This post contains a little bit about a lot of different things. It is a hodge-podge of information. It parallels our life.
First, to answer your burning question. No. We do not have a date. Yes. It is frustrating. We are making progress. We got an email saying that all of the paperwork necessary to complete the stoma repair has been submitted and we are now waiting for the OR to schedule his surgery. We have no idea what that means as far as timing is concerned. Obviously, our definitions of “as soon as possible” differ.
On a similar note, Zack saw his GI yesterday at Walter Reed. It was a good visit in many ways. I appreciated hearing that Zack looked good. I appreciated knowing that besides the obvious surgical issue, Z is healthy. It was nice to have some questions answered and to have a doctor actually lay eyes on my child. We kept thinking we were leaving any day, so we had not actually seen our doctor in almost two months. Do not be alarmed. Our doctor gets plenty of texts from me when things are going screwy. Zack is in good hands.
This week we also addressed Zack’s ADHD medicine again. We had taken him off of Adderall XR because his stuttering was out of control. He had been off of the meds for almost a week when we tried an experiment. We cut his dose in half to see if his disfluency would improve. It didn’t. After much discussion with this doctor and his GI doctor, we have decided Adderall XR is NOT the way to go for Zack. We will re-group and try again next week. Zack’s speech is still pretty significantly altered. I just do not understand how it all works and why, if the medicine caused the stuttering and word weirdness, taking him off the medicine does not fix it. He is an enigma.
A sweet friend in Texas uses Essential Oils and had heard of success in treating ADHD with the product. She sent us a sample to try. Today is our first day using the oil. I do not notice any difference yet, but he sure does smell awesome! I like that it is an all natural alternative to treating ADHD and it does not have any crazy side effects. If it does not work, we are no worse off than we are now and if it does work we can celebrate.
This week we also met up with a friend from our time in Colorado Springs. She is pretty cool because, well, she is just cool AND she happens to be a potter. Jake and Zack got to take turns learning how to make a bowl using the potter’s wheel. I took pictures (of course) and had fun catching up with my friend.
Zack’s lump of clay:
Jake’s lump of clay:
Jake starting his bowl:
Today Zack went to a pool party for his friend. He did such a good job just getting his feet wet. People commented on how neat it was to see his self-control in staying out of the water. I suppose that is true. He did listen really well. He also knew that if he got wet, his wafer would come off and that would really and literally stink. It was a really fun day and now we are having fun waiting for his stoma to recede. It was worth it.
Z being careful to only get his feet wet:
The end of Z’s awesome day:
And there you have it. Our hodge-podge week in review. Just living the dream and taking a day at a time. Looking forward to a great last week of school next week. Maybe if we are lucky we might actually find out when this boy is having surgery. That would be awesome. Until next time…..have a great week!