We are now on week 2 of the ACTH treatment. Luke continues to be a little trooper, but is struggling a bit with the powerful medication. He's become a little "pin cushion" with the daily injections and twice weekly blood draw, which usually ends up in several pokes each time as they have a hard time finding his veins. This guy is seriously tough. Each time I change his clothes I just want to kiss each and every needle mark, bruise, and band-aid remains that exist on his tiny little 15-pound body. Jackson is convinced that Mommy's kiss can heal any boo-boo instantly. Oh, how I wish this magic power really existed for our little Lukey. I would just kiss him all over incessantly.
This week Luke had 4 doctors appointments, 3 therapies, and 3 home nurse visits. Thankfully, he's being watched very closely. We started noticing something strange happening with his eyes this past Sunday and alerted the neurologist immediately. He sent us to the ophthalmologist right away who said that on her end his eyes look great. Good news! She, however, cannot say if what we have been seeing are seizures or not. The neurologist saw video of the eye movements that I had taken on my phone and said it's hard to tell at this point. Luke will have a repeat EEG on Monday morning that will tell us a lot. His first 24-hour EEG showed a very chaotic brain wave pattern called hypsarrhythmia. According to the neurologist, if we see this pattern has disappeared then we know the treatment is working and the seizures have almost definitely ceased. However, if the hypsarrhythmia is still present, then it shows that the medication is not working and the seizures will most likely reappear as we start to wean him off the ACTH treatment (which is much different than typical steroid treatments and not a long-term medication). This will also alert him that the eye movements we have been seeing are most likely seizures in a different form than what we saw before. So even though we have not seen any of the physical seizures since last week, it does not necessarily mean the treatment is working. Therefore, we are asking for more prayers as we prepare for the repeat EEG on Monday and await results. Again, it is imperative that the seizures/spasms have stopped in order to hope for continued progress developmentally.
Someone recently shared the following blog with me and it is truly a masterpiece in writing and photography. It has been my inspiration lately and is well worth the read (puts mine to shame).
www.enjoyingthesmallthings.blogspot.com
Kelle started blogging years ago, but her blog took on a whole new meaning with the unexpected diagnosis of her newborn daughter, Nella. Her father just recently wrote about the experience of finding out his granddaughter had Down syndrome and his words are beyond beautiful ("The Corridor" and "The Corridor, Part II"). As we continue to struggle with Luke's potentially life-long health issues, I am in awe of this family's outlook on life and this unexpected journey that we are on together. If only "Mommy's kisses" could truly make everything better, how easy life would be, right?
I am so glad you found kelles blog, i have followed it from the beginning, even when Lainey was a wee baby, but was not sure if I should have connected you, but you seemed to have found it anyways, small world!
ReplyDeletePoor boy and poor family, you guys are all troopers! you are in my thoughts always