Impending Scope

Yesterday, we took Caleigh to our GI doctor. I came in with a list of concerns. Long story short, Caleigh will be having an upper and lower scope sometime before Oct. 14th.

The plan was to try another ulcerative colitis medication, Apriso, and see how she was doing in a week. At that time we would decide on the scope. When we got home the Apriso was in a capsule full of teeny tiny balls that time release as they go through the digestive tract. Typically you would eat this medication mixed in something thick. We have to give it through Caleigh's g-button. It wouldn't work. So I called the doctor back and he canceled the Apriso trial and went straight for scheduling the scope. Eric got creative and mixed it in a suspension of Caleigh's milled flax seed and it actually went down the button, but not without a fight. We are still going to try the medicine and hope that it makes her feel better.

Other issues we talked about were: diaper rash, body odor, excessive tiredness/low energy, labs, vomiting, weight control, sugar enzymes.

I went back on the blog here and read the results of Caleigh's last scope back in January 2010. Honestly, I have a way of blocking everything out. The details discovered during that scope were not surprising for Caleigh's history with short bowel syndrome, but really, denial is a good coping mechanism when things are going well, which they have been for the last year. I had forgotten a lot of the highlights. I do not purposfully go back and read the years of posts on this blog. They are there if I need them and today that worked out. They also put things in perspective though.

Another thing that was discussed was Caleigh's weight. We have been talking to the dietitian for awhile now. Now that the doctor gave his ok, Caleigh will be going on a bit of a diet.

We took Caleigh this morning to have blood drawn for a large amount of labs. Each stick produced blood, but then it clotted quickly. They have a 3 stick limit so they got some blood but probably not enough for all the tests. So we are waiting to see what we get back.

As far as school, my brain isn't handling this intestinal setback well. I've talked to an administrator about my concerns and Caleigh's health and I plan on having another meeting with more people involved. BUT I just can't do it right now with the scope planned and Caleigh in pain, stooling all day. It's just too much. So, I'll take denial again for 200 please.

When more information on the scope comes up I'll let everyone know.

The fork in the road

In the process of deciding just what to do about Caleigh's schooling; Eric and I were talking about the inevitable fork in the road. I feel very Robert Frostish lately.

Two roads diverged in a wood, and I--
I took the one less traveled by,
And that has made all the difference.

Now I just need to find out which one is the less traveled and which one will make all the difference for our girl.

Caleigh didn't go to school yesterday. Today we have a GI appointment, OT and a meeting with our MDCP lady. It's a busy day.

Caleigh's pain has increased since we finished the antibiotic last Wednesday. Her tummy is big. She is stooling at least 4 times a day. She tells me 5+ times a day "I feel sick" "My tummy hurts." Before going off the antibiotic she mostly said she was happy or sleepy. When she isn't being fed she tends to not notice as much. It's the feeds that seem to be bothering her. Sunday morning I woke up to the smell of Elecare. The tube had come open and the pump was feeding the bed for who knows how long. Caleigh seemed a little more upbeat that day not getting all of her feed. I'm very interested to see what the GI has to say about everything.

We have a neuro ophthalmologist appointment lined up. We also have a meeting with a child psychologist. We will be talking CVI with the neuro opthalmologist. We will be talking to the child psychologist about counseling techniques, and possible testing for school including the idea that Caleigh might be what is known as twice exceptional. We are hoping to get some more direction on Caleigh's education and vision. We are hoping to learn a lot from our upcoming appointments.

Until then, I will play the two scenarios in my head. A life in the public school system or a life of home and community education. They are two completely different paths. Equally just the same. Which one makes all the difference?

Spetember 11, 2011

I know that September 11th has past and most everyone is moving on with their day to day without thinking about the events too often. I wanted to go ahead and do a post on Caleigh's Daddy and his honoring of the 10th anniversary.

On September 11, 2001, Eric and I hadn't even been married a year. He was a firefighter in the Navy and we lived in Jacksonville Florida at the time. That morning I woke up and got ready for work. Eric had left much earlier that morning because he was set to be gone on a two week deployment. They often went out for 2 day, 3 weeks and the such so this was typical Navy stuff for us. Eric forgot his boots that morning and as soon as I walked into work he called me and asked if I would bring them out to the ship. I left work, went to our apartment, made it to the base, met him at the ship and gave him one last kiss goodbye before they took off. By this time I had the radio on and heard the news of the first tower being hit by an airplane. When I went back into work, I couldn't do anything but listen to the radio and wait. I remember trying to call Eric a few times and not getting a response. I was terrified. Caleigh's Grammie was visiting and I remember calling her too. I later learned that Eric's ship made an immediate deployment as soon as the news came in. I would later find out, for security reasons, that for 2 months after that day Eric's ship sat on the coast of Washington D.C. I remember the total encompassing fear of going to war. I remember the sadness and emotions like they were yesterday.

A few years later when Eric left the Navy and became a civilian firefighter the meaning of September 11th took a different turn. Where we once connected to the event by those military personnel involved and sent to war; we now added the relation to those firefighter's lost on that day. Losing Eric on duty is one of my biggest fears with his job. Most days it's easy to tuck away, but anytime I think about September 11th I can't help but think of the families involved and what a devastating loss it was for them.

This year was the Dallas 9/11 Memorial Stair Climb's inaugural year. Eric jumped at the chance to train and participate. The registration was only open to 343 firefighters signifying the number of firefighters lost on 9/11. Eric made it in and started training and raising money for the cause.

On September 11th this year, Eric, Caleigh and myself packed up and headed to Dallas. Eric described the scene of that morning as awesome and sobering. To see 343 firefighters standing around with their families, waiting to climb the stairs, was a realization as to how many firefighters actually died that day. It's heartbreaking.

There were bagpipes and drums playing. They had announcements and alarms when each plane hit and towers fell. Moments of silence interrupted with kids playing around us waiting on their Daddies.

Eric climbed 110 floors in about an hour and four minutes. Signifying that each tower had 110 floors. This is about 212 flights of stairs.

When Eric was done we all met on the 53rd floor for photos and rest. The room was overwhelmed with large men in bunker gear, sweat dripping everywhere and the smell of smoke off of their gear. Not one said that the climb was easy and not one made it seem like a piece of cake. It was tough both physically and emotionally.

Caleigh was smiling ear to ear when she saw her Daddy. We left our house at 6am that morning and didn't make it home until noon. She was an angel the entire time.

We are proud of Eric for honoring his brothers that day. There are risks with his career choice, but honestly we can't picture him doing anything else. It's his calling and he can honestly say he loves his job.

Days 5-7 + Parent Teacher Meeting

I am still a full time fixture in Caleigh's classroom acting as her one on one aide. Even with my presence and attentiveness there are still meltdowns.

On Monday, Caleigh wouldn't let anyone touch her. She wouldn't let me put her down. Each offense resulted in a crying fit that I had to diffuse. Another issue was participation. Caleigh refused to answer any question that the teacher asked her. The teacher asked her to choose the blue square and Caleigh just sat there for a moment. Then the more the teacher asked and waited the more angry Caleigh became. Eventually she did hand over hand with Caleigh and answered for her. She knows her colors and has for two+ years now. It was just pure defiance.

When we got home I asked her why she wouldn't answer the teacher. Caleigh told me "I don't like it" then she spelled out "question." So because she didn't like the questions she refused to answer them. I talked with her about the situation and explained why it is important to show everyone how bright she is. We also talked about following directions.

Tuesday, was a fairly pleasant day. I was present all but 10 minutes. The issue for the day was that Caleigh refused to sit in any of her chairs. Power chair, Child-Rite chair, and Special Tomato chair. I would ask her if she wanted in her chair. She would say "yes." Each time I went to sit her down and get her strapped in she started crying. She actually got so upset that she retched for the first time at school. I could tell that it freaked out the teacher a bit. She reassured me that Caleigh didn't retch last Tuesday when she cried so much. Good to know.

So when we got home I sat down and asked Caleigh why she didn't want to sit in any of her chairs. She spelled out "everyone sitting red chair." The next day I paid attention more and found out that after story time the teacher calls on each kid to head to the table and sit in a red chair. Story time chairs are blue. So all the kids sit in a red chair....except Caleigh. Physically she is unable to do so without someone's support. The school isn't willing to let her sit in these chairs. So putting together some of the pieces, I'm assuming Tuesday was all about wanting to be like the other kids.

Wednesday was more of the same. The orientation and mobility teacher came by and we watched Caleigh drive her power chair around the halls. The PT also joined in on the evaluating. By Wednesday afternoon I was just flat out exhausted. Caleigh's last day on the antibiotic for bacterial overgrowth was that day and her poor little bottom had a very raw diaper rash. She also complained of her tummy hurting. By that night, I had made an executive decision to not send Caleigh to school on Thursday.

Each day seems to bring some new emotional response from Caleigh.

For me, three hours of preschool drags on forever. The first few days were just entertaining. Now the three hours are slowly making my skin crawl. The routine and the physical transitions with Caleigh are tough. The hardest part right now is first hand watching the emotional time she is having. I have way more knowledge than any parent needs to have of their child's classroom too.

~~~~~~~~~~~~~~~~

Which leads me to the parent teacher meeting.

It's not good. Not good at all.

Thursday morning I jotted down some of our concerns. I planned on going in asking my questions and maybe taking 20 minutes of her time. I had a game plan. I was already nervous about it. An hour later, I left the building in a state of shock.

I've always been a good listener. I'm not the person to spout off the first thing that comes to my mouth. So when I sat down in Caleigh's preschool room and the teacher started rambling about next year's placement issues and assessment related problems....I listened.

She started off with where we wanted Caleigh to be placed next year. Apparently, this has been weighing heavy on her mind. There is regular kindergarten at our home campus {our placement of choice}, there is a supported kindergarten {not even close to our house}, there is duel enrollment where she gets some services at school and we home school her. I sat listening to placement options and what the teacher has to prove to the school officials for Caleigh to be on her home campus, for 25 minutes. Which in itself is a load of crap. Appropriate education, IEP, least restrictive environment and all.....

I finally decided to make a move for my questions when she switched gears and started talking about Caleigh's iPad. I thought great, perfect time to chime in about our concerns. I thought wrong.

She started talking about a study that happened in the late 80's early 90's when facilitators were starting to be used. A facilitator is someone who supports the non-verbal person's elbow so that they can use some sort of communication system. This isn't new news to me, but I sat listening. Apparently the study found that when the non-verbal person was the only one who could see the object in question there were all kinds of errors, but when the facilitator was involved and was aware of the question the answers were often correct. Basically, subconsciously the facilitators were giving the non-verbal person some sort of signal. She then proceeded to tell me that because of those findings that she could not test Caleigh using her iPad the way that she currently uses it supported in our lap. She feels that Caleigh needs to be able to communicate independently for her to properly do her assessments. The sooner we can get another device the better.

At this point I could feel my blood starting to boil. Not once did she say that she believed Caleigh was using the iPad for herself. Not once did she say that she thought I wasn't making Caleigh's movements for her. Not once did she say that she believes Caleigh already knows the preschool curriculum. Everyday I would sit in her class holding the iPad for Caleigh. She answered questions, she spelled out words, she asked to go potty. I kept the teacher and the aides in the loop. I felt like an idiot. This woman and her team feel that I am answering all of Caleigh's thoughts for her. I will say that she did not come out and say those words specifically, but it was completely obvious by her tone, body language and what she didn't say. They do not believe that a 4 year old that is non-verbal, in a wheelchair and has a vision impairment could cognitively know what Caleigh knows. How do you change the stereotype of mental retardation in the education system?

It then hit me that the lack of interest in the iPad pretty much stopped the day that I did the "training." The training that I talked through and Caleigh cried through. Not once has anyone sat down and tried to use the iPad with Caleigh the way we do. This was on my concerns list. I have a feeling a lot of this comes from the PT who also happens to be the AT person. She started off that little 'get to know Caleigh's iPad' session by saying "now for those of you who aren't familiar with the iPad, it was never made to be a communication device. Some parents have taken it upon themselves to make it one." How do you change an educators mind that has been doing what they do since before I, the Mom, was born?

I did go through some of my concerns. Mostly those not iPad related. I wasn't happy with most of those answers and they all really go back to Caleigh being able to communicate. One concern that is a problem, is that until all the therapists have done their evaluations and we have an ARD, they can not train the teacher and aides how to transfer, position and help Caleigh. Why would I send her to school with people that have not been trained to handle her situation? Another boiling point was when I talked about going to our home elementary school and meeting with the principal early next spring. She quickly stopped me and said "You don't want to be that parent. The kind that is showing up all the time." She then told me that she wants to make the connections, with whatever placement she decides on, first and before we do. Huh, has she been around for the last two weeks? I am that parent.

I know that there are IEPs for a reason.
Individual Education Plan is just that - Individual.
We can fight this. We know how.
Do we want to fight this? That is the question.
Our wounds are fresh. So right now we don't know.

For the past 4 years we have fought to keep Caleigh alive. Something most parents don't even have to think about. It is times like these that really take us back to the place of life and death and just how fragile and connected the two are. It makes fighting to prove your daughter's intelligence and communication skills to people that have only known her for 7 days absolutely absurd. It makes balance in our life and happiness for our chronically ill child more important than assessments and placement.

I have a slight grasp on where the teacher is coming from regarding her worries on testing. If she has been doing this as long as she says she has, then she knows that there are modifications that need to be made and that there are tests that Caleigh will not be able to take. Why exclude her from an appropriate education just because you can't fill in a bubble and fit her in a mould. I feel like she has already given up because she is overwhelmed. What I don't understand is the idea of leaving Caleigh without a voice until they find a way for her to speak independently. Independence with communication isn't a new aspiration for us. This has been our goal from the beginning, but leaving her voiceless in-between is ridiculous.

Now let me talk about my facilitating the iPad for Caleigh. There are days that I do hold her elbow steady and raised slightly so that she is able to reach the top row of Proloquo2Go. There are days that I just hold the iPad and nothing else. There are days that she can sit on the floor with her truck supported. There are days she has to be in our lap. There are days that she rocks using a wheelchair mount. There are days that she can't hit what she wants using that mount. This is Dystonia. This is Caleigh's muscles, jerks, twitches and weaving. This is why we adjust her equipment accordingly every single day. This is Dystonia. Every. Single. Day. Freaking Dystonia.

I questioned our use of the iPad for all of about an hour after my meeting. I then decided that no one, not one person, and not a group of people that have been in the same room as Caleigh for 20 hours total over 7 days can tell me that I am talking for my child. Caleigh has told us when her stomach hurts needing medication, when she had an ear ache which ended up being swimmers ear, she has named all of her baby dolls, one of which is Baby Holly, and she chooses to do activities on a daily basis that I would rather not do. The list could go on and on. Caleigh's behavior took a one eighty as soon as she was able to communicate. I am not subconsciously talking for my daughter. Neither are her grandparents, our wonderful helper and all of her current therapists who were willing to take the time to learn from Caleigh and use the iPad with her. I refuse to let those people take away what we have worked so hard on for the last year and a half. Absolutely refuse.

Day 3 & 4

Day 3 and 4 of Preschool is done. We survived...all of us.

Day 3 was a mess. A true mess. Caleigh woke up at 5:30 that morning. She stooled 3 times and puked up her morning meds. She told us that her tummy hurt, but after probing more we decided it was nerves. Even with a day off to recover, Caleigh was emotionally raw. I give her huge gold stars for even letting us walk back through the doors. The plan was for me to leave her for the first hour, but as soon as I said we were leaving she broke down in the saddest, defeated cry. The teacher asked me to stay.

From there it was one emotional break down after another. A sound she didn't like, a request she didn't like, a kid looking at her the wrong way, mentioning Daddy, the teacher talking to her. All made her break down and then some.

The planned iPad training was invaded with every therapist that you can imagine. It ended up taking place in the middle of the block center on the floor with Caleigh whining and losing it occasionally. In hindsight we should have taken the group to a conference room. Oh, well. I handed out outlines of our Proloquo2Go setup and explained positioning, testing methods and basically how everything boils down to creativity and thought.

We left class an hour early with an exhausted Caleigh in tow.

Today went better than any of the previous days. Caleigh got up at 7am which is typical for her. She woke up happy. I've been asked to stay with Caleigh full time for the next several weeks. So I stayed and acted as Caleigh's one on one aide for the full three hours. Not another person touched her the whole day. They observed, but didn't touch her. Caleigh did get a little uncomfortable when one of the little girls in kitchen center tried to get her to "eat" a pretend slice of pizza. Caleigh also told me that she needed to go potty. We went into the bathroom and she went. I'm proud of her for that.

There were areas of frustration for Caleigh that became more apparent to me today. Patience, taking turns, waiting for her turn, boredom. Bottom line - Patience. I spent the entire morning explaining to Caleigh why she needed to wait, who needed to do what before it was her turn, etc. Basically talking her off the agitated crying ledge.

Another issue is that Caleigh is more advanced than the current pre-school curriculum. I spent the other parts of waiting time pushing her further than the current question to keep her interested in the task. For instance, the children were counting yellow and red dots. The teacher was going around individually and helping the kids count the 5 dots. I asked Caleigh how many dots there where. "5." I asked her how many yellow and how many red. "3 & 2." I asked her math problems with the numbers. Finally it was her turn and she told the teacher "5." It kept her involved. Am I going to get that out of a teacher's aide? Maybe, maybe not.

I've been preaching socialization, patience and socialization since the very first phone call. That is why Caleigh is in school right now.

Because of my reasoning, creativity and preparing Caleigh for what was going to happen; she had a good day with a lot of smiles.

We are also working with the school nurse to schedule Caleigh's fluid doses during transition times instead of interrupting whatever is happening during class.

I, myself, was also more clear headed today. After brainstorming last night I felt like I was more confident to go in and basically tell everyone what we expected. The words that kept coming back to me are that they are trying to re-invent the wheel here. We know Caleigh like no one else. We know what she needs and when she needs it. We should be cutting the time and frustration and letting them know exactly what it is Caleigh needs.

After this first week and the time that I have put in, one thing is extremely clear now; Caleigh needs a one on one aide. Now most of those that are completely into inclusion would flip out at the idea of a one on one aide. Inclusion to me isn't a one size fits all mould. We will do what is best for Caleigh. She needs someone who can read her, make sure she can talk with her iPad at all times and can help her participate in all activities. It's hard work. My biceps hurt and my back is sore. Harder work than $8 an hour entails.

So I plan on meeting with the teacher early next week to go over some ideas. At that point, we will decide about calling an emergency ARD meeting or not.

This week has been nothing short of a challenge both physically and emotionally for Caleigh, Eric and I. We are hoping for a calmer more integrated school routine for the next few weeks. I hope for break throughs and ah ha moments for everyone involved.

Day 2 & 3

Day 2 for Caleigh at school was just plain bad. She didn't want me staying with her so after getting her settled in, Eric and I left. Apparently from the time line given to me and the conversations I've had with Caleigh this is how the day went......

Puzzles, announcements, circle time, lesson, songs etc.
The nurse came in and gave fluid.
Speech came in and Caleigh became agitated with her lesson.
The teacher and aide decided to change Caleigh's diaper thinking that must be what was wrong.
Once they were done PT and OT showed up.
At this point they took Caleigh's iPad to look at how it was set up and she continued to scream and cry. The crying and screaming got worse and they spent the next two hours trying to console her.

When Eric and I showed up to get Caleigh she was being driven down the hallway lethargic and whimpering. Her glasses were fogged over and we immediately took her out of her chair. We talked to the teacher for a bit and she explained some of the morning. Caleigh was still whimpering in my arms at this point. The teacher ran back to her room to get the iPad. While she was gone, the speech therapist introduced herself in the hallway and then proceeded to tell me that Caleigh "didn't pay attention during her lesson."

We headed to the van after getting the iPad. I put Caleigh in her car seat and went to pull down her shirt when I noticed that her g-button pad was falling off. I took it off and went to put it back on when I noticed something strange. On the bottom side of her g-button there was an area of bright red flesh coming out of the button hole. It looked like insides. It looked like the button area was pushing insides out. She has never had anything like this before. Caleigh's belly was huge. We could tell that she took in a lot of air while crying for so long. We immediately called the surgeon's office and took Caleigh home waiting on a return call. We laid her down for a nap and canceled OT for that afternoon. I called the school nurse and told her the situation.

When Caleigh woke up from her nap, her belly was smaller and the red tissue had gone back inside the stoma. A few hours later the surgeon's office called us back and suggested that it was a tissue hernia probably caused from straining. They actually asked me if I was able to "push it back in." Uh, no was I supposed to try? They told us to watch it and let them know if it comes back.

Caleigh was tired and lethargic the rest of the day. I put her to bed 30 minutes early and she slept until 8am this morning. It wore her out.

So as of this morning we took the day off from school.

My initial reaction was to pull her from school. Pre-K is voluntary after all.

I think it was pretty naive of me to leave her at school on the second day. Eric and I were completely repetitive when it came to calling us. They are aware of Caleigh's medical issues. Accepting defeat and calling the parents is not something they wanted to do. They thought {and still do} that Caleigh was being a typical child hating the new routine and missing her parents. Not true.

In fact, after talking with Caleigh the story came together for us.

The time line looked like this:

Circle time was good. Fluid went well. When the speech therapist came in she brought a clip board with pictures on it and then proceeded to ask Caleigh to touch whatever picture corresponded with the answer. Caleigh's iPad was not there for her to use. She started getting antsy, becoming more verbal and that is when the aide took her away from the activity to change her diaper. This upset Caleigh. The OT and PT came in with equipment. They talked to the teacher and took Caleigh's iPad to look through Proloquo2Go. Caleigh lost it. At this point it was no turning back. Fluid was given again while a leap frog toy sang the ABCs which helped calm Caleigh for a moment. I can only imagine how many times they played that stupid toy for her. Caleigh's tummy started to hurt. I assume from the air, crying and fluid. The pain made her cry more. Fluid was given again an hour later and the nurse reported the g-button site clean and fine. The rest of the morning was spent trying to console Caleigh any of the typical ways you would console a child. Including holding her like a baby and swaying. Not happy about that one.

Bottom line. Caleigh wasn't able to talk when she wanted too. Her biggest fear at school, and it happened.

Our problem with the morning? No one called us, and they should have. Caleigh's self soothing skills have never been perfect, but the fact that her body acted in the way it did speaks volumes. I can only imagine her frustration when she realized that she wouldn't be able to talk and no one understood her cries. A friend equaled the situation to sending her neuro-typical child to school and then the teacher putting tape across their mouth. I just can't wrap my mind around the fact that no one called us.

So this morning Caleigh slept in till 8am and I started making phone calls. I talked to the nurse. The teacher called me during a break. The speech therapist called me this afternoon. We have a semi-plan as of this evening.

Tomorrow, I will take Caleigh to school. I'll leave, but probably won't leave the parking lot. She will do circle time and the normal first hour things since that hasn't been a problem. At 9am I will go back in the classroom as center time starts. I'm going to give another training on the use of Caleigh's iPad. I have to do this with the teacher and 3 aides plus the speech therapist. At that point, I will decide if Caleigh has had enough or if she can stay longer.

The deal is that Caleigh could care less about being without Eric and I. Trust me, I've asked her. I've asked about over stimulation. I've asked her a lot of questions trying to pinpoint the problems. It all came back to "not talking." The teacher seems unconvinced of this notion. She thinks this is typical behavior for a 3-4 year old the first week of school.

I plan on being in the class when any therapist comes to see Caleigh. Evaluations are needing to be done before our next ARD meeting and I feel like we won't get anywhere if I'm not involved.

We are coming up with a time limit on Caleigh's crying. If she reaches that time limit they will have to call us. Period. The. End.

I explained Caleigh's vision to the speech therapist today. She hadn't read her file before seeing her in class hence the "she wasn't paying attention" comment. Out of the three aides only one of them is physically able to handle Caleigh and it isn't done well.
I like everyone on Caleigh's team. I don't want to give up after two days, but this is difficult. We've put so much effort into her going to school. Very difficult decisions.

I feel like this post is a bit scattered, but I needed to get it all down. As of tonight Caleigh says "I don't like it." When I asked her what it was she doesn't like she spells out "s-c-h-o-o-l." She has agreed to give it a go tomorrow with the plan above. We'll see how it goes.

I had to go back and read my post from Caleigh's first day of school where I said:
"I don't expect everyone to read Caleigh's mind like I can and most certainly not right away. It will be a learning process for everyone getting to know her."

It still rings true on the eve of day 4.

First Day of School

This morning was Caleigh's official first day of school. She woke up bright and early at 6am feeling excited and nervous. It was a little early to be getting ready so she watched an episode of Sesame Street before getting dressed.

We got to the school early enough to take a few photos and meet with the nurse. We unpacked Caleigh's things and got settled in. When the kids came in they all picked out a book to look at before morning announcements. After announcements they all moved to circle time where they did the day of the week, month, pledge of allegiance and hello song. They sang to Caleigh specifically because she was new in the class. The teacher explained Caleigh's power chair and iPad and used the word "special" a lot. I'm not a big fan of special.

After circle time they headed to centers. Caleigh got to go to the kitchen center. The aide was just holding Caleigh and she was getting a bit antsy. I suggested we ask her what she wanted to do with her iPad. Caleigh said she wanted to play with toys on the floor. She also asked for her music. So I explained that we don't listen to music in class and she seemed fine with that. We moved her to the floor and gave her babies. Some of the other little girls started playing with her at that point. Caleigh seemed pleased. We did a quick diaper change. Then I held Caleigh up at the kitchen station while one of her classmates made her a bacon and hamburger sandwich. Caleigh quickly knocked it on the floor.

We then did a small group where Caleigh and two other girls identified red, green and blue. I modeled using the iPad and Caleigh showed the teacher her skills.

Then it was time to go to the library center. The little girls were playing with Caleigh and reading her books when the PT brought a new chair in for Caleigh to try out. We took her away from her new friends and playing to get fitted in the chair. Big mistake. Caleigh threw a huge tantrum. She was mad. I ended up singing to her to make the tantrum die down. After the fitting was done we returned to the center and she resumed happy play time in her new chair.

After the little girls read to Caleigh a bit longer, it was time to move to computer center. Caleigh once again lost it. I'm not sure if it was moving away from her friends or the fact that her diaper was wet, but she lost it. I was actually on the other side of the room talking with the PT and going over using the power chair. I held back to see what the aide and teacher would do. Caleigh got pretty bad. Not swallowing and in between each yell sucking in the saliva. She was close to retching so I nicely suggested taking her out of the chair. It was hard for me to not jump up and fix things, but I really wanted to see how it would go. She continued to cry in the aide's arms. The aide tried to sing to her, I guess recalling my solution early. It didn't work. Finally when the computer station was over I went and got her and realized her diaper was wet. We went into the bathroom and tried out the potty chair that they have for her and changed her diaper. All was well again. I asked her what was wrong and she said she needed her diaper changed. So she was trying to tell them the best way she knew.

We sat down and colored with the other kids. Each of them had to show Caleigh their drawing. It was really cute. One little boy was showing me his picture. I told him it looked great and he said "no not you, Caleigh." It made me feel nice to know that the kids are already so accepting of the new girl.

We closed with music time and that too didn't go so well. They sang a song with bells and I think it was too stimulating for her. She was also in the new chair again, which is pretty awesome actually, but the teacher took her out and held her. It didn't work but the song was over soon. The teacher gave Caleigh to me and I asked her if she didn't like the bells. She said "yes."

By then it was time to pack up. The kids got their backpacks and talked to Caleigh a little bit more. We got Caleigh all set up in her power chair and she drove herself out of the building. Day 1 complete.

When we came home I immediately sat down and asked Caleigh questions about her first day. She said she liked it. I asked her if she wanted to go tomorrow. She said "yes ma'am." She likes her new friends. We talked about the crying and went over the reasons for her being upset. I asked her if she wants me to come to class with her tomorrow and she said "no." Our little miss independent.

The nurse came in throughout the morning and I showed her what all we do with Caleigh's fluid. I signed in her seizure medication and gave her a goodie bag of supplies.

I think the relationship aspects of pre-k will be good for Caleigh. I have trepidations regarding her being able to talk at school. There just isn't enough time and patience scheduled in to the 3 hours to use the iPad the way that Caleigh currently uses it. We will see. It was the first day. A choatic getting everything situated day. I don't expect everyone to read Caleigh's mind like I can and most certainly not right away. It will be a learning process for everyone getting to know her.

Day 2 starts tomorrow.

The day before Pre-K

The title to this post says it all. Caleigh will have her first day of school tomorrow. Our ARD meeting went well and didn't even last an hour. We all agreed on a healthcare management plan and all of Caleigh's doctors are on board. I have to say that I am loving the school nurse and she is the reason I feel comfort in sending Caleigh at this point.

We are still having issues with Caleigh's bacterial overgrowth. Three days off of the Flagyl and things started to fall apart again with 12 stools in 24 hours. So we started the Xifaxin back up. We will continue that for 14 days. So far it seems to have slowed things down and Caleigh's pain level is lower. Just in time to start school.

For the past week we have been counting down the days with Caleigh. At any given time she can tell you exactly how many days it is until school starts. Depending on the day and her mood, when we ask her if she is excited, we will get a "yes" or a "I'm not sure." We tried boosting the excitement by doing something school related everyday. One day we went and bought an outfit. Another day we did school supplies. It's been a busy week preparing for the big day.

Caleigh and I also worked on a flip book portfolio to hang on her wheelchair. The first prototype for now. I've always heard about the student portfolio that you are supposed to pass around to all of the adults involved with your child. That folder holds your vision for your child, IEP copies and any reports that are important. It can also hold anything personal you want others to know about your child. That is all fine and good, but who is really going to dig around in your child's backpack looking for the portfolio that might be there in a passer by situation? I decided to do the flip chart version with more personal aspects of Caleigh's life.

I included things like her iPad, eating restrictions, vision tips, important phone numbers, glasses, AFOs, Likes & Dislikes, G-button info and on and on. The good thing about this little chart is that it is easy to change things out. When Caleigh's favorite color changes, I can just change the card. Easy Peasy. When another child or adult comes up to Caleigh they can easily start a conversation just by the info in the chart. This is my hope at least.

I've been asked by the school nurse to stay with Caleigh in class for the full three hours on the first day. This is so that she can get our language patterns with Caleigh down and understand exactly what it is we do. Academically, I've seen the units of study for the next 4 weeks and honestly Caleigh knows it all. The trick will be having her show them that she knows it all. In due time, I'm sure. Socially, I can't wait to see which way Caleigh goes.

It's a very exciting and scary day all at once. I've been wishing I had a crystal ball the whole week!

Labor Day Updates

Our Labor Day has been nice. Eric worked, so Caleigh and I hung out doing the same old things. We had therapy, went for a run, painted and ran through all of the equipment at least once. Regular day for us.

Today was Caleigh's last day on the antibiotic Flagyl. Ever since we came home from vacation the bacteria in her intestines has been giving us a run for our money. We did Xifaxin and then Flagyl. We went off for about a week and then had to return to the Flagyl. She has only been lasting about 3 days off of the antibiotic without symptoms returning. We are hoping that this lastest round did the trick, but unfortunately Caleigh's tummy looks bloated and larger than normal. Signs that it hasn't. Something is off, but I just can't put my finger on it yet.

Since we have returned home Caleigh's enthusiasm in walking, driving, sitting etc. seems to be non-important. She just went through a heavy sleeping pattern where she was sleeping 14-16 hours a day. At first we thought it had to do with the bacteria, but we're pretty sure she was having another growth spurt. Each time this has happened we have to start over in the physical department. Dystonia and growth do not go together. So right now she is struggling and seems frustrated easily. We are hoping this will pass.

We took Caleigh to the dentist last week. She was a rock star. She doesn't bite the hygienist anymore and seems to enjoy the attention. Caleigh grinds her teeth, but we were told it isn't that bad yet. They also leave a calcium buildup on her molars to protect them. So far it is working. Caleigh is starting to have some enamel deterioration due to her vomiting of stomach acid. Bascially she is developing the teeth of a stereotypical bulimic. There really isn't much we can do other than brushing after each vomiting episode. I keep telling myself... it's just baby teeth, it's just baby teeth. Don't sweat the small stuff, but deep down I want our girl to have a pretty smile.

Caleigh also had a nephrology appointment this last week. We haven't taken her blood pressure in forever so the night before our appointment I broke it out and took a reading. I got a normal pressure and then breathed a sigh of relief. We basically went into the appointment and told the doctor that we were breaking up with him. It's been nearly 2 years since Caleigh has needed blood pressure medicine. She never really had a heart or kidney problem. The thought was that her intestines made for a full and tight abdomen causing her pressures to be high. Also a big factor was pain. If your in pain, your pressures will be higher. So the doctor agreed and we left mutually agreeing on the break-up.

We are still working on using the Tobii communication device. Caleigh is doing well with it and asks to use it everyday. It's a tricky thing, the eyegaze, but I think the fact that she asks to do it means a lot. She hasn't been very accurate in answering our questions yet. Maybe once or twice. We basically let her pick and choose what she wants. Stringing word after word together seems to please her.

Our next ARD meeting is scheduled for this coming Friday. We will be going over Caleigh's healthcare plan and any last minute issues. My plan this week is to finish Caleigh's portfolio that tells everyone about her when I'm not around. I need to get a few more things situated in my IEP binder, but overall I'm not too worried about this one. Tentatively, Caleigh will start school the following Monday if all goes well.

Which leads me to something new. Dreams. Caleigh has been having dreams. Good and bad. The iPad has given us the means to know what she is dreaming about. The main theme lately is that she won't be able to talk at school. This thought breaks my heart. She has also been missing her Daddy when he hasn't been around. Easily managed with a phone call. Dr. Google says that dreaming starts around 3-4 years old. So again, Caleigh is probably on target with something typical. This is the time that little ones climb into bed with you and say they have had a bad dream. Our little one can't do that. So waking up crying and not being able to go back to sleep has been hard for all of us. Guessing what has been wrong has been interesting especially with everything else going on. Finally we just asked her. She spelled out "Dream" and the rest is history.

Gray Family Vacation

The Gray Family vacation consisted of 16 days, 2775 miles, and 1 extremely loaded down van.

The first day of our road trip was a little rough for us. I've said it before, but I'll say it again; Caleigh will not nap in the car. It has happened twice ever...yes, ever. So to all the parents out there that have sleeping back seat passengers your so lucky. So to say that the first day was a little tough would be an understatement. I think Caleigh was expecting to be at our destination much sooner than the reality. There was a lot of crying on that first day. We left Texas and ended up spending the night in Jackson, Tennessee. It was a long day.

The second day we made it to our first stop in Avery County North Carolina. Eric and I made the same trip the June before Caleigh was born. We have best friends that live there and what better place to beat the heat than 4000 feet above sea level. Although it was "hot" in the mountains while we were there; the Gray family soaked up the coolness. We took Caleigh on hikes, scenic drives and on a tour through Linville Caverns. We took a day trip to Asheville, where everyone indulged my need to check out the local art galleries.

We had a great time visiting and Caleigh said that she really liked the mountains. Caleigh also said that she felt sad about leaving. Caleigh loves her friend Lacey. She really hasn't ever had to leave anyone for an extended time before, so it was interesting to see how she reacted.
We stayed in North Carolina for about a week and then made our way down to Florida. By this time, we had perfected the rest stop nap time. This is when Caleigh would pass out on one of our shoulders and then we proceed to wait it out. The first night out of the mountains we stayed in Auburn, Alabama and then the next afternoon made it to Perdido Key, Florida.

We checked into our rented one bedroom condo and proceeded to get settled in. We took Caleigh down to the beach briefly where she told us "thank you" and "i like it."

The second day in Florida, I drove an hour to Pensacola Beach to be a bridesmaid in my friend's wedding. Ironically enough, Eric and I booked our condo and then got the wedding invite in the mail two days later. One thing led to another and there I was standing on the beach in a sunset wedding that I wouldn't have missed for the world. It was a truly wonderful day.

The rest of the week was fairly uneventful and relaxed. The area we chose wasn't taken over by tourists, which was nice. Our days started with watching dolphins and the amazing sky line from our balcony. We followed that up by ocean swimming, then pool swimming. We would go in for nap and lunch time and then right back out to do more swimming. We usually did our eating out during lunch time and then Eric cooked some great seafood dishes for dinner. We took Caleigh shell shopping. We even tried to go jogging on the beach, but the tide wasn't very helpful when it came to Caleigh's jogger. One morning we got soaked in pouring rain on the beach. So we went back up to the condo and watched Mickey Mouse Club House.

We spent the rest of the afternoon in the indoor pool which just happened to be a life saver when Caleigh needed time out of the sun. We also went on a dolphin cruise. This was the first time Caleigh had been on a boat and obviously the first time to see dolphins. We chose a cruise that had an air-conditioned cabin so that Caleigh wouldn't get too hot. Unfortunately, there was some false advertising going on. The cruise was an hour and a half long and not air conditioned. We were miserable and Caleigh didn't think the dolphins were that spectacular. She did enjoy the boat ride though. Overall, the beach was a huge hit in Caleigh's book.

When we were packing up to leave, I asked Caleigh if she wanted to go home and she said "no." Even a few days into our routine at home and she still wasn't pleased to be back. We had to have a little talk about the true meaning of vacation.

Caleigh's first vacay was a big success. The 16 days flew by for us all. Caleigh did such an amazing job adapting to new environments and schedules. We are very blessed with her health and flexibility. We hope that this vacation is just the first of many to come.

Enjoy the Slideshow...

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