Sunday, September 26, 2010

The Lowdown...

Sorry for our lack in posts lately.  There really hasn't been too much that is "blog-worthy" lately.

Christopher did get his casts off on Sept 9. It wasn't as bad as we anticipated. His legs actually looked like he had just come back from surgery.  I was surprised that the incisions hadn't healed.  They have since healed nicely. I'll post some pictures of that below.

He had another seizure a couple of days before the casts came off. Another bizarre one. These last few almost look like how you will sometimes jerk just as you are falling asleep.  Except he does it hundreds of times. In between "jerks" he will normally look like he is trying to come out of it but will whine. This time, it was obvious that he was totally conscious! He would grab our arm and hold on like he was trying to stop the jerking. He would try to say "Mama" or "Dada" and would usually get cut off by another jerk. He was trying to sign "All done". Those aren't things that he would/could do if he was in "seizure fog".   It lasted for about 15 minutes.  Then just stopped - no easing out of it.  He will normally go right into a deep sleep after a seizure....this one he sat straight up and wanted to hug and kiss both of us.  He laughed and clapped his hands, then signed "Eat!" and grabbed for his feeding pump. 

Ever since that seizure, he has been a talking fool! He used to babble all of the time "dadadad" etc.  After he was really sick about 2 years ago, he never started it again. Now it is back! He is suddenly gaining a little weight (no ribs showing). He LOVES to count. He can count to "tree" (three) by himself.  He is counting to ten with me. He counts to three, I say four and five, he says "sic" and tries to say seven.  He is also trying to say eight, he lets me do nine and he will do ten. Then we clap. :)  

The house STILL has not sold.  We are getting a little desperate here. We have had one showing the entire month of September. We dropped it $10,000.  I am not sure what else to do.  We do NOT want to be here for winter.  Almost everything we own is at the other house already.  We just can't move in yet, or we will have to pay rent.  We can't afford both.

Big Chris started a new rotation at work.  Not many of the people out there like this rotation, but we LOVE it! He is working 6 a.m. to 6 p.m..  One week he will work 2 days, then have 2 days off, then work the weekend (Friday, Sat, Sun).  The next week, he is OFF 2 days, works 2 days, then has a 3 day weekend.  Sooooo much easier to plan appointments around.  He doesn't know it yet, but he is going to start participating in homeschooling.  Christopher sometimes does much better when Dad asks him to do things.  We are going to be taking advantage of that.  

Otherwise, we are just running, running, running all over the state.  Now that the casts have come off, Christopher is going to PT at least once a week in Chicago. He is doing REALLY well, and their goal is to get him to be able to at least climb 6 to 8 stairs (the amount that we have in our new house). They are going to order us a new stander that is properly fitted for him, and hopefully I can post about ordering a walker soon.  We will see.

This next week we go to Peoria on Monday to meet a new (to us) Pulmonologist.  If we like him, we are dropping pulmo in Milwaukee. I would feel more comfortable with a pulmo in Peoria anyway, as that is where his cardiologist is. On Tuesday, we go back to Chicago for PT again. Wednesday we have a home visit for our waiver program.  She needs to see our new house.  We are waiting to hear about an adventure that will be a separate blog post..... If that doesn't happen, we will be hitting the paint brushes at the new house on Big Chris's 3 day weekend.

Here are your pictures!
Before Surgery (Crazy Legs):






After Surgery (Grover Legs):










Casts Off Day/ Straight Legs!:











Hugs!


Steph


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4 Comments:

Blogger Mrs. C said...

WOW the difference in his legs is amazing!! I hope you are able to find someone who knows about these seizures soon!! That has to be so hard for him to go through!

September 26, 2010 at 9:43 AM  
Blogger Zoey's mom said...

Well,you know I have been keeping up with you all through facebook but ts' good to get an update here.

Amazing difference in his legs ... what a trooper he is.So much going on and still making strides ... talking and counting and all the other good stuff.

Hate that he has the seizures.Just hate it.They were some of our most frustrating and dark days.Praying them away fro your little man.

September 26, 2010 at 11:37 AM  
Blogger Anne and Whitney: Up, Down and All Around said...

sure seems like you have a lot to blog about - the seizures sound just AWFUL!!! i am so happy, though, that his talking seems to be back and getting better and better :) his legs look so much better post-surgery. hope pt continues to go very well for christopher!!! have you buried a st. joseph statue yet? (old superstition/folktale) best of luck with the sale of the house!!!!!

September 26, 2010 at 2:57 PM  
Blogger The VW's said...

WOW! The surgery looks like it made a huge difference! Looks like it was quite the surgery though....your little man is such a trooper!

Gavin has "seizures" like that too! Our neurologist says they aren't actual seizures if he remains "with it", but it sure looks like a seizure to me! They say it's something else going on, neurologically. Who knows?!

Hope your house sells quickly! That waiting game is so stressful!

Hugs!!!

September 26, 2010 at 5:31 PM  

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