Caleigh's Corner

Specs & Shades

2012-02-16T20:35:00.003-06:00

Last week we had an appointment with a different eye doctor. This was a second opinion for strabismus eye surgery, prescription check, and another opinion on Caleigh's eye infection that she had in December. We took her to this particular doctor about 2 years ago for the same reason; a second opinion. Out of convienance we stayed with our original doctor, but the last 3-4 times we've gone in, the mood of the room has been very negative. Because we did not meet eye to eye on Caleigh having strabismus surgery; we were looked at as careless parents. So a change of pace was definitely needed.

The new(ish) eye doctor confirmed our concerns about surgery. He feels that Caleigh's eyes are crossed at times due to her dystonia and nothing more. We are happy with this confirmation. So from now on we will just watch it to make sure there aren't any changes. As far as the eye infection goes, we will have to wait and see if there is a next time and then take her in then. Hopefully there won't be a next time. He dilated her eyes, and Caleigh was very cooperative; something she wasn't at the previous office. This new doctor has amazing patience. The prescription changed only slightly with her astigmatism. We are scheduled back in a year unless we need something. The plan is to stick with this doctor from here on out. Even if it isn't the most convient plan, it's what is best for Caleigh.

So new glasses were ordered and they came in today. We decided to go with the frame-less Silhouette glasses. Caleigh's favorite color is still green so that was the color she picked. They aren't the classic, purple, thick frames, but comfort and the ability to grow into them a little bit more was the objective. We've got to play around with the adjustments some more, but already Caleigh's ears seem to be more comfortable. Same Caleigh, different glasses, but it will take some definite getting used to.

We also ordered new prescription sunglasses at the same time. Caleigh loves these. They are big and fabulous with room to grow. Little Hollywood. We ended up getting the lenses polarized for the soon to be long days by the pool.

Ortho, Hockey, Eco2 & Elle

2012-02-02T12:55:00.005-06:00

Caleigh just finished an almost month long trial with the Eco2 by Prentke Romich. She did really well with it. We tried the Eyegaze technology for a day or two but the device could never pick up her gaze. We then received a 45 square key-guard for it, and Caleigh really seemed to take off. So we stuck with the direct selection method.

Trial after trial of device after device, and we have now decided to purchase the Eco2 for Caleigh. The language system has the most potential for her future. With the proper mount and positioning she is the most independent with this device. It will not take the place of Caleigh's iPad to begin with, but after time and practice it could very well do just that. I definitely think that these big dedicated devices are for older children and adults that are generally in their chairs for longer time periods. It just makes more sense. Until Caleigh is in a chair and communicating for longer stretches, the iPad is definitely more logical for us.

Here's a quick video of Caleigh using the device. Here we have her selection at 45 squares one hit. She does tell me "please" after I turn off the camera.

I added this photo mainly to show Caleigh's hair in a bun on the top of her head. She likes to match her mommy and asks for a pony tail a lot when we are hanging out at home. It's getting pretty long. When her hair is wet and brushed out straight, it will touch her shoulders, but it quickly curls right up.

Last weekend, Caleigh got to stay up past her bedtime to go to her first hockey game. It was a Guns & Hoses benefit game. The firefighters won the game, which hasn't happened in several years. Caleigh must have been good luck. She loved the game and was all smiles while her Daddy was explaining it to her.

Yesterday morning, Baby Elle underwent her very own gastrostomy tube procedure in our garage. I had to change Caleigh's button out the other night because the ring that the tube locks into came out. It happens pretty often, but most of the time the button is too far gone to save. This time I could piece it back together. So I asked Caleigh if any of her babies needed a button like hers. She immediately told me "yes" and then said "Baby Elle." It was a pretty cute scenario in our house. Eric asked Caleigh all the surgery questions like.. holding the button, "Is this what we are placing in Baby Elle today?" yes. "Where does it need to go" Caleigh grabs her belly. "She is going to be in good hands Mommy Caleigh." Caleigh kisses her goodbye. Baby Elle made it through surgery just fine. Caleigh's been playing with her non-stop since and we've "fed" her many times. She wants all her babies to now have buttons. I had to explain that we couldn't just get buttons for the babies; that they were for Caleigh. She wasn't too pleased with that excuse. Until the next one gets replaced.....

Now on to Orthopedics. About two weeks ago Caleigh was irritable, not sleeping well and generally whinny. I finally figured out that she was having growing pains about two days into the ordeal by pulling up the body parts folder on the iPad. She told us legs and ankles hurt. I massaged, stretched and massaged her some more. By the time she was done with her little spurt she was skinnier, a tad taller and her right foot looked like this.

On Wednesday, Caleigh had her 6 month follow-up with Orthopedics. They took x-rays and everything with Caleigh's hips looked exactly the same. No change there. That's the good news. They looked at the muscle tone and watched her take steps in the office. After sizing everything up, they think her quads are probably tight, and of course, her achilles tendon in her ankle.

The achilles is causing the knee hyper-extension and the tight quad is probably causing the right leg to turn in. Fun Fun Muscle Stuff. The above photos show what the two main positions of Caleigh's legs are without her AFOs. The recommendation is a cautious botox treatment. Cautious because Caleigh's dystonia causes brief spastic muscle tightness, and not continuous contractions. She uses the tone that comes with her dystonia to do what she is able to do. This includes standing up after using the potty, practicing standing transfers, using her walker and driving her powerchair. She uses what the Lord gave her. So paralyzing those muscles is a tricky decision for us, but something we need to consider. There's always something to think about next.

Gratitude

2012-01-30T20:54:00.006-06:00

How do you say thank you for a life changing gift? How do you convey the emotions related to a gift that will bring your child joy for the rest of her years? Gratitude.

This past Wednesday, most of the individuals involved in creating Caleigh's pool came to our house to see the final product and to meet Caleigh. It was a cold and dreary day; the rain had stopped just long enough for the get together to happen. We gathered by the pool and the story of how Caleigh's pool came to be was told. The pool was blessed and then everyone huddled in for a photo.

Everybody was in and out fairly quickly. When everyone had gone and the house was once again quiet; we felt as though it just wasn't enough. Nothing we can say or do will ever be a big enough thank you. The Claffey family and their partners are amazing, humble and truly wonderful people. To see a little girl that wants nothing more than to swim; to take that wish and make it easily come true is just phenomenal to our family. Even though the pool is in and done, we still peek out into our backyard in total disbelief. It still doesn't seem real sometimes.

Over the nine weeks that the project took to complete; we were excited about each and every step. We absolutely enjoyed each area of the construction process. The anticipation for Caleigh was huge. It still is, and I guarantee that she will be excited each time she is able to swim. Our lives will never be the same again. Forever changed for the better. Forever joyful.

Once again a HUGE Thank You to the loving Claffey Pools Family and these wonderful partners that donated their services to Caleigh's pool.

Charlie Claffey
Brian Claffey
Shelley Claffey-Broder
Paul and Barbara Claffey
Mac's Excavating
Maddox Steel & Plumbing
Prestige Gunite
Gustavo Martin Tile & Coping
Alliance Materials
Avery Irrigation
Kel-Tex
Southwestern Plumbing
Pebble Technology
Zodiac Pool Systems
A & B Plaster
Mackie Electric
Kids Matter International

A special thanks, as well, to Caleigh's Mimi, Pop, Grammie and Grampa for all that you do to help with Caleigh and did do with the pool preparations. We couldn't do this without you.

Everything we do should be a result of our gratitude for what God has done for us. -Lauryn Hill

Caleigh's Pool - Week Nine - Completion

2012-01-22T20:47:00.004-06:00

Day 29 - Manual vacuum, Rocks sealed and Clarity added 1-16-12
The manual vacuuming wasn't getting all of the fine plaster particles so a product called Clarity was added to the water and the filtration system was turned back on. The rocks were also treated on this day. We will have to seal the natural rocks at least once a year to protect them from the saltwater.

Day 30 - Chemistry Checked 1-17-12

Day 31- Deck wash, salt added and saltwater pump started 1-18-12
Something isn't working right on the saltwater pump. We are waiting on a repair at this time.

Day 32- Fill line and irrigation adjusted, Heater repaired and started, Saltwater training, Signed off 1-19-12
They had to put a new transformer on the heater. We are thinking there was a power surge at some point that caused the heater and saltwater pump some issues. When they were done, we started the heater in hopes of swimming the next day. The temperature was going to be about 75 degrees so we set the heater at 85 degrees.

That night we dipped our toes and talked about swimming the next day. Caleigh was kicking and squealing. She was so excited.

Day 33- Grass laid, Lift plumbing re-routed, Backyard prep and 1st Dip 1-20-12
Eric re-routed the plumbing line that will go to Caleigh's pool lift when it is installed. The lift will by hydro-powered, so some fresh water plumbing was involved to get it set up. We are looking at probably getting the lift installed this summer.

The landscaping company came back and laid more grass to areas around the pumps and by the new fence.

By the time all of that was done, it was almost 5 o'clock in the afternoon. The pool water was 85 degrees and you could hear the gas meter hissing from the street. I would say this was Caleigh's first dip, not so much swim. We only lasted maybe 30 minutes.

The water was chilly in spots and we learned a good lesson about heating the pool. Turn off the waterfalls, so that the warm water is flowing directly into the body of the pool and not losing it's momentum in the air.

It wasn't ooh la la comfortable, but had we swam a few hours earlier when the sun was higher, I think it would have been perfect. Caleigh was no doubt excited to finally get in, although she agreed it wasn't summertime splashing fun.

There is a lot of fine tuning that we need to figure out as far as the heating system goes. We've heard a lot of "comfortable" temperatures to set it at, i.e. 85. We've also heard a lot of times to heat the pool for, i.e. 10-12 hours. I think we will just have to test it out, see and hope that we don't rack up a huge electric and gas bill at the same time. The pool heater is mostly to extend our swimming season. So for Texas this most likely means March - early December.

Our next dip in the pool isn't in the foreseeable future, or at least the 10 day forecast. We've decided that it needs to be at least 75 degrees outside, preferably 80 before Caleigh's muscles will be comfortable enough in the water. The wind has a lot to do with how comfortable the experience is as well. We've downloaded a weather app on the iPad so that Caleigh can track the possible next swim.

It was 75 degrees yesterday, but the winds were kicking in around 20-30 mph. It would have been miserable. So instead of swimming we hung out on the deck and I painted Caleigh's toe nails in the warm air while Eric worked on the never ending landscaping tasks.

That's it. The construction is complete. Caleigh's been in the pool. It's done. Never in a million years could we express just how special this pool is for Caleigh. We have a get together planned for everyone involved with Caleigh's Pool this coming week. Somehow we will try to show our immense gratitude for this amazing gift.

Edit: Because I always get a ton of comments and emails, this is the neck float that we use for Caleigh. We use the large size. Waterway Babies

Teaching Her

2012-01-18T13:20:00.006-06:00

I've been Caleigh's official teacher for almost two weeks now. I almost feel like this is the beginning, but really I've been teaching her for years now. The only difference is a more intense curriculum, record keeping and an official title for me.
Homeschool mom.

Let me talk about that title. It scared me to death. Mainly because I feel like I do not fit into this category. I wasn't one to grow up wanting to be my child's teacher. I didn't know the moment I got pregnant that homeschooling was for me. The only plan that I had was to stay home with my child until she/he started school. As in, out the door at a school...learning.

From my reading and research there are three different kinds of homeschool parents (my opinion here.) The ones that always knew they would teach their children even before their birth. The ones that started teaching their toddler, loved it and continued on. And the ones that had their child in a school system, didn't like the situation, for one reason or another, and decided to withdraw their child. Disabled child or not, that is what I have found.

With our case we fall in-between. Maybe that is the disability route? We kept Caleigh at home with a central line during her first year of would be starting PPCD. Her health was our concern. I started a day by day casual pre-k unit program. Then we were full steam ahead when she turned 4. She was central line free and at a point that we felt she could handle the exposures. We yo-yo'd if you will. We attended meeting after meeting. We attended preschool with Caleigh for over two weeks. Health concerns and teaching concerns just didn't fit. It wasn't right for our daughter. So here I am, homeschool mom.

Basically, I fought what I knew was right all along. I fought, what is still to this day socially "different." Maybe I wanted to fit in with the normal path that parents take. Maybe I was concerned that the professionals that work with Caleigh would think we were bucking the system. Maybe this was my last holdout of "My Plan" as a parent. Maybe I wanted Caleigh to have the school experience that Eric and I had. The stereotypes in my mind were pretty ingrained as well. The long hair and skirts, the large families, the evangelical christian co-op groups. It was hard for me to see myself in those stereotypes, but that's just what they are, stereotypes. They aren't always the truth, and so what if they are, differences make the world go round.

After I got over my issues and started focusing on Caleigh, all of my worries disappeared. I let go. At this point I wish that I hadn't put Caleigh through starting and stopping school. Although, hindsight is always 20/20; our experience by no means leaves us with "what if" questions. We already know the answers.

Today I attended our last ARD meeting. This meeting was set to go over the fact that our school district was denying Caleigh home bound education. They feel that their schools can accommodate "Caleigh's chronic diarrhea." Obviously we disagree with this. Mostly that "chronic diarrhea" is not really the issue here. They had missed the mark....again. It was a very short meeting. The home bound coordinator and teacher failed to show up....again. The coordinator participated over the phone after being called. This meeting was easier for me than the others because I was resolved to homeschool my child. I wasn't expecting anything from these people and I wasn't having to fight for anything. I felt no need to hash everything out. We're done. D-O-N-E.

Now on to the fun stuff, teaching her.

These past few weeks have been a lot of fun for both Caleigh and I. Our curriculum consists of just about every subject. Caleigh is doing 3rd grade math and actually gets a little annoyed with me sometimes because it is still pretty easy for her. I thought the mathematics load would be too much for her just because of fine motor skills, but she has proved me wrong. I've also started with the basics as far as phonics goes just so that I know that we have covered everything. She is doing some easy readers by herself while we are reviewing blending and letter sounds. I feel like I've been reading non-stop. Caleigh asks to read her library books and school books all the time. We've read through chapter books and re-read favorites. She has always loved to be read to, but it has really picked up since starting.

For holidays and special events we will do a unit study. Monday we talked about Martin Luther King JR a lot. We did a brown and white egg comparison. Caleigh spelled out on her iPad what was the same and what was different between the two eggs. We watched MLK's famous "I Have a Dream" speech on YouTube, and Caleigh watched the full 17 minutes of it intently. Having a child with a disability makes Mr. King's speech take on a whole new meaning for me personally. We also read a really good library book on the subject.

Our schedule is so flexible with teaching this way. Caleigh took a 3 hour nap the other day. She needed it and I was able to let her do that. A full day at a school couldn't offer such rest. It works perfectly with Caleigh's therapy schedule and doctors appointments. We also start art class back up tomorrow morning. By the time Caleigh is ready to go to bed we have completed everything that I had scheduled. So far so good.

You know that feeling of complete and total acceptance in your decisions? Confidence. The feeling deep down in your gut? I now have it. It's a good place to be.

Caleigh's Pool - Week Eight

2012-01-15T12:40:00.004-06:00

Day 25 - Power wash rocks 1-9-12
We got several inches of rain this day. They came out and power washed the rocks, brushed and cleaned out the leaves in the pouring rain.

Day 26 - Masonry rock repair and start-up chemical check 1-11-12
There were a few rocks that needed to be repaired and reattached. The start-up process is a three visit schedule. This was the second visit.

Day 27 - Start-up chemical completion and Landscaping 1-12-12
To finalize the start-up chemical process, they clean out the filters and make any adjustments necessary.

Day 28 - Training Day 1-13-11
Eric and I bundled up Caleigh, she chose her stander, babies and music; and then we headed outside for our pool training.

Meet Becky.... Caleigh's new pool cleaner.
Most families name their pool robot. I remember a friend's from when I was a kid, The Octopus. So when we asked Caleigh what she wanted to name her new pool cleaner she spelled out Becky. Becky is a Polaris 480 Pro....and apparently female.

During our training we learned about the filtration systems, chemical balances and when everything needs to be cleaned and replaced.

The water in the pool is still very dirty. You can't even see the bottom right now. The landscaping is now covering the loose dirt. So that should help out a lot. We've put something called Alum into the water and shut off the filtration as of this morning. Alum puts a thin layer on the water. Once the filters are turned off the Alum sinks to the bottom of the pool taking all the dirt with it. Tomorrow they will come in and manually vacuum out the bottom of the pool.

By the end of next week the saltwater system, heater and chemical balances will be turned over to us. Today, January 15th, is supposed to be 70 degrees. We are hoping the unseasonably warm weather continues its pattern.

Caleigh's Pool - Week Seven

2012-01-07T20:00:00.000-06:00

Day 20 - Dirt Work and Final Water Pump Out 1-2-12
Eric and Grampa spent the afternoon cleaning up the fence area and adding more dirt to spots that needed it.

That same day, the leaves and dirty water were pumped out of the shell for the final time.

Day 21 - Final City Inspection 1-3-12

Day 22 - Plaster 1-4-12
Pebble Sheen Aqua Blue

Day 23 - Plaster pressure washed, buffed and Water Filled 1-5-12

We started filling the pool with water somewhere between 10-11am.
Caleigh had her last chance to stand in the bottom of the pool with Daddy.

She was so incredibly hyped this day. We kept going outside to check the progress. She couldn't take a nap and told us that she felt "excited."

The weather was beautiful and unseasonably warm. We spent most of the afternoon outside soaking it up.

There was still quite a bit to go by the time Caleigh was ready for bed.

Eric stayed up and finally turned the water off around 1am. Our estimate on water gallons is about 8900 give or take a shower or two. By the next morning the pool was full and gorgeous.

Day 24 - Pump and Chemical Start Up, Gas Meter and Mastic 1-6-12
The pumps were fired up and the start up chemicals were added to the water. The chemicals made the water cloudy and changed the overall color a bit.

Since the final city inspection was complete, the gas meter was ready to be installed.

On the decking, there was foam inserted in the joints when it was laid. On this day, they applied mastic to those joints. We weren't allowed to step on these areas for 24 hours.

For the next 14 days the pumps will run 24 hours. We will also be brushing the plaster twice a day to loosen up any debris and push it towards the main drains. Today, I quickly learned that the simple task of brushing is quite the workout.

There is still a lot of little things that need to be done before Caleigh's actual first swim. Now that there is water in the pool, Caleigh asks to go swimming at least twice a day. Little things that she can participate in seem to help the growing anticipation.

The next two weeks will hold all the finishing touches.

Christmas Recap 2011

2012-01-02T15:33:00.004-06:00

This year Caleigh's Christmas had one theme and one theme only.
Babies.

Meet Baby Abby. Santa pulled through and brought Caleigh the exact doll she asked for. Dolls galore, puzzles, swim stuff and books dominated the unwrapping this year.

Some of the baby dolls Caleigh received already had names. The ones that didn't quickly got named. Some of the names Caleigh spelled out for her new dolls were: Elle (Swimming Baby) Gail (Elf on the Shelf) and Daleigh (pronounced Daylee).

Overall, it was a good Christmas. I know I say this every year, but each holiday gets better and better with Caleigh. She understands and grasps more about the traditions. She participates more now that she is using her iPad and quite honestly people are listening to her more often too.

Caleigh will name off the babies that she wants to play with. This particular day she asked for them all by name and then slowly but surely pushed them all off of her tray.

With Eric's work schedule we were up checking out what Santa brought at 5am this year. Caleigh was in a bit of a sleep fog the whole time. We made memories, took photos and opened presents in just enough time for Eric to make it to work. Caleigh took a 3 hour nap that day!

I got a new lens for my DSLR. It's more of an art type lens, but I like the dreamy effects. I've got some plans for it. Maybe this new year will give me the time I need for my art. Just Maybe....

Caleigh would play with babies all day if I let her. I like to think there is imaginative play happening while she is wiggling around on the floor or chewing on them while in one of her many pieces of equipment. Either way this is her favorite spot right now.

The Gray family is in organization mode now that the holidays are over. We are working toward a fresh and organized beginning to our official homeschool start and the completion of Caleigh's backyard oasis. This Christmas flew by, but I definitely know a little girl that will be counting down till next year.

Caleigh's Pool - Week Six

2012-01-01T18:45:00.001-06:00

Day 17 - Door alarms and fence latch installed 12-28-11
Alarms were installed and a new fence latching system was placed before the final inspection could be completed. The final inspection is done just before the plaster is applied then the pool is filled with water.

Day 18 - City Inspection - Failed 12-29-11
The chain link fence that we had in-between our driveway and backyard did not meet our city inspection code. The holes were 2 1/4 round, city code requires 1 1/4 round and a certain gauge steel. Little feet could climb right up and over that fence in a hurry.

Eric spent most of the day calling around trying to find the correct size; only to find out that most everyone didn't carry it or hadn't heard of 1 1/4 chain link. Everyone from Home Depot to wholesalers were a no go. So we started going through options. Wood, metal, chain of loved ones holding hands.....
We needed something fairly quick. After all, the completion of the pool was waiting on this fence debacle.

We decided in the process that we wanted to remove this area of our driveway if we were going to go to the trouble of getting a new fence. It's purpose was another parking spot and backing up space. This makes our backyard bigger and gets rid of the already buckling concrete.

I love my vines. I'm a fan of all things green and if it stays green all year, even better. Everyone at Claffey Pools did their best to avoid tearing up the vines. In the end, we had to tear down the fence, which made them come down anyways. It was a sad day for my tree-huger heart. I'm hoping for a controlled vine return in the spring.

Friday was our 11th wedding anniversary. Our gift to each other was the unexpected metal fence and concrete removal. It's the little things, right?

Day 19 - New metal fence installed 12-31-11

We like it. It looks more modern and seems to go with the pool. The area looks tons larger, probably because the vines are gone. It's just more open.

We need to bring in some dirt to fill the hole where the concrete was. We'll have to decide on some landscaping at some point as well.

Fingers crossed the new fence passes the second city inspection. If it does, Caleigh's pool will be full of water by the end of next week.

Happy New Year!

Caleigh's Communication Part 6 - PRC ECO2

2011-12-27T21:06:00.003-06:00

On December 12th we had a meeting with our speech therapist and the local rep for Prentke Romich (PRC) to trial the ECO2 with EyeGaze. This isn't the first time we have trialed a PRC device. The rep has probably been to our home 4 times now. The ECO2 device works similarly to the Tobii that we trialed a few months back. The PRC and the Tobii use the same eyegaze camera, so I highly recommend trying both if your going to go that route. The Tobii work seamingly well for Caleigh, but something was missing for me to be 100% sure it was the device for us. So we trek on...

It's no secret that I love the language system, Minspeak, that comes with the PRC device. If accessibility wasn't the issue we would have grabbed one of these up 2 years ago. The first time we sat down with Caleigh, using the eyegaze, she was frustrated and it didn't work. The next time we tried it we were alone, calm and tried for 20 minutes. The device was registering her eyes, but her glances are just too quick for any choice to be made. The Tobii was much better in this regard, but it lacks the language system we love.

A keyguard was ordered, the eyegaze system was removed and Caleigh started using the ECO2 on her wheelchair tray with 45 single hit choices laid out in front of her. It's not perfect. She has accidental hits. She repeats the same thing over and over trying to get her point across. The device isn't in the perfect position on the tray. Even with it not being "perfect" just yet, she is totally using it appropriately. The good news is that we know our daughter. We know when she's being bossy, sarcastic or seriously needing something. Caleigh says she likes it, which is huge for our iPad loving child.

On one of the first days Caleigh used the device, I asked her if there was anything that she always wanted to say that was never on her iPad. She paused for a moment, hit "you" and then went to the pages section, she found a category with words of affection, then hit "you are" "pretty." I'm not even going to lie here, I might have choked up a bit or a lot..... It just seemed like a pinnacle moment.

It's hard to explain to someone that has never seen the device, exactly how you can say hundreds of thoughts with just 45 keys, but apparently it can be done. If you watch the documentary "Only God Could Hear Me" you will be able to understand the hieroglyphic system a little more in depth.

The goal for this week is to customize it a little more for her now that we know she can access the 45 keys. Her excitement has waned a bit without the customization. We will also start talking about funding, mounting systems, what the rules are and if this is really the device for Caleigh.

The video below was taken on Christmas Eve. Caleigh has a sarcastic humor about her, which I assume most children might. You ask them to do one thing and they do the opposite while smiling at you. That's Caleigh. Some of her responses are that humor and some are accidental hits. After watching the video, I realize that I need to cut down on the number of times I make a request. Something for me to work on. Side note here -- apparently my Texas twang really comes alive when hanging out with family on holidays. Something else to work on!

Merry and Bright

2011-12-25T22:54:00.001-06:00

Caleigh's Pool - Week Five

2011-12-23T16:18:00.003-06:00

Day 14 - Dirt work completed, french drains installed and trash removed 12-19-11
This was all done in the morning. By 1pm it was pouring down rain and continued most of the day. These photos were taken in-between down pours.

Day 15 - Irrigation Completed 12-20-11
New sprinkler pipes and heads installed. Sprinkler system wiring replaced.

Day 16 - Fence paneling replaced 12-21-11
We plan on eventually replacing our fence with something a little taller and more private. Some of the fencing must be 20-30 years old at this point. Our house sits on a diamond shape lot, so to say we have a lot of fence is an understatement! It's on our home repair list.

12-22-11 through 12-26-11 Christmas Break

3 Sleeps

2011-12-22T08:16:00.000-06:00

It's been almost 2 weeks. I haven't updated about Caleigh's eye and everything else she has been up to lately. So, I thought I would take a moment to jot things down. No particular order here....

Caleigh's eye is better. She has a few remaining pink healed areas and it hasn't bothered her for over a week now. The liquid medicine, that contained sorbitol, didn't work for Caleigh's intestines. With each dose she was vomiting more and her stooling was increasing. We stopped it and now we add sorbitol to our list of intolerable sugars. We have an eye appointment on Friday to check on things. I suspect everything will be fine.

We've had several Christmas get togethers with many still to go. This past weekend was packed with them. Caleigh got the chance to tell Santa what she wanted for Christmas using her iPad. She gave her name and age. She went through the whole list. She even threw in some chit chat. When Santa asked if she was a good girl this year, Caleigh told him "no." He said, "Oh, I'm sure you've been a good girl." She said "I don't know." I think she might have been testing him...

We've been doing an Advent calendar this year. Caleigh enjoys it and she can tell you exactly how many days until Jesus' birthday.

We went ahead and signed Caleigh up for another semester of art class. She seemed excited about it and other than the "don't help me" whining, she did really well. Caleigh was even invited to a play date with one of the kids in the class. Socialization...check.

I've been working on getting curriculum together in hopes of starting to formally home school this coming January. I think I have everything set, except math. Most of the kindergarten math companies have manipulates and it's all about counting. I discovered Singapore Math, and I like what I am reading about it so far. No manipulates, just straight facts. Repetition is kept to a minimum. In general, the grade level of Singapore Math is one year ahead of traditional levels. They have placement tests on their website so that you can decide what level your child is. Each test takes about an hour to complete and I've been able to adapt each test for Caleigh using the iPad. I'm still testing right now, but so far she has completed and passed 3 math tests up to 2nd grade A. They have A & B for each grade. We will do B next and see where it takes her. I have yet to stump her. With each test she surprises me. The deeper I've gotten into choosing and deciding curriculum, the more confident I am that this is right for Caleigh. Where else could she get the right level of math while learning the right level of language arts? It just fits us.

We are trialing another communication device right now. Caleigh is doing pretty awesome with it so far. I hope to put up some video and talk more about it soon. We are all crossing our fingers that this is "the one."

Caleigh's bacterial overgrowth seems to have subsided. It's been just over a month since her last round of antibiotics. She stools up to three times a day, which is a good number for Caleigh. I actually made the decision to start upping her feeds again. We haven't done this since June. Right now she is getting fed 14.5 hours a day. Most of which is while she is sleeping. The freedom is really nice.

That's about all I can think about right now. With only three sleeps until Christmas we have a lot to do to get ready!

Caleigh's Pool - Week Four

2011-12-19T07:53:00.003-06:00

Week four was slow going as well. The weather here in North Texas isn't cooperating very much with our Christmas swimming plans. Week three was freezing temps, this week was much warmer, but very dreary and rainy.

Day 12 - Rain water drained from pool shell 12-13-11

Interesting pool tidbit: The two holes drilled into the bottom of the pool shell (see photo below) are to keep the gunite from popping out of the ground. The weight of the water in a pool is actually what keeps the shell in the ground. Without water, it could just pop right out! These two holes help that issue. They will be one of the last things filled in and finished out.

Day 13 - Plumbing touch up 12-14-11
Pipes cut and fitted, Exposed pipes buried, Faucet hookup for water hydraulic pool lift.

12-14-11 through 12-16-11 Rain and warmer temperatures
Leaves and rain water fill the pool again.

At this point it's all finishing touches. The ground will be leveled and graded out. Gas meter hooked up. The inside of the pool will be finished and the irrigation completed. There is still quite a bit, but if the weather stays steady, it won't be much longer.

Caleigh's Pool - Week Three

2011-12-12T09:45:00.002-06:00

Week three has been slower than the first two mainly due to freezing temperatures. The deck couldn't be laid with the chance of freezing. With the week Caleigh had, it's probably better that it worked out the way it did though. If the weather cooperates we don't have much longer until it is finished. Enjoy the week in photos.

Day 10 - Gas Plumbing Covered 12-5-11

12-6-11 through 12-8-11 Inclement Weather
Rain and freezing night time temperatures.

Day 11 - Deck Poured and Salted 12-9-11
The salt is sprinkled on top of the cement to add a texture to the final product.

Eye Troubles

2011-12-08T13:41:00.008-06:00

This has been one heck of a week. Between Caleigh and Eric, our family of three showed up to 11 doctor's appointments. Eleven. I'm pretty sure that was a record for us. A number I don't want to repeat anytime soon.

Eric is doing good. He had a regular doctor's appointment and also several dentist/endodontist appointments. His root canal is healing well.

For Caleigh, her trouble started Saturday morning with a bloodshot left eye, some nasal congestion and she complained of a headache. I was thinking allergies, so we laid low all weekend. Monday morning she was still feeling yucky, so I called the pediatrician to see about a different allergy medicine. All children's allergy medicines have some sort of sugar to them. We haven't found one that Caleigh can tolerate yet. I went that afternoon and picked up a sample of a different nasal spray. The age on that one was 6 years old. We decided to wait until the morning to give the first dose just in case she had a reaction.

Tuesday morning only the eye issue was remaining and the skin around her eye was pink and swollen. I thought, ok, so it must be pink eye. We didn't give the new medicine. I made an appointment and saw the nurse practitioner that morning. She didn't think it was pink eye, but maybe an irritation caused by allergies that was trying to get infected. Not contagious. She did give us some drops as a preventative and we started those as soon as we got home. They burned horribly, and Caleigh acted like she wanted to crawl out of her skin when we put them in.

Wednesday we went ahead and had PT and we stayed home the rest of the day. By Thursday the redness on the skin had spread and at this point I was getting a little worried. I made another appointment and we saw the pediatrician that morning. She stopped the drops and switched to an antibiotic ointment. She noticed some white spots in Caleigh's throat and noted it was red as well. The rapid strep test was negative, but she sent it off for culture. She told me to do the ointment and then call her the next day with an update. At this point she was thinking it was conjunctivitis, pink eye.

Friday morning Caleigh woke up with tiny blisters, about 4-5 along the upper and lower lids. I called the pedi again and she told us to go to the eye doctor. At this point I was thinking it was one of two things. Either a fungal infection or a cold sore.

We got into the eye doctor and it ended up being Ocular Herpes.

Now I've had fever blisters, cold sores, whatever you want to call them, for as long as I can remember. They pop up at the most inopportune times in my life. School photo day, weddings and basically anything big and stressful. I get them from being sick, stressed, eating too much chocolate, hormonal issues, weather changes and getting too much sun exposure. Pretty much at any moment. The difference here is that mine are always on my lips or nose. As a kid I was told horror stories about people getting them in their eye from not washing their hands when they have one. Because of this, I'm a crazy hand washing lady when I have one.

The thing with this virus is that you can be exposed at any point and then it just lays dormant until it is triggered to come out. The articles that I've read suggest more than 25 million people have the facial type and only about 500,000 with the ocular type. Leave it to my kid to get the more rare version. My family has history with these things and I'm sure at some point I gave Caleigh this virus. In fact, I've had one fever blister after another for the past month. The thought that I gave Caleigh something so incredibly painful is making my heart hurt. It sucks. We can't even use the over the counter numbing ointments because of the location.

Ocular Herpes Simplex is a different ball game. It's kind of scary actually. It can cause scarring to the cornea and even blindness. The outbreak that she has right now isn't on her cornea. It actually started in the white of her eye. We have an ointment to put on 5 times a day but it doesn't take the pain away. We also have an oral medication to keep it from spreading. The medication contains sorbitol, a sweetener, that we haven't experienced yet. If it's like the other sugars, she probably won't be able to take it, but we decided to try. As of this morning, she threw up the dose, so we'll see. We take her back to the eye doctor in two weeks.

The strep culture at 24 hours was still negative. Most likely she initially got a virus which caused the congestion symptoms, and consequently, her eye to breakout. We will watch her very closely while it heals and add this to our ever growing list of diagnoses.

We also had appointments with neurology and Caleigh's surgeon this week too. Neurology was fine with no real changes. We will continue to go up on the Artane as Caleigh tolerates it. We will also be meeting with a team, working on getting iPads paid for by insurance, in January. They need someone familiar with the programs and we need help with positioning, mounts and independence. I'm hoping to get a little something out of it, but I don't have super high hopes.

Tuesday morning was our appointment with Caleigh's surgeon. He is actually moving to Eastern Tennessee Children's Hospital in Knoxville to be the chief of surgery. He will also teach at The University of Tennessee. His move comes from the need to be closer to his parents in Atlanta as they get older. We sat and talked about the old days, how Caleigh is doing now, our options if future surgery is needed, his partners and his decision to leave Texas. He tried to get us to move with him. I can't express how I feel about this man. He's like family. Such a selfless man. He has saved our daughter repeatedly. He is our safety net. When we walk into a room we don't have to go over anything with him. He knows Caleigh and that is a huge relief. Caleigh and I made him a going away card and he gave us his contact information at the new hospital. It was a sad appointment that brought back a lot of memories for me. He will be greatly missed. We are happy for him and his new journey. We left with a "cross our fingers and pray that Caleigh doesn't need anymore surgeries" comment. I have a feeling this won't be the first professional in Caleigh's life that we will have to say goodbye too. That's just the way life is.

Caleigh's Pool - Week Two

2011-12-04T00:00:00.002-06:00

This past week has been a busy one. Our backyard was constantly buzzing with different crews. The construction really seems to be flying by. We are enjoying the progress. Here's the week in photos:

Day 5 - Gas Plumbing & City Inspection 11-28-11

Day 6 - Rocks Delivered, Sand Delivered, & Electrical Work 11-29-11

Day 7 - Rock Work & Irrigation Cap 11-30-11

Day 8 - Complete Rock Work 12-1-11

Day 9 - Decking Form, Steel and City Inspection 12-2-11

Reading List

2011-11-30T20:30:00.003-06:00

When Caleigh was born, and probably her first few years, I was always searching for answers. The latest and greatest "fix," and other parents with children Caleigh's age going through the same situations. I was checking to see what was working for those children. Mostly short gut solutions and therapies that would help Caleigh. I always felt like I was missing something along the way.

In the past year this has all changed somehow. I find myself more interested in the stories of adults with disabilities. Maybe I'm searching for proof that Caleigh could live a long life. Proof that what was predicted of Caleigh's lifespan might somehow be wrong. I don't look for new parents anymore. I don't look for new therapies. I'm not on any of the online support groups that I held onto so early on. My researching has turned into searching for adults that are living meaningful lives, that are similar to Caleigh in some way. What was their childhood like? What worked, what didn't work? What were their emotions as a child with a disability. What do they wish they had known as a child? What would they want me to know about raising my child with a disability? My reading and watching has changed right along with that. I've found some amazing people along the way that have totally beat the odds. I enjoy their advocacy and their insight daily. I've read a couple of books and watched a documentary recently that I wanted to share.

"Only God Could Hear Me"
This video is a little over an hour long. The individuals that are followed through the documentary all use communication devices to speak. It's a beautiful thing to see just how independent everyone is with their devices and their lives. The Independence is what I really latched onto during this film.

"Out of My Mind" by Sharon Draper
Let me just tell you that this book is amazing. It's the fictional story of an eleven year old girl who is non-verbal and uses a wheelchair. The story is written as a pre-teen angsty novel. It's an easy read. I read it in two sittings. It's not a feel-good-happy-ending story. I've heard several parents say that they didn't like this book, but for me the story had me thinking of Caleigh constantly. The character is crazily similar in so many ways to Caleigh, that I had to keep telling myself that the book was in fact fiction. I love it and it has a permanent place on our shelf. Boy or girl, verbal or non-verbal; it's a must read for children. In fact, everyone, no matter their age, should really read this book. I fully plan on Caleigh reading this book when she's older.

"I'll Do it Myself" by Glenda Watson Hyatt
Glenda was so kind as to send me a copy of her book. An autobiography that classically tells the "take her home and love her" diagnosis; only to far exceed everyone and their expectations. Glenda's story is a hopeful tell for parent's like Eric and I. At the same time, her story confirms the heartache that Caleigh will probably have to endure. Glenda has spunk, sarcasm and a great outlook on life. Her advocacy is paving the way for Caleigh. Glenda and her husband are an inspiration to our family. She's pretty awesome with her iPad too :-)

Of course, a couple of my old favorites are: Blue Sky July, Including Samuel,
Schuyler's Monster and Disability is Natural

This new season in acceptance is a good one for me. Learning about the world of those with disabilities has been a rewarding experience compared to the world of trying to "fix" a single diagnosed label. The attitudes are on a completely different end of the spectrum. I highly recommend the move, but I for one, know that healing takes time.

Sleepy Giggles

2011-11-29T08:54:00.002-06:00

If you can get past my super awesome singing skills, this video will make you smile. Caleigh had the giggles right before bed last night. We love this girl so much!

Caleigh's Pool - Week One

2011-11-25T21:43:00.002-06:00

Day 1 - Excavation 11-18-11

Day 2 - Steel and Plumbing 11-21-11

Day 3 - City Inspection 11-22-11

Day 4 - Gunite 11-23-11

Steam off the freshly poured gunite.

Leaves already in the pool. This should prove interesting every fall.

At this point, we are watering the gunite shell twice a day for 5 days. This is to make sure the mixture doesn't dry to quickly. We got a nice rain storm last night that helped me get out of watering this morning.

Now that the pool shell is in, we can really envision the size and depth, and we think it is just perfect for Caleigh. The first week has been a lot of fun. We've never seen a pool being built before. It's an interesting process so far and everyone has been super fast. We go outside with Caleigh and talk about what was done that day. Caleigh smiles like crazy. It's beautiful to see her so excited.

Turkey Day & Updates

2011-11-25T18:23:00.004-06:00

Caleigh was so excited about Thanksgiving this year. In lieu of pre-k, we've been doing turkeyish crafts and talking about pilgrims for awhile now. The holiday season this year is going to be extra special. I said it last year, but I can already tell that she just gets it. It's exciting to see.

The excitement started the night before where she tossed and turned most of the night. I finally went in at 5am and she was smiling from ear to ear. She was up and ready to go. Even though Caleigh can't eat the typical turkey day meal; she was mostly excited about going from house to house and visiting with family. Thanksgiving was a success this year despite the 5am start.

Today we wrote out a list for Santa. I sat patiently while Caleigh spelled out each word to everything she wanted for Christmas. Now this could get tricky if you think about it. Caleigh could want something and not be able to tell us because of our language barriers. If she wished for something and it didn't show up; then what would her thoughts of Santa be? I was insistent that we mail Santa a list. If he doesn't have a list then he doesn't know what you want, type of scenario. I'm probably over thinking this situation, but I imagine the years to come will get more complicated. We're going to call this a tradition. Aren't traditions mostly born out of necessity?

The most interesting thing she asked for was a "Baby Abby." My first thought was "wow, this plan isn't going to work." I asked Caleigh if she knew what Baby Abby looked like and she said "yes." So I opened up the computer and googled "baby abby doll." Wouldn't you know the first thing that popped up was a baby from pottery barn. I asked Caleigh if that was the doll and she said "yes." We get those catalogs almost every week. Occasionally, I'll flip through them while Caleigh is sitting with me. How on earth she remembered that baby's name is beyond me. She is our observant little girl for sure.

Caleigh's intestinal issues seem to be steady right now. She has good days and bad days. We can't seem to narrow anything down, but as of right now she has been off of the antibiotic Flagyl for 2 weeks. This is the longest stretch since the bacterial overgrowth started back up in August. We are giving a heavy duty probiotic once a week right now and we continue using the oreganol oil. I'm starting to have thoughts that we can beat the bacteria again. Caleigh was without bacterial overgrowth for well over a year. I can almost see over the hill.

The Gift of a Lifetime

2011-11-18T00:01:00.004-06:00

At the beginning of the year we reached out to the Make-A-Wish foundation for Caleigh. She was in a good spot health wise and it just seemed like the right time. Long story short, Caleigh asked for a swim spa. It's kinda like a hot tub only bigger, deeper and without the seating. She had been asking to swim everyday. Even when we were snowed in back in January. Caleigh's loves in life are swimming and music respectively. Her wish was swimming. So Eric and I went on their website and discovered the swim spa idea. Everyone went with it. The problem was that they are super expensive. We had no clue. Caleigh's wish had to go to the national board for approval and even then there was a limit that made it difficult for our wish granters to find something for her. As soon as Caleigh's wish went to the board, the swim spa idea was taken off of their national website.

The day before we left for vacation, back in July, we got a call that something had come through. There are many rules when dealing with a large charitable group. The problem was that we would have to dig and lay a cement vault, pay for electrical hook up and then pay for the chemical filtration to be changed to salt water at a later time. Add that up and we are talking anywhere from $6000-$12000. Not exactly a feel good wish for mom and dad, but if that is what Caleigh wanted we were willing to go the distance. Since we were leaving the next day, we told them we would think about it, and get back to them when we got home.

In the mean time, we got with a friend of the family, in a round about way, who owns a local pool company, Claffey Pools. We asked for them to come out and bid a small spa, in ground, just to see what the difference would be since we would be paying a portion anyways. They checked out our backyard while we were gone and we made an appointment to meet with them the week after we returned.

We made it to our appointment with a sick Caleigh. Her pain and stooling was just terrible that day. The ocean and public condo pool had taken a toll on her intestines during our vacation. She actually stooled twice during our meeting that day. We were exhausted from being up with her the night before. Eric and I were there to get our quote, and think about it when things were more stable for Caleigh.

When we walked into the showroom, the spa design that was up on the projection screen was huge, elaborate, and completely out of our reach financially. I was actually a little disappointed that they didn't listen to our request for a "small simple spa." I got ready, in my head, to simplify the design. The appointment was scheduled so that the Claffey's whole family could be there. As Eric and I sat in the showroom with Caleigh, everyone introduced themselves and then they pointed out the preliminary design on the wall. All the while, listening and answering everything Caleigh was saying and asking on her iPad.

You get where I'm going with this, don't you?

The Claffey family began to tell us that they wanted to build Caleigh her very own heated pool. A pool that would be accessible to her for her lifetime. Claffey Pools, with a long list of vendors willing to donate everything necessary for Caleigh's pool, would be making this possible. Words simply can not describe our shock. Some of the comments before the appointment led us to believe that there might be a small discount, but under no circumstances did we imagine something of this magnitude would be given to Caleigh, to our family. Have you priced a custom pool lately? There are a thousand other expenses that Caleigh requires before an in-ground pool would ever be on our list. It's still mind baffling to this day.

Looking back I feel awkward about our reactions. Eric and I didn't say much other than thank you with the ever so slight deer in the headlights look. What can you say really? Caleigh threw out several thank yous as well. I recall mentioning our grass and sprinklers. As in, our grass will be messed up afterward, who's gonna fix that. Nice, huh? Like they've never done this before.

The past couple of months have been filled with permits, an electrical re-route and a gas main hook-up. Every time someone came to our house to work, Caleigh would ask to go swimming. The pool plans are up on the fridge and we talk about them often. The anticipation has been wonderful. What an exciting thing for her to look forward to.

This pool will be an amazing thing for Caleigh in so many ways. She is free to move without the assistance of another person or a piece of equipment. Caleigh sleeps better when she has swam that day. She is happier and her muscles are more relaxed. With the pool chemistry and those swimming being in our control, the risk of infection is dramatically lower for her. The one activity that Caleigh enjoys tremendously paired with the therapeutic benefits of warm water is just the happiness our girl needs.

A HUGE Thank You to the amazing Claffey Pools Family and these wonderful vendors donating their services to Caleigh's pool.

Mac's Excavating
Maddox Steel & Plumbing
Prestige Gunite
Gustavo Martin Tile & Coping
Alliance Materials
Avery Irrigation
Kel-Tex
Southwestern Plumbing
Pebble Technology
Zodiac Pool Systems
A & B Plaster
Mackie Electric
Kids Matter International

Today is the day that digging starts. If all goes well, we are looking at 4-5 weeks to completion. Caleigh is over the moon excited, and quite honestly we are right along with her. The idea of Caleigh swimming in her very own heated pool anytime she wishes is truly the gift of a lifetime. We are extremely thankful and blessed to know the ever so caring Claffey Family.

Autumn Lake

2011-11-15T08:43:00.004-06:00

This past weekend we went to the lake with friends. We walked around soaking up Texas's brief autumn season. Have I mentioned how much I love our girl? Well I do. She's awesome in so many ways. Enjoy the photos courtesy of our friends Emily and Kristin.

ARD Meeting & Updates

2011-11-12T17:37:00.003-06:00

Yesterday was another ARD meeting at Caleigh's elementary school. This meeting was scheduled to go over the assessments that the OT, PT and VI instructors had completed. Since Caleigh was not herself by any stretch of the imagination during the 2 weeks she was present at school; the OT and PT didn't get much out of the evaluation time other than what I told them. The vision team took the time to come to our house twice to evaluate Caleigh, and honestly we really appreciated that effort. Out of the three, the VI team seemed to have a more clear perspective on Caleigh. Depending on her comfort level, stress and environment; the day to day with Caleigh is different in so many ways. The PT and OT seemed to only get to see the extreme weaknesses because of the situation. Reading their evaluations of Caleigh reminded us just why she isn't in the classroom setting at this time. It was extremely taxing on her.

When the meeting was scheduled I requested to have the home bound representative at the meeting. When we arrived that person was no where to be found. We were told that they were sent an email, but did not show up. We also wanted to get the home bound process started. We thought this would be done at this ARD meeting, but bureaucracy decided to step in. We will have to attend another ARD meeting to discuss Caleigh's eligibility for home bound services. If everyone agrees that she qualifies then services will start. I'm pretty certain we will go back to ARD to adjust goals and services even though we were reassured that we wouldn't need to.

The meeting seemed to be a waste of time for us. Everyone deciding what Caleigh needed in the classroom. The classroom that she isn't even in. Of course this information will be used in the home bound setting, but one meeting, instead of two or three, would have been better. Communication. It comes down to communicating with us about the process. I don't think we would have been as cranky about showing up to the meeting without everyone we requested to be there; if we were told that the home bound eligibility would have to be at another meeting for whatever reason. This is the diagnostician's job. Enough said.

In happier news, Caleigh went to her first art class this past Thursday with her friends Emma and Lily. We had a really great time. The best part for Caleigh was reading a story and then making a clay model of the "type unknown" character from the book. Caleigh helped me roll all the balls and pick out the colors.
Caleigh says he is "a bear"

She did whine a lot. It wasn't loud, just whining. She kept saying she was having fun and that she liked the class, but when I asked her what was wrong she said "I don't like it" and then spelled out "help." She didn't like me helping her. A little bit later she said she was frustrated and again spelled out "help." It makes me sad that I have to help so much, but she really only gets this way when she is around other children her age. I suppose she can feel her differences more when comparing herself to others. Funny enough all the kids were getting help from their parents. I tried pointing that out, but it didn't help much.

The best part for me was walking in carrying Caleigh, her backpack and her child-rite chair. The teacher looked at us and told us how excited she was that we were there. She then asked Caleigh if she wanted to do beads, painting or cut and paste. We sat down and started painting right away. Did you pick up on the best part? No evaluation, No questions about diagnosis, No what can she do questions, No therapeutic value intended. Just fun. Plain artsy fun. This is what our family needs. It was wonderful. We plan on attending the 4 remaining classes of the year and then registering for spring. This particular place even has a homeschool class for when Caleigh gets older.

My panic has subsided some about our surgeon team closing. It only took me a day to find out what had happened. The biggest factor was a move closer to family for our main surgeon. We still have an appointment in December so Eric and I can decide more at that time. We have other worries on our plate anyways.

In tummy news, Caleigh had a good 3 days of feeling pretty good this week. We stopped the Alinia because of the bloody stool she was having from the sucrose in the pill. When we stopped the Alinia we started Flagyl the same day. It's been the best antibiotic for awhile now, but we can't keep her on it all the time. As of tonight though she isn't feeling great. She's back to sleeping a lot and not wanting to do anything but lay on the floor listening to music and playing with her babies. The flagyl is supposed to stop on Monday so we are waiting to see what happens and what the next step will be. I'm tired of the uncomfortable ups and downs for Caleigh, but I know that things could always be worse. I'm thankful that we are able to treat this from home and with a quick call to our doctor to discuss anything new. Thankful and Blessed. It's the season, right?

Premature Adrenarche

2011-11-07T13:53:00.003-06:00

A new diagnosis hit us this past Friday. It wasn't surprising really. Caleigh's endocrinology labs came back showing that her adrenals are "open." This happens when your body is getting ready for puberty. Caleigh's body is secreting the hormone androgens early. This is considered the stage before precocious puberty. Caleigh has 3 of the 4 symptoms to this diagnosis; oily skin, pubic hair, and body odor.

The bone age scan of Caleigh's hand was normal and that is a good sign. An increased bone age can indicate an early puberty.

So we sit and wait it out. We will go to endocrinology every 6 months for blood work, bone scan and a growth check-up. Sometimes precocious puberty happens with this finding and other times it doesn't.

In other gloomy news, Caleigh's surgeons are closing their office. I'm not privy to what happened yet, but I've made an appointment for Dec. 6th to talk with them and find out. I'm actually in a bit of a panic every time I think about it. These two surgeons, who always work together for Caleigh, are the ONLY two people I trust with her situation. They know Caleigh inside and out...literally. 9 bowel surgeries and countless central lines placed. I owe her life to their skilled hands. What if Caleigh needs a central line? What if Caleigh needs bowel surgery again? Would we have to go to Boston? Heck, what about her g-button? The button is the absolute least of my worries. The entire reason behind us staying local when Caleigh was so very sick, was our team. The best surgeons and GI doctor anyone could ask for. I'm going to do some snooping around, but I guess I won't have any solid answers to my "what if's" until December 6th.