Baby Teeth - Stem Cell Miracle?

This sounds amazing. Now all we need is a brilliant scientist to make it happen! In the grand scheme of things that are costly for special needs children, this sounds like a painless, and honestly cheap way of helping our kids. I'm completely sold. What are your thoughts?

Wordless Wednesday

Caleigh and Kendall = Friends

The Institutes in Review

It's ready!
My review of The Institutes for the Achievement of Human Potential is finally done....

For all of you interested in the summary you may email me at

hollydgray@sbcglobal.net

to receive your copy

I decided on the email method because frankly it is far to much information to put in one blog post. So don't be shy, send in your request and I will send you the info. Also, if you have any questions you may email me directly.

Here's some photos from my trip to Philly. There's not much and actually these are all from the first day. Being in an auditorium for 12 hours doesn't leave much time for picture taking!

Click on the photo to view the entire set....

Switches. Laughs. Sitting. Rash.

Here's Caleigh with a loaned switch toy. She pushes the koosh ball and the things in the clear dome fly around while music plays. She really enjoys it. Since Caleigh has trouble with her arms and hands typical toys don't always work for her. These switch toys allow her to work on cause and effect. You can find more switch toys at Enabling Devices.

The special tomato chair that she is sitting in seems to be our battle ground when it comes to tantrums these days. We are trying to get her used to it for future feeding and general play. Now, in that picture she looks happy and yes some times that is how it is, but the majority of the time she hates it. So the plan with tantrums is this:

me: "Caleigh, no crying"
C: {screams}
me: "No crying"
C: {cries}
me: "No crying"
C: {Silence}
me: "1,2,3,4,5"
starts to undo harness
C: {screams}
me: puts harness back, "Caleigh, No crying"
C: {Silence}
me"1,2,3,4,5,6,7"
starts to undo harness...gets Caleigh out of chair while she is quiet

Alright, that is the super short version, but it is working. She understands that she has to be quiet to get out of the chair. We went from and hour and a half of the back and forth to about 15 minutes and at home it takes less time. Again, it is a wonderful thing that Caleigh has learned how to manipulate to get what she wants, but goodness this kid has stamina...

This past weekend I tried the half Neocate half Elecare formula to see if Caleigh felt any better on it. After 3 feedings she got a rash on her face (above) and a diaper rash. She also became immediately gassy. So we stopped the Neocate and continued on the Elecare. We took her into the GI on Tuesday and nothing was really accomplished. We made an appointment with an allergist and that isn't going to happen until the end of August. So the plan for right now is no food and stay on the Elecare until we know what exactly she is allergic to. I still think she is having a reaction to the Elecare but it isn't as severe as on other formulas. We looked at all of Caleigh's supplements and the Nordic Naturals Cod Liver Oil that we give had a warning on the label about it being processed on the same production line as milk products. We stopped giving it 2 nights ago and Caleigh has slept through the night since. Maybe a coincidence, but maybe it was really irritating her. Who knows with our chubby cheeked puzzle?

Caleigh's strength seems to be coming back since being sick and in the hospital. I've caught her wiggling on the floor again and she has enough strength to sit. She isn't sitting as long as before, but she seems a little more balanced. Caleigh is also putting her hands and arms out to catch herself when she starts falling.

We are off to speech therapy...Nephrology appointment on Friday and a busy weekend ahead.

Dentist, Allergies & Tantrums

We have been very busy. It seems like things just aren't going to slow down.

Last Friday we took Caleigh to the pulmonologist (lung doctor). We haven't visited since last October, right before RSV season. Things are good lung wise. Caleigh has a very fast and shallow respiratory rate. Resting rate is 60's-80's and that is high. She doesn't breathe with her chest. She mainly belly breathes. This is because of her lasting abdominal distention. Even though her belly looks a ton better....she learned to breath this way and it is what is most comfortable for Caleigh. It doesn't concern her doctor so it's not a problem. We went down and got a chest x-ray to check on Caleigh's lungs and to also have a base line picture just in-case she gets sick this winter. There have always been signs of chronic lung disease due to her time on the vent so our doctor didn't want anyone in the ER freaking out if we showed up and her x-rays looked weird.

Monday I went to our local Early Childhood Intervention office and spoke about my experience with The Institutes. Apparently I had a lot to say because I talked for an HOUR! So, I am currently trying to figure out how to condense that for my blog readers. So look for that coming soon.

Tuesday was the start of Caleigh's terrible 2 tantrums. She is now voicing her opinion against her therapist on a daily basis. It started with speech on Tuesday. By Wednesday she was screaming at her PT and just this morning her vision therapists got to hear her loud dislike of them being in our home. I'm hoping this is just a quick phase. She used to do so well with therapy and I think it is so beneficial. Granted, this resistance is a wonderful sign that she is cognitively where she should be, but therapy is so important. So I will type it again...maybe this is just a Quick phase. How long do those 2's last?

Wednesday brought along Caleigh's first dentist appointment. I've been worried about Caleigh's teeth for some time now. Her TPN dependency, antibiotic use, seizure medications, tooth yellowing, teeth grinding and the general delay in actually cutting her teeth have been worrisome. I love the dentist we picked. He knows all of our doctors and spent a lot of time with us. He briefly looked at Caleigh's teeth and said that the discoloration looks to be on the surface and should come off with a cleaning and polishing. He isn't worried about her grinding her teeth either. I can't say the same for me.....it totally grosses me out....uh! It may in fact be her allergies and her wanting to clear her ears. He actually said that he is glad her teeth have come in at a delayed rate because they have avoided a lot of the damage from all her medications. We have the cleaning appointment in 3 months and I actually feel relieved that all my questions have been answered. It's all done now and Caleigh got a new rubber ducky out of the process.

Now for the new....gonna drive me crazy diagnosis. Allergies. We finally got her blood work back on basic food allergies and she's got them. It came back with a severe reaction to cow's milk, soy and peanuts. Just when I thought we were figuring things out, we get a hole in our loop. So what does this mean? Well, I think our first step is to go see an allergist and test for a broad range of things so that we know what we are dealing with. Caleigh is currently on Elecare formula and still has blood in her stool. So after looking at the Elecare I see the 4th ingredient is Soy Oil. So after some research and talking to our GI nurse, it shouldn't be a problem. Shouldn't being the key word. Apparently it is so processed that the formula is still considered hypoallergenic. This morning, after comparing formula cans (we have every hypoallergenic formula you can imagine), I found that ingredient wise Neocate Jr should be the best bet for Caleigh. So I'm going to slowly add the Neocate until Caleigh has transitioned over and then we wait and see how she does. Maybe all the retching is from her allergies? Maybe the teeth grinding? Maybe this is why she stopped eating by mouth? I was giving her Peptamen JR, which has a milk protein. I was giving her anything we could get her to eat! Yogurt....soy pasta.....cheese and the list goes on and on. I guess she finally just shut down and couldn't take the irritation anymore. Did you know that beans are legumes and are closely related to soy! The list of NO's is getting long. So yep, it's complicated and annoying! I knew she was having issues with milk, but add soy and peanuts and who knows what else and we have major issues. I'm sure we will be learning more soon.....

Here's to a relaxing weekend!

Blogoversary #2

Happy Blogoversary! Two years and counting....

I could spend this time getting all nostalgic over the last 2 years or I could show you a video of Caleigh in her pool.....

ok

pool it is!



please ignore the crazy 'momish' person making silly sounds and talking in a weird voice!

Making a Living, Blog Style

This morning, after my hot cup of fully caffeinated tea was ingested, I started watching Good Morning America. They had a segment on mommy bloggers that they kept teasing so I stuck around to watch. When it came on they were discussing with a mom bloggess the fact that companies send her money and products to "review" their items. This isn't a new game, but maybe a new audience. So the thought is...if you are paying me to review your items.....uh...don'tcha think I'm going to rave about the said item? No brainer here... So then they had on a mommy blogger who has been blogging for about 8 years over at Dooce. She's been through post partum depression, lost her job and numerous other 'mom' issues. She's done all of this without selling out to review products or places. What she has done, and I think it is fantastic, is to sell ad space on her website. So much so that her husband was able to quit his job and Dooce, the website, became their family biz.

How do you do this? I really want to know? I daydream about my next blog post. Going through the details, almost proof reading in my head. I share feelings and thoughts and milestones. Why not make a living being Caleigh's mommy? I already feel like her doctor, nurse and therapist! Is this being a sell out or doing what I love? I would encourage the medical community to get involved. AMT Mini One Button, Benik, Elecare, Mepilex Foam Dressing, Special Tomato, Waterway Babies, Child Rite Chair......you name it we use it so why not advertise things like this to moms who really need it. Of course, I'm perfectly open to advertising anything as long as it's an income! I do have the BlogHer Network on the left hand side of the blog and so far it brings in about $25 bucks a month. Nothing to quit a day job over. I know I don't have near the readers that Dooce has, but we really could be making more. In one month, Caleigh's blog gets about 5000 views. So how do I cut out the middle man and take this thing big? I am now fully committed to the blogging world and honestly we ain't going anywhere. Do I have any takers? Any advertisers out there lurking around? Wanna pay for a spot? Any advice for someone trying to figure this out? Looks like I have a lot to think about....

Watery Wednesday

Looks like little Miss Thing might have adjusted to the idea of pool time fun. Maybe.


Once again, here's where we got the amazing neck float....
Waterway Babies

4th Recap + The Van

We had a great 4th of July this year. Flash back to this time last year and we were being discharged from the hospital, after a month long stay. So our festivities were pretty much nonexistent in 2008. So this year already had a huge advantage as being the best 4th of July ever for Caleigh...

We started the morning with a parade. Apparently, the largest 4th of July parade in Texas, but I'm just going off of what the announcer said. She also said that we participated in the largest National Anthem in the World....I don't know about that one.

Caleigh did well. We picked out a great shade spot by the firetrucks. She loved the high school bands the best, smiling as she heard the drums bop by. Caleigh lasted about an hour and a half and probably would have lasted longer, but we decided that our shade was going away and the temperature was going up so it was a good time to split. We headed home and took our naps.

After we were well rested we headed over to Kendall's house to say hi on our way out to Eric's Aunt and Uncle's house for their annual 4th party. Visiting with everyone was a lot of fun. Caleigh was ready for her usual bedtime at 6:30 though; so we had to go home fairly early. Eric and I got her down to bed and then spent the rest of the night hanging out in the pool listening to illegal fireworks cracking in the distance.

A busy day, but it was really a holiday to remember. Caleigh did really well with all the noise and shuffling back and forth between people. We really couldn't ask for more.

~~~~~~~~~~~~
The Van

Back in May, while away at The Institutes, Eric decided to sell my beloved car, Rolla the Corolla. Now, it wasn't like I didn't know it was going to happen. We had talked about it. Noting the need for something 'larger' because it was getting increasingly difficult to maneuver Caleigh in and out, and don't even get me started on packing all of her 'to go' items in my beautiful white cloud on wheels...
Just our luck, Eric's parents were ready to buy a new vehicle and they happened to own a bright, shiny and large mini-van. Yes, you guessed it...we are the proud owners of a baby blue Chrysler Town & Country. Equipped with a removable 3rd row seat and enough space for me to put Caleigh in her car seat without hitting her head or mine. Both the umbrella stroller with Special Tomato seat installed, and our BOB jogging stroller slides right into the back without even collapsing them down.

I was welcomed home from Philly by this baby blue miracle. Granted I was and still am saddened by the loss of Rolla, but honestly everything else in my life has changed...why not my ride too?

A sweet Chinese family, who had only been in America for 5 months, bought it. They live about an hour away so there is no fear of accidentally running into my dear sweet Rolla. I hope they are truly enjoying my 40 miles per gallon dream of a ride....

Ok, yea my coolness, at the ripe age of 27, is forever gone with a fleeting moment. Not that I was ever that cool anyways. The amount of space in that big blue bird makes up for it. We are very grateful to have the van and honestly I'm not sure how we made it without it. I am now a mini-van mama in the market for a set of those forever stylish stick figure families that you can view on only the coolest of mini-vans. And yes, I will forever be nostalgic towards my Rolla.

Hope

I woke up this morning with thoughts of Hope*. Hope is a little girl from my past. The only person in my entire life that had special needs. I take that back...I had a great uncle who was blind and lived well into his 90's, but we didn't visit much.

Hope entered my life when I was 16 and working at a local daycare. She was there for the summer and honestly, to me, she was the little girl in the wheelchair. I was in the infant room at this daycare so I didn't have much contact with her. She was actually with children her own age which I now know is something very rare for a child with special needs.

I lived in a small town. I saw Hope often. At the store, at the gas station she was hard to miss. She was the little girl in the purple wheelchair. I tried not to make eye contact out in public, but always paid attention to her at the daycare.

A few years later a good friend got me a job at a local nursery. It was a koosh job and it paid good. Two days a week taking care of sweet babies for a few hours. I've always been the one to love babies. I would search them out and annoy their mothers with cutesy baby voices and I would often times touch the babies. Huh, if I had only known how it made the mothers feel...

My friend had been working the nursery for awhile before I arrived. The first Sunday I worked, there she was. Hope. The familiar purple wheelchair with the smell of summer and hot, sweaty plastic engulfing it. The easy to cut and take care of, chili bowl hairstyle. She was probably 8 years old at the time. The way she scissor kicked her legs. The fact that cognitively she was around 6 months old. The fact that we had to change her diapers. The fact that she wasn't in a room with other 8 year olds, but with babies. The way that she would yell if she disliked something and scream with a big smile on her face when she was happy. I now understand a lot about her cerebral palsy. Not because I had asked her mom, but I now recognize the characteristics she had. In fact none of us had asked what happened to Hope. There were rumors of a delivery medication accident, but I don't know if it was true. I never asked and for that I feel like I robbed her mother of something. I'm not sure what but why should Hope's life have been so secretive. Sure she was difficult to understand , but I eventually could read what she needed. We talked to her mom more on a casual basis when she would drop her off and pick her up. Nothing serious. Without knowing all the details I really connected with Hope. Overall, I came to love Hope over the many years that I worked in the nursery.

Which brings me to the instant, the exact instant, that the NICU doctor told me that Caleigh had PVL and I asked "What does that mean" and he muttered the words Cerebral Palsy; my brain went straight to Hope. She was my poster child for CP. She was the only person I knew that had it. I was so naive even then. I pictured my little 4 month old Caleigh scissor kicking her legs, sprawled out on the floor mouthing a toy made for a baby. I don't know if this made our news more tolerable or worse to swallow.

I am not telling everyone this story so that you feel sorry for Hope. She is a bright and beautiful little girl who is really just amazing. In fact, so amazing, that she will forever have a spot in my heart. I guess I just felt the need to put my feelings down. I have a lot of regret about the things that I've said and thought towards those with disabilities in my past and Hope was no exception. By no means was I a horrible person, but either way I feel bad. It's true that you don't know how a person feels until you've walked a mile in their shoes. I've been thinking about Hope ever since that fateful day in November of 2007.

It's been many years since I've seen Hope and her mom. She's bound to be a teenager now. Not the teenager her mom imagined her to be, and I wonder how she feels about that. Actually, every single milestone or decision we make with Caleigh; I always think of Hope and her mom. Maybe at some point we set aside our goals and dreams for our children and make new ones because that is life and that is what has to be done. I haven't given up on my dreams for Caleigh yet. I still have visions of the 'normal.' I wonder when that changed for Hope's mom. When did you decide to make new goals and dreams for your child? Or do you still have visions of the 'normal?'

*names have been changed to protect privacy