Thanksgiving Week Recap

Thanksgiving and all that has led up to the holiday was super busy. Pies to be made. Tons to be thankful for. House to be cleaned. Lots of family over for the big day and lots of yummy food to be eaten. Actually, there is still a lot to be munching on. I know what my lunch and dinner will be for a long time to come!

I fried my laptop the day before Thanksgiving with a few dots of my favorite chai tea. I have an appointment with the Apple store on Sunday. I'm hoping they can revive it. So...here's a quick PSA....back up everything on your computer because you never know when your dearly beloved will give you the black screen of death! Ugh, it makes me sick, but what can you do?

My anxieties over the powerchair are getting better as Caleigh is getting more used to driving it. She is a rock star at driving outside in the open areas. She is really picking up on it quickly. We played chase Daddy around the front yard yesterday and Caleigh was right on with her steering. She seemed to be having fun too. Inside is still the more difficult area. We added a pool noodle to the foot plate just in case she does run into something, but honestly the chair will win the battle no matter what it's up against. The temper tantrums are few and far between these past few days and that helps the anxiety too. Caleigh lights up when we talk about her chair and she rarely chooses to get out of it when asked. Although asking to walk in her KidWalk and asking to drive her chair are equal right now. No preference yet. She did circles in the kitchen for everyone at Thanksgiving and smiled like crazy while she did. The crop circles are popping up all over the carpet too. She's proud and it shines through.

No crazy, Black Friday shopping for us. Yesterday, we put up the Christmas Tree and listened to Christmas music and watched Christmas movies the whole day. Caleigh is still a fan of Elvis and his Holiday classics. She's still a little young to help with the decorating, but we talked about next year when she is a pro at driving her chair and how much she will be able to help.

Circle Video

Here's a video of Caleigh doing circles in her playroom. In the first segment she tells me "no" when I ask her to stop. Definitely showing her independence. The second segment shows how she can stop and go when asked.

Power Overload

I'm exhausted. Like, literally can barely lift my legs off the couch. The end of the week with Caleigh's new and fancy ride has been a busy one.

On Thursday, Eric and I figured out the suitcase ramp enough to load the chair into the van without killing ourselves and took it to OT. We played with switch placement and tray options, but really didn't get anything solid panned out.

On Friday, we had our yearly pulmonology appointment. We decided to take the chair with us. We parked, unloaded {once again without killing ourselves} and made it to our appointment on time. We gave Caleigh the forward switch and we kept the right and left for us to maneuver. Caleigh did awesome with the chair set up this way and we didn't run over any innocent children in the process. Although a women who wasn't paying attention almost ran into Caleigh, but quickly apologized. Every thing went well with the appointment. Caleigh's lungs are great, so we will go back for a follow-up in a year.

I got what I thought was an amazing video of Caleigh cruising through the hospital. Unfortunately, I turned the video camera off instead of on. So the priceless look on her face, the one full of joy and pride, is now just in my mind.

Every time I go to take a photo or catch a video Caleigh tries to drive off a curb, hit something, go the wrong way, or just generally freak me out. I'm a nervous wreck with this thing. I'm naturally a worrier, but Little Miss Independent doesn't want to listen to her mama anymore. It's a powerful chair, 200-300lbs and all I can see is her flipping it on top of herself. So I try to stay at her side and I keep the "kill" switch close by at all times. Caleigh's attitude about the whole thing is completely that of a 3 year old. She yells at us when we cut the power off. She gets mad if we try to guide her hand to a switch. She wants to do it her way and all by herself. It's very tiresome because she doesn't know how dangerous driving the chair can be.

Adding the powerchair to the mix makes everything else we have to do during the day that much harder. Preschool, therapy, gait trainer, stander, crawler, swinging, and actual play and relax time... Now we have to throw powerchair driving into the schedule. Maybe if there was a few more hours in the day we could fit it all in?

Another issue we are having is head control. It isn't even really head control. Caleigh watches Eric and I move the switches around on the velcro pad all day long. We are still trying to figure out their position. So she grabs the switches trying to pull them off, which subsequently makes the chair go. When they don't easily come off for her she holds her head down and pulls. Still the chair is going and she has no clue where she's headed. She is also a big fan of licking her hands in this position. You know, while she is already there....It's hard to get her head back up at that point. We've tried tilting the chair back, but that wasn't received very well. She definitely gave us some attitude on that one.

I know she will catch on in time. It's only been 4 days, but I feel like we have been fighting for 4 years! I think she finally realizes that she can do this. It's her's and she is in control, or so she thinks. Caleigh doesn't have much control over things. That's why the iPad was such a huge success with her; it gave her control to choose. She's a very stubborn little girl. So we will suck it up and continue the daily battle of the wills until Caleigh is a pro. It will happen. Hopefully sooner rather than later.....

The Powerchair is Here!

Here is just a small clip that we got this morning. I know it's just 30 seconds. We will have to get more video soon. We've made adjustments to the headrest, and switch plate and seat since this clip was taken. The switch placement will be an ongoing adjustment, but so far Caleigh totally gets it. She understands stop and go and within a few seconds of telling her to stop she will let go of the button. Caleigh is using both left and right switches in the house to do circles. We have the forward switch set up while we are supervising outside.

She is so excited! Every time I ask her {on her iPad} if she wants to get out of her chair she says "no" or "more."

Powerful Anticipation

On the slight chance that I sound ridiculously dramatic.....These beautiful leaves are just a tiny metaphor for how our lives will be turning this week.

In a little less than 32 hours Caleigh will be cruising around our home all by herself in her very own power chair. The anticipation is killing me.....

The feeling is close to that of a 6 year old at Christmas time. I seriously can't think about anything else. I can barely talk about anything else. It's like waiting on a $30K present. A present that doesn't quite fit down the chimney. A present that will forever change the independence of our little girl.

I keep thinking about the reaction on her face. Will she "get it" right away? Will there be holes in our walls? And who really cares about holes when your child can move around on her own? Will she be able to maneuver herself around Target while I push a basket? Will she try to "run" off like a 3 year old sometimes does? What if she is watching Sesame Street in the morning, but wants to see what I'm doing in the kitchen; will she be able to spin around and go to the kitchen? How difficult will the chair be loading and unloading from our van? Will the power chair be the last straw on my already achy back? Will she be able to use her chair at our friend's houses? Where are the wheelchair ramps? Will she be treated differently? How much time during the day should she be in the chair? I could go on and on.......

Of course, we won't know all the answers right away. Things will evolve with time, but still, my mind is racing.

I've watched the video of Caleigh doing circles in the demo chair almost a million times. Ok, maybe I'm exaggerating, but today alone Caleigh and I have watched it 4 times together. I've also watched tons of videos with kids similar to Caleigh using their power chairs. I have definitely lost a few hours of my life to this new hobby.

We have talked about the color of her new chair. We have discussed being able to move whenever she wants to, and that by just moving her arm, her body won't be fighting against her as much as moving her whole body. We have talked about 'stop' and 'go' and how important it is to know when to stop especially if someone is telling you to do so. Caleigh understands that she is getting a new chair this week. When I asked her if she was excited, she replied "yes" "yes".

Tomorrow will be a long day. I've tried to fill it to the brim with things to do. Grammie and Grampa are coming over in the morning. Then we have speech therapy. Then we will do preschool. Then nap. Then OT. Then maybe some shopping to pass the time. Who knows? Anything to pass the time.

The independence that this chair could potentially bring to our family is nearly breath taking. We can't wait to see what Wednesday holds.

Shady

Caleigh got her new sunglasses this week. We had been debating on getting her a whole new pair of shades or just replacing her current stylin' duds with transitions lenses. The new sunglasses won mainly because of the time it takes for the transitions to, well, transition. So Caleigh is the proud owner of a her very own Disney Princess purple frames with little hearts on them, sunglasses. She was so excited at the eye glass place. She was babbling up a storm and smiling like crazy. She loves them.

We now have Caleigh's feeds up to 55ml an hour. This allows her to be off of her tube feed for 4 hours a day. I think we will hold steady at this rate while we are trying to wean her off of the sulfasalazine (ulcer med). 4 hours a day is very liberating. This new milestone only took a month to achieve.

Caleigh still isn't eating anything by mouth. I really don't have an interest in trying right now either. Caleigh does enjoy suckers. I found these organic, free of of anything that might be an allergy, suckers, at Whole Foods. She loves them. Her favorites so far are pomegranate and sour apple. She tends to lean towards the more bold flavors. She isn't a fan of the sweet watermelon. Caleigh even requests these suckers on her iPad. So I know that she likes them. There is some oral motor stuff going on daily, but other than that I'm too exhausted to even try foods. Things are going too well to rock the boat.

Last week Caleigh was having really strong dystonic movements. I talked to the neurologist and we decided to wait and see if they got better before adjusting the Artane dose. I'm told that getting vaccines can cause an onset of stronger movements and being sick can do the same. Caleigh had a bout with allergies a few weeks back and we switched up her allergy meds. She also had the flu shot. So wait we did. On Saturday, I went to put Caleigh in her walker and I had to adjust it. Then I had to adjust her wheelchair, and then her stander. Apparently, what we were dealing with was a growth spurt. Her movements are a little stronger than usual but they are getting better. We decided to keep the Artane the same and actually went up on it last night.

This past week there was a shift in the wheelchair fight. I'm pretty sure Eric and I won, but I have no clue what we did to achieve the gold medal. Caleigh is now happy in her wheelchair. This has been unheard of. Usually 5 minutes in the chair and she wants out. Friday evening, past her bedtime, she sat at a busy restaurant for a hour in her chair without complaining once. She just hung out with everyone at the table. Saturday, she cruised around Target for an hour without fussing even once. Sunday she rolled around at the zoo for an hour and a half and only fussed at the end because it was past her nap time {stupid time change}. We have turned a corner people.....

We have 1 week until Caleigh's powerchair arrives. Just in time for Caleigh's acceptance of wheelchair living we go and switch things up. I'm hoping the transition is smooth and well accepted.

Nothing but Trouble

Little Mischievous here. I put her in the gait trainer and then stepped in the laundry room to start a load. I came back around the corner. Caleigh had walked across the room and was ripping the letters right off the wall. I laughed, encouraged a little higher reaching and then got my camera....