Made of Gray

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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Changing Directions

Photography Beyond SNHolly D. GrayComment

The past year has been full of change for our family. Caleigh's long surgery and stay in Boston is notably the biggest upheaval, but there have been many more. Change has been everywhere. That's life, right? If we aren't changing we aren't growing. 

Changing Directions via madeofgray.com Castle Island Boston

During 2015, I had been creating my own personal art on the side, showing in galleries and feeling good about where I was headed. Last November when I resigned from my nonprofit position, there was a period of time that left me yearning to find my path. I had extra free time that I felt confused to fill. I needed the down time emotionally, but there was something that was missing.

Once I discovered that it was the making and creating that I had lost, I jumped back in. When there wasn't a paid job to fill the quiet spaces, I looked towards art and continuing my education. 

I'll save you the long version of this dream... I've always wanted my Master of Fine Arts and to teach at the university level. That was the plan. Caleigh's birth and fragility slowed and fogged that dream. There were moments that I thought it wouldn't happen. 2016 showed up, timing was right and free, and I was fully supported at home with Caleigh's care to pursue this little goal of mine.  

Changing Directions via madeofgray.com Castle Island Boston

After months of work, applications, meetings and portfolio reviews, everything was submitted to several graduate programs in the area. I waited a month, had further interviews and eventually chose UTA and their Intermedia Studio program. They were able to offer me funding as well as a Graduate Teaching Assistantship and a studio space. The acceptance process is very rigorous and I'm happy that my work and potential was what they were looking for in a candidate. 

Flash forward an entire summer that frankly wiped my slate clean. I haven't created anything with my hands since we left and the photography that I shot still lives on my hard drive. I pulled these from our visit to Castle Island in Boston. The fog was amazing that evening. Even editing these images for this post gets me excited about the next three years. 

At home things are much less supported than they were when I was applying back in January. Of course, Eric is a rockstar dad that pulls his weight in an incredible way. Dad's need time for themselves too though. Since we've been home, we've been working on finding the right nurse or caregiver for Caleigh. Another big change. Today I interviewed nurse #7 since we've been home. She's coming back on Monday and I really do hope that she works out. We have a new respite caregiver that should help with date nights and mandatory school outings throughout the coming semester. 

Changing Directions via madeofgray.com Castle Island Boston

Next week is the start of classes and finding a routine for all of us. With most of my coursework being research based and independent studio time; we should find time for therapies, homeschool and down time without a hitch.  Everything else may just have to wait. 

Things are falling into place, but they are still in that "what was I thinking" stage. I literally have a moment of pure excitement followed by extreme mom guilt and I haven't even started yet. It'll be an interesting transition, but I'm excited to see where we are all headed. 


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Finding Home Again

Raising the Rare ChildHolly D. Gray2 Comments

After forty nine days on the road, inpatient and outpatient we are finally safe at home. We've been home for five days and I've struggled to form words for this post or my personal journaling. I'm going to try tonight so bare with me. 

Finding Home Again via madeofgray.com

The first night at home our air conditioner went out and we spent the whole night awake and warm. Luckily it was cloudy and somewhat cooler. It was repaired before 10am the next morning. It was definitely a lovely welcome home present. 

Caleigh is doing so well since her surgery. She is happier, sleeping better and in less pain than before the surgery. She is no longer on her ulcer medication, Sulfasalazine. She doesn't need the pectin added into her daily formula to slow down the feed and control the symptoms of dumping syndrome. As of now, she doesn't have any symptoms of dumping syndrome at all, but we are keeping an eye on things with frequent glucose checks. We are still treating the yeast infection she has on her abdomen due to a very leaky g-button stoma. This isn't surprising due to the month plus on strong antibiotics, but it's uncomfortable to say the least. 

Our outpatient time in Boston was spent at the Wingaersheek Beach , Plymouth, Castle Island, and walking the neighborhood; especially the Reservoir across from our condo. It wasn't all fun and games though. Caleigh had some really hard days and nights that first week out of the hospital. It was a great plan to stay in town for extra time to heal.

By the time we had our clinic appointment, Caleigh was doing well enough to travel home. The trip home had its up and downs. We traveled through Skyline Drive in Virginia's Shenandoah National Park, shopped in Asheville, NC and visited Georgia's World Aquarium during the week it took us to slowly drive home. I hope to share more from these adventures soon. 

Eric eagerly went back to work for the first time today. Caleigh had an eye appointment and picked out new glasses. She's been back to OT and the Chiropractor. We've had the powerchair and stander worked on and we've had lots of family visiting. My to-do list is two pages long. So we've jumped back in feet first. 

Everyone is asking me how I'm doing and I really can't find a word for it. The closest thing I can think of is numb. I feel numb and much older. I look extremely tired and I know I do. I feel like we lived in a bubble of near death only to be spit out happily on the other side and expected to carry on as usual. It's surreal and numbing. Ask me a detail about our time in Boston and I probably won't remember it. My brain and my body wants to forget the pain. Where I used to store the information and tiny details, I now forget them within the week at hand. I have the worst memory. Maybe a coping mechanism? Maybe it's a symptom of PTSD? Maybe it's CTSD? It probably doesn't need a label. I hope that with time we will all get back in the groove of our lives, and slowly the Summer of 2016 will be remembered by a series of archived blog posts that I probably will never read again. 

While we continue to heal and soak up what's left of the summer, I want to thank everyone for their love. Your support, prayers, gifts, cards and words of encouragement are the tools of Caleigh's success. She is one strong and incredibly brave little girl, but even the bravest of souls needs love and she could feel that from all over the world. Each moment of thought given was a major blessing. Thank you. 

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The Great Escape - Discharge Day

Raising the Rare ChildHolly D. Gray3 Comments

Two days shy of one month, Caleigh was discharged from the hospital. Late yesterday, Friday, we packed up and headed out the door around 5:30pm. 

Over the past week, Caleigh's feeds were able to be advanced to 44ml at a continuous rate. She had Pedialyte at 20ml on Monday, July 4th. On Tuesday, late afternoon, they decided to start full strength feeds at the 20ml an hour that she was already at. Early the next morning Caleigh had half a dozen stools and one after another before 10am. By the time the team made rounds, Eric and I had decided that we should move slower. The team agreed. 

The Great Escape via madeofgray.com

The day that she started feeds it was decided to do it without her normal pectin added in. We add pectin to Caleigh's Elecare JR formula to slow it down in her tract and to keep the symptoms of Dumping Syndrome at bay. They wanted to see how she would do without it. 

So when she started stooling a lot everyone decided we would add back in the pectin at 3%. Her regular amount is 3.5% which we'll move up to eventually while outpatient if she seems to need it. If her stooling gets better we will start to back off of the pectin hoping that the dumping syndrome resolved due to the surgery. 

A few hours later we started the pectin and the stooling slowed down. Two thoughts here. One is that after you haven't been fed in so long, your intestines seem to overreact producing more stool in the beginning. The other thought is that she needs the pectin and that her dumping syndrome hasn't resolved. Either way it slowed down. 

We went up by 5ml every 12 hours after that day. On Thursday night Caleigh was 14ml away from goal. We asked to go up by 7ml that night and 7ml on Friday morning. She made it.

This entire week they were weaning her off of IV nutrition. She was off of it for 4 hours the first day, 8 hours the second day and on Thursday night she was hooked up for 12 hours. She came off of it completely on Friday morning. Caleigh was tolerating everything. 

Normally they like to keep patients at least 24 hours after going off of TPN. Our planned discharge was Saturday morning, but we pushed to leave late Friday. Everyone in surgery agreed. The PICC line was pulled, we packed our stuff and walked out the door. 

Caleigh slept beautifully last night. We all did. We all woke up together in the same apartment. We're cuddled up on the couch, sipping tea and coffee and watching the Tour de France. It's gently raining outside and it's not supposed to get above 66 degrees today. My gratitude, happiness and love is overflowing. We made it through. 

Over the next two weeks we will be enjoying the area, taking day trips and making our way to clinic appointments here and there. My updates will be fewer here, but I'll continue to check in. Let Caleigh's summer begin! 

Thank you again to everyone that provided prayers, thoughts and support during the past month and throughout her life. We appreciate it so very very much. 

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