.

After we got back to VA B had a procedure to switch his G tube to a G/J tube (which just means that they add extra tubing inside that allows the food to bypass his stomach and go straight to the intestine). I have to say it was one of the WORST things we have ever had to do to/for him. First off, they did not use anestesia - who does that?? It was suppose to be a quick 5 minute thing, but after at least a half hour of him screaming they stopped to get another doctor to assist and we were finially able to get them to relent for at least some local numbing. I can't even explain how angry I was. I just kept thinking how they would never do that to an adult, so why to a poor kid who has already been through so much? I don't know if I can blame it all on that incident, but it has really effected his behavior. He is now scared of EVERYTHING - vaccum, hand mixer, a fan. He just freaks out at the drop of a hat and it breaks my heart everytime. To add to his challenges, his digestion has gotten worse instead of better. First they thought it was a new food intolerance, then it was a bug, then the medicine used to treat the bug, and on and on. I frequently wish that I could just explain things to him, but then again I have a hard time understanding it myself and it is hard not to loose hope that SOMEDAY this will all be managable, if not gone!

On a more positive note - we did have another miracle come out of all of this. When we had to change his formula, it was of course to one that was even MORE expensive. Our insurance denyed our claim again (since he does not have a "specific inherited metabolic disease" - how lame is that? He can't swallow - how much more inherited does it get? anyways) and we honestly could not see any way that we would be able to afford it. I know most people might not post the details, but as you will see it is outrageous. A case of the food costs $169. Seriously. AND a case only lasts us 6 days. So, we were looking at almost $850 per month for this stuff. What?? So, on to the miracle. We found out that Nestle is the manufacturer and they have a program where you can qualify for up to 2 free cases per month. They do it 6 months at a time, so two days later UPS delivered 12 cases of formula to our front door ($2028 worth!) THANK YOU NESTLE!! All I could think of was "like Mana from Heaven".

1/4 Century

Its not very often that you get to celebrate turning 25, but I have to say this has been a great way to do it. We had a bunch of friends over yesterday, more celebrations today, and tomorrow I get to have another party with the whole family - Yippee!! Thanks to everyone for making me feel so loved. I have to admit that it was a pretty shameful attempt at the candles though, I guess there just are too many :)

Bad habits start early!

Do we have another crazed dewzer in the family? Hahahaha

Happy Independence Day and more

We had a great 4th of July. Not because we did anything extraordinary, but because we were able to sleep in, get some paint at a good deal thanks to HD's sale, and enjoy a BBQ and of course fireworks with friends as we counted our blessings for living in such a wonderful country and enjoying all of the freedoms that we have. We were afraid we were going to have to watch the fireworks from our hospital window or on TV, but luckily we got Blake out late Friday night - yep, that makes 3 stays in 3 weeks!! I hope we are not going for a record. This stay was more frustrating than some in the past as they decided that he needs to have a certain procedure done (move his G tube to a J if that means anything to anyone else!) but because his Gtube is less than the required 3 months, he has 3 more weeks of being in limbo before they can do anything. We have spend the last week with several doctors trying all of the alternatives and each one has been less helpful then the one before and none are doing the trick to protect his lungs until he can get over his mysterious illness. Let me just get it out - AAAHHHHHHHHHH! Poor little guy. I think he is starting to get bugged as well by all of the tubes, monitor sticker, pokes, and beeps but again I am amazed at what a good baby he is and how he can always smile and giggle afterwards.

We did also have a bright spot in the last few weeks. Two of our good friends from Germany came and spend last weekend with us. It was so nice to see them and spend some time hanging out at the pool and having dinner with them, etc. Hopefully you guys were not too bored with us!

No Summer Break from Hospitals :(

Well, we almost made it two months. Then we had 2 back to back trips to the ER. Blake always keeps us on our toes, that is for sure! Two weeks ago on Thursday his G-tube started leaking (of course it was at 11:00PM just when we were ready for bed) and so I had to take him in to make sure that the placement was still good via x-ray. It was very interesting to me that it was so light out when we started our drive back home at 5:30 in the morning. Who knew? The second trip happened last Wednesday morning when he just kept getting sick to his stomach over and over (to keep it clean!), normally this would of course be worrysome, frustrating, and just plain gross, but Blake does not do normal. He can't get it all the way up and out so he ends up caughing and crying and choking and turning blue so we had to get him to the ER quick for oxygen, antibiotics, and another xray to make sure that his lungs were ok. ahhhhhhhhhhh. To add to the drama, Bryan was out of town for some training in Chicago so he had to take a flight back in the middle of the night to come and rescue us. THANKS AGAIN BABY! We still are not sure what exactly triggered the episodes - food intolerance, minor ear infection, teething - but the combination sure did it, poor guy. Luckily we were able to bring him home Saturday afternoon and he is doing SO MUCH better. We also have some awesome friends and ward members who stopped by to visit and bring us meals - thanks a ton to everyone!!

Sitting Up

My little Boo is all grown up - today he sat all by himself!! Isn't it amazing how they just learn these tricks over night? We are SO excited.