Not sure how to feel....

Dear Friends and Family - Chris and I sat and talked a lot tonight about what has transpired over the past week and a half, and we have recognized that we are feeling very overwhelmed right now as the road with Matthew has gotten even more difficult. Since our last email, things have been extremely difficult on us and for Matthew. As you all know, we have been changing medications often for Matthew's neurological issues and these episodes Matthew has had where his arms and legs jerk abnormally, his body tremors, his eyes roll back in his head. No one knows what is causing them, and they are dreadful to watch....and not a good week for his neurologist to be on vacation :(Well, last week we had increased one of the medications and by last Tuesday evening, I had to speak with the on call neurologist because Matthew's behaviors and neurological behaviors were increasing and were occurring during the day even at daycare. Matthew lost his desire to play with toys, and seemed to be flailing and having abnormal movements all day. His legs were weak and he wasn't walking right. Tuesday night, we cut his medication dose in half, and we observed him until Thursday. On Thursday, I received calls from his daycare that he wasn't doing well, that he just laid on the mats in the fetal position real stiff and his eyes began making side to side movements as well as rolling back in his head. Needless to say, we were petrified and after Matthew's cardiologist appt. we were on the phone with the on call neurologist as well. He had me stop the one medication and give a dose of a seizure medication that night. (*On a very positive side note, Matthew's cardiologist is going to clear him for the cochlear implant surgery*) and we can just continue to monitor his heart in the future....he did well with the 24 hour monitor he worse...*)My Mom had come up Thursday evening to watch Matthew on Friday since he would be hooked up to the monitor on Friday, and thank God she was there with him on Friday. Soon after he woke up on Friday, he was unable to walk or sit up at all on his own. When my Mom called me at work not even an hour after I had gotten there, I knew something was wrong. I just never imagined getting a call telling me that my child couldn't walk or sit up........so, I put in calls immediately to Matthew's pediatrician and the neurologist. I rushed home from work, and was so heartbroken to see my child lying slumped over on his left side on the couch - and he didn't even recognize that I was there. Usually we get HUGE welcoming hugs and smiles when Chris and I come home - but he didn't even know I was there. I immediately picked him up and tried to get him to stand up, which he couldn't do. He flopped on his bottom, then fell back and hit his head on the floor. I knew we needed to get him seen ASAP so I quickly packed a bag and we set off on the 40 minute trip to the neurologist. THe whole car ride down, Matthew's poor little arms were jerking, his legs couldn't keep still, and his eyes were rolling. SO completely heartwrenching, especially when we walked into the office and all of the office staff and nurses who know Matthew were so shocked as they saw me carrying him like a limp ragdoll into the office. They knew that wasn't my child for sure.Over the next 2 hours as the neurologist was assessing him, going over Matthew's records, and monitoring him - Matthew gained some of his neurological status back again. He was able to walk some, but his coordination was still off. He wondered if Matthew had "episodic ataxia" and looking at Matthew's neurologists' notes, and started Matthew on a medication called Diamox, which is a diuretic that sometimes is beneficial in children with episodic ataxia and ?seizure disorders. We were to start that on Saturday morning. We gave him some Benadryl and Tylenol that afternoon to try and calm Matthew's body from being so tense, and he did sleep for about 2 1/2 hours on Friday afternoon. What a blessing it was to see him rest peacefully without his body jerking and moving all the time. By Friday evening, Matthew gave us all a smile - oh, how we had been dying to see his smile all day!!! He was still unsteady on his feet at times, but was definitely more with it. His Mom-Mom bought him his very first tricycle so he had fun sitting on that with Daddy pushing him around!!!He slept OK on Friday night and was great when he got up on Saturday morning....soon after he got up though, he fell to his side and his body got all tense again and his eyes shook side to side and rolled back in his head. We were once again petrified but the doctor had told us if we could interrupt the episode and get Matthew to stop even for a second, we just needed to ride it out. Thankfully it wasn't as severe as Friday but it was still scary. We decided to take him to Dutch Wonderland for the late morning/early afternoon since we would have all gone stir crazy just watching him. He spent most of the day in our arms or in the stroller, which is not our normal Matthew. We usually can't keep up with him! He did get to ride his first pony and we loved that he just wanted to pet the pony as he rode along - too precious. Just seeing things through his eyes for the first time is such a gift. Sunday, Matthew's poor body just didn't stop ALL DAY LONG - instead of being lethargic and out of it, he was alert, active, and out of it. That was a new heartbreaking. We were so nervous about leaving him in daycare yesterday and of course we got a call from the daycare that Matthew wasn't acting right....we knew that would happen. He was lying on the mats, stiff, twitching and having abnormal movements. Once again, we were on the phone to neurology. We were dying for Matthew's doctor to be back from vacation but he wasn't yet. They decided to increase the new medicine to twice a day, and keep observing him. Last night, he just laid on the couch all evening long, didn't want to play, and just wanted us to hold him which we did....so hard.THis morning, Matthew had trouble walking again so I kept him home with me until his walking was more steady. I dropped him off at daycare, and then I got a call from Matthew's neurolgist (thank goodness) and he had me summarize all that happened last week! He is such a great man, and wanted to go over every detail from the past week. He is so thorough and we are blessed by that! He is going to increase Matthew's medication to three times a day for the diuretic. He then thought of one more test to do on Matthew - he doesn't think this is what Matthew has, but he is trying so hard to rule everything out.When he told me what urine I needed to collect, I about had a panic attack at my desk today.........Matthew was going to be tested for neuroblastoma, a type of childhood cancer. Now, most of you know I am a peds oncology nurse and Chris is a cancer survivor - so this hit us pretty hard. With the neuroblastoma that he is thinking of, patients could also have something called opsoclonus/myoclonus which is characterized by rapid eyes movements, muscle jerking and twitching, no sleeping, and loss of coordination/ataxia. Those pieces of the puzzle Matthew has. It will take about a week to get the results back of this test. At this point, we don't even know what to ask people to pray for. Do we pray for this diagnosis so then the doctors will have something to treat, or do we pray to not have this? But, then what do we do besides guessing at a diagnosis and keep trying medications that may or may not make things worse.....we are so scared, so unsure of the future, and desperately trying to take one day at a time. This is by far the most difficult thing we have ever been through. We just want someone to find out what is wrong with our precious child and be able to treat it in whatever way we can. We are trying so hard to remain positive, strong, and not be afraid but it is hard, so very hard. We have our 6 month home visit with the social worker on Thursday evening and we had to document Matthew's appointments and tests. As of today, he's had 37 appointments and tests since we have been home. So, I guess that's why we feel physically and emotionally tired??? That doesn't count his 2 therapy sessions a week from the teacher of the deaf! And, we still managed to get his new hearing aids fitted today, and worked on cleaning the house for the social worker coming in 2 days :)We are doing all that we can to advocate for Matthew on a daily basis. It's amazing how trusting he is, how much love he shows, and we just love him so much. Our hearts break when he is so sick, and we are so thankful that we have been blessed with Matthew in our lives. As hard as some of the days and nights are, we wouldn't trade them in for the world.........we believe there is an amazing future there for him, and we will continue to do whatever we can to help make that possible! But, we are praying so hard for the doctors to find a diagnosis and a treatment plan for our precious child. Thanks for caring and for praying!

Love,Melissa and Chris