Made of Gray

Cerebral Palsy

SPML Cast Removal Day

Raising the Rare ChildHolly D. Gray1 Comment

This morning Caleigh was able to have her casts removed. It's been one month and four days since her SPML surgery. We've been counting down the days on a calendar hung right next to her bed and boy can I tell you that she was so excited for this day. 

SPML Cast Removal Day via madeofgray.com

The removal of the casts was uneventful. Thankfully there weren't any sores or skin breakdown during the big reveal. Caleigh's skin is thin and scaly. We have instructions to gently clean the skin and not exfoliate at all. It'll take some time for the skin to return to normal. 

I asked Caleigh this morning if she thought that the surgery was worth it and she immediately said yes. Her legs are less spastic, tight and generally they seem to be more comfortable. She says that her hip isn't healed of pain, but that it is better than it was. What was once an all out olympic sport just to get her in the van booster seat is now manageable. Same goes with so many other everyday activities. This is a big win in my book. Caleigh's comfort was the number one priority when choosing to do the procedure. 

SPML Cast Removal Day via madeofgray.com

Caleigh still has another month of wearing her knee immobilizers at night. She's not a huge fan of them, but has definitely settled into the routine. 

In two days we will be picking up Caleigh's new AFOs and then she will settle in for a few months of strengthening before we head back to Houston in June for our follow-up with Dr. Yngve. Overall, we see great positives with this procedure and so far we're happy with the results. 


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How To Keep A Cast Dry In The Shower

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As soon as we found out that Caleigh was going to have fiberglass leg casts; I knew that we had to simplify her already time consuming shower time. I have fond memories of my brother's arm cast. It stunk in the general six year old boy kind of way and definitely got wet often. I remember taping black trash bags to his arm for showers. Since Caleigh is so sensitive to tape adhesives this was the last resort approach. There had to be a better way to shower while keeping Caleigh's casts dry....

So I went shopping on Amazon and found the Seal Tight Freedom Cast/Bandage Protector.

Genius. 

How to Keep A Cast Dry In The Shower via madeofgray.com

How to Keep A Cast Dry In The Shower via madeofgray.com

I ordered the Pediatric leg length, but for Caleigh's little legs I could have ordered the pediatric arm length. You can see in the image below how much length is left over. I could wear the darn things. 

For ten bucks a piece and prime shipping it was totally worth every penny. We pop the membrane on and over each leg cast and start showering with no worries. 

So far we've had no issues with leaks or with the membrane being too tight. It's amazing when we find products that can simplify and speed up daily tasks. I tend to fall in love and shout from the roof tops. 


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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Two Weeks Post Selective Percutaneous Myofascial Lengthening (SPML)

Raising the Rare ChildHolly D. GrayComment

Caleigh has been doing really well since our return home from Galveston last week. This Friday marks two weeks since the SPML surgery. We can already see an amazing difference in her tone at this point. It has relaxed her hamstrings and adductors extremely well. 

Two Weeks Post SPML via madeofgray.com

The bruising is still pretty bad from the actual procedure, but seems to get better each day. The tiny incisions are really unnoticeable. Caleigh is still having quite a bit of pain and her need for Tylenol varies each day depending on how much she is doing. The past few days have been a little rough with leg muscle spasms. I would call them twitches of pain and they seem to be causing discomfort. 

We've now perfected our evening waterproofing routine. We start with the knee immobilizers turned upside down so that the narrow ankle end is actually on Caleigh's thighs. This is followed by two 4 gallon trash bags on each leg so that everything is protected in case of an accident. The bags are each tucked into the immobilizers so that we don't have to use any tape on her sensitive skin. It's a lot of work and I honestly can't imagine having to sleep that way. Caleigh is such a trooper. 

Sleep has been a major issue. Her comfort at night isn't ideal with the knee immobilizers. Caleigh wakes up several times a night as well as getting up super early. I'm used to her waking during the night for position changes or needing to use the restroom multiple times, but getting up at 4am doesn't fly around here. We're all feeling it.  

With less than great sleeping conditions and not feeling well, Caleigh's behavior and willingness to get back into her routine hasn't been stellar. Each day has been a tiny bit easier and we are hoping it continues to move in that direction. 


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SPML (PERCS) Surgery

Raising the Rare ChildHolly D. GrayComment

Want to read the first post in this series? Start here...

I'm writing from home after our weekend adventures in Houston. Caleigh officially saw Dr. Yngve in his clinic and had the PERCS procedure with alcohol nerve blocks on Friday morning. 

SPML (PERCS) Surgery with Dr. Yngve via madeofgray.com
SPML (PERCS) Surgery with Dr. Yngve via madeofgray.com

Our arrival time at the surgery center was 7:30am. We woke up, showered and made a beeline to Starbucks for some quick caffeine. When we arrived they took us right back to the pre-op area. We were told that Dr. Yngve was in surgery with his first case and that Caleigh was next. 

Caleigh finally went back to the operating room at 9:40 and by 10:50 we were getting the okay by Dr. Yngve in the waiting room. All went well during the procedure. It was another hour before they called us back to see her waking up in recovery. 

SPML (PERCS) Surgery with Dr. Yngve via madeofgray.com

In general, Dr. Yngve's harder cases or more complicated kiddos have their procedures done at the children's hospital in Galveston. For whatever reason he decided that Caleigh was well enough for the League City out-patient facility. There were two anesthesiologists, multiple residents, and several nurses on board for Caleigh's surgery. About half a dozen people were there. I'm not going to lie here... it was a concern of mine. We've never had anything done outside of a children's hospital, but I'm happy with how we were treated and how Caleigh's case was handled. 

Dr. Yngve is a man of little chit chat, but if you have questions or comments he answers them throughly. He knows what he is doing and you can tell that helping kids with this procedure is very important to him. We really felt comfortable. 

There were some issues with the medication for pain that Caleigh was prescribed on our request. Since she can't have the dyes or fillers that most meds have we asked for suppositories. We tried several pharmacies and called others and no one had what we needed in stock. So we made the decision to pick up the regularly prescribed meds and hope for the best in the tummy area. We should know how that works out this coming week. With these meds, the first night and long drive home was relatively easy.

I will say that a stool sample earlier this week was positive for blood. So we were going into this knowing that we will be returning to Boston soon for an upper and lower scope. 

SPML (PERCS) Surgery with Dr. Yngve via madeofgray.com

We are still waiting on her bowels to wake up and start moving again since the anesthesia and morphine. So when we got home we asked Caleigh if she wanted to stand in her stander. She immediately said yes. We decided 30 minutes was enough and helped her out, but she totally conquered the first stand. We have strong instructions to get her back up and going as soon as possible. The more she stands, walks and moves... the better. 

As of last night night we had to slow her feeds down and switch to a pedialyte drip. We've stopped the heavy pain meds and moved to tylenol. We're hoping that her intestines wake up and do their thing soon. As of now her abdomen is large and we pray that we don't have to head to the hospital. She is thankfully staying hydrated as of now. 

UPDATE 1/21/16 - I'm pleased to share that Caleigh's intestines have woken up as of this morning. 

Caleigh is rocking super star purple casts on both legs. She smiles about her choice when we talk about it. This week I will be in search of stylish socks to wear with her shoes while she's up and at it. Caleigh will have her casts for one month and she will have to wear the knee immobilizers for two months at night, which may be the hardest part of the whole procedure. 

Other than our usual short bowel concerns, the whole experience has gone pretty smoothly. We can already tell a difference in Caleigh's intense extension tone. When I expressed concern that she would lose all of her tone; Dr. Yngve said that Caleigh has enough tone for several adults.  One day out and we can see that she is still able to use it. Now we start the therapy needed to strengthen her weaker muscles and hope for a more relaxed state. Overall we are happy, but I'm not counting my chickens until the casts are off. 


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