Good Things

There has been a ton of stuff going on lately. So I thought I would make a list and try to compile my thoughts.

• We had an allergist appointment this week. It went from bad to terrible really quick. We waited an hour and a half to be seen. While waiting we overheard the nurse outside canceling the rest of the day's appointments. Never a good sign. Then the nurse practitioner walks in and has a scared look on her face. She says she doesn't "do" pediatrics. Mind you this isn't a pedi office, but there isn't one, or we would be there. So we are there to find out if there is an allergy medicine, without, lactose that Caleigh can take when her nasal spray isn't doing the trick alone. The women tells us that our pharmacist can figure that out for us..... Really? There isn't a super doctor database that can tell you? No, I have to go to the non-doctor to get medicine for my child. So then she asked us "how do you know she is having allergies?" I tell her teeth grinding, not sleeping well,drainage followed by trouble swallowing because of the drainage, constant sneezing.
  

No kidding, the women looks at me and says:
"Does she have cerebral palsy?"
I said yes.
{in hindsight I should have said no}
Then she precedes to explain, to the parents of a child that has had CP her entire life, that "children with cerebral palsy have more drainage and have trouble swallowing."

Eric and I just stared at her.
Did that just happen?
The room was silent as we gave her the death stare.
I was too dumbfounded to even respond. The whole statement really caught me off guard. I then said, "I guess I'll just have to call my pharmacist then."

We packed up our things and checked out. She wanted us to come back in 3 months. Nope, that won't be happening. Why? Because her bedside manor stunk, she treated Eric and I like we were stupid and didn't know our daughter, and she has NO CLUE what is in the medication she is handing out on a daily basis. The real kicker was that Caleigh sat there telling the woman "Hi" and everything else she could say to try and get her attention, and the lady didn't respond once.

So tomorrow I will call our pharmacist. Hopefully he will be able to give us some insight, and shockingly enough, we don't have to pay him for it.


{pretty much the look we gave the nurse practitioner}

{On to happier news}

• Our long time, wonderful PT nominated us for her therapy company's charity. The charity just so happens to be giving a van lift. We are just in the running at this point. Last week a rep from a local mobility company came out and we narrowed down what our needs are. He'll report back to the charity and then we will find out if we are accepted. We didn't really go with the standard ramp type situation. So it will be interesting to see what they think. We will be required to pay 10% of the total cost which is actually a bargain. No complaining here. So we'll see what happens and hopefully we will know something before our road trip in July.

• Caleigh was approved for a Make-A-Wish earlier this month. Last week the volunteers came out to hear her wish. We signed lots of release forms and it was pretty uneventful. Caleigh did a great job telling the volunteers what her wish is using her iPad. We have been talking to her about wishes since we started the process. She's really excited about the whole thing. Now we just wait for the next step. I'll leave her wish a surprise for now.

• Here's a tiny video cut down from 10 minutes of Q&A. Caleigh has been doing mind boggling things with math. Addition. Subtraction. Extremely quick responses. I didn't teach her this. I have no clue how she knows 15 minus 4. Her dystonia movements make it a little difficult, but she is really quite amazing at it. Eric and I are really proud of our girl.
  

• Since the discovery of Caleigh's new mathematic skills our preschool curriculum seems a little "young." Throughout the day we work on kindergarten sight words and math problems and basically learn about life. She knows how to piece words together and can tell you what letter a word starts with. We go new places and talk about them. She has a longer than average attention span. I really need to get back on track but it's been two months off now. I keep having flash backs to several books and movies I've been exposed to over the past 3 years. The scene of someone holding up the flashcard of the letter A and saying A is for apple. All the while the child, with a disability, is brilliant and rolling their eyes, dying inside. February was crazy due to our intensive therapy and this month has no excuse attached. I'm not sure where we fit anymore. So my goal in the next few weeks is to go and talk to private preschools about Caleigh attending in the fall. Of course, she will need an aide to go with her, but I really think at this point she is ready. More importantly, I am ready for her to be ready. She needs that interaction that she can't get staring at me, even if it is only two days a week. I have a plan to tour schools without offering up information and then deciding on a the one that will work. Then we will make an appointment to discuss matters. I've had this plan on my to-do list since February. It's big girl time.

• As I type there is paint drying in our laundry room. This is the room we walk through everyday to get to our garage and it also holds our pantry. It's dingy and probably has original paint. Not to mention the holes that Caleigh's equipment has so nicely blessed the space with. I've got big plans for this room, but really the paint will make all the difference.

• Caleigh has been doing really well with her power chair lately. Her time in the chair is getting to be longer and the other day she asked me to drive the chair twice in one afternoon. I'm considering this progress. If she is happy enough driving that she wants to continue to drive than that is inches in the right direction. I made some adjustments to the tray and she seems to be holding her head up better for longer. We are excited about that as well.
  

• After a lot of back and forth with insurance companies, we finally got approved for Caleigh's Pedialyte to be paid for and delivered to our house. We use 35+ liters of Pedialyte a month. Remember, Caleigh doesn't get H2O. We mix her formula, medicine and give extra fluid throughout the day with Pedialyte. We have been spending about $150 a month on the clear gold. Now we don't have to run out at the last minute and buy as many bottles as our local CVS, Walmart and Walgreens has. We would make 2-5 trips to the store each month because the stores just don't stock 35 bottles at a time. Especially the unflavored. So we are beyond thrilled that our home health will be delivering to us. One less thing to deal with one less thing to buy.
  

I think that is about all the big update stuff for now!

Adaptive Bathroom Remodel - Part 2

And here's the adaptive bathroom after!
If you missed the before photos you can click HERE.

The morning light through our new window makes all the difference in the world. It's really just beautiful.

Caleigh's roll in shower has a ramp up into the shower area. The drain is slanted towards the middle so that the water doesn't run down the ramp. There are a few splashes that escape but so far so good. We use a squeege after each shower to try and cut down on the water just sitting on the tile.

From the moment I Googled "wall mount sinks," and saw the LaToscana wall mounted ceramic sink; I knew it was the one. It's stylish and most of all it doesn't look like a gas station ADA bathroom sink. It's completely accessible as far as roll under space. We measured Caleigh's wheelchairs and decided what height to hang it based on her needs. The cool thing is that the lip of the sink comes out further than the base which means she can get even closer to the faucet when needed.

For paint colors we went with blue hues. It's a bathroom, why not? We wanted something that wasn't too dark, but at the same time we needed color because of all the white tile. We decided on Sherwin Williams Refuge for the walls and Sleepy Blue for the ceiling. The two colors are on the same paint strip. We picked the sleepy blue for the ceiling, again, because of the amount of white tile in the space. I'm so glad we did. It really makes you notice the ceiling.

Same thing as the sink, the tile choices I had picked out long before the project started. We chose Octagon and Dot ceramic tile for the floor. It reminds me of the old hexagon porcelain tile from the early 20th century. This tile makes my retro heart swoon.

The "wainscoting type" of wall covering is done with 3x5 subway tile from Daltile. It's a tile pairing that is often done in Victorian houses. The cleanliness of the duo is what drew me in.

The floor rug is from Urban Outfitters. It gorgeous and fluffy. Unfortunately, we will probably have to use it in another room. It's made from silk scarfs. Silk and water don't mix. I was so excited about the look and dimensions that I missed the silk part when ordering. I got click happy. So I'm brain storming on another idea for this space.



We already had a nice Kohler faucet that the previous owners had recently installed. We were all set to use it until the sinks came in and needed a single hole mount. The Kohler faucet was three holes. In a bit of a hurry we found this Moen Brantford Chrome one handle faucet. I like it and the single handle is really easy to move. The faucet goes with the sink style really well.

In the process of adapting the bathroom, it was decided that our toilet was new. It is a Kohler and it is an updated taller version that is often used in accessible restrooms. We have a rifton toilet chair, but Caleigh's tush is still too small to use it. I went out and bought a Baby Bjorn Toilet Trainer. The toilet seat is so easy to use and fits on any toilet size. We take it everywhere with us. We use a stool from Ikea that is the perfect height for Caleigh's feet to rest on. She's been using the potty with this system amazingly. Probably halfish of her "go" times are on the potty now depending on our schedule. Lately, all of her stools have been on the potty!

When deciding on bath accessories I was really stumped. I looked at bamboo and other natural elements, but I wasn't convinced. Eric and I made a trip to a local antique store where I found Moon and Star Glass. It's age is anywhere from the 1880's (doubtful) - 1970's (probable). We bought a few pieces at the store, and then I came home and found more on ebay alot cheaper. I'm in love with the pattern and the amber color. Again, the morning light is just magical, don't you think?

When we decided to do full tile walls, we immediately found out that the sound in the room was completely too loud. Think canyon type echos. I came up with the idea of Fabric Wall Panels and I couldn't be happier with the look. It's fun & playful. I still have 4 more sets left over from my project. They are $65 for the 6 panels and there is free shipping in the US. Check out more photos HERE.

We used our original mirror, but we had it cut down to a more usable size. We swapped out the fluorescent lighting, added two can lights and a 3 light fixture above the sink. We also added an exhaust fan to the bathroom mainly because our new window is solid and not able to open.

Lastly, while at the antique store, we picked up these Glass Electrical Insulators. I thought the blues would work really well in the room. The sun bounces through these like sun through a warm car window. I remember a childhood friend's house having the insulators everywhere. Childhood memories always tie a room together. Something personal.

So there you have it. I hope you enjoy the bathroom remodel. I know we are. Caleigh thinks it's fun to take a shower, and my backache is thinking showers are way more exciting!

Adaptive Bathroom Remodel - Part 1

Caleigh's bathroom remodel is officially complete. As a matter of fact, we broke in the new roll-in shower area last night. I've been asking Caleigh for over a week, every night before bed, if she wanted to try the new shower and she would promptly turn me down. A few days ago, I added the word "sure" to the iPad and it is officially her favorite new response. Is your shirt pink? "Sure" Do you love to swim? "Sure" So we asked and she said "Sure." Come to find out she was scared of the whole shower experience. So after the deed was done she told us "i like it." Success.

The bathroom project lasted from December 22, 2010 to March 1, 2011. 69 days. 2 months and 7 days. Initially, we were told 2-3 weeks, but we were privy to construction habits and reputation. The whole situation was an absolute mess that I won't hash out here. A tiny example would be the number of times the painters came out {7}. I can say with confidence that Eric and I are now DIY homeowners. Period. The End.

Ok, now on to the good stuff. You know you want to see before photos, right?

Our house was built in 1976. The hall bathroom was set up as a Jack and Jill style. Two bedrooms fed into the tub and toilet area. The hallway door went into the sink room. This was the craziest set up. We had already removed the door between the sink and toilet/tub room. Four doors and one tiny room. Seriously, when doing your business you had to watch 3 doors and hope that no one came bursting in. It was a bit too much for guests to handle.

When bathing Caleigh I had to dodge the door that led to her bedroom. The typical flourescent lighting made the already small room seem even more closed in.

There was a massive linen closet with a hamperish thing at the bottom. It was useless.

Check out the towel roll on the floor. That was my knee cushion during many a bath. There was a classic granny handrail on the tub wall and a yucky single pane frosted window.

The closed cabinets underneath the cultured marble, shell molded, sink were totally inaccessible for Caleigh. This doorway was even smaller than the standard 32" which means the tiny walkway in was as well. We didn't even think about taking the wheelchair in there.

Here we are after the demo day. Even though the room is a wreck; it already looks better. Bigger.

I don't know how many times we dusted during the whole process. Remodeling is not for the allergic at heart.

Awesome wallpaper. The previous owner left us a whole roll of this stuff. You know, just in case we wanted to use it in another part of the house. Uh, no.

View from Caleigh's room. The left door is her closet and the right door leads to the tub room. Imagine the massive linen closet squeezed between.

By reducing Caleigh's closet depth and removing the linen closet we widened the entrance to the bathroom tremendously.

Here's a photo with the drywall up and the shower frame in. The entrance doorway is now 3 feet across. Mr. Jack and Misses Jill are long gone. Probably down a hill somewhere.

Of course, I couldn't fit the final product photos into this post so you will have to check in later for the Big Adaptive Bathroom Reveal.

Weekend Trip

Saturday morning we loaded up, loaded up and loaded up the van as full as we could and headed to Oklahoma with The Briggs crew.

Jocalyn summed up the trip so I won't bore you with the same post. You can read all about our weekend away and see more pics of the girls HERE

Caleigh did wonderful and kept telling me "more" when I asked her if she liked her trip away from home. She loved it. We are so very blessed to have found such wonderful friends that are very much like us. We all had a great time.

By the way this is the first trip away as a family from our little comfort zone. We have a 2 week road trip planned in July and I think this was the perfect practice adventure. Although I'm not sure how much more we can fit in our van!

Here's a photo of Caleigh on St. P day. Every morning when I ask her what she wants to do she tells me:

"I need to go potty"
"I need to get dressed"
"I need to brush my teeth"
"I need to comb my hair"
"I need to put my socks and shoes on"

So this photo was after we did all of that. I think she is tired of staying in her pj's all day.

Spring Break For Us

This past week was our Spring Break in a round about way. Eric ended up getting the flu last weekend and was down for the count for about 4 days. Caleigh and I got our flu shots way back in September, but Eric was going to get his for free at work. He missed shot day and never ended up getting one. So he got the flu, type A.

He made it through, but just to be safe we canceled all of Caleigh's therapies. We didn't want to be spreading it around. By mid-week he was better and went back to work. I had already canceled everything so we went to Ikea for an entire afternoon. Caleigh did wonderfully in her chair. She didn't fuss once. We picked up some stuff for the bathroom and met an adorable little girl with a ton of energy and a trach all in the same trip.

The next day, again no therapy, we had our GI appointment. Caleigh talked on her iPad the entire time. It went a little something like this:
"I missed you"
"Hi"
"Goodmorning"
"My name is Caleigh"
"I feel sleepy"
"Bye"
"I want to go to sleep"
"I want to go home"
"I want to go in the car"
"Bye"
"Bye"
It was really cute. She's getting quick with her choices and if she doesn't get want she wants she finds a way to say it differently. Like maybe she isn't getting her point across the first way? We are so blessed that she can communicate this way.

As far as GI stuff goes, it was decided that Caleigh had an event, a bleed. She still has blood in her stool two weeks later. She may not be producing the enzymes that break down sugars. This could explain the bleeding event after having lactose. Lactose is the sugar, whey & casein are the proteins found in dairy products. This may explain the intolerance of suspension medicine as well. The binders are usually sugar or sugar substitute based. The only way to find out if the enzymes are there and doing their job is a scope & biopsy. We decided to wait until the bleeding has stopped and she has been on the ulcer med for 3 months. The doctor ordered some blood work and a stool sample. Our next appointment is 3 months down the road.

That afternoon, we decided to take Caleigh to the zoo. Eric hadn't been in awhile and the weather was perfect. There was hardly anyone there and Caleigh was super alert. Turns out that it was the best zoo trip we have had so far.

Now that the weather is warmer, they had the bird feeding area open. There are a lot of parakeets and such in an open, but netted area. You buy some seeds on a stick for $1 and the birds come to you. You also pray that you walk out without any bird souvenirs. This was Caleigh's first reaction:

It got better from there. She was trying to "pet" the birds, grab the birds and in general she really loved it. Every time we bring up the bird experience she smiles now.

The next day we went in for the blood work and brought Caleigh's stool sample. It's taken us probably half a dozen trips to the same lab at the children's hospital to find someone that can get access on the first try, but we have found her. Caleigh has a crooked vein that she gets first try every time. Caleigh also doesn't cry anymore. We talk her through it starting in the car on the way there. She's getting to be such a big girl. So brave.

Yesterday afternoon, Eric, Grampa and I got away for a little bit and went to the home and garden show at Cowboys Stadium. It was nice, but I was hoping for a more HGTV kinda feel. Lots of venders trying to sell the next best thing. We had a good time though.

That's it. A great week. A nice break from all the normal stuff. It makes it hard to go back to therapies after a week like that. A break is definitely what we needed though. It has helped my funk and my spirit. I feel refreshed and ready to get back to things.

Hope everyone has a great weekend!
You can view more zoo photos HERE

Life is Sweet - Powerchair Practice

Life is Sweet - Rabbit

This video is long overdue. I guess I have been waiting to catch the perfect powerchair driving skills and the truth is that we just aren't there yet.

Switching between the joystick and the proximity switches slowed things down. This last round of intensive therapy has helped Caleigh learn to push her arms away from her body more. This makes it easier to push the switches and hold them down.

I have a feeling she is pushing the switch, the chair moves, she lets go, looks up, pushes the switch, the chair moves, she lets go, looks up....see the pattern here. I think it's difficult to keep her head up looking and concentrate on pushing the switches at the same time.

Winter has been hard on practice time. Caleigh gets extremely frustrated trying to drive in the house. She has a much better temperament outdoors. On a good day, Caleigh will stay in the chair for maybe 30 minutes before wanting out. I would be lying at this point if I said we have been practicing everyday. I need to work on it because I think the more we practice the more time she will want to spend in the chair. I'm going to look into practicing at a local gym so that we can continue driving in a wide open space even when it starts getting too hot outside.

In the video, taken today, Caleigh is wearing the cervical collar. It seemed to work out. Some days she can do without.

Caleigh understands directions. Left, Right, Forward, Backward, Stop, Go. She does well with them if there isn't an urgent need to make the move immediately. For instance, Caleigh ran straight into the shrubs today. We kept saying stop, but she just couldn't get her arm up off the switch in time. After we reversed her out of the bushes she actually thought it was quite funny. I need to let her run into more things. Safely of course.

The good news is that even though she gets frustrated with the chair; she still asks to drive it almost everyday. I think this shows determination with independent movement. She is trying and that is all that matters right now.

Fabric Panels

During the process of decorating Caleigh's new adaptive bathroom we noticed that a lot of tile = a lot of noise. So I decided to make fabric panels to help absorb some of that echo. I wanted them to coordinate and be bright and cheerful.

I used some of my canvas stretching experience to pick out frames. In no time at all they were up on the wall and looking fabulous. I love them!

I purchased enough fabric and frames to make 5 more sets as part of Caleigh's intensive physical therapy fundraiser. Our next session is only 2 weeks away.

Check out more photos and details HERE

There you go...a tiny sneak peak of Caleigh's bathroom. We are picking up the mirror today and the rug is in the mail. It's almost done!

Head Up Please

For the past week we have been trying to get Caleigh's bloody stool under control. I think we've nipped it. Now we give the ulcer medicine for the next 3 months to aide healing her intestines and we wait and see.

Our pediatrician is trying to find an allergy medicine that is in tablet form and does not contain lactose as a filler. They are have a hard time finding such a thing. Apparently, lactose is a very common filler for medicines. Caleigh doesn't handle the sugary children's liquids. She's been off of liquid medicines for a long time now. We may be headed back to the allergist to ask about other options.

The sulfazalazine is in a compounded liquid form. Since starting it on Friday, Caleigh has been retching quite violently and more than usual. Our pharmacist will be ordering the powder form and making capsules that we will be able to open and mix with pedialtye. We do the same with her multi-vitamin already. Even in compounded suspension form there are fillers that the pharmacist must use. So we are hoping that the straight powder will be less irritating to Caleigh's tummy.

Ever since we woke up last week to blood, I've been in a total funk. It's nothing new really. Throughout Caleigh's entire life I've had ups and downs and I think that is normal. Every time there is a hiccup in our path the adrenaline flows and then things calm down. Reality hits, thoughts race and I'm right back to square one.

I've written some on paper this past week. Thoughts, phrases and fragments of speech. I feel like I'm in a weird place. I answer phone calls, go out with friends, achieve daily tasks with no problems all the while my mind is racing with thoughts and feelings. While these things are running through my mind I want to do nothing but write them down, tell someone. With life to live and Caleigh to tend to, I don't get them out and so the thought cycle continues.

I'm not sure what it is that has hit me so hard this time around. The cycle towards acceptance I suppose. Everyday has something a little off. Today was Caleigh's head control. No matter how we talk about it she has a hard time keeping her head up. She tells me that it is hard for her but that she tries her best. When it's upright, it is tilted to the left. She has momentary mid-line success, but with the constant movement of the dystonia it's very difficult for her to maintain the position.

Today it just got to me. I felt angry about it. I feel terrible because she tries so hard. She can't help it. Caleigh can do SO many things that she never should have been able to do. I don't know why I dwell on specifics. I'm guessing here, but I probably say "hold your head up straight" 50+ times a day. More on days with a lot of therapy. Sitting, standing, in both wheelchairs. We try using the cervical collar, but Caleigh just hangs her head on it choking herself. At least she is free to move around without it. I need to let it go, but there is something in me that wants to fix this one thing for her. If she could hold her head up straight she wouldn't be mistaken for sleeping all the time. If she could hold her head up straight her muscles wouldn't be strained in her neck. If she could hold her head up straight equipment and chairs would be easier. The "if's" are numerous. Why do I want to fix it so badly? Why can't I just accept it?

So I guess I will write my way through this. Who knows how long it will take. I will try to step back for the day to day and be grateful for what we have. We have a brilliant, beautiful little girl who amazes the masses. I need to follow suit.