Made of Gray

Medically Fragile

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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Breaking the Streak -- A Night in the ER

Raising the Rare ChildHolly D GrayComment

This past week took us down an old road. It took us to back to the emergency room, a large abdomen, blood in the stool and the realization that making even the tiniest of change to Caleigh's regimen would land us in a place we didn't want to be. 

Last Thursday we picked up and started an increased dose of compounded sulfazalazine medication that Caleigh takes for ulcers. Boston needed to increase the dose for her weight and they wanted to give it to her in liquid form which she would absorb better. We went back and forth with our pharmacist about what the compounded solution couldn't have in it. It was clean of things that Caleigh hasn't tolerated in the past. So we started it. 

One day later, May 8th, Caleigh wasn't feeling great. She had a small amount of bright red blood in her stool and her tummy was getting bigger. We had labs and a urine sample to complete that afternoon anyways, but I called Boston to tell them what was going on. We decided to stop the compound and go back to our regular dose and powder form. They also wanted Caleigh to be seen by a doctor just in case. No one in our GI office would call Boston back and our Pediatrician, who has been great with the transition, said she would see us. Looking at the time though, 4pm on a Friday, she decided to send us to the ER where we could get all the testing done in one place. 

So we went to the ER. We broke our streak. Caleigh hasn't been in the ER, much less the hospital since February 2010. It was a long break and after being in there for a ridiculous six and a half hours we remembered why we avoid it at all costs. Going to the ER was silly really, but I understand that Boston doesn't know Caleigh and they can't take any chances being so far away from us. It took three sticks for an IV just in case she needed fluids, which she didn't. X-rays were fine and so was blood work and urine. We got home around 11pm that night. 

The next morning Caleigh was really sick. Not tummy sick, but definitely head cold, flu-like virus... not feeling good. She slept upright next to me in the recliner most of the day. We slowed down her feeds, rested a lot and dumped tons of saline in her nose to keep things loose. Thank goodness our girl blows her nose like a champ. 

By Sunday she was much better and the one time blood in the stool didn't continue since we stopped the newer version med. It was all just a coincidence of events which is usually Caleigh's style anyways. She gave Eric the bug by Tuesday, I got a few days of nausea and exhaustion and we all continued to generally feel terrible most of the week. 

Boston has decided not to make any other changes other than increasing calories before we head back up to see them. They (and us) don't want to be sitting in the ER and back tracking until we see them again. We're not rocking that boat. 


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Short Bowel Syndrome Barium Enema

Raising the Rare ChildHolly D Gray4 Comments

This morning we took Caleigh in for her barium enema. 

They used water soluble barium upon our request (I highly recommend it if your ever in the need for barium) because of Caleigh's history with intestinal perforation. About 2000ml of barium was gravity fed into her. That's way more than she gets in fluids a day. 

Caleigh did good during the whole thing. We played her music and she focused on that instead of the uncomfortableness. 

I could quickly tell that Caleigh's intestines are very dilated. There are large sections of bowel with presumably the strictures in between, but we weren't able to see them. These are areas where bacteria thrive, nutrients aren't absorbed and the walls of the intestines are fibrous and raw. This was one of the main reasons Caleigh originally had the STEP procedure all those years ago. Caleigh's anatomy is so different that we knew that we probably wouldn't find anything specific. The radiologist preforming the test questioned the actual reason behind doing it. His attitude wasn't the best, but he did his job. 

After the test was over, we sat Caleigh on the potty and the majority of the barium came out. She was shivering, clammy and exhausted while it was evacuating. We did one more x-ray (pictured below) and then we were free to leave. 

Caleigh's tummy hurts and she tells us this everyday. She is scared and worried and I wish I could take those fears from her. Please pray for her understanding and peace with all of this. 

Eric and I could use support as well. This is definitely the "marathon not a sprint" metaphor. Seven years ago...even three years ago, I was on top of my game. I knew the next best thing, I knew who to talk to where and I was ready no matter what came our way. I'm now less patient with those that work with us. I'm more emotional and anger easily. I'm worn out by not being able to heal Caleigh's pain, stop the crying, and the physical demands on myself are finally catching up. This feeling of exhaustion is often times paired with thoughts of the future and I fall back to the reality of our lives. Staying positive, laughing it off and forever being ridiculously sarcastic is sustaining us. I'm glad we still have even an ounce of those feelings left at this point. For all of these feelings though, we wouldn't trade any of it. 

This coming Tuesday is our appointment with the surgeon. If you remember a few years back Caleigh's surgeon moved to Tennessee. We were pretty devastated by this change, but at the time we didn't need surgery. This new(ish) surgeon knows Caleigh and has been around since she was born. I'm hoping we will be on the same page come Tuesday. 

Until then, we would love prayers and positive thoughts for strength, less pain, clear decisions and the emotional well being for our little family. We really do appreciate the support that everyone offers. It is truly a gift to have this community in our lives. 


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Homemade Laundry Detergent for Sensitive Skin

Adaptive ProductsHolly D Gray57 Comments

Hi, my name is Holly and I have crazy sensitive skin.

I can only wear certain types of make-up and I can barely wash my face with anything. It's a mess for a thirty one year old woman with mad amounts of acne. I just want to cover it all up, but I can't. Trust me it's รผber cool looking.

Eric has even more sensitive skin than I do. Years before Caleigh was even born we figured out that he was reacting to perfumes in our Tide laundry detergent. We switched to All Free and Clear at that point and things seemed fine. He would have frequent flare-ups, but we would blame them on the environment at large. He even had some trusty steroid foam to calm things down.

Flash forward to our ever so sweet daughter and you've got some of the most sensitive skin around. Caleigh is definitely a combo of her parents. Her allergic reactions and sensitivities are on her medical file, and weekly I have to list them at whatever appointment we might be at.

Tape Adhesive is listed as one of her allergies. Caleigh gets huge whelps at contact with the adhesive used in medical tapes. Even band-aids tear her skin up. When Caleigh was smaller her skin would break down eventually, but not right away. At this point it takes even a cute sticker from the dentist one minute of skin contact to cause swelling.

Like me, we can only use a few products on her skin. So when she was a baby, and having skin problems, we switched from All Free and Clear to Seventh Generation Free and Clear. I thought it really worked well, but I got tired of spending $20 a bottle on it.

I've been making my own house cleaners for almost ten years now. Every now and then I will buy a Seventh Generation product, but it doesn't happen often. Basically our house is cleaned with baking soda, vinegar and hydrogen peroxide. Our laundry soap was the final hold out. So I started searching Pinterest. I wanted a laundry soap that didn't have Borax in it. I've read conflicting information about it so why chance it? 

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I found a blog called Delightful Creations where she gives some great tips on making your own homemade laundry soap without Borax. Her recipe calls for baking soda, washing soda and castile soap.

I've used castile soap in the liquid form to make some of my more elaborate homemade house cleaners, but I've never used the bars before. There are several organic scents to choose from. I always come back to the peppermint though. It smells so clean.

I've actually been using this recipe for a little over a month now. I originally made a small batch to test it out. I am beyond thrilled with how this has turned out. We just thought our clothes were getting clean before!

Caleigh has some serious stains. G-button, Elecare, Diaper leakage..... you get the point. It's like being a contestant on Wipeout over here. So when I noticed that I was barely having to pre-treat stains I got all kinds of giddy. I do still use Ecover Stain Remover. I've used it for years, I love it and I probably won't stop using it, but now I am needing much less of it.

The smell is so fresh. I love the smell of peppermint though so I may be a little biased to the wonderful scent of my laundry room. For years we've used free and clear brands, no softener and no dryer sheets because of our sensitivities. So to have a smell other than wet and sweaty clothes is pretty life changing. The dried and finished laundry is so much cleaner than it used to be. The word crisp keeps coming to mind.

I kind of like doing laundry now. I still hate folding and putting it all away, but I enjoy the doing much more now that I made our own soap. I guess it's something about pride in ones work or the fact that I saved our family tons of money by spending thirty minutes making our own detergent. Either way, it's a keeper.

I found my soap bars at Whole Foods, on sale for $3.49 each. The large bag of baking soda comes from Costco. It's about $7.00 and there is plenty left over. We buy a bag or two of it each month anyways. The washing soda was about $3 and I needed 3 boxes for this recipe. Also, the only place I could find the washing soda was Wal-Mart. So for around roughly $30 we will have laundry soap for 3-6 months depending on how much we use in each load and how big the loads are. The original post suggests only using 1/8 cup to make it last for a year. I've got my 1/8 cup in the tub, and I usually put two of those in for good measure. Even so if I made a couple of batches of this, that would be a savings of roughly $190 a year.

I'm pretty excited about the fresh and crisp potential here. Happy washing!

UPDATE: 10/5/15 -- I still make this formula every 3-4 months for our family and I love it! Check out the comments for more ideas and suggestions when making your own laundry detergent for sensitive skin. 

PRO TIP: If you have a food processor, definitely use it for grating the castile soap into teeny tiny crumbs! 

My exact measurements for a 3 month supply:

16 cups baking soda (1 13.5 lb bag is plenty for this recipe)

12 cups washing soda (This is a little less than three boxes)

8 cups of grated castile soap  (1 bar of soap makes 2 cups)


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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