Preparing

Fridays are almost always my lay low days. We have our OT or home visitor come out on Fridays at 11:00. So, it's the perfect excuse for me to stay home and get stuff done. My fall decorations are out, the laundry is going, the dishes are clean, the windows are open and my fall scented candles are lit. This is a perfect day at home. But what makes it even more perfect? Karsen got from laying down to sitting up, 100% on his own! On our typical lazy Friday, I put on a movie for Karter, Elf. He loves that movie. Well, Karsen was rolling around and noticed a movie was on, and started to watch it on his stomach and twisted up. He did not look very comfortable. I was trying to coax him to at least scoot so he could see better but instead he just decided to sit up! Woo hoo! This is huge for him. This means he can actually get from laying down to sitting up on his own rather than crying at me. Well, looks like I FINALLY have to put his crib down to the lower notch. That's right, I still have his crib at the highest notch. lol So, today I'm finishing cleaning up the house, and then making a list of what to pack for Karsen and my trip to Stanford. Lots of books will be packed. I think it's going to be quite hard for me to not be busy with a million things. I'm going to enjoy every second of spending so much my undivided attention with Karsen. Any ideas as to what to pack for a 48 hour in hosptial EEG besides books?

Me and my sweet boys.

AFO and SMO

Yesterdays appointment for Karsen's casting went ridiculously well. He didn't make a peep and didn't move, just watched. I was shocked. They ended up casting both feet. Ok, when I say casting they take a cast of his foot so they can make the AFO to his exact form of his foot. So, it gets cut off right after it dries. They are ordering an AFO (ankle foot orthosis) for Karsen's left foot, that will go almost all the way to his knee bend. The SMO (supra malleolar othosis) helps maintain a vertical, or neutral heel while also supporting the three arches of the foot, it helps improve standing balance and walking. The SMO is still considered an AFO it's just the smallest of them all.  Karsen's right foot over compensates for the lack of coordination on his left side. So his right food doesn't stand flat. The SMO should help with that. The AFO for his left side is designed like an SMO but comes up much higher and helps support ankle rotation and prevents toe walking or standing, which is very typical in cp kids. Their main concern for Karsen's left foot is his toe curling. Here's some pics of examples below. I'm actually pretty excited to get these, it means Karsen's that much closer to walking (it's pretty far out of site right now, but we're working on it).

 above is a picture of an AFO

 This is what a SMO look like

 A pretty good shot of the difference of feet. Some obvious toe curling on his left foot.

 Getting his right casted

 Holding it still so it can form correctly.

Getting the left casted.

Karsen was  champ!

Eye appointment update

Yesterday was Karsen's appointment with Ophthalmology, the trip down there was probably the most successful and least stressful. We got down there, avoiding a good amount of traffic, while Karsen and I were in with the Doc, Karter and Kuper were outside playing. The doctor was very thorough and took a good amount of time with Karsen, I was very grateful. Karsen got his eyes dilated, which was fine, I was surprised he did so well when they administered the eye drops. Now checking his eyes after the fact, that's another story. Whew! He did not like that at all! He screamed for a good solid 5 minutes. The doctor had to bring in her assistant to hold open his eyes while she looked and I held Karsen against me. It was heart breaking but I also didn't want to have to do this again, so one shot was the goal. It worked. The doctor was able to get all the information needed and at the end of the visit Karsen got yet another diagnosis to tack on to his chart, strabismus. Really, I was relieved. The actual definition of strabismus is; a visual defect in which the eyes are misaligned and point in different directions. One eye may look straight ahead, while the other eye turns inward, outward, upward, or downward.  In Karsen's case, his right eye is turned inward. Because it isn't happening all day long the doctor is confident Karsen will not need surgery and all we need to fix it is eye patch him for an hour and a half on his good eye to strengthen the muscles in his right eye. Strabismus is common amount children with disorders that affect the brain. Number one on the paper we got? What do you think? Cerebral palsy. No surprise there. I'm very happy Karsen wont need surgery but sad we have to eye patch him every day for x amount of time. I know he's not going to like it. I definitely want to avoid doing this in public.... could you imagine the questions I will get for that one? A hand brace is one thing, an eye patch?! Poor little man. Well, that's it for the update. Karsen's scheduled on Monday for his 48 hour (they decided to do 48 hour to make sure they catch anything, rather than having to do it again) EEG. The best part about it? We get the results before we leave at the end of the 48 hours. Woo hoo! Immediate results don't happen very often in the medical world. I'm ready for it! Ready to get answers. Our hope? That Karsen's staring is a symptom of his seizure med and not an actual seizure, if that's the case than no more meds. If he is in fact having seizures, Kuper and I both want to switch him to a different med since this one he currently is on (zonegran) has so many nasty side effects. One of which, oral motor function. Since Karsen is having such eating problems you can understand why I want to get him off that med. Tomorrow Karsen gets fitted for his AFO (ankle foot orthopedic) I'm going to try to take my camera and get some pictures or maybe even film so I can put it up for people that will be soon going through this too. I have no clue what to expect. We'll see.... Until tomorrow. :-)