Updates Galore

It's been over a week since my last post. We've been busy enjoying the hot weather. Here's a little recap.

I took Caleigh last week to get her eyes checked. It's almost been a year since we got her glasses so I wanted to make sure nothing had changed. As soon as they dilated her eyes, her cooperation level went to zero. Her prescription hasn't changed, but of course the eye doctor still wants us to do surgery on her crossed eyes. I bascially told him our kid is doing amazing things with the iPad we aren't ready to cut on anything. He never gets to see Caleigh like we do. She always closes her eyes and refuses to participate. It's a hard decision.

We went and picked out new glasses and they should be in sometime this week. Caleigh's head has grown and we were getting close to needing new frames anyways. Since the long time out, Caleigh doesn't mess with her glasses. Occasionally, I have to warn her, but over all I think the lesson was learned.

Caleigh did ask to go to the library this last week. When we got there she started crying so much that we didn't even make it inside. I'm thinking we will take a break from the library. For whatever reason it upsets Caleigh.

We were accepted and approved for a charity that wanted to provide us with a wheelchair lift for the van. We went through an evaluation and decided on a Bruno Curb-Sider. We dropped off the van. Four hours later when we arrived to pick it up we were shocked.

The lift was in the van, but the installer actually CUT Caleigh's power chair to "make it fit." They didn't even call us before deciding to cut the chair! Long story short, they will be replacing the damaged areas of the power chair. There have been a lot of I'm sorry's and apologizing going around, but the truth is I don't have the patience for this. Our property was treated with complete disrespect and now we just want it back to where it was before the installation fiasco.

We are still deciding on the lift. The current installation doesn't allow the chair to clear the bumper of the van. So we can't use it anyways. We may go with a platform type instead. We'll make that decision sometime this week and hopefully get everything resolved.

On Friday, I got away for a day and made a trip to Austin with a couple of friends. We shopped, swam, walked around, watched the bats fly out from underneath Congress bridge and made it home at 2am.

It was a nice break from our normal. I had to get up with Caleigh the next morning so I'm pretty sure I lost a whole night's worth of sleep. I may need a vacation from my vacation.

The next day we went over to Kendall's house for our first swim of the summer. We hit 100 degrees for the first time. The girls had so much fun kicking around.

The water was a little chilly, but Caleigh literally smiled the entire time.

Caleigh's smile makes my heart melt. I am so happy that she loves to swim.

Swimming is something that Caleigh can do all by herself. I think that's one of the reasons why she loves it so much.

On Memorial Day, we spent the day putting up Caleigh's little pool in our backyard again. It should be ready for a swim this afternoon.

I've decided that Summer 2011 will be the summer of fun for Caleigh. We've booked our beach condo for July. We are visiting friends in the mountains as well. Swimming, early morning walks and road trips will fill our days. Therapy, AFOs, and equipment will just have to take a backseat for a few months.

Feeling Better

For the past couple of days, since emotional Tuesday, Caleigh has been doing really well. She hasn't had any timeouts and amazingly enough she hasn't taken off her glasses once. Maybe the lesson was learned?

I added two new choices to her iPad yesterday. "I need to take off my glasses" & "I need to take off my boots." I've also made an eye appointment for Monday and then from there we will go look at new eye glasses just in case the current pair is getting too small. Although, she doesn't complain about them hurting. I just want to check all our bases.

On Wednesday morning Caleigh did wake up "sad." She was sad that she had gone potty in her diaper and that she needed help changing it. We used that opportunity to talk about her feelings and the fact that she needed help. I think it went well.

Yesterday, she pitched a fit at OT because she didn't want to throw balls into a game. After she calmed down, she said: "I don't like it, okay" "B-A-L-L-S" Our OT was helping Caleigh do the throwing because she cannot yet achieve that task on her own. I think that realization triggered the moment.

Despite the one ball incident, Caleigh has been happy and she is sleeping well. I'm not sure I want to jinx anything, but Caleigh has been sleeping through the night now for the last month. I'm finally having some nights where I do the same.

Hoping we have a weekend full of good choices and happy smiles.

"I feel sad, I need help"

Today our speech therapy was canceled. We were all dressed and ready to go so I asked Caleigh if she wanted to go to the library. She said yes and off we went.

We pulled up to the library. I unloaded her wheelchair and got her all strapped in. I added the iPad, with Proloquo2Go pulled up on the screen, to our new RJ Cooper mounting arm. We've done this before. Caleigh can tell me yes or no to books that I pick up.

We rolled into the children's section and started looking at books. I picked up one about a chicken, asked Caleigh if she wanted it and that's when she lost it. Screaming at the top of her lungs. Basically flipping out. I tried to talk to her, but she couldn't hear a thing I was saying. So we turned right around and got back in the car.

Caleigh cried the whole way home. Sobbing sad cries mixed in with some 'pay attention to me' screams.

When we finally got home she screamed in my face so I put her in timeout. After 3 minutes we sat down with her iPad and I asked her why she started crying in the library. She was still huffing and puffing and her arms were still very tight from the fit.

She said "I feel sad"

I asked her why she felt sad. I asked her to spell it for me. All she could get out was "N-E"

I went back to the home screen ready to almost give up. Then she said:

"I need help"

I tried to confirm. I asked her if she felt sad that she needs help. She told me "yes."

I literally started tearing up right there.

Now this could be one of two things or both.

One being that Caleigh is like every other 3 year old who wants to do things for themselves. i.e. get dressed, tie shoes, walk without holding your hand. Independence. Every kid dips their toes in the water.

The second scenario is more heartbreaking to me. Perhaps Caleigh knows she has differences. Maybe she understands that other children don't always need the help of others to do every single task. I do know that she does understand that not everyone uses a wheelchair. I asked her. I thought I had a couple more years on that one, but I was wrong.

Caleigh's behavior lately has me leaning towards a combo of the two. Timeouts have become more frequent. Public outbursts happen once a day when out. Testing behavior is becoming more regular. There is an intelligent little girl in a body that just doesn't do what she wants it to. She's frustrated and acting out.

This afternoon we had a marathon of wills. It started because I told Caleigh not to take off her glasses. This is a constant struggle in our house. 2 seconds later they were on the floor. She literally looks at me, gets that pointer finger up there, and in moments they are on the floor. The timeout lasted for almost an hour. It looked like a scene straight from super nanny. Hysterical kid with a mom trying to not give in or end up in tears. She ripped off her glasses 5 times during the timeout and screamed, arched and did everything she possibly could do to let me know she wasn't happy. Finally she calmed down enough for me to talk with her. After timeouts Caleigh knows that she has to tell me she is sorry on her iPad, and she always tells me that she loves me, but that part isn't required. So sitting there with her iPad she says she loves me about 3 times, throws in an "I missed you" and refuses to say that she is sorry after I give her to the count of 10. So again she goes back to timeout. Repeat with the same result two more times. In the end she did tell me that she was sorry (at the count of 7) with the whimper of a child being forced into giving up the fight.

Stubborn.

The two scenarios really don't mesh well together. Independence is not something that Caleigh has right now and she knows it. Independence, in any form, is exactly what Eric and I strive for regarding Caleigh's future on a daily basis. Right now though, she is completely dependent on us. The truth is that Caleigh will need some sort of assistance the rest of her life. Sometimes... I just hate the truth.

I'm not sure where today leaves us. I think this is just the beginning. I do know that I'm going to put together a book, in the best children's language I can, about Caleigh's story. I think it's time to start educating Caleigh about her miracle life. About what makes her amazing and not just different. Other than the book and timeouts, I'm not really sure what else to do.

This whole parenting without an instruction manual stinks sometimes.

Finding Myself

Sometimes I choose to live in the comfort of our home pretending that the rest of the world has the same challenges that we face. When we are safely at home the stares, comments and reactions of others don't exist. Sometimes I feel completely philosophical about Caleigh's disabilities. I'm ready to talk about it at a moments notice. Sometimes I want to act like every kid in our neighborhood uses a wheelchair.

This weekend Caleigh spent the night with her Mimi & Pop. This is a rare occurrence and she was really excited about the sleepover. That night at home I missed her presence terribly. The next morning Eric went to work so I was alone in our quiet house. I slept in exactly 30 more minutes than our usual. I muddled around doing dishes and cleaning up the kitchen. I didn't turn the TV on. All was quiet. I briefly thought about going running but decided to eat breakfast instead. I sat on the couch for a mere two minutes and couldn't take the silence. My good ole brain started going. What on earth would I be without Caleigh? What if she was gone tomorrow? I wouldn't know what to do with my life. My thoughts of the "what ifs" are stirred by little Emerson and her mother Erica this week. Both have lived in a hospital, away from the rest of their family, for 4 years now with Emerson being on the brink of Heaven so many times I've lost count. I often think about Erica and her struggles. My heart feels for her on so many levels. The hope she holds for her daughter's survival is extraordinary. At the same time I wonder who will Erica be when Heaven calls on Emerson?

Often I wonder if parents, just like myself, lose their identities in the care of their children. I'm truly different since Caleigh's diagnosis during pregnancy, and it becomes more apparent all the time. Crowds are now difficult for me to handle. Social situations are awkward at best. My bubbly persona that once described me only peeks through every now and then. I was the girl that was always happy. Always smiling. I can still smile and laugh, but my motives are different. The results have changed. I'm definitely more cynical and snide about certain things. Where before I was naively positive. My empathy for others and their needs isn't what it should be; isn't what it once was. My rational is jaded. I'm not walking around crying all the time, but I definitely have a more serious nature about me now.

Coming off of a three week intensive physical therapy session you would think that we would be continuing those exercises and practicing constantly. Quite the contrary. There is always something else on the list to do. Something more important to move onto. Caleigh doesn't just not walk. There are a multitude of areas to work on; not just one. It's difficult to think about the equipment and the exercises that need to be worked on daily. When you break it down and do everything on that list there really is no room for driving to and fro, living and being a family. How much is too much? I think I've reached a plateau of sorts when it comes to the importance of what has become a rigorous schedule.

With the ever changing tasks at hand "finding myself" has taken a back seat. I find a day or two free and let my mind wonder to projects that I've always wanted to do. By the time I realize I want to implement them the chance is gone. An example being that I used to love photography and everything that encompassed it. Now photos are a way to document Caleigh's life. Very rewarding, but different from what that love previously was.

"I don't know how you do it?" is spoken to me weekly. I've realized that I do it because I just do. I put everything else on hold and just do what needs to be done. I whine on this blog occasionally, those close to me get to hear it as well and then I get back to what is important. Caleigh.

"What lies behind us & what lies before us are tiny matters compared to what lies within us." -Ralph Waldo Emerson

Barrier Free is cool with me

Literally 3 minutes from our house is a brand new barrier free playground. The playground had it's grand opening ceremonies on Saturday morning so we stopped by and hung out with some of our friends. The park was crowded with people, but already I could tell that this park will change our lives.

There was a roll-on merry-go-round. It's amazing for kiddos in wheelchairs, but super complicated/dangerous for the kids pushing it around. I've already seen a handful of kids hit the ground. Think about the treadmill effect....

Caleigh & Kendall swinging
We will have to figure out a strap system for these swings, but so far Caleigh is staying put fairly well. I'm a finger tip away from her and an added bonus is the super squishy flooring that covers the area.

The "circle swing," as we are now calling it, is Caleigh's most favorite thing in the whole park. She can't seem to get enough of it. The definite con to this amazing round wonder is that there is no shade over the swing and the white area is metal. I'm thinking we won't be able to use it in the hot summer. Bummer.

Caleigh and Wade enjoying the merry-go-round.
We were only able to stay at the grand opening for about 30 minutes. Caleigh started throwing one of her loud fits so we decided to exit the park. I thought maybe she was hot, maybe tired, possible crowd overload. Nope. I pull out the iPad when we got to the van and what does she tell me? "I want to play" Yep, we were just standing around talking and not playing anymore. Caleigh has never been able to play at a park before. We tried all of the stuff, but really didn't stay with anything very long because of the crowds. She threw a temper tantrum because she wanted to play. That makes me smile. It makes my heart happy that she now has a park that she can call her own. A park that allows her to "do" without our help. It's a beautiful thing.

So with a whole new section programed into the iPad Caleigh can now ask to go to the park and tell us what she wants to play on when we get there.

What did Caleigh want to do this morning?

Go to the park, of course!
So my Mother's Day morning consisted of swinging, and swinging, merry-go-rounding and sliding.

I educated a couple of kids that were fascinated by Caleigh's iPad use. I also hung out with a bunch of dads and their kids. It must have been a theme; let mom sleep in - take kids to the park to waste time.

Caleigh played a whole hour and preceded to throw a fit when I told her it was time to go. Mommy was tired. I also played at the park for an hour!

We are now open for many playdates at the park. What an absolutely normal thing to be able to do. I love it!

Updates after Intensive

Caleigh's 3 week intensive physical therapy has come to an end. I think both Caleigh and I were just getting into the groove of things. Now we will have a new schedule at home to get used to. Overall, intensive went well. Caleigh's arms seem stronger. When she is holding her head up it appears to be straighter than before.Caleigh can sit to stand and stand to sit with more control as well. Stronger is the main theme.

I haven't talked about Caleigh's intestines or food issues in a long time. That's mainly because there hasn't really been any problems to speak of. We stopped the ulcer medicine almost a month ago because the side effects of retching and increased stools were terrible. The bleeding had stopped at that point so we are chancing that the ulcers aren't causing issues right now. Caleigh is now off of her feeds for 7 hours a day and we are continuing to slowly work towards longer periods of time off. She doesn't complain of stomach pain anymore. We haven't been giving Caleigh any foods other than the occasional avocado and we always ask her if she wants it first. Most of the time she tells us "no thank you."

Since Caleigh got her new AFO's we started searching for shoes to wear over them. The SMO insert causes more of a issue than the actual width of the shoe. The insert actually makes most shoes impossible to velcro shut. I ended up ordering from zappos. New Balance has extra wide shoes so I ordered a few pairs to try out. I remembered reading a post from Oia's mom about AFO shoes. So I went back and re-read it looking for tips.

The main thing that I had forgot was to cut out the tongue of the shoe. It serves no purpose when your using AFO's anyways. So that's just what I did; took out the insole and cut out the tongue of the shoe. The heavens parted and the velcro closes just fine over the top of Caleigh's foot. You can't even tell we took a razor blade to them.

The actual AFO's on the other hand have 'stretched' some. Caleigh is now able to pull out of them. It only took her about 3 days to achieve. So we have an appointment on Wednesday to adjust the boots. The straps are stretched out and there are some fit issues to look at, but overall these are much better than the last pair.

Caleigh's been throwing fits lately. The high pitched squeal that comes out of her little body can make a grown man cringe. Probably age appropriate, but most outbursts relate to her not being able to communicate with us while we are out and about. Wanting to talk on her iPad can also cause a fit if we aren't fast enough. She's becoming a bit of a drama queen. I think we may be dealing with a "the world revolves around me" syndrome. Everything from wanting to leave a birthday party, being sleepy and wanting to play longer can cause an outburst. I wish I could read her mind all the time but the fact is, I can't. I'm working on some communication changes with the iPad that will hopefully make a difference. Hopefully. Until then I'm asking for those around us to bring your ear plugs and hang in there.