The Mushroom

So much has been going on these past few weeks it's hard to remember it all. I'll go down the line here...

Caleigh had her first EEG in over two years. She did really well and stayed quite content the entire thirty minutes. We got the results back and even though there are "discharges" none of them seemed to be seizure activity. So we can scratch seizures off of the possible list for sleep disruptions.

Caleigh's sleep has been somewhat better. After using her iPad in the middle of the screaming fits, we discovered that she was scared. Scared of her room, dark and depending on the night, certain stuffed animals. All typical stuff, but with her physical disabilities she can't jump out of bed and into mom and dad's bed. I took her shopping for a nightlight which she picked out. The mushroom above was the light of choice. Irony for the kiddo that doesn't eat, but it's a cute light. Since the nightlight, Caleigh has been falling asleep with no problems. Right now her pattern is to wake up about 3am needing to go potty or have her diaper changed. It's often hard for her to go back to sleep at that point. We also started waking her up at 7am no matter what the night was like. This too has helped regulate her daily nap and bedtime schedule. We are all slowly getting there.

Potty training has been big in our house again. Caleigh's only had one accident in the past two days. She's wearing big girl panties during the day if we are at home; pull-ups if not. I have to say it's exhausting though. I'm lifting her a lot more for this endeavor. We are spending a ton of time in the bathroom, but she is holding it when she needs too. I'm certain that if Caleigh was verbal she would be totally potty trained by now. It's something that she wants. She's proud when she makes it and upset when she doesn't. I'm not calling victory just yet, but things are getting better. 

We went to endocrinology to talk about Caleigh's hormones and premature adrenarche. Really we got nothing out of it. In six months we will do another bone age scan and blood work. Until then we will just watch and wait for any signs of breast buds or menstruation. Basically, the same as before.

Caleigh has been on the Nexium for a few weeks now. The difference is really amazing. I can count on one had the number of times she has thrown-up. We played around with the timing of the dose and I think we have found a good time. For the first time in years we used a laxative for Caleigh's constipation this past week. Who knew a kid with short bowel could get good ole regular constipation? We were told to give her a little over a tablespoon, but we went the cautious route and gave her a teaspoon. One hour later she was on the potty and all clear. This alone has helped her rest better and she is generally in a much better mood. We have to go and get Caleigh's six month GI labs drawn sometime this week as well. Overall though, the GI stuff seems to be holding its own.

Caleigh also had a dentist appointment last week. These aren't too dramatic. In fact, she seems to enjoy them lately. Is it odd for a kid to like the dentist? We take her every three months, instead of six, mainly because we are concerned about her grinding and enamel eroding. For Christmas we bought Caleigh the Sonicare Toothbrush for Kids. It's recommended for ages 4+. It's been amazing and just since December Caleigh's plaque build-up was barely existent. It has a timer, it plays music and it vibrates like crazy. Eric and I have been Sonicare users for years so it was a no brainer for us to get Caleigh one. I highly recommend it.

We've been so busy with appointments, home school and playing outside. As you can tell by the instagram photos, I haven't even pulled out my big camera these past few weeks. This past week we swam almost everyday, and it has truly been wonderful for Caleigh. I've also taken to crocheting. I taught myself about a month or so ago and I can't stop. Initially I was learning for my art work, but it's turned into a nice hobby. Yes, I'm about thirty years to early on this hobby, but it's helped me with my nightly teeth clinching and relaxation. It helps take my mind off of things. I crocheted Caleigh's headphone wires, numerous hot pads, and I just started my first afghan for Caleigh. Feel free to call me granny....

We went ahead and did Botox. I'm planning a post with photos, but so far the results have been positive with only a few side effects.

Caleigh's manual wheelchair was delivered a week ago. I'm planning a post devoted to just the chair as well.

Burgers 4 Babies

Thursday, May 10, 2012, Eric and I will be dining at the best spot in town for a great foundation. Thirteen world renowned chefs dishing out enough meat to make a paleo smile, will be at the event. Lucky for the veggie lovers, there will be a lot of other amazing dishes and drinks as well.


Caleigh 2 weeks and 5 days old

This outdoor chic event will be held at Tim Love's The Woodshed Smokehouse. You may remember Chef Love from Iron Chef, Top Chef and not to mention every morning show imaginable. He's a bit of a local celebrity with deep roots to prematurity. Tim's daughter's were born 4 weeks prematurely. Him and his wife know all too well the struggles of the NICU experience. Tim has dedicated himself to raising money and awareness for the difficulties families face with the premature birth of an infant.

NICU Helping Hands is an organization that develops hospital and community-based projects that provide education and support to families of premature infants. Their mission is to provide comprehensive support programs and resources to parents of premature infants in the community, not only during their stay in the neonatal intensive care unit of a local hospital, but during and after their transition home.

I've been on the board for NICU Helping Hands for about a year now. Eric and I are on the host committee for this year's event. This year I will also be photographing the event. I can't brag enough about this organization. I can only imagine the positive affects, if we had a foundation like NICU Helping Hands during our six and a half month journey. I just love the support that is given to families during such a fragile time.

So come out and join us for a night of delicious food and drink at an amazing venue. Besides, you don't want to miss the chance to catch a glimpse of Eric and I dressed up and out in public. It's a rare event, trust me.

Click the image below to find out more....

Neuro, GI and Kaye

Last week we went to our neurology spasticity clinic. At the neuro office we talked about Caleigh's legs. They are both turning in slightly, her heals don't touch the ground and her knees hyper-extend. You can see photos and the post of that here. 

We talked about all the options. Casting, Botox and surgery. Both orthopedics and neuro don't feel that casting is a good option for Caleigh. So in two weeks we will go to the Botox clinic for Caleigh to get one vial injected in two calf muscles and the muscle that runs down the inside of the leg. This will help the knees, the turning in and a little bit of the achilles issues. This will hopefully postpone surgery. Another thing to point out is that doing Botox is completely optional. We have up until the last minute to back out. So if you have any stories bring them on. The results only last for 3-6 months, and then we would have to go back in to re-inject the muscles. It's scheduled, so we'll see. 

Another thing we talked about is Caleigh's sleep or lack thereof here lately. It's pretty exhausting for all of us. She'll have one good night followed by a night of up and down every thirty minutes. Some days she will gratefully take a nap instantly upon laying her head down. Some days she will yell and refuse. The way Caleigh's guts work really requires her to have a nap everyday to make it through the afternoon. Sometimes she wakes up in pain, almost wincing. Sometimes she wakes up scared or after having a bad dream. We've tried moving bedtime, bathtime, naptime, etc. Nothing works, nothing sticks. Ever since the February growth spurt she's been all off, and the odd sleep pattern seems to be one of the last things hanging on. 

Just to be safe we requested an EEG. Caleigh has been off of seizure meds since the summer of 2009. That's huge, but the chance for them to return is always there. I really don't think that this is seizures, but you never know. 

We also backed down on the Artane last week to see if she really needed it, and two, to see if it was causing the sleep issues. We learned that, yes, indeed she needs that medicine to work through her dystonia, and no, it wasn't causing any sleep changes. She is back up on her full dose again. So as far as neuro goes we will see how the EEG looks, but the sleep issues don't look to be medicine induced. 

We went to GI two days after seeing neurology. We questioned the fact that she vomits her medicine two out of three times a day and sometimes it seems that she is having reflux symptoms. She has even mentioned her chest hurting. Caleigh has been off of reflux meds for a couple of years now. She wasn't symptomatic, her scope showed no damage, and reflux medications have been known to actually cause intestinal bacteria; something she doesn't need any help with. 

After an in office stool test, there was quite a bit of blood showing up. So we decided to start with Nexium and work from there. Luckily, Nexium has dextrose as it's sugar base, which she can handle. There is probably a lot of upper esophageal bleeding going on. So that might be where the blood is coming from. Also, Caleigh's g-button is extremely sore. The outside is ok, and looks good. The pain is coming from the inside. Probably from acid issues, but we wouldn't be able to tell without a scope. I think this may be why some of her waking up seems to be in pain. The first night on Nexium was extremely promising with a full night of sleep and a nap the next day. She acted like she felt better, but each day since has proved to be not so lucky. Although the vomiting is much better, we don't have any answers yet. Another scope may be in her future.

The new chair that Caleigh is sitting in is called a Kaye bench. We actually had the bench, but the seat positioner and the desk were bought for Caleigh through DARS. So far she is sitting in it wonderfully. If the desk top wasn't in place she wouldn't be able to use the bench in this way though. It's another tool in our arsenal of positioning devices to keep things in line. The desktop is usable with all of her other equipment as well; it's extremely adjustable. As you can see in the above photo, Caleigh can stand up and then sit back down in it. Total supervision here, but up and down on her own nonetheless. I'm excited about the homeschooling and play possibilities with this setup.

Safety First

Weather Safety: This past week our area was turned upside down by tornadoes. If you haven't seen this video; you should check it out. Fortunately, no one lost their life.

Living in North Texas has it's perks. Winter generally isn't too bad. Springtime is beautiful and usually arrives before most of our northern neighbors. With the green grass comes terrible allergies and sometimes scary storms. The days all start out the same, warm and muggy with a chance of rain. By the afternoon, the sirens are going off in our neighborhood and we are huddled in our safe spot.

This past week took me by surprise. I'm usually a planner. With the way our monthly supplies are regulated, I had been pulling from our emergency bag all winter long. A feeding bag here, a syringe there. It added up. Since Caleigh hasn't been admitted to the hospital in over two years (round of applause please) we no longer have a hospital bag. Our to go bag turned into our emergency bag. An empty one at that.

It's so important to go through your day and decide what you use with your child, disability or not. Change of clothes, medical supplies, diapers and wipes, medication list, doctor list with contact information, and important documents. It's different for everyone. Strapping a backpack on while your huddled in the bathroom could be a smart move.

I'm ready now, even if it took tornadoes too close to home to remind me that the season is upon us. We were actually supposed to be in the car on the way to OT, straight in the tornadoe's path, at the time. Caleigh, Eric and I spent a long time in our laundry room and quite awhile picking up branches and random attic insulation that had blown into our yard, but we are ok and prepared for the next time around.

Pool Safety: I even hesitated writing about this, but I feel a responsibility to do so. Caleigh has been using the neck float, seen in these photographs, since she began swimming. It's been several years and we have been through three sizes in that time. The float has given her major independence with swimming, and I really believe that is one of the reasons she loves to swim so much.

This past weekend Caleigh had a few friends over to go swimming. You know that infamous line "it only takes two seconds?" Well, it did.

We are always in arms reach while swimming. Eric was on Caleigh duty. All of the adults in the pool turned to look at a shrub that wasn't doing so well, and the next thing I knew Eric was pulling Caleigh out of the water. He said that when he looked back down Caleigh was at least a foot under the water. I handed off the adorable baby I was holding and we headed out of the water.

By the Grace of God, Caleigh somehow held her breath when she went under. She didn't even cough. She was scared. We were terrified, but thankfully she was fine.

So what happened? The neck float broke. There is an area that the clips attach to. The clip separated from the float itself and that gave Caleigh's head enough room to slip out of the back. It took two seconds and she was under the water.

 
 I have mentioned the float on this blog several times and referred countless parents to the Waterway Babies website. The owner is wonderful and extremely helpful. These floats can be found all over the disability community. Accidents happen though. My goal here is to not talk badly about Waterway Babies neck floats, but to make parents aware of the possibilities. To learn from our mistakes. I, myself, am guilty of putting too much trust in this cheap piece of plastic. Never again.