End of July Updates

The last week in July has been full....very, very full for the Gray family.

On Monday we went to the eye doctor. As you can tell by the photos Caleigh has now joined the lens wearing crowd. We think she is awfully cute sporting the new look. Biased? Probably. Caleigh's nearsightedness with an astigmatism had stayed the same. She was cooperative during the eye exam making it easier to get an accurate reading. The second opinion doctor, the Retina Foundation and now our eye doc all got the same prescription so I'm pretty confident that it's right for now. We picked up the glasses yesterday and for the whole 5 hours Caleigh actually wore them and she didn't try to pull them off. She is making longer sustained gazes and she isn't crossing her eyes as much with them on. Last night, while in her stander, Caleigh "watched" Dora for the first time. Most of the time Caleigh's TV watching consists of glances and listening. She spent a good amount of time looking at the screen. I'm seeing really exciting things with these glasses. I'm glad we did it.

We decided to get just the lenses and frames this time around. Nothing fancy. The eye doc wants to see us back in 8 weeks for a follow up and to discuss eye muscle surgery again. He's back on the surgery band wagon. If we do decided to have the eye surgery they can get a new prescription while she is under anesthesia so her prescription is likely to change. We will probably get transition lenses with the next script.

Monday night Caleigh didn't sleep at all. And by "at all" I mean maybe 2 hours. By 4am I gave up and we watched Bugs Bunny. She thought that was funny. The culprit was an irritated, raw g-button. I knew what was going on but asked Caleigh anyways. She told me using her iPad. "I feel sick my tummy hurts." We haven't had g-button issues in almost 2 years so it was a surprise. I cracked down using lots of cortisone cream, Ilex barrier cream and stoma powder. Tuesday I canceled all therapy. Caleigh and I stayed home and vegged. I basically laid around like a zombie trying to recoup. Not getting any sleep just plain sucks.

By Wednesday Caleigh's g-button felt better. We had a 10 am Nephrology appointment. Our least favorite office because it seems like we are always there for hours. This time was no different. They weren't busy, but by the time we actually saw the doctor we had waited 2 hours. He came in and hadn't even read Caleigh's chart. He asked us a bunch of stupid questions because he didn't read the chart, we corrected him and then he was gone. 2 minutes. That's the time he spent after we waited 2 hours. It's annoying. All is well in kidney, blood pressure land. Caleigh hasn't needed a dose of blood pressure medicine for months now. We don't have to go back for a year. So there's the rainbow glaring through the 2 hour wait.

On to Thursday. We had a GI appointment. Eric and his dad spent the morning trimming trees in our backyard. Caleigh had OT in the morning as well. I spent the morning running around getting ready. We made it to the appointment with minutes to spare. Caleigh's progress over the last few months has been great. She gained a tiny bit of weight. She's up to 30.4 lbs. She's getting 50ml an hour of Elecare 22 hours a day. Caleigh can be off of her feeds for 2 hours. This leaves time for swimming and shopping without a tube. We're going to go get labs this coming week because Caleigh is tired a lot. So they are going to check for anemia. We are going to hold steady on feeds and keep Caleigh consistent for the next 2 months. Then we will try to cut 2 more hours off her feeding time. All plans, but progress nonetheless.

Yesterday, Friday, we went to the library to pick out some books. We've got to have books for Caleigh's pre-school stuff and I'm so incredibly tired of reading the same stories over and over. I'm sure all parents can relate! The library was nice but of course the first thing I noticed was all the germs. A kid had just vomited inside a book, story time just ended, there were kids everywhere. We basically gelled our bodies when we left. It was a little crazy. That afternoon we picked up the glasses and went to show them off to daddy at the fire station. We came home and swam and then Caleigh headed to bed.

Hopefully, this next week is more calm. I don't think we have any doctors appointments, so that should help a lot.

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Our niece, Avery, is doing well. She isn't needing the pain meds for her incision anymore. Just Tylenol. She started chemo and radiation this week and yesterday was the first rough day that she had since starting the routine. Her treatment will last for 6-9 months. Her parents are asking for continued prayers.
Ongoing prayer needs:
-Pray for continued tolerance and efficacy of radiation and chemo- she goes daily through next Thursday for radiation, chemo is once per week
-Pray that the spot on her lung is not cancer
-Pray that she does not have LOH (a genetic component)
-Pray for them to keep their wits and stay strong and level

Potty Training?

The thought of potty training Caleigh seems a little crazy to me, but when talk of preschool started; potty training was one of the first things that I was told they would teach Caleigh. The teacher even showed me the potty area of the classroom.

It left me thinking about potty training a child with short bowel syndrome. We change Caleigh's diaper at minimum 10 times a day. Some days make it up to 20 times. Right now she is stooling at least 4 times a day. I read about other short bowel parents and how they trained their kids. It seemed easy peasy from everything I read.

So on to the next challenge. Caleigh uses a wheelchair and needs full assistance with lifting. Sitting up and balancing on a potty chair would be difficult. Caleigh uses the iPad to communicate, but we haven't exactly developed a signal when she wants to tell us something with the iPad. We give it to her....she talks. That's how it goes. So telling us when she needs to go could be hit or miss.

Last week I was ordering wipes online (we use a special sensitive kind) and the site I was ordering from also sold potty chairs. I had been investigating the different choices for a month or so, but didn't want to take the leap. When I saw the baby bjorn tall back potty chair I knew it would be a good start. So I showed Caleigh the colors online. Blue, White, Red, & Pink. I put those 4 colors in the ipad and had her choose which color potty she wanted. Caleigh immediately went for pink. I showed her the pink potty online and then asked her again for confirmation. She chose pink. So I ordered it.

When we got it in the mail a few days later I thought it would be a new fixture in Caleigh's playroom. Maybe we would sit on it. Read the book I bought. Talk about the potty. Just get used to it. I thought wrong.

Friday morning, after Caleigh woke up, I decided to sit her on the potty before putting a new diaper on her. I told her "big girls use the potty" and she proceeded to go poo on the potty. There was lots of cheering and I gave Caleigh a sticker to play with. Caleigh had the biggest smile on her face. She knew exactly what she was doing.

About an hour later I had created a makeshift potty chart and decided I better go with it. Strike while the irons hot and while she is interested. It's age appropriate, right? That first day we tried the potty several times. Every time I put Caleigh on the potty she would go. The stickers started to add up. I would put the sticker on Caleigh's pointer finger and then help her put it on the chart. She's all about the stickers. If I mention them she smiles like crazy.

So now here we are. Sitting on the potty throughout the day. Let me tell you a secret....I have NO clue what I'm doing. I have NO clue where to go from here. I basically have NO clue what I'm doing.

It's a lot of work getting Caleigh on the potty and then holding her up while she's excited. It's a lot of work wiping her tush and then getting a diaper back on her. We are still watching Caleigh's input and output. It's more work to weigh the potty cup and clean it out then just weighing a diaper and tossing it.

I've read about setting a timer. I've read about letting your child hang out naked. I just don't know what to do at this point. I know this will take time and by all means I'm not rushing things. I just need a plan to keep her interested and successful.

As of this morning Caleigh has 18 stickers on her potty chart. She's excited and we are excited. It's potty time.....Got to Go!

The ARD Meeting That Wasn't

Today was Caleigh's first ARD meeting with the school district. I've been dreading it since the evaluation a month ago. I know for a fact that I wore Eric out talking about the possibilities of school for Caleigh. About 2 weeks ago we finally made the decision to keep Caleigh at home and for me, mom, to do the preschool educating.

The fact is that we still had the ARD scheduled and a room full of people expecting to start Caleigh in homebound services through the district. So this week I called and tried to cancel the meeting stating that we weren't ready to start special ed services. We were told that we couldn't cancel and the meeting will be used to go over the evaluation. Through my research we were supposed to receive the evaluation way before the meeting so that we could be ready. That didn't happen. Strike One.

We were also told that the regular PPCD diagnostician wasn't available during the summer so another one was brought in to do Caleigh's evaluation. Later, word got to us apologizing for how unprofessional the evaluation went and that they usually don't work that way. Eric and I had no clue what to expect out of the evaluation, but it didn't seem terrible. Apparently it was done incorrectly. Strike Two.

Last night, at the last minute, the diagnostician called several times wanting to drop by our house to have us sign something. She needed to send something to our doctor to have him sign stuff for the homebound schooling. We were visiting Avery and by the time we got home it was Caleigh's bedtime. By the time I got the message it was 9pm. I can almost guarantee that the doctor's office wasn't open then. Strike Three.

Three strikes and your out, right?

Nope, there's more.

This morning was D day. The ARD was scheduled for 10:30. Eric and I decided that we would show up and basically tell them that we weren't ready to start services. Thanks but no thanks. My mom was on her way over to sit with Caleigh while we went and I had just got out of the shower when we got a call from our vision therapist. Apparently, one of the team members had a family emergency and the meeting can't legally go on without them. Totally not the school districts fault. If anyone understands emergencies it's the Gray family.

So after explaining the situation to our vision therapist she apologized once again for everything. She had also found out that, No, we didn't need to go to the meeting just to go over the evaluation. All I need to do is send a letter stating that we didn't need services right now and that we will contact them when ready. Simple. Definitely a misunderstanding that I'm aggravated about. I've been dreading this meeting, stressing out over this meeting and hating every part of this meeting since first mention of it. If I was able to cancel it a few days ago none of this would have happened. We have enough to worry about right now. Strike Four.

You would think that this is their job. Not their first rodeo. Maybe other parents let it slide, who knows. What I do know is that I am fully aware of the law. I've been reading about IEPs and school stuff for months now. Knowledge is power but at the same time it's stressful. I'm just plain exhausted.

The meeting was canceled.

So why not send Caleigh to PPCD special needs preschool?

Well, I've been reading....a lot. Books about disability, education and independence. One being Disability is Natural and another is All About IEPs. Homebound only teaching was in the works per our GI doctor. He doesn't want Caleigh to attend school everyday, 2 days a week, 3 days a week or any of the other options the school district has tried to sell us. He wants the teacher to come to our home. Our problem with homebound is that the school district will only send a teacher out 2-4 hours a week. If she was in a classroom she would get 15 hours a week. After some research I found out the school gets paid for homebound attendance with a minimum of 2 hours per week of instruction. That's what they get paid for and that's what they offer. If you achieve 4 hours, you've won the fight so to speak. But who can be taught in 2-4 hours a week?

I was told that we would have the first initial ARD meeting to set out goals for the IEP. Then we would have a second ARD meeting after all the paperwork and red tape is done for the homebound schooling to square down those original goals because the original goals would be too much for the 2-4 hours a week. Unacceptable. Then there would be a third ARD meeting if we will be asking for any therapy services and basically I've been told that those probably wouldn't even happen and if it did it would be after a long fight.

Through our reading, soul searching and gut feelings we decided to keep Caleigh at home until kindergarten. No ARD meetings, no labels, no extras. Keeping Caleigh's intestines well by not exposing her. I've found some great pre-school curriculum home programs. Caleigh would get a lot more from us to prepare her for kindergarten than she would in the 2-4 hours a week the school district would provide in our home. I'm already nerding out over it of course. Caleigh and I went school supply shopping and picked up some Posters, letters, numbers and activities.

I'm excited about our decisions even if we took the back way to get to them.

Caleigh's 3rd year is set to be the best yet.

July Updates

The past few weeks we have been squeezing in as much swimming as possible. Caleigh enjoys it, but doesn't move much on her own. She's still apprehensive of the water. We went ahead and bought a small pool for the backyard again. We had one last year too. We get out there every afternoon and Caleigh tells us that she likes to go swimming on her iPad. Caleigh's also been known to lay by the pool with her friend Kendall....

We haven't changed anything that we are doing on the iPad. Caleigh continues to use it daily and it's made our lives so much easier. Caleigh is a happier child now. She doesn't have yelling outbursts like she used to. It makes getting out of the house a lot easier. If I can tell that she is getting frustrated, we take out her talker and ask what she needs. Her favorite request for the last few weeks is "I need kisses mommy please." Each of the words are a separate choice in a sequence. I ask her to say please and she usually does. Never to early to start using manors. So we've been giving lots of kisses around here and I'm ok with that!

This past week I went and spoke to 4 new NICU nurses. As I was driving around the parking garage I started breathing heavier. The anxiety of going back was getting to me. I parked, got out and then felt better. We've been back to the NICU on several occasions and every time I pull into the garage I have the same reaction. Just odd.

The nurses had all just graduated nursing school and this was their first nursing job. I told them all about Caleigh's story. I didn't even cry when going through it. Maybe I'm healing a bit. Just maybe. I told them about positive experiences and some of the more negative experiences that we had. Overall, it was giving them a parent's perspective of the process. It was nice to give back like that and I hope to do it again soon.

That same day I went and oriented some volunteers on short bowel syndrome. I'm part of a new short bowel group through our hospital. Actually there are 3 of us trying to get it off of the ground. We have big dreams for the group. The volunteers will be watching our kids while we are having the support group meetings. Their faces were priceless while we were going through the possible outcomes while taking care of our kiddos, but I'm grateful that there are people out there that aren't too afraid to jump in and help. I was also asked to be on 2 other advisory committees through the hospital and I kindly declined. Just a little bit at a time. I'm pretty sure that would have pushed me over the edge.

I've been trying to do more age appropriate things with Caleigh lately. Playing in the cabinets. Playing in the grass. Swimming. Singing and dancing. Playing pretend. Coloring and painting. Having fun, not therapy. So far it's working. I'm happier and Caleigh seems happier.

Prayers for Avery

Thank you to everyone for their thoughts and prayers. I've asked permission to post an update so that those that requested to have more details for your prayer requests could.

Avery is our niece, Caleigh's cousin. She is a brilliant, bright and super lovable 4 year old that up until last Tuesday was perfectly healthy.

Avery's surgery on Friday, to remove her tumor, was more extensive than first thought. The surgeons, who just happen to be Caleigh's surgeons, had to remove part of her colon and they spent a lot of time peeling the tumor away from her other organs.

Avery's tumor was a stage 3 Wilms tumor. They are currently waiting on the pathology report to determine how much chemo and radiation she will need. They should get the results tomorrow.

Avery is now recovering from surgery one day at a time.

I wouldn't wish having a sick child on anyone. Not a single soul. It breaks my heart that they are having to go through this and that Avery is having to even experience everything that goes along with hospital life. Most are things you just don't think about, but everything that happens in a hospital setting has an affect on the child. Whether we know it or not, it's a very scary experience.

Please keep their family in your prayers. Add Avery to your prayer chains & groups. She is a strong little girl. Pray for her fighting spirit to shine through. Pray for a favorable pathology report as well. I would also like to ask for your prayers for Eric's parents. Not only have they been through everything with Caleigh, they are now having to walk a similar road with Avery. The whole family is hurting. Prayers for strength and healing for everyone are deeply appreciated.

You can leave comments below for the family if you wish. I'll be sure to get each comment to them.

Club

Being a parent of a sick child is a club no one wants to be apart of. Since the day we found out Caleigh would be born with a birth defect, Eric and I joined that club. I get emails, comments through this blog and calls from our doctors matching us up to families in similar situations. Our experience can help those that are new to the club.

Often I wonder if the emotions are completely different for a family of a healthy child when they join the club. Is it harder to be living your life with your typical child and then an accident or a diagnosis changes everything you thought was normal.

My first thoughts of this happened during our inaugural trip to the ICU. Caleigh had turned blue, stopped breathing, Eric resuscitated her and then there was an ambulance trip to the hospital. Once things settled down I started to look around. These kids were older and all ages. There were accident victims, chronic children like Caleigh and even babies. It was a perspective I hadn't seen before. Kids with a full start on life that were now sick and living a different world.

So it made me start to wonder about the emotions involved and the differences between those who know about the challenges awaiting them from the get go and those who are thrust into this club unaware.

When Caleigh was born we didn't know anything about her. We didn't know her favorite food, color, pj's, movie, song and we didn't know what it felt like to hold her in our arms. All we had was love for our sick baby that we knew needed us and Lord knows that was enough to keep us by her side. As she gets older and has to endure medical procedures and differences from her peers it seems harder on us as parents. When she had her central line removed, Caleigh looked right at me crying, wanting the pain to stop. It gets harder the older she gets.

When you have a child that has a brilliant personality, walks, talks and tells you daily that they love you.....I can only imagine the difficulty when that child becomes sick.

This week our 4 year old niece joined the club unexpectedly. Her doctors found a large tumor and they believe it is cancer. Friday she will have surgery to remove it. I'm asking that you Pray for the family with all your might. That you Pray for strength, miracles, a fast recovery and a complete cure.

I badly want to tell them that I understand what they are going through, but the truth is I don't. Of course we understand the process, the technical, the mundane of hospital life, but I do not understand their specific emotions of having a healthy child one day and then everything changes the next. I just haven't been there, Caleigh has always been sick. It's very different and I know that now.

The Powerchair

Yesterday our DME group came out to do a second round trial with the powerchair. This time last month when we tried it at the showroom things ended up badly. So at that time we made another appointment for them to come to us and at 10am instead of nap time.

This time Caleigh rocked it. She knew what she was doing and did it well. We decided on proximity switches and while she was trying it we had left and right activated so that she would just go in circles and not run into anything. This is probably how we will start out when we get her own chair.

The positioning wasn't wonderful in the demo chair. Her feet weren't strapped in and her legs weren't at a 90 degree angle, but positioning wasn't the point of the trial.

They did humor me and set up a joystick. Caleigh ran herself into the fireplace and started crying. I explained to her that we would use the buttons instead of the joystick and told her that I understood it was scary. She immediately calmed down and grinned.

Basically the PT from the DME company needed to see that Caleigh has the "spark" there to initiate the movement. So that she can "prove" her need to insurance and medicaid.

As far as options go...it's like buying a car and cost as much or more than the average car. More than my car for sure. The most important part was to pick a color of course! Caleigh chose popstar pink off a card with colors that they brought. We may have influenced that one a bit. It's a possibility. She will be getting the option to have infared activated. This is basically a big universal remote control. She will be able to turn on lights, ceiling fans, the tv, etc. all from her chair. It will also be bluetooth ready. This means that she will be able to use a mouse for a computer or a usb switch both for future computer accessibility. There will be different profiles loaded. One for thick grass, one that goes a bit slower for in the house, one that goes faster, and an administrative profile that will allow Eric and I to move the chair. The chair will come with tilt and Caleigh will be able to operate that by herself. I'm sure I am missing something but that's the jest of it.

We are looking at head rest options. With Caleigh's tilted head preference it makes things a little more difficult. They brought a neck support out to try with the chair and we all agreed it made a huge difference. Caleigh didn't get mad about it once and actually acted like it made life a lot easier. I would love for her to not have to wear something like that, but if it will help her independent mobility then I'm not going to let my vanity get in her way. Who cares? She's moving, she's happy...

Estimated arrival date for Caleigh's new wheelchair will be within the next 6 months if not sooner. They will also be ordering a suit case ramp for our van. This is a manual ramp that we will have to take down and put up everytime we put the 250lb chair in our van. I watched the DME guy load the chair on when he was leaving and it looked like a big ole pain. We will probably do that for quite sometime before we figure out van conversion options. We will most likely have to get a new van, but we can figure that out when the time gets here.

Here's a video of our little hot rod...

It's Gone

Our GI visit went well yesterday. A quick check of Caleigh's stool showed no signs of blood. Then we talked about the positive fluid balance and since Caleigh has been extremely consistant over the last month there really isn't anything to worry about. If you add up drool, sweat, and respirations then the "invisibles" get us closer to the input number. No worries.

Caleigh doesn't need another vitamin/mineral panel for another 3 months and weekly labs have been canceled.

The next step in Caleigh's feeding progress will be to slowly go up to 50ml an hour and then turn off her feeds for 2 hours a day. 2 hours without a tube is a start.

Then we talked about the central line. Do we need it? Well, no..actually. It's more of a risk to keep the line just because we "may" need to draw blood for some reason. It's more of a risk to keep line "just in case" something happens. If we keep it then Caleigh could end up with an blood infection, in the hospital, her bowels would shut down due to the stress on her body and then she would have to start all over with TPN from square one. Not worth it.

So, this morning we had the first appointment at our surgeon's office and he removed the line. The central line removal was more painful for Caleigh this time around. The cuff came out with the line which sometimes happens, but made it more painful. Caleigh cried a lot and I felt terrible for her. Our surgeon also had to use silver nitrate on some granulation tissue that had formed around the line. It hurt Caleigh pretty bad because it basically burns the tissue away. The skin where the dressing and tape covered the line is completely tore up. Poor baby's skin is so sensitive. Hopefully getting some air on the skin will help the healing. She calmed down fairly quickly after the main event was done. We chatted for a little while and then headed home.

Caleigh told us a few times on her iPad that her chest hurt. It's already really bruised. We gave her a dose of Motrin and that seemed to help. We haven't done any heavy therapy today and have tried to keep her off her chest.

Swimming orders were to wait one day and then go for it. So this afternoon I went and bought Caleigh a bathing suit. Maybe she will get to do some Fourth of July swimming if she's up to it.

The first time Caleigh had her line removed I think I was naive to think she would never need TPN again. Maybe it was a positive outlook...who knows? This time around we pray it is the last time, but I won't be so green to think it could never happen again. Cautiously positive. I do know that 5 months with a central line was much easier than the first 18 months with a central line. Maybe each time and each year the time will be shorter, the need will be less.

Overall, today was a good day.

Painting

Yesterday we decided to paint with Caleigh...or let Caleigh paint however you look at it. We've been using the stander's tray as an easel lately. Painting, Coloring and playing with foods. It's been wonderful and Caleigh seems to really like it.

In the process of painting, Caleigh created a card for our GI nurse. She's leaving the office next week for a new job. Greener pastures and less hours...who wouldn't? She's been with us from the beginning. She is my 'go to girl' when things aren't getting done. I talk to her at least once a week and on hard weeks sometimes I will talk to her daily. She calls to check on Caleigh when she's not working and she always calls to check on us when we're in the hospital. She is truly a caring soul. I'm sad, we will miss her greatly.

It's been raining for the last couple of days and that makes the temperatures a little more bearable. Last night Caleigh and I were sitting in our rocking chair on the back porch watching it rain. I was talking about the rain and how it felt wet. Where rain came from, etc. Then we danced in the rain. Briefly, but Caleigh felt rain on her skin. We stepped out into the rain about 3 times, danced around and then headed inside. Caleigh was a bit startled each time the rain hit her, but didn't get upset. Then I asked her on the iPad if she liked dancing in the rain and she said "i don't know". Then I asked her if she wanted to do it again and she said "no". At least she knows what it feels like to dance in the rain now.

Today is our GI appointment. We have a long list of questions to ask and hopefully we will get some sort of plan out of the whole deal.