Therapy, Vacation, and Don't Mess With Oli!

We went on our first official family vacation since Oliver has been in the world. We were very nervous as to how it was going to work since Oliver seems to have seizures everytime we leave the house. We made it and actually had such a great time we stayed an extra night! The first night Oliver only slept for two hours, which means we all only slept for two hours. The next few nights went really well and I made it through the half marathon. While I was packing to leave on the trip, the kids were a little too quiet for comfort. I went out to see what trouble was occuring and Adina was acting as Oliver's little therapy helper! It was so cute! She loves her brother so much. I added some pictures of her showing Oliver his vision cards.
While we were in Duluth we went to Canal Park, the Great Lakes Aquarium, Watched/ran the half marathon, and saw friends and family. Adina's favorite sayings while we were in Duluth were 1) Birdie Poop!! (there is a lot of that in Duluth) 2) When I was a kid, I would (she would fill it in with random stories 3) Mommy, I don't want to grow up...
Oliver started new therapy at Gillette last week. We discovered that Oliver really has strong feelings about certain things. He has just been very angry with his new physical therapist. She is great, he just is putting her through Oliver training I guess. He has yelled at her both times, and when she left the room he chuckled a little bit. I wonder if he knows what he is doing, as soon as she came back in the room he started to yell again. Little stinker. Don't mess with Oli!! =) Oliver has temporarily graduated from the feeding clinic. They want him to become more centered before we really push on to the next step in foods. He gets sensory overloaded very easily. They decided that Oliver has such major sensory issues that we need to take a little step back and get him into the Therapy pool. I guess it is the best way to start acclimating him to the world. I guess if you think about it and try and close your eyes for a day, you would become very sensitive to everything.
He does have triggers for seizures we are learning. Loud overcrowded environments and overstimulation. So, if you are ever holding Oliver and he starts to cry and fuss (it is not you, it is Oliver) please don't be offended if John or I take him. It is the best thing for him to stay calm, he just gets over stimulated easily and knows different hands. Again, it is nothing anybody else does, it is just simply Oliver. That is what we have been told and we need to do what is best for the little dude. We still want everybody to hold and love Oliver, and talk and sing to Oliver, and snuggle and touch Oliver, and not be afraid of him. Everything in moderation.
Enjoy the pictures =) More to come soon I am sure..

Who is driving this ship!


This is so boring!


I've got the whole world, in my hands?


Look at that Oliver!


Stop Daddy! Birdie Poop!


Family Picture Time


On the Rocks


Look at this vision card Oliver..


Now this one


Smile Little Man


Cheese!!


Time to paint...everything!

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!