Asher was a big old mess last Thursday, he was so sad, and he looked just terrible so I decided to take him to the doctor to make sure nothing too bad was wrong (I should mention three cousins just had strep!). He had a terrible fever that I was watching all night and Ibuprofen just wasn't cutting it. That is not typical for my kiddos, and we had no Tylenol in the house! His cute little skinny body looked adorable in just a diaper sleeping next to me though. We went and the NP said his throat had all kinds of blisters all over the back of it and it was either hand, foot and mouth or Strep. While Asher is a little young for a Strep test they decided to do one anyway. The NP said she was shocked the test came back negative because it looked so bad. Poor baby!
She gave me a script for a compound mouth wash that has four ingredients in it. I was to slightly water down and spray in the back of his throat to numb the sores. So I had a bit of running around to do while finding someone who would mix this up (took way too long...) and Target finally worked for us. BUT, that also took way too long. I am not sure I want to go in Target again for a LONG time! Managing grumpy, hungry kids in a store for that long? Bad! Dylan was even getting impatient and trying to stand up in the cart!
Cue a call from Matthew from Lake Powell, talking about how sick Duncan was and how bad his throat hurt. Duncan's a... well... okay, I will just say it... he is a bit of a wimp. So I can only imagine what his company would be like if the back of his throat was covered with blisters! So I told Matthew to check the back of his throat and it's just a virus so they have to just dope them up and ride it out.
When they got home from Lake Powell I was ready to send Duncan back! You would think the kid was dying, DYING every time he swallowed! So just in case it was strep we headed of to the Doctor again to have him checked. Strep was negative and there were two, TWO blisters that the doctor cold see. TWO! And Asher's throat was covered??? Really?? Apparently my sisters looked and said they had seen a couple so stop giving him the benefit of the doubt here and thinking they just wet away! (Yea, I know you were doing it.) Oh my word. Meanwhile Asher is fine and last night every time Duncan woke up he was screaming bloody murder waking everyone in the house up because it hurt to swallow. Please tell me he will never get sick again... please? Give me a break! And my sweet, adorable husband is just way too nurturing for Duncan's own good!
We are needing to start the new seizure medicine Depakote because Dylan is having spasms kind of regularly again. Bummer, but we were ready and it was bound to happen. I called and we have to get a baseline measurement on a few things, including liver function, since that's what Depakote can effect. So there I was, with all three of my littles headed up to the Children's Hospital! Thank goodness for handicap parking, we only use it when we really need it and this qualified! I used the old stroller because I needed to strap them in while I was tending to Dylan so Dylan was in the front and I laid back the back seat and buckled Asher in then slipped Ian in behind him. (Just an FYI here do not pull Dylan out first when they are like this because it's a little back heavy and whoopsie! Back it goes! Tipped back stroller ad two cute boys wondering why they were all of a sudden on top of each other! Hope no one was looking!)
Dylan was good for her draw, she got mad, but didn't really cry cry. Thankfully they got it in one poke! Yes! Her right arm is her lucky arm!
After the lab it was taking Paula a bit of time to get back to me on the meds. Hmmm... She was leaving me messages that she was working on it and had to talk to Dr. Neuro to make sure they were going to go forward as planned. So when I finally talked to her, just yesterday, she said Dylan's liver numbers were a little high. She said normal was 5-35 and Dylan was at 45. I am not sure what this means. She said it could be Dylan's baseline though and 45 is a lot different from, say 135, so slightly elevated isn't a huge issue. This forced me to wrack my brain on what Holoprosencephaly had to do with the liver since I had Dr. Ped order a liver test early on because I had read something about it. I found what I was looking for, it's not Holoprosencephaly that is the issue for the liver but rather the missing SHH gene. It can cause fatty liver, something in that gene protects the liver. So I also passed on this information, causing Paula to also probably have to place a call to genetics.
She talked to me about the Depakote sprinkles but because Dylan is tub fed, it's not a good match because it can clog the tube. There is a suspension but you actually have to give it four times a day (FOUR!), not great, but not a huge issue, we would do it if we needed to. She is also looking into whether or not a time release capsule can be crushed and given through the tube. So we are on hold here and have Paula running around for us again.
Okay - Before I could get this published she called back and we have a plan. We will be getting the pills and crushing them. We will be increasing the dose slowly after five days at a time and we will be going back to do the labs and check her liver and levels on the 24th. Once she is established on this we will start weaning her from the Zonegran. Hopefully one of my sisters will be available to watch the boys when I take her up there, three was fine once... let's not push it.
Dylan had an appointment with Dr.Endo on Tuesday. I was a little afraid that Matthew wouldn't get back from Powell on time to take her and I would have to take all three but phew! So he took and as usual, I have no idea the full extent of what was said. Love not going, don't love not knowing. Apparently her growth has slowed since we stopped giving her her daily poke of growth hormone. Matthew said I am getting my wish that she is small. Woohoo.
I guess there is some concern about muscle mass and her getting chubby without the steroid shot to help with building the muscle but she is doing superbly well in the weight area right now. (Woo hoo! Always a struggle with tube few kids! Managing weight!) She has finally crested 30 lbs and weighs in at a whopping 30 lbs 6 oz. Not too shabby. She looks good too. We are hoping that, because she is so active, we won't have an issue with her chubbing up. This also makes me happy because I try to squeeze in a little food at night to help with her weight since we haven't been able to increase he food for months! She is still not on the 'typical' charts for a 4 year old. This is SO okay by me! Her BMI is the highest it's ever been on the toddler chart at 16.4.
No labs either! A concern of mine since I had just taken her in to get a draw.
Dylan had school on Monday but Duncan stayed home on account of, you know, him dying and all. But I think he will be able to go on Wednesday. He was a little sad to have missed it. I guess Dylan had a good day at school and apparently I shocked Ms. Debi who had no idea I was pregnant. I guess that would be a shocker... maybe the last time they had school a couple of weeks ago she just thought I was having a fat day?
This is blue... of blue, black and brown fame. He has to have this or black at all times... it's driving me NUTS! Really. He will stop in his tracks and go "Booo!" Like, how dare we go on with our lives not knowing where blue is?!
1 comment:
I am finally catching up on blogs. I don't know how you do it my dear!
Post a Comment