Painting with Marbles

Awhile back I ran into a marble painting project on Pinterest. I filed it in the to-do part of my brain and moved on. Today I woke up and decided that I wanted to bust out the marbles and paint. The only problem was that Caleigh and I had to venture out to actually buy marbles. We didn't own any and I'm pretty sure Caleigh had never seen a marble before today.

$1.29 later we had a small bag of marbles and we were set. I used Grammie's cricket machine to cut out some pumpkins, since Halloween is only two days away. Next, I taped them to an old pan we had hanging out in the kitchen {note to self - scrub pan better next time}.

After we played with the marbles for awhile, we dipped them into the paint, threw them in the pan and got to painting.

I showed Caleigh how to hold the pan and tilt it back and forth. I helped her a lot throughout the process, but I held her hands in place. We re-soaked the marbles in paint three times until the pumpkins were coated. Caleigh smiled a lot and seemed to be engaged and having fun.

I backed away to take some photos and Caleigh decided to do a little more painting. She picked up the pan and started moving it around. It was really great to see. Caleigh's motor skills are really improving. Definitely a proud Mommy moment.

Honestly, I've never painted with marbles before. It was really fun and the results are neat. I have plans for Christmas tree banners and Valentine hearts in the future.

Green, Puberty & School

It's always odd that in Texas Autumn doesn't really bring the beautiful colors of nature that everyone is experiencing this time of year. I long for the reds, oranges and yellows of the season. Fall actually brings back the green for us. After the drought of the summer, everything is crispy brown. The exception being suburbia lawns that are always well manicured. So when the heat subsides and the showers return we get green again.

Green just so happens to be Caleigh's favorite color right now. Ask her what crayon she wants and it will be green. We have been focusing on holding crayons and trying out some different finger grips for her to use. The triangle crayons are perfect for her now. The big fat "baby" crayons are out the door. She's moving on up.

Today, Caleigh has asked to color twice. This morning we did a unit study on baby kittens and this afternoon we colored a kitten mask. While Caleigh was coloring the kitten mask, I was working on editing photos. I glanced over at her at the exact moment she was transferring the crayon from her left hand to her right. I sat quietly, staring in amazement. If I had said anything she would have been startled or excited and we would have lost the moment. Caleigh has never transferred from one hand to the other before. It has always been one of those questions on the 6 month/year reviews that I hated. It sounds so easy, but when one side of your body works against the other it's terribly hard. Today, Caleigh did it and she was proud of herself too. Inchstone achieved. Now we work on it happening again by giving her the opportunity. The art career is looking bright.

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Caleigh is recovering well from her scope almost two weeks ago. It took almost a week for the constant pain to subside, but it's better. She actually tells us that she feels happy again. It's nice to hear because it really has been a long time since she's felt that way. Caleigh is also done with the antibiotic for her UTI. I'm sure that makes her feel better as well. After finishing the antibiotic, we started up VSL3, a probiotic. We've tried this stuff before. It's a serious probiotic for people with IBS and Colitis. In the past Caleigh has not handled it, but in the past other things were always to blame. This time our GI wanted us to try it again. Three days in and we made the decision to stop it. Caleigh was bloated, stooling more, complaining of her tummy hurting and not sleeping. That was enough for us. It's been two days since stopping it and she is feeling much better. She even slept the entire night last night.

The biopsies from the scope have only half come back. So I will do a post when we get all of the results in.

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This past week we had an appointment with endocrinology. It's been almost two years since we've seen them. At the time we were watching signs of precocious puberty. This early puberty is a possibility with kids, like Caleigh, that have had damage to their brains. When we met with them back then, Caleigh was having strong body odor. They told us to watch for other symptoms of the early puberty and to use a salt deodorant stick. So at two, Caleigh started using natural deodorant and we chalked the odor up to increased bacteria in her body. The deodorant never really worked either.

In the last few months, we started to notice some other symptoms that could be leading in that direction. The body odor is still ever present, occasional acne, no weight loss, and increased hair. So at our appointment they ordered a lot of labs to check hormones and her thyroid. They basically said that Caleigh is headed that way, but really there isn't anything we can do until she develops breast buds and or starts her menstrual cycle. At that point they will start a hormone to stop it. There is no timetable as to when this will happen. It may not happen until it's supposed to or it may be soon. So we wait while our 4 year old is possibly developing too quickly. All of this is due to the brain. The brain regulates the hormones. Just another prematurity sucks kind of moment.

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On to school. Eric and I have decided not to send Caleigh back to school at this time. Besides the disagreements we have had with the teaching staff, we have made this decision based on Caleigh's health. We are finishing up evaluations and assessments in our home this week. We have filled out a homebound education packet and we will wait on the doctor's orders needed for that process. Then we will have an ARD meeting to discuss the details. If anyone has this set-up, we would love to hear your experiences. It seems the options are endless, but it also seems like they want us making the requests. I'm not sure what to request with 2 hours of instruction a week. Curriculum? Equipment? We do plan on supplementing but having the school district on board might help with certain areas.

Here are the possibilities regarding Caleigh's public school experience related to her health.

1. Caleigh quickly picked up a virus which led to her increased stooling and severe pain.

2. Being extremely stressed on the second day of school caused her ulcerative colitis (which was already irritated from bacteria) to flare up causing the increased stooling and severe pain.

It was foolish of us to believe that we would know the difference in Caleigh's chronic intestinal issues and that of a virus. Caleigh's tummy has always been a guessing game. Why we thought it would be different this time is beyond me. It knocked her down, whatever it was. We tried.

Homebound education through the school district is the logical next step. We've done the meetings, the paperwork and the evaluations. We plan on giving it a try. There are benefits and there are cons to the process. We won't know until we try it. So that is the plan for now.

Proloquo2Go iPad Keyguard

Since the moment Caleigh and I drove to the Apple store and bought her iPad, I've been trying to create a functional keyguard for Proloquo2Go. Caleigh needs a keyguard no questions asked.

There have been many prototypes as you can see. I'm not sure why I kept them all, but as of today the drawer has been cleaned out.

I'm not even really sure when "the one" came into use. Maybe a year or so ago. I get emails and comments all the time asking me where we got it. If we run into a therapist of any type they get all excited and ask me all about it. I've been told to patent it...yeah, in my spare time with all my spare moola. I wish. It's made of gluesticks. Hot glued together to form a grid. Just enough of a ledge that Caleigh can rest her hand on it. Just enough texture and form that she doesn't have to look to use it. We can easily pull it off and put it on again. It's been amazing.

When Caleigh started preschool, there were questions about the keyguard. What if it breaks? What if another kid destroys it? How would we get another one? My answer: "glue it back together." Ta-Da. Fixed. I can't tell you the number of times that I have glued it back together. That's the beauty.

So the team's hesitation got me thinking about keyguards again. I used to do a quick google search all the time, but once the glue stick keyguard was in place there really wasn't much reason to look. There were rumors of P2Go designing their own, but I never found anything. Our speech therapist told me about another family that ordered an acrylic keyguard online about the time we started getting questions from the school.

So I went online, found them here and ordered one. You can order different sizes, colors and get very custom if need be. I actually talked to someone at the company because we needed a little more specific alterations with the home button cutout. We had it in our mailbox in no time.

The keyguard is made to just lay on the screen. This wouldn't work for Caleigh because she would pull it off, and when it's vertical, gravity doesn't help out. So, I used Grammie's Cricket machine to cut a nice strip of transparency and I super-glued it to the edge of the keyguard. This plastic piece slides underneath the otterbox frame and holds it down. I will say that I think the keyguard is fragile. So if you have a rough kiddo or your prone to dropping, it may not last long. For us it's no biggie, Caleigh doesn't rough up her belongs.

So far so good. It's cleaner, more see through and definitely more official looking. The true test was with Caleigh. She says she likes it and she's doing really well using it. There was no transition period. Best $20 we've spent in a long time.

The Scope

Yesterday, at 5pm, we switched Caleigh's feeds over to pedialyte. She received the clear liquid until 4am today when we turned her pump off. At 1:26am I got up with Caleigh to go potty. She's been letting me know when she needs to go in the middle of the night. Usually it's between 4-6, but since her feeds were off schedule her tummy was too. So we don't have dirty diapers in the morning. It's been about 2 weeks now. We are thrilled. At 2:23am we got up again because Caleigh was retching. We helped her get through it and then returned to bed. At 4am our alarm went off. At 4:30am we proceeded to try and give Caleigh a 250ml saline enema that her GI wanted. After 30 minutes of trying, we only got about 30ml in. Caleigh has what is known as a microcolon. Small colon. Basically because of the numerous surgeries, scar tissue, lack of blood flow, etc. her colon never grew like it should. It's teeny tiny. Which explains our enema predicament. It wasn't pretty for any of us.

We made it to the hospital a little after 6am. We actually made it through registration quickly and back in the prep area fast. Then we waited. As soon as we pulled out Caleigh's iPad and got settled in, she told us she needed to go potty. We went and sat on the potty and she went. She's been a rock star with trying out new restrooms lately. The anesthesiologist talked with us and at first he was just going to give her some laughing gas and then try for IV access. We nixed that, and asked for some versed since getting an IV on Caleigh isn't easy. Since Caleigh reacts negatively to sugars and dyes he decided to give the IV versed through her G-button. The whole time he was talking to us, Caleigh was telling me that she felt scared. A totally normal feeling. I would be scarred too. Poor girl.

It wasn't too long after the happy juice that Caleigh was smiling and giggling to herself. She was bright eyed and happy. I'm pretty sure the happy juice took away some of that scared she was feeling.

They took her back and by the time Eric and I got coffee, tea and a muffin they were done. It was about an hour. We sat down and talked to Caleigh's GI. He gave us photos of everywhere he went. The good news is that Caleigh's colitis isn't a problem right now. Her villi weren't bleeding when touched. Her esophagus looked good even with the amount of retching she does. She still has some of the surgically created narrowings that were there before. 3 actually. These narrow passes create a bit of a pool behind them causing bacteria to build-up. Nothing we can really do about it at this point. Caleigh's fundo looks good too. Biopsies were taken for bacteria and to check her enzymes. The GI thinks that bacteria is to blame for the recent issues. He thinks it is a good possibility that Caleigh picked up a virus which caused the bacteria irritation. Virus or stress is his guess. We should have the results by Friday.

Overall she did really well. The biggest problem was IV access during the beginning of the procedure. We have counted 6 attempt holes. The successful IV was placed in her foot. Eric and I went back and waited an hour, after the breathing tube was removed, for Caleigh to wake up. She was out and nothing we did was going to wake her. Her tummy was huge from all the air trapped in there. When she did wake up, she was uncomfortable, passed quite a bit of air and then had a medium bloody stool. After that she woke up well and we gave her some pedialyte. We checked out and made it home about 11:30.

She took a good 2 hour nap, followed by more potty time, and we are now hanging out on the couch watching Dora. She's tired and weak, but there are occasional smiles peeking through. Her tummy is still large, but much better than right after the procedure.

Yesterday, we got the cultures back from the urine we sent in. Caleigh has a UTI identified with E-coli. Common with lots of stool hanging out in the same area. So today she will start an antibiotic, which will undoubtedly mess up that tummy balance some more. We will follow the antibiotic with some heavy duty pro-biotics. Can't catch a break in the antibiotic department lately. She's been on something since the first of August. It stinks.

Thank you to everyone for your many thoughts and prayers. It's been a long time since we have needed them for a procedure. A year and eight months to be exact. I'm sure everyone misses all of the diaper, poop, stool and colon talk too! We are asking for continued prayers for the bleeding from the biopsy sites to stop quickly and for Caleigh's pain and trapped air to decrease. A fast fix for this UTI as well. We would love to learn something from the biopsies. Something helpful for Caleigh's journey, but sometimes no news is good news too.

We are proud of our brave girl. She did great. It looks like Eric and I will be buying another baby doll in the next few days.....

Scheduled Scope

The past week has been a period of cooling down and trying to remain calm. I feel very stretched thin. I tend to walk around forgetting what I needed to do next. Spacey. I feel very out of it. In a fog mostly. The school situation is constantly in my head and researching the possibilities is becoming more than tiresome.

Caleigh's pain eased up on Saturday and Sunday. She actually had the best day she's had in four weeks on Saturday. Everyday since Sunday the pain has been inching back up slowly. Depending on the day she is stooling more than her normal. We got back all the bloodwork and luckly they were able to run everything they needed on the small amount of blood Caleigh gave up last week. Everything that they tested for was normal. My main concerns were her vitamins and trace minerals. I'm always worried she is deficient in something due to her short bowel. Caleigh's urine did come back with elevated white counts. So this morning we did another urine sample and sent off for cultures. The elevated counts could be anything from a UTI, bladder infection, kidney infection or just a contaminated sample. We should know in about 48 hours.

Yesterday, we took Caleigh to a neuro opthamologist for an opinion on her cortical vision impairment. The appointment lasted over 3 hours and it was basically a complete waste of time. We were wanting an opinion on Caleigh's strabismus relating to her dystonia. Since her eyes are not fixed in a crossed manor, but rather move in and out of crossed. Basically another opinion on the eye surgery. This new doctor didn't want to step on our eye doctor's toes so he said that he wasn't qualified to say. I'm not even really sure what this doctor does, but he seemed nice enough. He verified that Caleigh does in fact have a cortical vision impairment. Her optical nerves and retinas look great.

After being out of school for 10 days, Caleigh's teacher finally called to check on her. We were at our eye appointment so I missed her conference period to call her back. I sent an email in reply. Nothing Fancy.

Caleigh's scope is scheduled for October 12th, next Wednesday. I've talked to our GI nurse quite a bit this past week about Caleigh's pain. The intense pain she had after starting school could be from her ulcerative colitis flaring up. Stress is a biggie when it comes to colitis, but this is just speculation until we see the results of the scope. We seem to always be guessing. At this time we are keeping Caleigh at home and keeping things calm and routine focused.

In fun Caleigh news, plane as day she told me to "hurry up" on Sunday morning because I was in the kitchen and not getting her out of her chair fast enough. This was with her mouth not her iPad. She is starting to utter a few words here and there. They are sporadic and far between, but we love them when they come out.

Caleigh loves to wash her hands when she is in her stander. She has been just out of reach until I found this little faucet extender on Pinterest. Now the water goes right to her hands. I just love it.