Hunter was supposed to have a full day appointment yesterday, but we had to postpone it for a later date, and instead, just had a regular 2 hour visit.
They took his vitals and did another blood draw. They used lidocaine to try to numb it a little this time, but it doesn't seem to make much of a difference, if at all. (That was the second time they tried it and one time they did it without). Next time, I think we are going to try emla cream, (which Tanner and Kaleigh both like) to see if it makes a difference for him. Hunter's veins are tiny. I think he's chronically (mildly) dehydrated which makes it even more difficult, and then he starts panicking, which the nurse said makes his veins "flatten." We've had the same nurse every time. She's really nice. She's always gotten it in one poke, which NEVER happened before; however, she has to fish around quite a bit...it's a much longer process than I would like and MUCH, MUCH longer than Hunter would like.
This time, Hunter turned very pale and was sweating, but cold by the time the nurse was done drawing his blood. She just kept asking him if he was ok and he said he was really tired and just wanted to lay down. His color and energy came back within a few minutes.
He has to fast for the blood draws, so as soon as she finished, I gave him his breakfast (Lays potato chips, raisins, and elecare (his elemental formula) - breakfast of champions! :) And for those of you who wonder what kind of parent would feed their kid potato chips for breakfast....well, the answer would be a parent who has a child who is allergic to almost every food. And just so you know, we are being followed by a registered dietician who not only knows we feed him like this, but who encourages it too! A year ago, he didn't have any foods that were safe for him, so he lived on just his formula, sugar cubes and ice....yep, I fed him sugar cubes or a bowl of brown sugar for his meals or snacks. He also ate (and still eats) plain shaved ice/snow cones...no syrup on it.
After breakfast, the dr. came in and checked him out. We reviewed symptoms/changes to anything/etc. One of his more obvious symptoms lately has been food refusal...just doesn't want to eat. In fact, from the nice spread I laid out for breakfast, he only ate a small handful of raisins and said he was finished. Elecare....I understand... (it tastes nasty!), but what kid WOULDN'T want potato chips for breakfast? He has also stopped eating spinach which he used to love. He won't even put it in his mouth any more, let alone eat it.
One thing that can be viewed as either a positive OR negative thing, (and I do view it differently on different days), is Hunter's energy level. He used to sleep A LOT....15 hours per day probably, sometimes more. He was very lethargic A LOT. He always wanted to be carried around and would often lay down wherever he happened to be...floor, couch, ground...didn't matter. Lately, he has had SO much energy...EXTREMELY HYPER....to the point of ME being exhausted. He is like the energizer bunny from the minute he wakes up at about 6:30 am until he goes to bed around 8:00. He' s not napping very often...used to nap A LOT. I don't know how much of this is just his age, maybe our good time of year here, something in the medicine that's making him hyper, or maybe it's the medicine actually working, but it's definitely different.
At the end of the appointment, the research coordinator had a nice surprise for Hunter. Knowing how obsessed he is with everything "firefighterish," she took us next door to the fire station where she had arranged for the firemen to give him a tour and let him feel like a real fireman for a while. They showed him the trucks, let him hold some of the tools (that were bigger than him), answered his questions, and let him sit in the truck. Then, the best part...one of the firemen looked at Hunter and asked if he wanted to drive around the block in the fire truck. So, we buckled up and off we went! He even turned on the lights and the sirens and Hunter Was In Heaven!!! When we returned to the station, the other firemen had the hose hooked up and ready to go. With a little help, they let Hunter spray water everywhere. He had so much fun! Definitely a day he'll remember for a very long time!
What a way to end the day...I'm sure Hunter will remember his fire station experience for years to come! ok...or as long as a 4 year old can remember such things.
ReplyDelete