Why?

OK, to be honest with you, I have no idea what I am about to write, but please understand that I need to get these emotions out by writing - and honestly, I am having a bad day. And, I am asking why???? Why have we had to go through all that we did in the past 8 1/2 months? Why do we have to put our precious son through so many things? Why can no doctor diagnose Matthew? Why does he have to suffer? He is an innocent child who has been through more in the past 8 1/2 months than most adults have in their entire life.....

To back up and fill you in on where things are, here's a little about what's been going on. Since Matthew's activation day on the 2nd of November, we worked really hard at adjusting his programs on his processor and trying to stimulate him with sounds and trying to do some conditioning responses with him. We really did work hard last week, but we were a little bummed we didn't get much of a response from him that we could tell. He wore the processor all of the time, but we didn't get a feel he was hearing anything. Matthew had a great session with his teacher of the deaf and she really helped Chris and I feel more comfortable about what we were doing. We noticed last week that Matthew's remote to his processor was malfunctioning and changing programs automatically so we were in contact with CHOP about that, and we are awaiting a new remote. Being that this new CI is brand new, we are sure there are a lot of things to work out like with anything new to the market. We also started Matthew on an antiseizure medication for his "movements/episodes" and we really saw an improvement in those! In fact, we had FOUR nights of sleep from Matthew. And, by sleep we mean in bed by 830-9, and sleeping until almost 8 the next morning!!!! We haven't had that since we became parents and it was so wonderful to know that our Matthew's body was resting and getting the sleep he needed. We also got some sleep which was wonderful! He was attentive and playful during the day, and even his teachers at school were so happy to see him doing so well. He participated with the other kids and everything!

Over the week-end, we were back at my Mom's house and Chris, Uncle Dave and Matthew hung out Saturday so I could go wedding dress shopping with my sister and my Mom which was wonderful! Megan tried on about 15 dresses and got the 2nd one she tried on..........it is gorgeous and she is going to be a stunning bride for sure! Chris headed back home to H-burg Saturday night, and Matthew and I spent the day with Mom, Megan, and David. We started to notice that something wasn't right with Matthew but we couldn't put our finger on it. He was fussy, clingy - but no fever or anything we could put our hands on. He slept well Sunday night, and I had to wake him up to head into CHOP for his appointment Monday morning. I should have known it was going to be a tough day when he melted down in the parking garage even before we got in the hospital. Smart kid has picked up on the fact that nothing good seems to come out of going to the doctor's! The audiologist right away commented on Matthew's balance as she felt that his balance was off. I hadn't noticed anything except that he did fall a lot on Sunday, but I couldn't say his balance was off. She did some hearing testing in the sound booth with Matthew and again, got no response. So, she started to try and get a response from him by increasing the programs. There was at one point a time when he stopped playing when she was doing the beeps, but it wasn't a clear cut response.. ..so the plan was to have 4 new programs to try to work through. If we get all the way through them with no response - we have to call and come back sooner, otherwise we go back the 30th of this month. She also checked his ears since I said he wasn't acting right and was wondering if he had an ear infection, so she sent us over to the ENT surgeon to be seen. She also wanted the balance issue addressed.

The ENT surgeon seemed to think Matthew's balance was OK(thankfully, I was NOT crazy) and his ears showed no infections. Again, Matthew melted down completely and I about had a meltdown having to hold him down again for yet another exam.....so much for being the safe, loving Mommy he wanted!!! He even hit me in the face which he had never done before....guess he was angry with me, and that broke a Mommy's heart for sure.....Back at my Mom's, we had some lunch then started the trip back to Harrisburg. He slept the whole way, and wanted to be held by Chris and I the entire night Monday night. We kept checking his temperature thinking something was brewing but no fever. He slept very well Monday night, but I got calls from his daycare that he wasn't acting like Matthew on Tuesday. He went from being clingy and lethargic to aggressive and extremely hyper. He was throwing his processor and just had a dreadful day. Chris and I tried to stop at Walmart on the way home, but we couldn't even control him - he is usually our best little shopper and helper! We had no idea who this crazy little man was!!! He also had been squinting a lot, was that pain? Is he having problems seeing? We do have unresolved diagnosis of his eye issues still.....what to think of all of this!!!! He also didn't eat or drink all day yesterday until last night.

We kind of had a feeling something was coming when we had trouble getting Matthew and his body to sleep last night. It was almost 10pm when he finally relaxed and fell asleep in my arms in the rocker.........he slept until 240am and then his severe episodes started resembling seizures complete with his eyes rolling back in his head. We tried to hold him, and he didn't even realize we were there with him. This went on until 640 this morning when I finally just turned his light on and stimulated him like crazy to be up for the day. When I dropped him off at daycare, I think I knew in my heart that I would be getting a call from them today. On a personal note, I have been having horrible pain the past few days and headaches that have continued and it was a bad night for me on that note, so I was already feeling crappy because of that.....bleh!

I started working on my clinic and chemo orders for tomorrow, and got the call a little after 10 from Miss Doreen that Matthew was really out of it, and has been having a lot of episodes with his eyes rolling back in his head and the jerking movements. One lasted 40 minutes, and one lasted 10 minutes. He hasn't had these episodes during the day for MONTHS now, and we really thought we were getting somewhere with his new medicine!!! I knew I couldn't leave him there.....what would the other kids think? They don't need to be scared. The teachers needed also to be able to focus on the other kids, not just my Matthew.......what was I going to do? I got off the phone and thought to myself - what was I thinking when I thought I was actually going to be able to work 32 hours this week and actually get a decent paycheck??? And, I was feeling very angry and sad.....then, I got into Mom/nurse mode and called Matthew's neurologist. You know it's bad when he actually called me back himself and just kept saying how sorry he was. And, there are a few things that could be going on:

- he's having an adverse reaction to the Keppra with the agitation/aggression, seizure like activity that has worsened, etc

- is he hearing something and it's scaring him and he's unable to communicate this to us?

- is he having pain that he just can't tell us about?

- when his CI was activated, is there something happening in his brain causing all of this since we don't know what the actual diagnosis of what's in his brain is?

So, the neurologist wants us to increase his Keppra tonight and tomorrow morning first. If there is an increase and worsening of his episodes, we know it's the Keppra and we can start weaning off of it. That means we may have a tough few days ahead of us as it is so heartbreaking to watch him go through this, and we can't do anything to help him. But, at least we would know that is what is going on. Then, maybe we can work more on increasing his programs and trying to work his CI more. Without the aggressive behavior and throwing things, he's much more in tune to what is going on. If it's not the Keppra, then who knows where we go from there.....or what kind of impact this may have on Matthew ever being able to hear due to what is in his brain. So, of course my heart is so heavy because all of these appointments started back in Feb. when he was being worked up for the cochlear implant..........and the incidental findings led to more and more crappy diagnoses and tests.....could we really have gone through all of this for nothing?

So, I ask why? Why did we have a few good days and now they are gone? Why do we have to watch poor Matthew suffer through these neuro movements and craziness? Why couldn't we just have gotten some response with the audiologist in the 2 visits with activation? Just a little something promising, that's all we wanted! Why do I have to be in terrible pain right now as a result of a lousy surgery a few years ago? Why is everything a fight and a struggle? Why are there so many unknowns? Why can't we just come home and play with our child and be planning fun Christmas activities for the next few weeks? Why can't I simply work more than 25 hours in a week - the bills are getting paid, but things are very tight and my paid time off left is minimal.....thank God my employer and co-workers are amazingly supportive.

OK, I am not going crazy honest....I just needed to vent, and get this off my chest. I'm tired, I don't feel good, and I am just so frustrated that we have done everything we possibly can for our precious child and have put him through so much.....to just have no answers and feel like we are failing Matthew. In some ways, we'd love to be back in China with him in our hotel room - where we didn't know anything about his many, many medical problems just having that wonderful family time..............but in other ways, I am so thankful to have him here home with us trying to give him the care that he desperately needs. I cannot imagine what would have happened to him otherwise.

But even though I am having a really lousy day, please know that we love Matthew more than you could ever imagine, and that's why this is so hard and makes our hearts so heavy. We just want to help him and we will keep on trying to do whatever we need to do, that's for sure. And, we will get through this....and no matter what, Matthew is going to be surrounded with love and support always. Right now, it's his hugs and kisses, forgiveness, and smiles that are getting us through. Plus, all of you that support us in different ways - we really appreciate and need the continued support even though we really hate to admit that sometimes.

On a special note, we got to experience Matthew seeing his very first Christmas tree recently, and what an amazing time of year this will be for all of us. Experiencing all of these "firsts" through Matthew's big eyes and emotions are going to make this season so special for all of us.......another way that our precious child will carry US through.......

Sorry if it was a bummer of a post, but it has been a rough day :(