Made of Gray

Why the Zika Virus and Microcephaly Epidemic Hits So Close to Home

Raising the Rare ChildHolly D GrayComment

Ever since the news of the Zika Virus and its link to microcephaly; I've been either scouring over the details or immediately turning away. The Zika Virus has potentially been linked to Microcephaly with a smooth brain, brain lesions, eye lesions and Guillain-Barré Syndrome to date. 

It's big news here at home especially since the first American case was found in Dallas. Yesterday, I blazingly attacked a gigantic mosquito in our home. I won, but the threat, just like with the West Nile Virus is on the mind. 

The Zika Virus and the imagery of the sweet babies affected by microcephaly is heart wrenching. The look of worry in their mother's eyes isn't new to me. The videos showing constant bouncing, therapy teams, expert doctors and the subtle nuances of cerebral palsy are all too familiar. The term microcephaly may be a new to the general public, but the diagnosis isn't new to our family at all. 

Caleigh was essentially born with the diagnosis on her chart and it hasn't gone away over the eight plus years of her life. Caleigh's microcephaly could have been caused by prematurity, or most likely, her Periventricular Leukomalacia or PVL. Microcephaly has moved down the list of important labels that we rattle off when asked, but for the first three years of Caleigh's life it was a huge priority.  

Every day in the NICU Caleigh's head was measured. Every doctor's appointment for the first three years measured her sweet skull. 

Every. Single. Appointment. 

From her Cranial Helmet, GI, Pediatrician, Pulmonolgy, Endocrinology, Genetics, Nephrology, Emergency Room, PICU, Inpatient Hospital Stays, and to Therapy Evaluations; the tape was brought out and a measurement was jotted down. 

It was asinine considering she had appointments multiple times a week. I vividly recall the hope I would get in those early days to have a centimeter or two of growth. Equally so, I remember the disappointment that came from multiple nurses and doctors measuring her head a little different each time giving us false hope. 

Imagine weighing yourself daily if not multiple times a day and the emotion that could bring if you were trying to gain or lose weight. This measurement was similar only it was our child's brain that was on the line. It adds to the devastating news of an infant brain injury and makes the heartbreak raw and open at all times. The news of the Zika Virus and microcephaly opened those wounds for me in a way that I didn't expect. It definitely brings up emotions of my past that I tend to bury deep down. 

Cranial Band via MadeofGray.com

At some point in the past eight years, I started ignoring the measurements and not worrying about it. I can't remember just when that happened or when that transition in thought came along. After the not so successful stint with the cranial helmet, Caleigh's thick curly hair started growing in slowly and the visible differences in head to body ratio lessened. It's something I don't think about on a daily basis anymore. 

Microcephaly is one of those terms that doesn't go away with time, but only moves aside for the many other diagnosis that come with a small brain. The families of the Zika Virus might experience seizures, developmental delays, cognitive deficits, GI issues, and pulmonary problems. I could go on and on, but I don't want to. The pain I feel from this news is filled with empathy. I only wish I could take away the worry of the pregnant women and parents. I've been there and it's a scary place. I wouldn't wish the uncertainty of microcephaly on anyone.


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2015 Wrap-Up List

Special Needs ParentingHolly 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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Little Hairy Dog Costume

Special Needs ParentingHolly D GrayComment
Little Hairy Dog Costume via Hacking Disabilities

Earlier this month I asked Caleigh what she wanted to be for Halloween. With her iPad and Proloquo2Go she typed out "little hairy dog." 

This was big news in our house because Caleigh has wanted a version of a fairy for the past three years. I have no clue where the idea came from, but I'm so glad she got creative. 

So it had to be hairy. Dalmatians, or any other random puppy wasn't going to work. I did a quick search online and found a lot of scary werewolf costumes and one cute werewolf costume from Pottery Barn. I ordered it pretty fast because Pottery Barn is known for their out of stock disappointments. I went online and ordered some brown tights and a brown t-shirt, created a bow and called it good. 

Little Hairy Dog Costume via Hacking Disabilities

She had the best time this Halloween. I updated the Halloween page on her iPad. She could tell everyone Happy Halloween, I'm a Little Hairy Dog, Trick or Treat, Thank you, I'm having fun, I'm bored. I also added sounds that a dog could make. Caleigh repeatedly said "Woof Woof" "Aaaaar" and "Aooooh" all night long and practiced heavily for days leading up to the big event.  I love adding sounds to her words and frankly she loves using them. 

Little Hairy Dog Costume via Hacking Disabilities

This was the most interactive year of trick or treating that Caleigh has ever had. Something about dressing up helped her break through the shyness. I love progress! 

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4 Easy Steps - Homemade DIY Ice Packs

Hacking Special NeedsHolly D GrayComment

When it comes to homemade ice packs our family knows the ropes. Caleigh has been using a feeding pump to get her daily groceries for over eight years now and in that time we have gone through some serious ice packs. We have to keep her Elecare Jr. formula cool at all times. So finding a great ice pack was definitely on my list of things to do for years. 

We've used the commercial kind that came with her monthly supply of TPN in the past. We've used the regular soft store bought version only to be annoyed when they leak goo everywhere. The hard shell ice packs work, but they are too heavy and just don't mold to everything in her backpack. 

Who knew an ice pack could change your day? 

 

I stumbled on this DIY ice pack several years ago, and quite honestly it was probably on Pinterest. I just made another set of them before our Boston trip and I couldn't be happier. 

So I've decided to share with you! Sharing is caring after all. 

All you need is Blue Dawn Liquid SoapZiplock Bags and your freezer. 

1. Take your Blue Dawn Liquid Soap and pour it into the freezer bag until it is a little less than half way full. You don't want to over fill the initial bag. 

2. Seal your freezer bag really well. FYI - Using the freezer bags that zip with a slider work just as well. 

3. Take another freezer bag and double up on your plastic protection. Trust me on this. Dawn soap is great for cleaning and smelling fresh. It is not so great when massive amounts of it have busted and oozed everywhere. Double up people. 

4. Take your complete bags and place them in your freezer. Depending on your freezer these will take six hours or more to completely freeze. Ta-da! 

Like I said, we use them daily in Caleigh's feeding backpack. During the summer months we trade them out every six hours or so because of melting. They are very similar to the soft blue gel ice packs that you buy in the store, but they hold up better in my opinion. So much so, that I used my first batch of DIY ice packs daily for 3 years before making this set. The only repair made during that time was adding another Ziplock layer for leakage protection. 

Happy Freezing Folks! 

Do you have any ice pack tips or questions? Let me know in the comments! 

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