Busy, busy.....

March has been a busy month for us!

We are getting things put together at the new house.  No, we haven't moved yet. We have moved pretty much all but the are essentials to the other house!  We have been weeding stuff out,but we STILL have too much IMHO. We were finally able to afford the painter to paint all of the basement level. Now we can start working on getting things put away. Christopher's home school room looks like a tornado hit it.  :)  Still trying to figure out the best way to organize it.  That will probably change any number of times before we figure it out. We want to try to have as much done as we can, and as many things put in their place before we move in for real. We had two weeks to pack an entire house the last time, and be out on Christmas Eve! We are still unpacking boxes from THAT move.  We won't ever do that again.

We showed the house 3 times in one weekend at the end of Feb/beginning of March. We have had nothing since. I believe we are going to try for a different agent and see what happens.

Christopher was doing really well in therapy for awhile.  Suddenly, he started getting puny on us. And by puny, I mean our poor PT was trying to hold up a wet noodle! He had lost more weight too. So, we talked to our ped and ended up checking him into the hospital a couple of weeks ago for Failure to Thrive. I won't go into all the details here, but it was not a very impressive stay this time around.  However, the GI decided to REDUCE the number of calories in his diet. He was on 4800 calories per day when we checked him in, and losing wight. So far, it seems to be working! I don't know if he has gained any weight yet, but he is MUCH perkier and happy.

I went into his room today to get him out of bed, and found him at the other end of his bed, turned around, and he had thrown ALL of his stuffed animals out or to the head of the bed.  He clapped & said  "Did dat!"  Ha!Ha! 

That is about it on the updates for now. I will try to get more pictures on here.  He is having a serious camera phobia right now. He turns away as soon as he sees anything that resembles a camera pointed in his direction! 

Hugs!~

Steph

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



Whole Lotta Nothin.....

It seems like we have been busy but still not doing a whole lot around here. 

Christopher is officially on the  5 day count-down to casts off. The first 2 weeks or so were pretty rough.  The casts seemed to make him REALLY hot. He is used to flipping around in bed and couldn't really do that. His heart rate was also sky high - we never really did figure out if that was bacause he was in pain, mad, or if the casts were putting pressure on the blood vessles in his legs making it a little harder for his heart to pump.  Now he has figured out how to swing them around and even crawl some!

Selling the house has gone S.L.O.W.L.Y!!!!!!  We have dropped the price $10,000 and are having another open house at the end of this week. Our original Real Estate Agent suddenly retired right be fore Christopher's surgery, so we ended up with another from the same company.  This week, the company has gone through some sort of re-organization, so everything was pretty much at a stand still. I told him I want this house sold and out of here by the first of November. Every time we move it is -5 degrees out - not this time.

We still have things to do at our new house - paint the bedroom, paint the hall and living room, and prime and paint some cabinets on the lower level.  Those we will have to use KILZ on first and I want to get that done before cold weather sets in so that we can leave the windows open because of the fumes. This will go much faster once Christopher has his casts off and it is easier to take him back and forth.  So far, we have painted Christopher's room, the Den and the bathroom.  Then it is just amatter of getting things put away - UGH!  

Since we have moved so many things over to the other house already, it has been a challenge on the homeschool front.  I finally just decided that this would be our "vacation".  We usually don't take time off except for holidays and hospital stays where he is REALLY sick.  He forgets too much if we don't drill on it every day.  We have still been working on animal names, counting to 10, sigining and other communication issues. I have noticed that he has been babbling more recently.  He used to all of the time "dadadadad" etc.  He is doing that again.  He also says "Chi - ken" "Turkey" "Cow" "un (one)" "koo or two (two)" "tree (three)" "Sic (Six)" "Ten" "Get" "Kids" "Papa" "Go" and "tan-ku (Thank You)".

Our big goal for homeschool this year is learning the alphabet.  We have started flashcards several times a day.  I have soooooo much stuff for alphabet work - but it is all at the other house.  I decided that we were going to go ahead and start calendar time - as soon as I have it all made up.  I will post pics when it is finished.  I will do a larger post on homeschool goals soon.

Otherwise, I have been spending entirely too much time on FB.  I am glad that I have been able to connect with some old friends and make some new ones. However, I think I am going to be limiting my time there.  Especially when we get to the new house and start in seriously with homeschooling. I have also left a few of my on-line file sharing groups.  I seriously have sooooo much stuff - for all ages. I have 5 different e-mail addresses and they ALL have over 6000 messages in them! Once I get all of those dealt with and the files down loaded, I will feel much better. I am also blogging at Living With Special Needs. When we get to the other house, I want to start cooking, gardening, and doing more than just laundry, diapers, and meds.  :)

For our family, we added a page to the top of the blog with links for wishlists for Christopher's birthday and Christmas.  There are lots of things there and at all prices.  We haven't found any "one" thing that we want for him this year - he has everything!  Most of the things I listed are just items that would be nice to have, and serve a dual purpose  - school, play, therapy.  If you find somethng on the list someplace other than the stores we used, by all means pick it up.  We just used those places because they had on-line wishlists.

We are also getting ready for the Buddy Walk!  Look for another post in the next day or so with the link to join the Buddy Walk team and/or donate to Christopher's Cowpokes!

Well, that is the lowdown for now! Hope everybody is doing well and enjoying this wonderful weather we are getting in the Midwest.  I LOVE FALL!  :)

Steph

P.S.  Our Buddy L.C. is having surgery to take out her G-button on the 8th!!!!!  Yeah L.C.!  If you could all say a prayer for an un-eventful surgery and speedy recovery, I am sure her Mom & Dad would thank you!!! :)

We are still here....

Sorry I didn't get anything else updated after surgery....Between computer issues and Christopher NOT being happy in his casts...it has been a long two weeks!

He came out of surgery OK. Woke up immediately and was mad/panicked ???  Part of the issue was the casts. The docs wrapped them VERY high up on his legs so that laying down the casts were cutting into his bottom and um....well, his pelvis in the front.  It was even worse when we tried to sit him up, which we wanted to do as soon as possible to keep his lungs clear. They finally ended up cutting them down a bit to a little over mid-thigh.  Still within the line of fire if the diaper malfunctions, but much better than they were.  :)

It has been hard to keep him comfortable the last two weeks.  He was HOT the first week or so - no fever, but his whole body felt like it was on fire. His heart rate while sleeping was between 150 - 170, which is WAY high.  Then he would get mad at not being able to move the way he wanted, whew!

He is down on pain meds - he actually did that fairly quickly. I wondered if the high heart rate was because of pain, but it doesn't seem to be.  He's just mad!  I think the medicine itself is also causing his heart rate to increase. There is also the thought that because the casts go completely up both legs, it is changing the way the blood vessels are reacting.

Otherwise, we have been dealing with crazy house stuff.  We dropped the price of the house $7000 this week. We have also been having some trouble with the mortgage company, but I think we are getting that straightened out. I just want OUT!   If anybody out there knows of somebody who needs a handicap accessible house that has been completely remodeled - send them our way!!!!

I am also getting my thoughts together about our lessons this year.  Last year was a bust.  We did school, but ended up following rabbit trails and didn't really stick to our plan.  Most of our school stuff is packed away right now, and I am not sure how much we would accomplish anyway - even with a captive audience.  I am thinking that we are going to wait to "officially" start school until late September - after the casts come off.

I do know that we are going to be concentrating on our alphabet, numbers 1-5, animals, transportation, various holiday stuff (turkeys, scarecrows, everything Christmas, etc).  I would like to get more in to art this year as well.  I think art projects are going to help us both with our theme and with sensory issues. It is also good OT work. Following directions and getting a consistent schedule is also going to be a big deal this year.

When we get to the new house, outdoor time is going to be a must. Christopher is like a mole and HATES being outside. We will have to work on this.  We have a pool, we are getting a small swing set, and I am already drawing out garden plans.  We are moving to a neighborhood that I grew up in, so I hope to be able to start walking again and/or bike rides. It is just hard to do with him around here. I am thinking messy art projects are going to be done outside as well.

One last thing, I have been invited to write a couple of times a month on another blog with a group of people all living with special needs.  If anybody has anything they would like to see tackled, leave me a message or shoot me an e-mail!  It can be anything, from questions about how you deal with social situations to where to find good information on medical issues, or even how others set up & store all their medical supplies!  Pretty much anything goes.....I will post a link when it gets up and running.

Hugs!

Steph