So I have been meaning to blog about this for a while now. Atty had his six week check up at Children's a couple weeks ago. I got to take all four kids. By myself. An hour each way. To the hospital. At lunch time. Through nap time. Tiny office. Waiting. Waiting. More waiting. I'm not going to lie to you all I was scared. So scared I planned ahead and even bought special supplies to entertain team *R* (as we call ourselves). I added in lots of extra travel time so that when we got parked in the parking garage we still had time to eat a lunch I had packed in the van where they couldn't run around and get distracted. I always like to add in extra time to nurse the baby too, which is never easy in public with three other little boys. That all went smoothly except they got food all over their clothes (of course) and so they looked nothing like their prior clean selves by the time we had to go in. Oh well at least their bellies were full...they listen better that way. Gave them a little pep talk about how we are a team and we've got to work together, did the team hand shake and away we went with a silent prayer for my sanity. All actually went well. I was so proud of them. Towards the end of the office visit they got a little squirrelly but I really just felt for them at that point because we were all feeling very Done myself included. The new cool pens and paper pads for each that I got worked to entertain as well as the special snacks I packed (do you see a reoccurring food theme here). We sang songs while waiting and I wrote words to sound out on the dry erase board in the office which they enjoyed. The harder part was when the doctor was in the room talking with me because they would then start to try and get my attention (or the doctor's) at times and that was a bit frustrating. Just because I really need to hear and process what Atty's doctor was telling me. The only time I started to sweat it was when two doctors were in the room towards the end of the visit and all the boys started to act out in different ways at the same time and I had to address the behavior while the doctors waited, just so that I would be able to hear. Sort of embarrassing. We survived though. I even had to take Atty to get A Lot of blood drawn at the end of the visit and not only was he amazing through the whole thing (which was awful, the vein blew before the guy got all the blood he needed for the tests, so he went to do the other arm and it didn't work and then he settled on the finger poke and squeeze to finish.) his brothers were also. I was distracted and sad when we left because there was a lot to think about and because they had decided to drastically up Atty's medicine which had me scared. They were even thinking about hospitalizing us again. I just wanted to cry. And yet I felt so overwhelmingly thankful for my wonderful children. I let them know how amazing they were and how their team work help me out so much and made an other wise hard trip easy-peasy (as easy as a trip with four littles can be). They felt pretty stinkin proud of themselves, as they should. We even got some pictures.
Bubu's new favorite face. Ugggg. Look at Atty's great smile...even after getting all poked up. He got a new duck, his favorite thing ever, and he was loving it! I gave it to him when he was getting the blood draw to try and sooth things over. His brothers were so sweet about it and didn't fuss at all about the fact that Atty got something and they didn't. Which is hard for little kids to understand usually. I know that one well, I usually always have to buy three of everything! Which is why they rarely get new things, ha, ha!!
Oh and that stroller, yeah, it stunk. So embarrassing. It stunk and it was dirty and musty. I haven't used it since we moved and it's been stored out in the shed the whole time. I dragged it out the night before in the dark and shoved it into the van to be all prepared ahead of time. So I didn't notice the funky smell until I pulled it out and opened it up to go into the hospital. Atty wasn't walking very well at all at that point and I couldn't carry him and put the baby on my back, and hold onto Bubu and Spike, and carry every thing else too, so I had no other option but to use the nasty thing. Pretty humiliating. I guess we should have gone by the name of the stinky *R* team. Dirty kids, stinky stroller, can't get much better then that. At least they were well behaved little hill billy's.
So this is were we are at. For now. Three medicines and one that we went up on drastically. He has to take three of them in the morning and two of them at night. He was taking the third medicine at night but after a few days of that he started getting insomnia worse and worse to the point that he slept only about three fitful hours one night! I called and told them that between the little baby and a boy with insomnia I wasn't going to last so they suggested switching the med to the morning and that has been working a lot better. Atty is so tricky, any medicine that is suppose to be a sedative will make him hyper. This medicine that was keeping him awake is suppose to make you super drowsy which is why they wanted him to take it at night. He's got weird body chemistry I guess. I was reading in the side effects of this particular medicine that a small % of people got insomnia in the studies, and so of course Atty does too. He seems to like to fit into those small percentages. All the meds say that they make you drowsy, which they do make him act sort of "drunk" and fussy they just don't knock him flat like they do for others. Which is amazing considering how much medicine is being pumped into his little body right now. I have to admit I don't like it. I really don't. I do like that he is now (as of today) not having any seizures. Of course I like that. (Except for the tonic spasms he's still having those but that just comes out as a noise he makes.)
~I don't like that it is just suppressing the seizure activity not actually solving the problem (which I know they don't know how to do being as the brain is still such a mystery and all). I don't like suppressive medicine, even things like fever suppressors (I know, I know) I'm not going to get into a big long reason of why. I will say that I feel like when you suppress stuff instead of getting to the root of the problem, it can manifest its self as a different problem because its got to get out some how. That doesn't mean I never use medicine to reduce high fevers or get ride of a massive head ache, I just try not to. I'm a natural gal that's all there is to it, so I try other stuff first and often it fixes the problem. Am I getting weird enough for ya? Really that's stuff for a whole different post if I was so inclined. ~ Any ways I also don't like all the side effects of his medicine, sort term, and all the possible side effects long term. Some of the stuff straight out of the pamphlets is super scary. At one point they put Atty on a medicine, right before this last new one, that ended up making everything worse and that was really frustrating. It was a stupid mistake and they should have known better, even his main doctor said that. It was a really bad set back that should have been avoided. I don't like that it seems as if my child is an experiment. All the meds he is on haven't even been studied in his age group, nor have they been studied in this combination that he is on. I know that the doctors are frustrated too because he is not an "easy case" but they just seems so flippant about everything and that annoys me. I do feel blessed that his main doctor happens to be the only doctor I liked in our whole hospital experience, so that is nice. Although we of course still have different views hers being more main stream and mine being more alternative we still seem to be able to mutually respect each other. Something I haven't felt from any other doctor there. I keep reminding myself that we are hoping to get him on only one med as soon as it gets to a therapeutic dose and then ween him of the others, but in the mean time it makes me sick to my stomach giving him all this medicine and I keep praying that the side effects will be minimal and mild.
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Have I mentioned yet that Atty is such a trooper...absolutely resilient...amazing...and quite possibly the sweetest kid on planet earth? I am so proud of him and his positive can do attitude!
