First trip to the doctor

Noah had our first doctors apt post op yesterday. He is doing so great. They checked the incision, and upped his dose of medicine. I have already started to notice some affects from the pump. First of all in these pictures, look how open his legs are, a week ago he would not have been able to do that. His lefty as we call it (left hand) is so much more relaxed and he is using it much more. He is still at a very low dose of baclafin, and are already seeing results!! They are going to up the dose again in a week and I can't wait to see what he is able to do then!

Noah's Outings

Just a week after surgery, and Noah is doing awesome! He is a little trouper. I decided to take him somewhere he could get outside in the fresh air, but not have to move too much. We took him one day to wheeler farm, and the other day to the aviary. I think he did better than I did. Noah loves animals (Ava is obsessed) so they both had a lot of fun!

Noah told Grandma he wanted to try to walk....

relaxing with grandma by the river

Pam and Rock with the kids

me and my babies

Night at the Fair

Last night for the 4th, we went to a park nearby that we go to every year. This time we only took Ava (for obvious reasons) but the whole night we kept saying how we fest incomplete without little Noah. Ava however had a BLAST. She rode a horse for the first time, and loved it. She rode tons of rides all by herself, and she watched fireworks, and didn't get scared!

This little boy kept trying to kiss Ava and she wanted nothing to do with him!

This is the only time Ava cried all night, I think she didn't like that girl bugging her.

As soon as she saw this ride she said "duts, duts" (for ducks)

I think that Ava really loved having Mommy and Daddy all by herself.

Ava getting sleepy we were there 4 hours past her bedtime, and my gorgeous husband

I love her little dimples

Noah playing with his toy we got him at the fair!

Resting

Things are going really good around here. Noah is recovering nicely. He is still in some pain, and very frustrated that he can't move around like normal. To try to get Noah out of the house, we have been sitting outside a little every day, last night we had a BBQ outside and the kids loved it.

Here is Av going stir crazy around the house....

Sweet Noah playing w/ grandma pam

Noah playing with his new remote control truck, his new favorite toy

Update

My little guy amazes me everyday. He is so strong, and determined.

Jeff is staying the night tonight, and when I left things were pretty good. The worst thing so far is his pain. It seems like he has about a really good 2 hours right after he gets him pain med, (he mainly sleeps) but then the following 2 hours until they give him his next dose, he is pretty uncomfortable.

Here is Noah right before surgery, "walking with grandpa rock"This picture is right as I was leaving tonight, he was trying so hard to play but he was just too miserable. This is one of Noah's incisions. The pump is right under it, I would estimate that it is about a 3 to 4 inch diameter. It kinda hard to see right now because of how swollen his tummy is, but as the swelling goes down unfortunately it will be more pronounced.

Noah with Grandpa Rock

I had to get this one of my daddy, because he is rarely in any of my photos, Noah loves him and calls him "trampa"

Update 7/2

The Surgery went well with no complications, and we are very thankful!

We have been through alot of surgerys with Noah, but I think that out of all of them this might be the most painful for him. The Neorosurgeon said that he had to go through alot of Noah's nerves and muscles to get the cathater placed. When he came in this morning he prescribed another pain med, so I hope later today noah might feel better.

We definately need prayer for Noah's Pain level, and for restfull sleep for him. He has to lay completley flat for the next 24 hours and then he can start sitting up, but for a 3 year old that is torture.

I am at the hospital, so I cant update pictures from this computer, but I am going home this afternoon to take a nap, and I'll try to squeeze some in.

Thanks

Noah's Surgery

Noah is going in for surgery first thing tomorrow morning, (I'm posting this really late, but Wednesday Morning) He is getting a baclafin pump placed. This will help with the tightness in his limbs. We are hoping that over time this will help him move easier, have less pain, prevent contractures (or not being able to move his limbs due to constant tightness) maybe help him to learn how to walk, help him gain weight, make diaper changes easier, and many other things. The issues we are worried about is that Noah is very weak and may have to learn how to do everything over again, also risk of infection (if this were to happen, the pump and shunt would have to be removed for the infection to clear and then everything replaced, which would be at least a month in the hospital. It's only about a 10-12% chance of that happening, but for me that is too high of a chance. Prayers and Support would be really great. This is a big surgery for our little guy. Jeff and I have prayed for months, done tons of research, and weighed our options and feel like this is what's best for Noah's future. I think the surgery is about 2-4 hours depending on if the shunt creates more work for the neurosurgeon. I will update later to let you know how things are going.

I hope this email makes sense it's late and I feel nervous and groggy. Thanks for the support.