Thursday, January 05, 2012

And five days later...

It has been such a great break from school! This longer than usual break for Christmas makes me dream of summer time and of not having to be on a school schedule! We started back part time homeschooling Brianna since she missed some days while I traveled after Thanksgiving. Now she and I are working on school during the other kids' break to make up for the missed days.

We have also been spending some time outside in this beautiful weather! It has been chilly but not cold until Tuesday. Then it got to be cold :). Even a Florida cold is still over 50 and a jacket can take care of that! Emma, Brianna, and Lynae have been learning new tricks like pedaling a tricycle or riding a scooter. James has been trying out more and more activities without too much prompting and is the most excited about the pre-bike that they got for Christmas. It's a bike. Made for toddlers to teach balance, but it doesn't have pedals to get in the way. Google it or check it out on YouTube to see some interesting videos of the things some little kids can do on them! So far no great success, but James really wants to try!

We just got two new helmets so ALL of the kids will now have their own. In the last year we've been sharing them and resizing and driving ourselves nuts :). Now they can all have one and we can. Just play!

Brianna turned six on Tuesday and on Monday evening we had a few family members over to celebrate her! She enjoyed it and has carried around a card shaped like the number six for the last two days. She even slept with it last night! We ask her how old she is and she says "five". Then we say, "no, you had your birthday, now you're six!" and she says "I'm six!". Then we say again... "so, how old are you?" and her answer is always the same. "Five."

Yesterday we had a BUSY day! We got up earlier than our winter break days have been and got going right away. Michael and I and six of the kids headed down 45 minutes drive to a doctor visit at the ENT for all six of them. Here's what happened with each:

Aleksa: failed OAE (hearing test). Failed tympanogram (tests the ear drum function). One side indicated fluid or possible fluid. The other was 'unusual' and not fluid but still failed. She will be having a sedated ex am and possibly getting tubes during that procedure.

Emma: failed the OAE in one ear, passed the tymp. She goes back in 4-6 months just to recheck.

Wesley: he isn't there for hearing, he's there for possibked sleep apnea issues discovered after his surgery in April. We are going to do a sleep study just to be sure whethr something's going on or not. That's being scheduled...

Brianna: passed hearing, ears are clear though she still has a small hole in one ear drum from previous tubes that didn't heal up after the tube came out. That's been there for almost a year. The doctor mentioned a poor eustation tube function to Michael after I had to leave. Not sure what he meant by that if her OAE and tymp were both fine... But she gos back in 4 months...

James: no issues! He hasn't had much sickness at all since August except strep when the whole family had it! No ear infections, no issues... He goes back in 6 months just to recheck but... Yay!

Micah: though he just got over an ear infection, his tubes still look good and aren't clogged up even from the drainage. He shouldn't get so many ear infections, but he already has tubes so what else can you do? He go back in 6 months.

All together not so bad. One sedated exam and one sleep study in the works of being scheduled.

I had to run out before the appointments were finished because despite our 9 am ENT appointments, I also had an appointment that was equally as difficult to schedule for Wesley to have his EDG scope done at the hospital an hour from there. We were supposed to be there for registration at 11 am... So I should leave the ENT at 10. I stayed until 1030 because Mike was just finishing up with the last child that needed a hearing test at that point and only needed to talk to the doctor a second time about two of the kids. I managed to do all six kids' first round (while Mike kept the rest of the kids then began cycling through with the audiologist with those that needed hearing tests). And I did the second visit with Aleksa after her hearing test.

Then, I drove to the hospital and was glad not to hit traffic! I got there at 1130 and they weren't busy so it worked out just fine! His procedure wasn't scheduled until 1 and we went right through registration, met with the anesthesiologist and the doctor and got him all ready to go back. They gave him a pre med since he was fussing every time anyone came in to the room to talk... He doesn't love doctors... He was almost asleep except for his occasional giggles when they did come to take him back to the OR.

An EGD is an Endo-gastro-duodenal scope. Basically goes through the throat, stomach, and into the bottom of the stomach area to look at everything. This was done because he still is having a hard time getting in enough calories in a day to gain weight. In the last year he has gained only 3 pounds, which puts him weighing 3 pounds more than our tiny 2 year old. Wesley will be 6 next month. We switched to an all liquid diet with him in the summ because he was losing or barely maintaining weight on a regular food diet. This is why he is so small to start with, because in Ukraine he was given whatever he ate in whatever time they decided to feed him in, and then when they were done, he was done too even if he didn't eat it all. We of course would sit there for him to eat it all, but sometimes that would take 2 hours! When we went to a Pediasure diet he began gaining veery slowly. We have also done an all blended diet, but he goes back and forth between refusing the blended and refusing the Pediasure.

On top of all of that, Wesley loves to EAT. He gets mad when he's given a drink and we are all eating. If he finishes the drink, we will offer him some food, but often he won't drink and it becomes a meal of battles. We tend to have cycles of this, but it is wearing for him and us to do. We don't want to fight with him to drink three meals a day every day! And, we wan thim to be ab le to enjoy meal time, not to suffer through it...

The scope was all normal, which is good and bad :). If there was something like evident h pylori or something like that, then maybe there would be a way for him to gain on a different diet after treatment. Of course you never hope for parasites, but at least they do have a cure... As it is, it looks like we are probably looking at getting a g-tube in the next few months. That way we can tube feed him the required liquid calories when it's not meal time, and let him eat some real food with us when we are all sitting down to eat. Yes, we have tried giving the Pediasure between meals like this... He fights us on it and then ends up spending HOURS at the table, both getting his Pediasure and when we are all eating. He also ends up not drinking the pedasure most of the the time and we have to I've it back to hum at meal time instead of food again anyway since he has to have the calories...

So... Yesterday was a long day, leaving the house at 8 and getting back home at almost 5pm after seven doctor visits and 3 hours of driving between them.

Today is a lazy day at home! No school until Monday and a beautiful Florida winter day with a high of 65... Time for bike riding and scooters and sidewalk chalk with a picnic lunch outside :). Then cozy naps and an afternoon with four kids' speech/feeding therapy sessions...

1 comment:

  1. I'm SO far behind on your blog. Asher also failed his OAE in both ears. He read ZERO or below in EACH ear. UGH ! He's having surgery the end of Feb which will be what we call a "tune up" with 5 or 6 things done at once. Ok, maybe it's an overhaul? LOL Anyway, one of them will be the ABR and I can't wait to hear what we find out with that!