Okay, sorry for the complete lack of posting that has been going on for the past two weeks. We are still here and alive. School is keeping me quite busy and the boys are doing a wonderful job of tying up the rest of my time. So, here is an abbreviated list of what has been going on since my last post on 1-19.
~ He was taken off of the Adderall due to the psychosis and then had to be put on to Focalin XR due to a complete inability to function. The Focalin XR did a great job of keeping him focused during the day but had a pesky little side effect of causing Carson to wake up at 2am and not go back to bed AT ALL and take no naps the whole day. After 5 straight days of our house being torn limb from limb and the whole family (well, minus Al) getting no sleep, we took Carson off of the Focalin. We started a new med called Tenex which is not a stimulant, it is actually a blood pressure med that they use for ADHD children. It has a side effect of sleepiness in the initial few weeks which we have definitely been noticing (i.e. Carson is taking a nap everyday AND going to bed at 8pm every night w/o fighting us!!) but it also has the benefits that is won't stunt his growth or kill his appetite like the stimulant meds. His teacher sent home a note today saying that "there has not been so much impulsive hitting this week and is it good to see him working cooperatively with other children!". That was a great note to get!
~ Carson had a sleep study last Tuesday at Children's Hospital that was interesting. They glued electrodes all over his head and face, he had sensors on his arms, legs, and body, there were bands around his chest and abdomen, a carbon dioxide monitor that looked just like a nasal cannula with tusks, and a pulse-ox among other things. Then the electrodes had wires attached to them and he was attached to a unit on the wall! I don't know how the child slept but he did. We don't have the results back yet but the nurse told me that he snored, had some apnea, teeth grinding, and sleep talking through the night. We should have the official report from the ENT's office today or tomorrow.
~ The visit to the hematologist on Friday went well. The ENT sent us there to ensure that Carson does not have Von Willebrand's Disease even though they did a complete work-up for it in December through his ped's office. I guess since he was on a bunch of steroids at the time of the December blood draw, it could have falsely elevated his blood levels so they needed to re-do all 9 vials of blood. The T&A surgery and possible reconstructive throat surgery Carson is having is quite bloody and if he did have Von Willebrand's Disease, he would have to have a drug called DDAVP prior to the surgery so he wouldn't bleed out. Well, the hematologist called yesterday and his preliminary blood results look GREAT! They are almost 100% positive that he does not have Von Willebrand's Disease like his daddy and Granny Bass!! YAY!
Now on to Eli....
~ Massive amounts of wheezes seem to have taken up residence in Eli's lungs. We are on Flovent BID as usual and Albuterol q4hrs. They almost wouldn't give him his Synagis injections last week b/c it is contraindicated in children with a pronounced wheeze. Thankfully we convinced them that Eli is just too respiratory compromised to take the risk of not getting his Synagis and that since he is already wheezing, if he got RSV on top of that, it would be a bad hospitalization for sure. They agreed but made us stay over 30 minutes post-shot to ensure his wheezing didn't get worse.
~ Eli is a crabby baby lately. He is finally getting some teeth (right now he is 19.5 months and only has 6 teeth). His top two molars are trying to break their way through and the tiny white points have managed to pop through the gums. He is a miserable teether and is constantly chewing on his hands and fussing. We noticed two days ago that there are two white bumps beside each of his bottom teeth so hopefully he will have a grand total of 4 bottom teeth in the next few weeks.
~ Eli is growing!! We are still on the Peptamen Jr. elemental formula (Tiff, I know you asked). It is 60% MCT oil and broken down for Eli's compromised GI system. He seems to still get a slight bumpy, red rash when he gets normal milk instead of his Peptamen Jr. We are doing a great job of weaning down on tube feeds and only need his feeding tube a few nights a week. He still needs vented through his MIC-key several times a day and his teething seems to have aggravated some retching and hiccup routines dealing with his Nissen fundo unfortunately. Hopefully that will pass.
~ Speech is coming along fabulously. New words are popping out of his mouth everyday. He loves saying Carson's name and Carson gets a kick out of it too. Last night he wanted a bite of my cookie and I said, "What do you say?" and he said, "I say peeaaasss." It was so cute. I'm loving this. I'm sure when his speech therapist comes in a few weeks that he will be discharged! Hooray for one less appointment!
~ I'm keeping an eye on a weird foot turning in thing (is that technical enough for you??). Eli is turning in his left foot funny when he is sitting or laying, not walking, all of a sudden. It looks a bit like a CP thing to me and so I will mention it to our PT and OT when they come. I'm hoping it is just a habitual thing but he doesn't seem to realize it's happening.
Now that I've written my SHORT update, I'm going to follow this post with a picture post since I know you have missed seeing Carson and Eli's cheery faces!