Trip #2 on 8/27/14:
This was the first of four visits where Joshua and I traveled alone. This was a daunting task, but I had learned a few things from the first trip that helped me pack and prepare better for travling without a pack mule (my Dad or husband). Joshua continued to impress me with his traveling skills and remarkably good behavior on the plane.
This was considered the Baseline visit which included the first dose of Gattex and three yucky blood draws to go along with it. Our morning started bright and early with an 8 am appointment where he promptly began the first of three pokes in the arm over the next 8 hours. The process did not go well for the poor guy and he was pretty traumatized after the first round. Then he was treated to the first injection of Gattex and the clock started ticking down the hour until his next blood draw.
Aunt Karen (my constant and greatly needed helper) and I were able to escape with Joshua for half an hour to give him a breather before the second round. We found our way to an outdoor playground that was perfect for distracting the little guy for a bit. Until a Child Life employee informed us the playground was closed due to the heat and we should have seen the signs. Well I had seen the signs, but since it's 10 am, in the low 80's, and the playground is in the shade, I thought they were pretty silly. Because we're from Georgia where you wouldn't step outside for half the year if your qualification for high heat is a balmy 83. After a stern talking to, I was given "special permission" to stay out there for 20 minutes. Jeez, these folks take stuff seriously at Cincinnati Children's!
After a relatively uneventful second blood draw, we had a 5 hour window of time to explore the hospital, have a long lunch in the cafeteria, and a nap with Joshua sleeing on top of me in a hospital bed. Then came the last and most traumatic arm poke before we were allowed to escape to the airport to begin the long trek home armed with a week's supply of Gattex.
I'm finally home!Trip #3 on 9/2/2014:
This was a relatively easy visit compared to the last two. The appointment was at noon instead of 8 am which made for a more leisurely morning and it was only 90 minutes long instead of 4-8 hours. Most of the appointments will be like this one, thankfully. I have to bring a urine sample from Joshua and the Input/Output diary I am responsible for keeping daily. Joshua has vitals measured, including the all important weight gain, a blood sample is collected from his line, a physical exam is performed, and then we are basically free to go after speaking with the doctor, dietitian, nurse, and coordinator to collect the next week's supply of Gattex.
Trip #4 on 9/8/14:
After a year of not having a single reduction in Joshua's TPN and lipid volume, visit 4 brought the first decrease we have been anxiously waiting for!! Joshua's TPN rate was reduced by 10% - woohoo! Dr. Cole pointed out that 10% only amounted to 50 some odd mL of fluid, so it wasn't anything to get too excited about. You bet it is! It's a step in the right direction and we are very grateful for it.
Trip #5 on 9/15/14:
This visit Joshua had lost a little weight after the reduction in TPN volume so the rate was not reduced any further. On a positive note, Joshua started reliably drinking a smoothie concoction I make for him with banana, coconut milk, peanut butter, and coconut oil. I hope I will be able to sneak in other ingredients that my picky little eater normally doesn't approve of!
Trip #6 on 9/22/14:
This week David had the privilege of accompanying us so Aunt Karen was able to hit the beach with family. This visit was another long appointment with three blood draws spaced out over six hours. I was really anxious to get past this visit since it signals the halfway point, we get to start going every other week instead of every week, and it's the last long appointment that requires all of these yucky blood draws.
I had bragged to David about what an angel Joshua had been on basically all of the previous flights, so he decided to turn into a Gremlin on the flight out just to prove me wrong. David was sitting in the row in front of us and pretended not to know who the screaming child was. All of our fellow passengers and crew members were immensely relieved when the monster finally passed out. The unfortunate lady sitting with me and Joshua told me at the end of the flight what a good Mom I was - if you only knew what I was thinking while the little dude was fussing his brains out, you probably wouldn't compliment me. ;)
The day picked up once we got to the hotel and were able to grab a bite to eat before playing outside!
Then the evening got really interesting, as I took a spill stepping off a small step while trying to take pictures of Josh. I rolled my ankle before deciding it would be better to fall into the grass rather than tear my ankle up. I writhed around in the grass for 15 minutes moaning "Oh God" while Joshua decided I must want to wrestle and crawled all over me. Much better than him taking off for the road that was 30 yards away, fat chance of me being able to keep up with him given my current state.
I managed to grab a picture in mid-air as I tumbled to the ground. The next day after being on my feet for 16 hours, my ankle was in pretty rough shape and I had to stuff hospital gloves in the back of my shoes to keep them from rubbing skin off my heels. Am I "styling and profiling" you ask? Nah, more like "limping and blistering".
The long appointment went surprisingly better than the last one, Joshua didn't make a peep during the first two blood draws. The only tears came when he was awakened from a 20 minute nap to a tourniquet being tied around his arm before the final poke and even those were very brief. He is such a trooper!
Somehow we managed to make it to the famed Cincinnati Zoo for a few hours before our flight. I tried to ignore the resistance from my ankle as we walked around trying to show Joshua all of the animals. I think he noticed about 4.
The great news from this visit is Joshua had gained a significant amount of weight - yippee! I believe this is because he recently started accepting his peanut butter and banana smoothies. Now the dietian wants me to add raw spinach to it and see if he will still accept it. The jury is still out on that. Because of his rate of weight gain, the doctor approved cutting out four days of his lipids so now he will just require lipids three days a week. That is so awesome because it's the lipids that cause eventual liver damage and it reduces the time it takes me to prepare his IV fluids almost in half for four nights a week. More great progress!
In non-Cincinnati related news, Joshua has been seen the last two weeks in a row and will be seen again next week at the Marcus Autism Center. The first appointment was a consultation with a nurse practitioner to decide if he should proceed to the pre-test with the psychologist. We had the pre-test with the psychologist this week. This was after being told to my utter amazement that the next available appointment was 8/28/2015. Polite persistence paid off and I was called back that afternoon with a cancellation for this week. I can't imagine having this autism evaluation hanging over our heads for the next year, I am just ready to know one way or the other whether these Marcus people think he falls on the spectrum so we can get him additional services if he needs them. Joshua's 4 hour evaluation is on Monday at 9, but only a helicopter would be able to get us through Decatur traffic to make it there on time. We should have results that afternoon.
And to end this post with a positve twist, check out www.onlineathens.com on Sunday to see an article in the Athens Banner Herald about Joshua and his paintings! We fit in a session with a reporter and photographer this week and it will run on the front page on Sunday (underneath UGA football coverage, of course). I will post a link when available. The link to Joshua's paintings is: http://growingupfolden.blogspot.com/p/artwork-by-joshua.html
Sending love and hugs to all the Joshua supporters out there!!
xoxo
Joshua & his Mama
Great news on weight gain!!! Hoping your ankle strengthing up....Continued well wishes!!
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