Who would have thought we would celebrate a UTI? It turns out Nolan did indeed have a UTI though the antibiotics he was on were not the right kind so we have started a new round. So far he hasn’t had another fever and I believe he is starting to feel better though it is a bit hard to tell right now because he is due for a nap but won’t go down.
We are happy to have something known that can be solved. Hooray!
Nolan is better than he was but he is continuing to get fevers which we are treating aggressively with motrin. Aggressively means as soon as he reaches 100 we give him something to bring it down; normally I wouldn’t be so fast to treat it but my psyche can’t handle another seizure so soon.
He seems like his normal self, good appetite, active, silly, loving but a touch more fussy than usual. The Doctors have done some blood tests and a urine sample to rule things out. Some of the tests are still pending but some of the blood cultures came back negative for bacterial infection so we may be dealing with some unknown viral infection. He is on antibiotics for a possible UTI. At this point I am hoping that it is a UTI so we have something we can treat rather than a mysterious fever source.
Some fun news. We have begun signing with Nolan. The main ones we use are “thirsty” and “all done”. I started with those because they are the only ones I knew at the time. We are starting to expand now that Aunt Fab (who is now officially an OT!) gave me a book of signs for kids. Since Nolan is on the low end of his speech development it has been a relief for everyone for him to be able to communicate. He is pretty quick to pick up the signs which is fun to watch. He will pull out the “all done” sign when he doesn’t want his diaper changed or more recently at the doctors office when the nurse came in the room.
Will post more when we figure out what is going on.
Well, since the last post Nolan’s weight gain has been much better. We made it through the 18lb curse and have reached 19lb 2oz! I am not convinced it is due to the “hunger stimulant” he is on as his appetite still varies wildly. I think the plateau was due to his illnesses and surgery and he has finally gotten back on track from that. However, we are still giving him the meds for now, they don’t seem to be detrimental in any way and I could be wrong about their affect.
He still hasn’t found the confidence to walk on his own. He did take three quick steps between his Aunt Fab and I just this weekend so we know he can do it, he just has to believe in himself. We are trying to boost that confidence with exercises like getting him to take one or two steps between people or objects and by walking him all over creation and back while just holding onto his shirt. I am not too concerned with it really, I know he will get there one day and years from now it will only be a story about “he didn’t walk till he was two”. He had his developmental tests done recently and did very well aside from his gross motor skills issue. He came out right on target for his cognitive and way ahead on his fine motor skills. The doctors were happy and so were we.
Those are all “hooray”.
Today we had a “boo”. Nolan developed a fever that spiked high quickly last night. We gave him tylenol and it brought it down to a reasonable 101 for most of the night. Then early this morning it went shooting back up and before we could give him anything he went into a seizure. I was able to be calm for about 30 seconds of it and then freaked out because it seemed like he wasn’t able to breath. We called 911 and got the medics there pretty quick. By the time they came he was no longer seizing but was still chilling and very groggy. We ended up at the ER for awhile, they gave him Motrin which brought the fever back down quickly (it was 104 while we were there). They believe he had what I did about 10 days ago (a crud that is going around here) and that it was a febrile seizure and not anything to do with epilepsy. It has been a sleepy/fussy day but he is clearly feeling much better now, pretty much back to himself. We on the other hand are a bit wobbly.
the final “hooray” is that he is seemingly ok and up to his old tricks. There is a chance that he will be prone to these seizures. The stats are 30% of kids have them again and it may be that his complicated medical history makes him more likely to be in that 30%. And it may be that having these seizures means he will be more prone to epilepsy. But maybe not.
I, of course, really want his medical difficulties to be done, for him to have a hospital and mostly pain free childhood (ok, life is really what I want) because I feel like he has had his share. and we have too. We realize those are just wishes/hopes and that what will be will be and that we will do the best we can for him. But, oh do I hope.