Ladybug Halloween

Caleigh has been telling everyone she could that she was going to dress up as a ladybug for Halloween. She even refused to tell us her real name at OT the other day. She just kept hitting the ladybug button. So we started calling her Ladybug. I think she liked it. A couple of weeks ago we went to one of those super Halloween stores and I gave her the option of three different styles of ladybug. She chose "Daisy Bug," as it was called.

The fact that she wanted to be a ladybug is mainly due to us learning about bugs the entire month of October and she received a Ladybug pillow pet for her birthday. She loves that thing. I didn't even know what a phenomenon pillow pets were until she got one that day. Now they are everywhere we go.

Halloween Eve, I gave Caleigh the option of wearing regular clothes or her costume. Guess which one won? I'm pretty sure she would pick it everyday if I let her. We got up early and spent the day at both grandparent's houses. Caleigh was exhausted by the time we got to my Nana's house and we were only able to stay a few minutes.

Eric worked today on Halloween so Caleigh and I stayed at home. We painted paper pumpkins orange. We read the book about Spookley the Square Pumpkin a few times. We went to the park so that I could run, but for some reason I was worn out and Caleigh was getting too hot in the jogger. After all, it was 85 degrees today. So we didn't make it very far.

When I got back in the van after loading everything up, I couldn't find my wedding rings. I looked around the van and in the van and then convinced myself that they were probably at home. We drove all the way home and they weren't there. So we drove all the way back to the park. On the way back I realized what had happened....I had taken it off and put it in my lap so that I could put sunscreen on my face. So it must have flown off my lap when I got out, right? When I pulled up to the spot where we had been parked, I looked out across the parking lot and saw it shining four spots away from the van. I jumped out, grabbed it and headed home. This isn't the first time that I've found the rings again. Those rings have more lives than a cat at this point!

We came home and cut open some pie pumpkins. I asked Caleigh to help me pull out the seeds. She reached in and started gagging. I'm not sure if it was the smell or the texture. Maybe both. She pulled through though and had it all over her in no time. She had a lot of fun playing with the pumpkin guts. I baked the seeds and then we got ready for bed. Nothing too exciting, but a memorable Halloween.

Progress Report

Here's some more fun and exciting things Caleigh has done in the past week or so.

• A couple of nights ago I laid Caleigh down for bed at her normal time. About 30 minutes later she was up screaming. I repositioned her and left the room. She continued to be upset. Of course, I am thinking the worse. Is there something wrong with her tummy? Has she stooled too little or too much today? Is she having seizures? So I get the iPad out and we sit down in the rocking chair. I asked her to tell me what was wrong. She said "I feel scared." We learned about scared last month in homeschool preschool. She really hasn't used the term since. I ask her if she had a bad dream and she went right for "yes." At that moment, I was in amazement that she actually just told me what was wrong. No searching, guessing and wondering all night. I was a little sad that she couldn't tell me what the dream was about, but finding out what is bothering her was half the battle. I told her that mommy and daddy wouldn't let anything happen to her and that she was completely safe. I laid her back down in bed and she feel asleep for the rest of the night. I'm not sure if this is the first time she has had a bad dream, but it's definitely the first time that we have found out about it.
  

• For the past couple of mornings Caleigh has been waking up with a wet and dirty diaper. Usually I put her on the potty as soon as she wakes up and she stools on the potty. The schedule has been all off since we got the special needs potty chair. Going to the potty hasn't been a big priority the past couple of weeks. So last night I was talking to Caleigh before putting her to bed and we talked about holding 'it' when she wakes up in the morning. I told her to just yell for mommy and daddy as soon as she wakes up and we will put her on the potty. I told her no diaper changes, bed pad changes and clothing changes if she can just hold it. This morning she yelled, Eric and I pulled ourselves out of bed, and I whined about it like I do every morning. We quickly put her on the potty where she peed and stooled. Her night time diaper only had a few drops in it which is fabulous considering she is fed all night long. I guess a little pep-talk is all she really needed. I'll be giving the said pep-talk every night now.
  

• We have increased the Artane dose again this week. So far so good.
  

• At OT Caleigh walked into the building in her gait trainer. We turned around and headed back outside to walk along the side walk. Our OT had Caleigh tell her 4 letters using her iPad. There is a section in our Proloquo2Go app for letters that she has learned so far in school. She choose A, T, L, M. Our OT laid down a chalk 4 square area with with those letters in the squares. The she asked Caleigh questions about the letters and told her to walk to the right answer. One question was "what letter makes the ahhh sound?" Caleigh walked right over to the A. She asked about 5 questions and Caleigh got them all right. Our girl knows her letters and letter sounds.
  

• Walking in the gait trainer has gotten increasingly better. Caleigh can now take 5 steps in a row without taking a break. That's legs alternating beautifully too. She seems to be picking up her feet more and placing them in perfect steps instead of dragging them. The most amazing improvement so far is her maneuvering. The girl barely hits anything and if she wants to back up or turn she does it. I put her in the gait trainer when I'm doing laundry, cleaning the kitchen or making dinner. Caleigh seems to walk more without the coaching, begging and watching. I keep an eye on her but let her do her own thing. She explores everything. She started taking paper out of our full recycle bins and throwing it on the floor and she's pulled our kitchen towel off of the cabinet door several times. It makes my heart happy. The other day she miss judged the dresser and bumped her head. The cry was sad, but at the same time I was giddy that she just experienced a "normal" toddler situation. I comforted her and then put her right back in the walker. She took off towards the kitchen like nothing had happened. We are very proud of her.
  

Glitter Pumpkins

This past week Caleigh and I worked on glitter pumpkins, and by "Caleigh and I," I mean I glittered and Caleigh hung around the kitchen. I got the idea from our friend Kristin. I think hers turned out better. Mainly because she used pink glitter. You can't go wrong with pink glitter.

I bought fake pumpkins so that we could use them for years to come. We used bronze, gold and silver glitter. I plan on leaving them out until Thanksgiving.

I haven't quite figured out how to store them. They are a mess. A beautiful mess. I'm finding glitter all over the house.

We also made it to a small pumpkin patch last weekend. It was super sunny and warm. Caleigh wasn't loving the sun in her face, but she didn't complain.

Which leads me to this photo. I think it's great. Caleigh's beautiful.
My entire college education revolved around photographs and their artful content. I worked for several portrait photographers during those years as well. Portrait photographers are an interesting breed or maybe it is their clients? Everyone wants their child, husband, sister, aunt and dog looking at the camera and smiling. Everyone. All at the same time. The majority want to look cosmopolitan flawless as well. Retouching for years, there are several tricks of the trade. Head swapping, mouth swapping. Are the eyes closed....no problem. Acne...forget about it. This is all fine with me and the way things are done these days. It's the standard, but definitely not reality.

Getting over these terms and conditions of a "good" photograph is hard when you have a child with special circumstances. Even harder for me is overlooking the training that I've had for years. I love Caleigh's smile. She's smiling 95% of the time when her favorite music is playing. If you want her to smile you either play music or tickle her senseless. Sure, she smiles when she recognizes us and likes certain things, but she isn't a smile on command kinda kid. I've come to love the other photos too. The ones where she isn't looking at the camera and her positioning isn't great. The serious, wise and endearing stares off to the side. The moment how it really is. Just Caleigh. Exactly like the picture above...it's perfect to me.

Adaptive Trouble

The trouble with adaptive anything is that it
Just. Doesn't. Fit. My. Kid

The bath chair - Either way you look at it the darn thing is too high or too short for my back to bathtub ratio. My back hurts more when I use it and Caleigh doesn't get as clean. We haven't used it for months. It's currently being used as a diaper changing station....sometimes. A bathtub cushy mat is doing the job with Caleigh laying on her back. Cost for the bath chair was around $500. The bathmat was $10.

The brand new potty chair - We've had it for over a week now. Caleigh has tinkled on it once. Just once. The splash guard in the front of the seat (made for boys) cuts into her chubby thighs. The marks left on her tushy after a 5 minute sit is just terrible. Yes, she can sit "all by herself" in the chair with the proper straps, but that doesn't help the fact that she just doesn't feel safe and comfortable enough to perform. So we've gone back to the Baby Bjorn potty chair. Why ruin what has been going so good? Rifton Potty Chair was around $600. Baby Bjorn was about $20.

I'm trying to come up with an adaptation for the new potty chair, but honestly my brain is toasted on the subject. Why after paying hundreds of dollars and waiting months for approval, we as parents must then use every last ounce of energy to adapt what is already supposed to be adapted?

The Kidwalk Gait Trainer - It's been tons of fun watching Caleigh get better and better at taking steps with the Kidwalk, but the original headrest that came with the set up was far too small. Caleigh spent most of her time looking up, head hooked around the side of the headrest. Yesterday our equipment people came out with several headrests to try out. We went with a tri-fold design and extended the side pieces outwards. The headrest is actually installed upside down. So far so good. Caleigh walked around our cul-de-sac for an hour this afternoon and she actually held her head more in the middle and forward than she ever has. We found a winner...so far.

The Leckey wheelchair - The chair itself works great as a seating system on the high-low base, but Caleigh's head has never stayed within the areas of the headrest. With the tray on the chair she can sit completely upright and use it to hold herself up. Even then she constantly wraps her head to the side and then up under the head rest. We pick her head back up and then she moves it right back stuck under the headrest. We recline her chair, she does the previous just the same only she works harder to achieve the feat. The wheelchair, outside our home, has been inactive for months now. When we leave the house we use an umbrella stroller that is probably the worst positioning chair around, BUT Caleigh's head stays in place and the chair isn't a battle. A side-effect of the umbrella stroller is the constant sleepy baby comments, and at 33 pounds, Caleigh is close to the weight limit.

I actually had a women, in Target, tell her rambunctious toddler "look at that sweet baby girl sitting SOooo still in her stroller" "She's being such a good girl" "Can you be a good boy for mommy?"
Really lady? An educational moment? Seriously sweetie?
If she only knew.........

A new headrest for the wheelchair is on it's way. Probably a month or two down the road. It's just like the new one on the Kidwalk. More of a tri-fold design. I would like to have high hopes, but at this point we'll just wait and see.

The Orthotics - I just recently wrote about our AFO woes. We took Caleigh for a second opinion with a different company last week. Same song and dance different location. The company that we went to uses DAFOs. Our insurance already paid for the current pair. So unless we fork over $1400 for a new pair; we'll be waiting another 6 months until insurance will approve another pair. The people we met with really didn't offer any new suggestions and basically said that the braces that we have should be working. They told us that her feet are too small and that once her feet get bigger we won't have the problem of her pulling out. I don't get it. Maybe it's physics, who knows? I asked about SMOs, two piece construction, hinged and basically anything I could find on the internet. They didn't feel like anything different would work right now. Caleigh needs something that works. Her ankles are getting tighter everyday. Putting on a brace for 2 minutes doesn't give a good enough stretch. I just don't know what to do. To top it off, I called our current company about making adjustments and we have to wait 4-6 weeks for that. I'm just so frustrated with the whole thing.

Today we got word that Caleigh's powerchair will be delivered to our DME place in 2 weeks. At that point they will put it together and then deliver it. We could have independent mobility by Thanksgiving. I'm sure the chair will come with obstacles, but I'm trying to be optimistic about it.

Basically, we have learned the value of patience, mixed frustration and most of all, one size does NOT fit all!

Homeschool Preschool - 1 month update

Homeschool Preschool is going really well. I'm definitely more relaxed now that we have been at it for over a month now. I'm no longer timing our sessions. I don't have a conniption if our mornings are too busy to squeeze in a lesson. I know that I will get them done within the month. No Biggie. That's the best thing about homeschooling, you can fit it in whenever you want. I'm usually such a set schedule person, but the spontanaity is fabulous.

Last month we learned about family and pets. To teach the lesson on fish we loaded up and went to the pet store. We came home with a goldfish. At first, Caleigh was afraid of him/her, but after about a day she wasn't scared anymore. She "helps" me feed the fish by walking in her gait trainer over to the fish bowl. We went with the simple orange goldfish, you know..... if something happens. There will always be hundreds more just like him.....just in case.

This month's theme is Bugs and Crawly Things. It's really been a lot of fun and Caleigh seems to like the idea of insects.

I've added a bugs section to her iPad so that we can talk about the different bugs and what we have learned about them. So far Caleigh tells me that the ladybug is her favorite insect.

By using the pad and getting feedback from Caleigh it makes my job so much easier. Most of the time she will answer my questions. We have meaningful conversations. There are days that she won't answer me using her devise though. Those are the harder days. Those are the days that I really don't know if she got what I was teaching. I just continue on and hope that things are sinking in. It is just preschool after all.

Then there are days like today. The preschool in a box has sight word books every month. You are supposed to teach 3 new sight words every month. So the first month I couldn't figure out how to do it with Caleigh. How do you teach sight words when your child can't talk to you? I ended up just reading them to her and pointing out the words. So this month I made it to the 3 new words and did some brain storming. I ended up adding the words to Proloquo2Go.

am, the, I

We read the book together and I pointed out the words. We went over the words a few more times. Then I had Caleigh tell me what the words where using her iPad. She did really well. She would even choose the words in the order they were written. Whether she was matching the words from the book to the iPad or she was really reading sight words, I don't know. It's a good exercise either way.

The positive scenario made me think about public school again. I didn't intend to revisit the thought, but it just popped into my head.

Would the teacher have known to try sight words with Caleigh?
Would the special education classroom even be close to working on sight words? Would they try adding the vocabulary to the iPad?
Would she even be able to use the iPad in the classroom?

Then I thought for a second about how I hadn't worried about Caleigh's education since I started the homeschool program. I seriously hadn't even thought about it, which is ludicrous because the past year was full of worrying about her schooling. It's in my hands right now and that makes the thoughts of my child falling through the cracks fade away. Just another bonus to Homeschool Preschool.

The one where there are updates

The huge outpouring of support and hope from the WSJ Article has been amazing. The article has been translated into Italian, Spanish and a blog reader in Australia commented that the article was in her local paper. It's exciting to know that maybe through this blog and through the article we reached someone out there looking for the perfect solution for their non-verbal child.

Even though Caleigh's sweet smile has been traveling the world in print; we haven't changed anything we are doing down here in the real world. Caleigh still has therapy and appointments galore.

This week we met again with our local representative for Prentke Romich, whom I just love. With Caleigh's language skills being normal, we wanted to re-look at a devise that would give her all the words a 3 year old would use. I've said it before on here, but I love the PRC language system, Minspeak. It's real sentences and proper grammar. Caleigh tried her little heart out, but the big boxes of 45 squares were just too much for her fine motor skills. It was exhausting to watch just how hard she was trying and it was even more heartbreaking to watch her fail over and over. We've seen what we need to work on fine motor wise and for now the iPad is still the best solution for Caleigh and our family.

I've learned in the last week or so that I need to keep adding new choices to Caleigh's Proloquo2Go app. She gets bored easily and I'm noticing it more and more lately. If we change up a location or add a new fun option she wants to tell everyone the new items. Just like speaking new words for the first time. Caleigh wants to repeat it over and over.

Caleigh's boredom crosses over to her world of therapy as well. The past two weeks we have been walking up and down our driveway sometimes twice a day. Music must be playing at all times for any sort of success and she has to be in the shade. The end of last week the new had worn off and she was done. Caleigh will drag her feet and hang her head down when she's not interested. The other day I loaded up the gait trainer and we went to OT. During OT Caleigh walked around outside the building and back to the van. She was all smiles and perfect pretty steps. I'll be loading up the heavy contraption a lot more. The KidWalk is our key to age appropriate peer involvement.

Here's a video in her KidWalk. The first section Caleigh is wearing sock-shoes with no support. The second section Caleigh is wearing her Piedro Boots. Our equipment company is bringing out more supportive headrests this coming week so that Caleigh can't throw her head backwards while walking.

Caleigh and I both got our flu shots this week. Eric will get his this coming week at work. Caleigh actually did pretty good with the shot. She cried for a second and then gave the nurse the saddest, most enduring lip pout I've ever seen. Her feelings were definitely hurt.

The Artane journey is still going really well. Caleigh is tolerating the increases in stride. Just this morning she got out of her tomato chair again. Total count = 3 times. Caleigh can also wiggle commando crawl about 3-4 feet at a time without rolling onto her back. The Artane is making her more steady so she can stay on her belly longer.

The feeding situation is back to where we were before the adjustments and Caleigh's stool is back to where it was before as well. She just couldn't handle the quick changes. So now we will slowwwwwly increase the volume and decrease time on the pump. Slowly.

We took Caleigh to the dentist this week. She got a check up and had her teeth cleaned. She did a superb job and was able to sit still so much longer this time. She also didn't bite the hygienist repeatedly. Last time it took 3 visits to get everything cleaned. This time it took 30 minutes. Progress in the right direction.

WSJ Video

Here's a video from Digits - The Wall Street Journal's Digital Network. They talk about the article for the first few minutes and there are more photos from our shoot.

Wall Street Journal

Check out our Brilliant and now Super Famous Girl
over at the Wall Street Journal!

The print edition should be out in the morning 10-13-10

New Boots

We call Caleigh's AFO's her Boots. She got a new pair this week.

I honestly hate the things. Caleigh can pull and wiggle her feet out of them in 5 seconds flat. The time it takes to put them on, stand up and start strapping her into her stander is exactly how long it takes for her to get out of them. So then we sit back down and repeat until we are fast enough to beat her to the standing position.

Don't even try to just wear them around the house either. If she isn't strapped in and bearing weight on them.....their coming off.

For some delusional reason I had high hopes for this pair. Not sure why, they are the same AFO just bigger.

Did I mention I hate them?

The orthotics lady says it's because of Caleigh's dystonia. The extension and relaxing of the muscles over and over wiggles her out. This is the main reason she can't have hinged AFO's too. They are afraid she will do damage to her heal.

So what to do? Try our hardest to at least get her in them long enough to bear weight in her stander. This was basically the only time she wore the old ones anyways. So we will definitely continue with that.

The other option I have been looking at is the Piedro Boot. This is normally a shoe worn by kiddos doing conductive education therapy. We have a hand-me-down pair of their sandals from our friends the Lieck Family. Caleigh's feet are still about 2 sizes too small for the loaners, but we have been using them. She is taking steps in her gait trainer wearing them and the steps look good. Caleigh won't even bend her legs in her AFO's. So I'm going to figure out how to order a smaller pair of the European footwear and get Caleigh the boot version.

Anyone have any other stability shoe suggestions? I'm open minded at this point!

We've got to figure out something that works for all day wear and right now AFO's are not that something. They serve their purpose, but for kids like Caleigh...conformity isn't always the best fit.

Don't Rock The Boat

If it isn't broke don't fix it.

Caleigh's GI issues have been stable for the last 2 months. We haven't seen our GI doctor in 2 months, which is an all time record. We had our appointment last week and because Caleigh has been doing so well we all decided to shake things up a bit. I called it optimistic as soon as we walked out of the office that day.

Here we are one week later. Liquid stools, red bottom, coughing and retching more.

Ugh.

Caleigh has been getting 50ml an hour for 22 hours a day. We also give 120ml of pedialyte for extra fluid throughout the day. She will get a "taste" of foods here and there, but we really haven't been trying to feed Caleigh. Quite honestly I have no interest in it right now. The other night she did share a grape sucker with me, but that's about as far as we go. I'm just terrified that she will have a reaction and then end up back on TPN.

So the plan is to go up on the volume little by little cutting out a few more hours of feeding time. We call it freedom time. Caleigh is free from the tube and we are free from watching the tube. Life just a tiny bit simplified.

This week we went up 1ml every 24 hours until we reached 55ml an hour for 20 hours a day. 5 more mls and 2 more hours off. The plan was to stay at that rate until we knew for sure that Caleigh was tolerating it.

Two days into the new rate and Caleigh started moaning in her sleep and then the stool started. It hasn't really stopped either. Last night we put a halt to the new plan and dropped back to where we were. This morning a dirty diaper woke us up at 6am. Caleigh usually doesn't get up until 7:30. Maybe things will get better today in the stool department but it didn't exactly start off great.

We've also started her back on the ulcer medicine. She has been off of it for 2 weeks. The two changes overlapped too closely. So there is a chance that she still needs the med as well.

Back at square one, we'll give her some time to recuperate and then try going up more slowly next time.