August was a month packed with lots of visits to Walter Reed and I wanted to wait until Zack had all of his appointments until I posted an update. Originally we were just going to have a visit with Zack’s surgeon and a visit with genetics. At our surgery visit, a referral to neurology was added. To add more excitement to our month, Zachary needed an eye exam. In addition, Zack’s PCM retired from Ft. Meade and that seemed like the perfect time to transfer Zack’s regular pediatric care to Walter Reed. This meant adding another appointment to establish care with his new doctor. Actually, we have known this pediatrician for years from Zack’s inpatient days, but she was not officially Zack’s doctor. The way it all came about is a fun story, but I’ll save that for another time. We are thrilled to have her supervising Zack’s pediatric care.
As August ended, we knew that we needed to see Zack’s GI and it just made sense to wait to update the blog until all of those things were complete. Although by doing so, it makes for a long update…
Let me see if I can do a quick(ish) summary….yeah, right…you’ve met me. Quick is not my thing, but I will try because it is 11:30 p.m.
Not much new happened with Zack’s surgeon other than learning that he was deploying, so we hope that nothing surgical happens in the next few months. We did talk about some surgical options, but I refuse to think about those until Zack’s body tells us otherwise.
During Zack’s genetics visit, we decided to have whole exome sequencing done. It is pretty interesting stuff. If you want to learn more about it you can click on the link above. The test takes several months to come back and we have been told that it only finds issue about 30 – 40% of the time, but it is one of the best tests available at the moment and much more precise than the last test Zack had 6 years ago. Jim and I also had our blood drawn so that if abnormalities are found in Zack, they can compare our DNA with his. We signed lots of papers and had lots of counseling about what this test can and cannot do and the different things we might discover. Now we just wait.
Neurology really didn’t tell us much, but it did rule out lots of diseases. The most interesting thing that I learned was that the brain and the skin develop at the same time during gestation. Zachary has several skin abnormalities which the doctor seemed interested in, but the big diseases that occur together with the brain were ruled out. We left there learning that the neurologist believes that Zack’s issues are chromosomal. So, basically nothing new.
Zack’s pediatrician appointment was great because we have never had a pediatrician that truly understood everything going on with Zack. This doctor really does. She actually read his entire medical record back to our time in Germany. That was certainly a time-consuming feat. We were so thankful that his doctor took the time to do that so that she could really understand Zack and all of his medical concerns.
Zack’s ophthalmology visit was not as wonderful. Last year Zack was so nervous about getting his eyes dilated that the doctor said he could wait until this year to do it, but that it had to be done. Zack was even more nervous this year, but we worked on helping him through it and he was ready. Before his appointment, the Red Cross Dogs made a special trip to see him to help him relax. When we got to the appointment, Zack was clearly agitated…but ready to get his eyes dilated. The doctor saw him and said, “Well Zack, I’m OK with waiting until next year to dilate your eyes, but I will leave that decision up to your mom. Just know next year you REALLY have to get it done.”
Um……who does that? What doctor tells a child something like that and then makes the mom the bad guy. I was not impressed. Zack was ready to do it because he knew he had no choice. Now he thinks he can get out of it again. I rarely complain about doctors on this blog as it really serves no purpose, but come on! That was craziness.
Zack and Elsa and Bailey before his eye exam.
Z’s GI appointment today was interesting. For the past month we have been noticing a downward trend in his weight. Today we talked about getting more calories in him through his feeds. He currently receives 1200 calories overnight and we are bumping that up to 1400. His g-tube, which was too small before his revision in March, is now too big because of his weight loss. That was resized today. We also discussed seeing if a trial of steroids might help Zack. He is still dumping (too much output) for some unknown reason, still has belly pain, still prolapses and still has days where his stoma is swollen. The thinking is that perhaps Zack’s issues are some weird autoimmune response and that a course of steroids (several months) might help calm that down. Because this has been an issue for years, nobody knows just how long it might take. From what I understand, we will be watching his body for clues to measure its effectiveness. Steroids come with their own set of side effects, but one of the good ones, for Z, is weight gain.
If the steroids improve his symptoms, we will take him off of them and wait and see what happens. If his symptoms return, we will do scopes and full thickness biopsies to get a baseline. Then start the steroids back up for a time and repeat the biopsies to look for improvement. If they don’t work or if Zack has adverse side effects, we will stop the treatment.
Whew. Two more updates. First, Cap has started Medical Assistance Dog training to try to help Zack with his medical trauma anxiety or PTSD. We are all pretty excited about that. It is a long process, but Cap seems to really enjoy it and Zack loves it!
Second, Zachary had the opportunity to head to Ocean City, MD last weekend and go SURFING! The Best Day Foundation hosts events in different cities for children and young adults with disabilities to allow them to try adventure activities that they would normally not be able to.
Zack was paired with some buddies, Angie, Terri and Mason, who helped take him around to different stations. They were wonderful and so encouraging and loved on Zack and helped him feel incredibly special. A big team of volunteers worked to help the kids surf and boogie board, play in the sand, meet some super heroes, have lunch and get medals and goodie bags. The weekend was super rainy but, for that hour and a half, not one drop of rain fell, the sun came out and once each child had several opportunities to get into the water the skies opened back up. Perfect timing.
I leave you today with our favorite pictures. Just a little warning….I am posting a ridiculous amount of photos. My blog also serves as my journal, so I wanted to make sure I could find these pictures easily. Some pictures are our own and some are from the Best Day Foundation Chesapeake Bay Facebook page taken by Desiree Ortman Photography and Nick Denny Photography. I’m sure you will be able to tell which are ours. If you are on FB, head on over to the Best Day page and check out the awesome photos of the event there as well.
Zack all suited up and waiting his turn.
A very happy surfer!
Zack after his first ride being asked if he wanted to go again…heck yeah!
The amazing volunteers who helped Zack catch some waves.
Zack’s buddy, Angie. She made his day extra special.
Another of Zack’s buddies, Ms. Terri.
First boogie boarding attempt.
Check out the size of those waves.
Just a boy enjoying the ocean.
Zack telling us that he really NEEDS a surf board.
Zack’s cheering section. Dad, Mom, Abby and Dan.
Celebrating with pizza and some of Zack’s favorite people.
And finally, one of Zack’s surfing runs. The video is a bit blurry, but totally amazing. Thank you to the Best Day Foundation for an amazing experience!
After writing all of this, I came to the conclusion that jamming all of this info into one post was a bit nutso. If anyone besides my mom actually reads to the end, I will be super impressed.
Hug your babies!