Reading List

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

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

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

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

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

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

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

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.

Biopsy Results

The results to Caleigh's scope biopsies are nothing extremely new and groundbreaking.

Gastroenteritis
Bacterial Overgrowth
Enlarged lymph-nodes in her colon

The results to the intestinal disaccharidases testing (enzyme testing) came back inconclusive due to the overwhelming small bowel bacterial overgrowth. All of the enzymes tested came back "low."

One bit of good news was that Caleigh's villi were not bleeding. So the ulceritive colitis was under control at the time of the scope. The Gastroenteritis that was found in the biopsy just means that the bacteria is causing her intestines to be inflamed. It's closely related to the irritation of a severe stomach bug. Caleigh just happens to have it all the time. The enlarged lymph-nodes in her colon are attributed to the bacterial and her short bowel condition. Caleigh's colon is tiny; actually it's called a micro-colon and this is due to the many surgeries that have saved her life. Scar tissue and damaged areas blocked the growth of her colon along the way. This isn't something that can be changed. The enlarged lymph-nodes are "to be expected."

With the bacteria in Caleigh's intestines blocking results we will not be given a set list of enzymes that she has or does not have. These enzymes help her break down foods. I was so hoping for a chance to feed her real food again. I was hoping for a -- she can have this but not that answer. This is a chronic condition though. There just doesn't seem to be any new answers out there. We do what we know works and stay away from what doesn't. So for now we will continue to work on clearing up the bacteria just like we have been for the last 4 months.

In trying to clear up the bacterial overgrowth, we started a new (to Caleigh) antibiotic, Alinia, on Monday. After 4 days on it, Caleigh has started having coffee ground stool and tested positive for blood. She doesn't seem to be in pain, but at the same time she is tired and weak. I'm waiting on a return call from GI, but I imagine we will stop the med. After checking out the ingredients, Alinia has sucrose as a binder in it. Caleigh has had trouble with sugars in the past. One being lactose and now I'm assuming sucrose. These are things that we would have learned from the enzyme testing had the results been more clear. So now we add sucrose to the list of things Caleigh can not have and we move on hoping to find the ambiguous answer.

{We have removed the headrest on Caleigh's stander to help strengthen her neck muscles. Plus, she was always hooking her head around the headrest anyways. When her head goes back she picks it up again. She is doing really well with the change and says she likes it. }

Trick or Treat Weekend

Early in October I asked Caleigh what she wanted to be for Halloween. She spelled out "Fancy Nancy." Fancy Nancy is Caleigh's favorite book series right now. Every time we go to the library we clean them out. We have read and re-read the same books over and over. Nancy's big thing is Fancy words and being generally Fancy. Plain is bad and Fancy is stupendous. Caleigh. Loves. Fancy. Nancy.

The weekend was filled with costume wearing fun. We went to a Fall Picnic, ate some BBQ, and took part in a small petting zoo.

There was only one baby goat and he/she wouldn't leave the corner. Grampa's farm had this place beat by a mile.

The Baby Lamb.
(ok, this was a grown sheep, but we went with lamb)

We have been doing small unit studies with Caleigh since she has been home from school. One of which was baby animals. I asked her what baby animal she would want if she could have any kind. She spelled out Lamb.

What a string of luck that there was a lamb/sheep for her to pet. Caleigh was excited!

The rest of the picnic looked something like this.

On Halloween night we headed down to Kendall's house to do a little trick or treating. Our neighborhood is fabulous, but it isn't very accessible, and there aren't many young children yet. So we went candy hunting with friends.

This was Caleigh's first year to trick or treat. I set up a page on her iPad for common Halloween sayings, but Caleigh totally froze each time we went to a door. Her arms pulled back and she got upset. It was too much pressure. We ending up playing music and a light show while we walked around.

Caleigh and Kendall. I love this picture. Kendall is totally going for Caleigh's candy bucket while Caleigh is blissfully unaware.

We ran into people we knew and Caleigh got to trick or treat at her speech therapist's house. We all had a lot of fun and the girls lasted a lot longer than we thought they would.

Caleigh said she had fun even though she could care less about the candy.
Holiday success story.