Holding onto HOPE....

Well, in some ways it's hard to believe it's Thursday already, but in other ways this has been the longest and busiest week we have had in a long time. I am sure some of it is coming from the stress of anticipating the cochlear implant surgery next week, and praying that NOTHING is going to keep us from that surgery we have been waiting for months for!!!

Matthew had a rough week-end with a continued increase in his "movement" episodes at night, and we are literally running on empty right now. We had a nice week-end with my Mom and brother being here as always, but Matthew was "off" all week-end, so we kind of had a feeling this was coming. I worked on Monday, picked Matthew at 4:45pm and off to my Mom's we were right from the daycare. We were almost to my Mom's when Matthew got sick all over the carseat, but I now think it was from him putting his hands in his mouth during the episodes, and I honestly think he gagged himself.

Tuesday morning we were up early and off to CHOP to meet the anesthesia team prior to his surgery there. The nurse practitioners were super nice and very thorough. My Mom and I were very impressed! That makes us feel so much better that people are asking TONS of questions about Matthew because as we know, he doesn't follow anything "standard." We then had a quick lunch with Mom and Dave and were back on the turnpike back home Tuesday afternoon. We had a terrible time getting Matthew's body to settle and relax for bed that evening, and he only slept from 10pm-2am.....yep, that's correct! Chris and I were both up with him because it was so upsetting to see our little boy like that for so many hours. Most times, we can at least get him back to sleep for an hour or so in between episodes that may last 2 hours.....but this was continuous for hours! At 630, we figured we might as well get ready for work and I know Chris and I were both wondering how we'd make it through the day yesterday.

I called Matthew's daycare at lunchtime figuring he'd have crashed and fallen asleep by then, but he surely wasn't....was still going strong even after being up since 2am. He did then take about an hour and a half nap when his body crashed. The girls at the daycare, especially Miss Doreen whom I ADORE are so good to tolerate this...especially with no concrete diagnosis. By 4pm, I felt so sick and could barely keep my eyes open at work, so I headed off early. I had already been in touch with the neurologist and made a plea to PLEASE back off of the medications because Chris and I are now just curious what it would be like with Matthew off of these awful drugs for a while. The doctor then wanted us to try another drug that is not tested in children and the side effects and unknowns are so bad we would have to sign a consent form as parents.....I don't think so! So, I just said I'd discuss it with Chris, but I already knew in my heart, it would be no!

Chris and I had to call and reschedule Matthew's meeting with his teacher of the deaf and our early intervention caseworker because we were so exhausted.....they were super understanding thankfully! Last night, Matthew slept from 920pm-245AM and was up with the episodes until about 6am. I knew there was no way I could function in clinic caring for my patients and sedating kids for spinal taps, etc with NO sleep, so I laid back down for an hour which did wonders for me....honest, it did! I didn't look near as dreadful as I did yesterday by the end of the day :)

So, that brings us to tomorrow...........tomorrow, Matthew is undergoing anesthesia for his last MRI before his implant surgery. They are doing it for a couple of reasons. First, he can't have the magnet part of the implant put in if he needed frequent MRI's, and second with his increase in neurological episodes over the past 6 weeks - we really need to be sure that Matthew does NOT have a progressive neurodegenerative disease. We know it won't change the implant surgery, but we are still praying SO HARD for a stable MRI. So, please help us pray for Matthew to get through tomorrow's anesthesia (6th one in 6 months:( - pray for stable results, and pray for Chris and I to stay calm during all of this. So many things are going on with Matthew right now, and we want him to feel safe with us, and let him feel all of the love in the world we feel for him. Chris and I have always kept HOPE in our hearts, and this time is no different. We will post more when we get results.

Before I end this post, I DO have to share with you all an amazing "Mommy" moment I had this week. Now, as every parent knows, 2 year olds can "exasperate" you at times - and Matthew is no different. He has a mind of his own at times, and has on occasion threw a few times. Add in a super tired Mommy - and those moments seem so much worse. Well, after he had worn me out with a little outburst because I wouldn't let him watch Elmo - he ran up the steps to his room. I let him go for a little bit, then it got quiet so I walked up to find the most precious sight...........he was at his bed putting his beloved puppy and monkey on his pillow. He then reached for his blanket and covered them up, and then he kneeled down on the floor next to the bed like Chris and I always do.....and he started patting his animal friends just like we do every night. So, I guess I must still make an impression all hours of the night when I am feeling "done"..................it was an amazing sight and made a Mommy's heart melt for sure..............yes, I do adore this precious little boy!!!