Summer Time!

Hello Everybody! Summer is finally here in Minnesota and it is fantastic! Here is an update to the last blog. We were trying to figure out his barfing (vomit if you prefer the less crude terminology.) I was sure they were going to jump the gun and go right to changing his G-tube, which goes right into his tummy, to a GJ tube which would go a bit past the stomach. The GJ tube often prevents the barfing, which would assure us that he would not suck fluid into his little lungs. Only problem with the GJ is that fluid has to be dripped in very slowly with the feeding pump because the jejunum (part of the intestine where the GJ tube enters) is not big enough to handle a large amount of fluid. I REALLY do not want to go here because Oliver will always have the machine attatched with few breaks. I also know a surgery would have been another option. Luckily for us, we have a great family practice doctor who knows us well (we talk weekly on the phone) and was a strong advocate. We are trying a med to empty his belly quicker and knock on wood it is working okay. Since he started it we have not had to sleep on edge as much. There are times where we hear him start to vomit and gasp for air and we run to roll him over in his crib to help him clear out the vomit before he sucks it in. Graphic I know, but life. That is that issue.
We went to the neuro. today. We knew our regular was out doing research and would not be there today and then found out he has left for good. When you have a special needs child you develop a very close relationship with doctors so I was pretty bummed. Life goes on and luckily I asked around during clinicals (a few months ago) and our new guy is great (we saw him today.) Oliver still has seizures at times so we are trying to get that figured out. The neurologist told us that life with a special needs child is sort of like being the road runner. When you run off the cliff, you are just fine until you look down. When you look down, that is when "s*** hits the fan." His words not mine, but I do like that, and get it!
We also started a new therapy today at Gillette Children's Specialty Hosp. For now physical ther. and in a month he will see a special rehab doctor. Oliver is getting to the age and size where the stroller is getting hard, he can't support himself. Most likely we will be getting fitted for a wheelchair in the next year. I am actually relieved at this, I think it will make life easier. Also, they will assess if he needs other equipment and do lots of therapy. It was funny, the therapist was rolling a ball that made a funny noise. Oliver was apparantly not a fan. He bobbed his head up and shouted! I was in shock, he never has done this. She rolled the ball again and he was mad, mad, mad, and just screamed like he was yelling, NO!! I laughed so hard I was crying at the same time. It is little moments like that where I give him a hug and a kiss and think I am by far the luckiest mom ever! It is easy to lose sight of what is really important in life. Oliver always pulls me right back in, whenever I get frazzled by lifes little bumps that I can so easily make a mountain, he smiles, or coos, or screams. He just knows how to grab me and say WAKE UP to the good stuff mom!!
I cleaned out the camera and found some hidden cute pics. Here are some good ones!

Oliver was only a few weeks old here. I love this picture.


Two cool dudes! Clearly no shortage in the chubby cheek department!



Beach Time!!

Fun with stickers..and dad!


Up north to see the greats in May (when the seizures started)


Uncle Jim and Uncle Don came from CA to visit! It was great to see them! We miss and love our CA family!

Grandpa teaches Adina to play her favorite instrument, the bassoon. Not sure why that is her favorite, but it is =)


Oliver working hard in therapy with his favorite OT, Susan.

Our niece Kali Rose in a bowl. She is seven months old already!! Such a cutie pie!