Made of Gray

Medical Update

Spring 2017

Raising the Rare ChildHolly D. GrayComment

How can it have been six months since I last posted? Maybe this is the season of Caleigh's blog? Maybe this is the growth and privacy we all crave in an over saturated internet life. 

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The truth is that graduate school is more responsibility, time commitment and emotion than I had envisioned. After completing the first year of my MFA program, I left for 16 days in Italy. I wrote a proposal and it was accepted giving me the grant money to travel with. I've never been away from Caleigh that long. Cue the Mom guilt, but it turned out to be a magical trip with art history, gluten free food, architecture and cultural growth. I took more than 2000 photographs and I can't wait to edit them. With amazing supports here at home, Caleigh did great while I was gone. We are so lucky to have a team of people in place that care about her wellness and happiness the way that they do. 

Now for the updates...

This April we traveled back up to Boston. The CAIR team loved how well Caleigh is growing, absorbing nutrition and thriving. The short bowel syndrome surgery of last summer continues to be a success. Our memories are fading and life is continuing to move on from that time. Caleigh still takes a one week round of antibiotics for bacterial overgrowth every month. They've cut her calories by 5% and have suggested trying to wean her off of the Nexium. We haven't started the wean, but summer looks like a nice place to start. 

Endocrinology is still watching Caleigh's growth, bone health and puberty with no changes. 

We saw orthopedics in Boston for the first time this April. We've known that Caleigh will need hip surgery for several years now, but we wanted a second opinion on the procedure. What we discussed varied from the options here in Texas. We have an appointment this June with our local orthopedic doctor to go over the differences and help us make a decision on the location of the surgery. Boston would look like a month stay and home, well, it would be at home. It was suggested that the surgery be complete within the next 6-9 months. 

That's Boston. We went to a Red Sox/Cubs game while we were in town. The weather was perfect while we were there and Caleigh loves traveling to Bean Town. She loves talking about Boston and it truly is an adventure to see her doctors. She doesn't dread it and neither do we. It's a warm comforting feeling. 

Fun highlights that have happened since December:

1) Caleigh received her second powerchair. This is the M5 Corpus. It's fancy, smooth and fast. It had been 7 years since Caleigh got her first chair. We had so many issues with joystick access and over the years tried many different solutions without much success. The new chair has its own challenges so far, but Caleigh loves to move on her own no matter what that may look like. We even have a large hole in our wall courtesy the new chair and its 9 year old driver. 

2) Caleigh played Miracle League baseball again this Spring. I have a feeling that this will be a constant in our lives for a long time. She loves everything about it except the sun in her eyes. 

3) This winter was illness free! We had such a mild winter here in North Texas and Caleigh stayed well the entire time. 

4) Caleigh continues to go to horse riding once a week and Dad has really picked up the transportation and volunteering portion of that activity this year. Go Dad!

5) We wait, discuss and hold our breathe on legislation, current bills and our crazy healthcare system. Big changes started back in November with Texas contracting out children's Medicaid. It's been nerve racking to think about. Trump's proposed Healthcare bill that passed the House would be devastating to Caleigh's medical care, but I try not to think about it everyday. We will take it as it comes. We've experienced cuts to Caleigh's MDCP budget, and therapies so far. I'm hopeful that more doesn't come our way. 

Things have moved fast and typical with no hiccups during the first part of the year. We're sticking around the house this summer working on projects, swimming and relaxing.

I'll say it again on here, but Instagram is my method of social media. A quick photo of our girl or anything art related seems to be what I can put out there right now. Two years and counting until my degree is complete. 


ONE DAY

An ongoing series of waste collections from medically fragile individuals over a 24 hour period. 

Last Fall I started the One Day Project. I'm asking those of you with medically fragile children or family members to collect the waste from a 24 hour period and send it to me. With this shipment I then curate a photograph and installation. I will send you a print of your One Day and postcards that can be mailed to anyone you chose including your representatives. My goal with this ongoing project is to have hundreds if not thousands of these portraits. Please visit my portfolio for more information on collection and shipping details. 

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Fall 2016

Raising the Rare ChildHolly D. GrayComment

August...September...October...November...December...

My first semester as a graduate student was intense, but so completely rewarding. The extra time that I had outside of school was spent with Eric and Caleigh. Updating the blog came in last place. I didn't learn to balance my time or learn how to do it all and I imagine that I won't figure that out in the next three years. I've learned so much about myself, my artwork and how that relates to my advocacy. I've made some lifetime friends and colleagues that just get my quirky artist ways.  

Cinderella via madeofgray.com

September was spent with a home nurse that wasn't a good fit for Caleigh or our family. She was there because we needed her there during my first month of classes. I honestly don't remember a lot about this time other than a terrible sense of mom guilt and an unhappy Caleigh. 

October brought us Caleigh's new nanny. The transition was a rough one due to the habits of the previously mentioned nurse. Nanny R has a child development background and stuck to her guns. It took a good two months, but they're now in a great routine. Caleigh dressed up as Cinderella for Halloween. She's loving the live version of the classic tale. There was glitter EVERYWHERE and I'm still finding it. My mom guilt lessened by 75% in October. Lets be real... it never really goes away. 

November is when I really dug in and started working on my art and not just spending my time on the bureaucracy of grad school. We took Caleigh to see Dr. Yngve in Galveston for a follow up visit. She was due for this back in June, but we were in Boston and a little preoccupied then. Caleigh's hips are exactly the same as last year. He suggests waiting another year for any decisions on hip surgery since she just had huge surgery this summer. We're good with that. We'll see the CP clinic in Boston next time we're there to get another opinion as well. Post-op for that kind of surgery will require several days in the ICU. So we want to make the right decision as to where. 

We put in all the paperwork for new manual chair seating and a completely new powerchair. We received the toilet chair that we ordered back in March. It's making life so much simpler and definitely safer. Since returning from Boston, Caleigh has really grown. It feels like we are needing to adjust and order everything new. 

December has started. How on earth are we already into December? I finished my first semester, I survived and I'm loving it. Caleigh had an appointment with her orthopedic doctor locally and he agreed on everything Dr. Yngve suggested. We've been in contact with Boston since we got home. We'll be planning a trip up in the Spring. Caleigh now weighs 57 pounds and is 45 inches long. Almost 4 feet tall! I'm 5 foot, so....

More to come in the next week!

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2015 Wrap-Up List

Raising the Rare ChildHolly D GrayComment

I tend to like lists and with the start of 2016 already underway; making a list seems to be a quick way to look back on our crazy year. 

1. 2015 was the year that we transitioned Caleigh's GI, Surgery, Endocrinology, Genetics and Hematology care to Boston Children's Hospital and traveled there three times. April, June and September. The tug of war with nurses, doctors and insurance has been enough to make a baby cry. The decision to rearrange her care was completely worth it. Caleigh grew 3 inches and gained 12 pounds this year. After three years we finally needed to buy new clothes. She looks healthier and well traveled. 

2. This month marks one year since the arrival of Caleigh's amazing Nanny. She's had her own wild and crazy year, but Eric and I seriously wouldn't have made it through without her. She treats Caleigh like the stubborn 8 year old that she is and I love it. We simply adore her. 

3. Eric was hit by a pickup truck while he was riding his bicycle in March. He went through shoulder surgery, months of PT and ended up missing a ton of work. His dear Bianchi bike was totaled and he has yet to grudgingly pick a replacement. His physical self is on the mend and we are hoping that his bicycle luck gets better in 2016. 

4. On top of our crazy travel schedule back and forth to Boston, Caleigh outgrew most of her adaptive equipment. Her manual wheelchair, bed, shower chair, and AFOs seemed to be the hardest hit. She received a Tobii Eyegaze communication device this year too. I'm hoping to do a review and introduction to all of the new goods in the coming year. 

5. 2015 brought Caleigh's 8th birthday. Eight beautiful years for our girl. 

6. Randomly enough Caleigh broke her nose in October during a bike riding accident. Her nose healed nicely with no complications. Bicycles and our family took a break for the rest of the year.

7. Caleigh was the flower girl in her Uncle Heath & Aunt Joeli's wedding in November. She did a great job and the wedding was beautiful. Dressing up and partying is definitely Caleigh's thing. 

8. At the end of November, I resigned from my position as social media and marketing manager at NICU Helping Hands. After being with NHH for almost two years, it was an emotional decision that came down to my self care. I love what I did, all facets of it, but my soul needed a break. I came to a point where I really couldn't do it all. There is no balance when something has to give. 

9. During the break down point, I started seeing a therapist for the first time since Caleigh was born. Long overdue. Finding someone that not only listened but offered solutions was the key. I was diagnosed with PTSD which really wasn't a surprise to me. Que sera, sera. 

10. 2015 was a challenging year for Caleigh's behavior. I feel like we've made a break through with our strong learner, but each day offers a new testing opportunity. More days than I can count involved screaming and tantrums. I'm hoping my renewed focus on family will be the consistency that she needs in 2016. 

11. We started 3rd grade in the fall by slowly moving through the curriculum. Again, with me being home more with Caleigh and her discipline on track; I hope to pick up the pace with our year round homeschooling. It was definitely a struggle in 2015. 

12. 2015 was the year for me to start showing my artwork again. I was chosen to be in three gallery shows. One in Fort Worth, Dallas and one in Tennessee. It was a nice jumpstart into making art with a purpose. You can read more about my current body of work here

13. We were able to finish up the construction and remodeling of our home. Caleigh has wider doorways and not an ounce of carpet left in the whole house. Life with liquids, spills and accidents is SO much easier. We're even missing some popcorn ceiling texture. Now for that master bath... 

14. 2015 was the year that Caleigh decided that Santa isn't the real deal. It made me feel pretty sad, but it's another typical milestone that is to be expected. Merry Christmas. 

15. Eric turned 35, I turned 34 and we celebrated our 15th wedding anniversary. When I think about being in my thirties it feels like an outer body experience. Like I'm watching future me. This is obviously because I will forever be and feel 26.  

For 2016, I'm clearing my head and heart. I'm going to care for myself, and my family with no regrets. 


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Hello Boston - Boston Children's Hospital Update

Raising the Rare ChildHolly D Gray2 Comments

We are now home from our week long trip to visit the CAIR team at Boston Children's Hospital. I am now properly medicated with steroids, antibiotics and a hopped up version of decongestant that is supposed to be healing my massive sinus infection. I don't have a voice at all so writing it will be! 

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We were in Boston for a week this time. Each weekday we had appointments at the hospital and spent more than half the day there. The rest of the time we were on the move sight seeing, dealing with behavior issues that would rival any toddler you've ever seen and eating all the good food we could find. 

Since this post is about the medical updates and specifically what we found out for Caleigh, I'll save our Boston adventures for another post. 

The first appointment was with the CAIR Clinic (Center for Advanced Intestinal Rehab.) This team is the reason for transferring Caleigh's care to Boston and we still love them and their ideas. The are very impressed with Caleigh's growth. She has gained 10 lbs, up to 48lbs, and grown to 3ft. 7 inches since the end of April. She is still small, but now back on the growth charts. If I remember correctly 3% height and 30% weight on the chart. So the plan is to cut back her calories and slow the growth down a bit. We will check her weight locally in a month. 

Caleigh has been urinating a lot since we went up on fluids and calories. We are basically in the restroom every 30 minutes to an hour and if she has an accident she gets very upset about it. Like screaming bloody murder anywhere we happen to be. This includes public restrooms, parking lots, therapy clinics... anywhere. We are going to cut out one pedialyte bolus in the morning to see if that helps. So far it hasn't slowed down though. They checked her urine to make sure there wasn't any glucose in it and it came back fine. There was a trace of protein so we did another urine sample several days later to recheck the amount and right now there isn't enough protein to cause concern. Something to watch. 

The CAIR team ordered a Dexa Scan, which is a bone density scan, and we did that the following day. Overall I'm glad we made the trek to the clinic again. 

The next day we had a genetics appointment. This was our first visit to this clinic. We really liked the doctor. We talked about Gastroschisis, family history and anything that might be lurking in our DNA. She told us that they feel like there may be some "traits" that are linked to couples that have a baby with Gastroschisis, but they haven't found any genetic markers "yet." For couples that have already had a baby with this birth defect the chances of it happening again are raised 2.75% on top of the 1 in 1683 births (in 2009) based on the Texas Gastroschisis rate. This rate is higher than most other states in our country. This throws in the environmental factors and I wont get into that here. So you can do the math, but the chances are it could happen again and I know several families that hit the jackpot more than once on this. 

She ordered labs for a rare cholesterol depletion disorder. This genetic syndrome tends to lend itself to birth defects and certain characteristics that Caleigh has. She was doubtful that Caleigh has this, but wanted to do her due diligence.  So I'm not going to get into specifics until the tests come back in a few weeks... hopefully negative.

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We took the weekend off to run around the city and as you can see in the photo above Caleigh is in an umbrella stroller. This is a whole crazy story, but we have been working on getting a new manual wheelchair since March and insurance has denied it twice so far. We are working on the third appeal and I feel like crying about it everyday. I also feel like taking my child that is falling out of her current chair to the person making that denial and showing them the impact it is making. The new chair is 5-6K so I get it, but she has outgrown her old one. There is no repair or fix for a kid out growing her chair. Ok, off the soapbox. Hopefully, we will get this pushed through.

On Monday we had an appointment with Endocrinology. We are watching Caleigh's premature adrenarche and so far it isn't progressing to puberty. During this appointment we got the results of the Dexa scan. This is a full body scan that measures bone density. The reason behind checking Caleigh's bone density is her past nutritional deficiencies and the healed fracture that was found in her femur when she was in the NICU. Also, this is a common test for people with cerebral palsy because of the lack of daily weight baring. It turns out Caleigh's spine and hips are the worst of the measurements. She's always had the diagnosis of osteopenia but this moves her into osteoporosis zone. Essentially this means that fractures can and probably will happen. I find this pretty scary and it was something I had in the back of my mind but wasn't expecting so soon. I think the spine part really surprised me. I'm pretty bummed about it. This throws kinks into Caleigh's future hip surgery or any surgery she might have. It's more to think about and plan for. 

Our CAIR team ordered more lab tests like vitamin C and D. This is a good baseline and the chance to up Caleigh's supplements. The endocrinologist told us that if Caleigh starts puberty early it wouldn't be such a bad thing because the increased estrogen would actually help her bones. Other than that endocrinology is in the wait in watch mode. 

Early Tuesday morning we had our last appointment of the trip with the tube clinic. For the past six months we've had major issues with Caleigh's g-tube site. It's been terrible. Constant leaking around the stoma, skin breaking down, yeast and then random days where it was completely dry and fine like nothing happened. A lot of it has to do with intestinal motility, but as long as it was leaking or pouring stomach acid around the stoma there wasn't a chance for the weeping skin to heal. When we got to the clinic they were impressed with everything we were doing to try to heal the site and on that day the site looked good. I brought photos of the skin break down, oral thrush and pictures of her bed soaked in Elecare and stomach contents. They offered to hire me to do button care in the clinic, but I declined... Boston winters aren't for me. 

The nurse measured Caleigh's stoma at 1.5cm. Her button was an AMT Mini One Balloon Button 2.0cm 18 french. So we changed it to 1.7cm 18 french and switched to a Mickey Balloon Button. We've used the Mini One for years because it is much smaller, but the hospital only stocks Mickeys. I'm ok with it for right now. It's much larger than the Mini One, but the leaking has slowed down to a crawl and the tenderness is decreasing. We added some extra steps to our arsenal and if they continue to go well, I'll do a post on our routine. The clinic was a success and really made the whole trip. 

So as of now we are waiting on lab work to come back from genetics. Next week we will make a plan for upping vitamin supplements that will support bone density. Right now it looks like we will be going to Boston every six months, so twice a year as long as things stay great. Cramming all of these visits into one week is actually pretty brilliant. Clustering the care helps the different departments work together as a team. It's also very exhausting for the family. Overall though, this was an informative and helpful trip. 


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