Day 14ish

Sorry i haven't updated it was taking quite awhile to get the pics and videos on. The videos on this post are of him practicing sit to stands. He had to take a break in between to poop. You will here us commenting on that in the video. Also he is practicing trying to sit. He is doing a great job correcting himself when he starts to go to one side. Well he's improved not perfected that.

The other thing i've noticed since being here is he looks to the left all the time. I don't know that he sees anything but he used to only look or turn his head to the right.

We went to the pool today for some swim time and as we entered this older lady says "you gonna wake that baby just to take him swimming?" I thought yes lady i'm going to do just that because don't all moms want to wake their kids to put them in the pool? The truth is he wasn't even asleep!!! "His eyes are squinted because the sun is in them and he doesn't always sit up straight!" So I politely said "he's not asleep" and left it at that.

more great times at physical therapy

Christian had a great day today. He was trying to pull himself back to the middle when he was sitting on "the horse". Usually he just falls to one side but he was trying to use his core muscles come back.

I accidentally deleted the video of him practicing sit to stand. He did 15 of those. I was so proud of him. I think we counted 13 steps today. The video show him bringing his own foot up with little assistance. He needs us to guide his foot so that he does not cross them. I continue to stand in awe of how hard Christian is working and the improvements he is making.

I'm also very excited to announce he has gained 2 pounds in the the last 2 weeks. We've been stuck at 27 lbs for about 6 months!

Thank you again to all of you who are writing and praying for us! And for all of you who made it possible for us to come again.

Fun Time

Ahhh! The bear is going to get me!

Daddy will catch ya!

This weekend we had some fun in the sun! THe pictures of us at the fountains is at a place called Zona Rosa. Cute little shopping place with a square that you can just sit around and people watch or kids can play in the dancing fountains. Then we swam at the pool on sunday. Christian seemed to enjoy it more than last year. Please disregard my pasty legs. They've only been unveiled for a couple of weeks so the sun has not been able to penetrate the winter white yet.

Christian is doing great. We are on day 10 of no big seizures. This is just like a whole new world for us! Christian will have physical therapy 2 times this week along with hyperbarics everyday.

Day 5

Today Christian had another session of physical therapy. He did a great job working hard. On our second dive of the day he slept thru it and then slept 2 more hours back at the room. Oh it was heaven! I got to just relax and catch a little sleep myself. Some people (me) weren't made to get up this early. I'm ready for the weekend.

Day 3

Christian had 2 hours of physical therapy today. I thought we'd just start with an hour and see how he handled it but he just kept on going and before we knew it--2 hours had flown by. It's amazing how much more he can do when he's not having big seizures.

I think it's so neat to meet the different people that are here getting hyperbaric treatments. The diagnosis range from autism, cerebral palsy, stroke, Parkinson's, brain injuries (car accidents). . . No one really minds to share their story and the interesting thing is that we (moms of kids with disabilities) have an automatic bond and willingness to share information and help each other. The first day we are talking about doctors, support groups, resources, . . .like we've known each other for years. I also noticed there's no one trying to play the "one up ya game" that some moms play. Ya know "well my kid can. . . " And I think the chamber is sort of like a therapy session-we talk about things that are working or not for our kids, their strengths, and just laugh about things. We really laugh a lot in there. You'd think they were pumping in laughing gas. Two guys even play card games to pass the time while some others take the hour and 30 minutes to just close their eyes and relax. This time is a little more work because Christian does not just sit there. We stand a little, sit a little, bounce, whatever keeps him happy. So far he's only slept for 10 minutes in there.

I put some videos on of him practicing in his walker at the hotel, standing, and sitting at therapy.
We can't wait to see daddy tomorrow!

Day 2

Well we are on day 2 of treatments up here in KC. We did one dive yesterday at a lower pressure than normal and one today just to ease back in. Tomorrow we will start 2 a days. I'm excited to be in the chamber with other people. I may just talk there ears off. I never knew I liked having company so much.;) Christian will have physical therapy thursday and possibly friday.

He hasn't had any big seizures since friday. We are so thankful! He is just so different, it is amazing. I will put a couple of videos of him working, on here tonight. He's doing great in his walker.

Hyperbaric Lingo
- when i say dive I mean going in to the chamber for treatment. We do this twice a day.
-the chamber does not move or go under water or anything like that.

Great News

This may just be one of my most exciting posts, yet!! In the past 6 days Christian has only had 2 big seizures! He went 3 and half days without any big ones , then had 2 on friday and hasn't had any big ones since then. When I say "big ones" I mean the kind where he falls asleep afterwards because they are so tuff on him. Let me remind you that he has had seizures since he was 7 months old everyday. He's had the big ones everyday, multiple times (3-4)a day for about 9 months. As a parent they are difficult to watch and heartbreaking. We have tried multiple medicines and as many of you know took him to Kansas City for hyperbaric treatment. These seizures basically keep him from making much progress in therapy because he would have one during or before and be lethargic or fall asleep.

We have prayed everyday for this (that his seizures would stop) and filled out i don't even know how many cards at church. We give God the glory for anwsering prayers. He is faithful and is always on time. Thank you all so much for your prayers, just know that if you said even 1 prayer for Christian's seizures they were heard.

Eric and I are just overjoyed at the "new" Christian. The changes were obvious the first day he didn't have any. He is much more verbal, energetic, laughs at different things, chewing his food better (eating a whole muffin), wanting to stand and walk in his walker, takes a normal time nap. It is amazing! Eric found this scripture during the middle of all of this and I thought it was appropriate. --Dear friends, do not be surprised at the painful trial you are suffering, as though something strange were happening to you. But rejoice that you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed. 1 Peter 4:12-13

We are back in kansas city to do more hyperbaric treatment. Christian still has his "bouncy" seizures as we call them. They are minor compared to the others but we are still praying that these go away too. Thank you to all of you!!!!!

Silver Dollar City here we come!

This was Christian's first trip to SDC. He was able to ride 2 rides! He liked them a lot. He had a big grin on the frogs when they would go up and down. I held on to him tightly! We had a great family time and were very pleased with SDC employees helping us out!

Hotel Life

i love hotels! if you are ever in Columbia stay at the Hampton Inn and Suites across from the University Hospital. It's new, nice, and well somewhere other than the four walls I look at everyday. We are seeing a metabolic geneticist for the first time tomorrow. He may have answers or may not.

Leaving for KC
We are going back to kc for hyperbaric treatments on May 17th. We won't be doing the intense physical therapy but seeing the therapist when she is available for pt sessions. We hope that this will continue to help reduce his seizures. Please continue to pray for Christian's seizures. They have been ruff lately. That's putting it nicely.