Tuesday, February 07, 2006

Sorry for the long absence

and thank you Kim and Rebbecca for giving me a prod :)

Things are completely chaotic at the moment and I am quite literally drowning in appointments. By the end of this month we will have had 15 appointments between Callum, Kieran and myself and we've already had to delay a couple of other things that came up. Luckily my mum is staying with us and is helping out. I'll start at the beginning.

Callum had a hearing test at the end of last month, just his usual 6 monthly checkup. They discovered that both his ears have large amounts of fluid in again and his hearing is being quite badly affected, so it looks like it's time for tubes (grommets) again, so I make an appointment for the following week with his ENT doctor. It's a 9am appointment so I figure we should back in work by 10:30 at the latest. I was so wrong, it was 1pm by the time we got home. First off we probably waited about 45 minutes before our appointment, how can doctors get 45 minutes behind schedule when they've only had 30 minutes worth of appointment?!?! The ENT said that yes he needs another set of tubes and he probably needs his adenoids removing as well as they're contributing to his blocked Eustachian tubes and while we're at it his tonsils are HUGE and should probably be removed. We talk it over a little and decide that we'll do it all together.

I go back to see the surgery scheduling person and we arrange a date of Feb 14th (that's a week tomorrow). Then she gives me the list of everything that needs to be done pre-surgery and the results need to be with them a week before surgery (that's today). He needs : Neck x-rays to check for AAI (Atlantoaxial Instability) because they need to tilt his head during the operation, 2 different blood tests (PT/PTT, CBC) and a pre-op physical.

We were able to go and get the neck x-rays done that day in the radiology department of the hospital but of course that's another long wait. Callum was very good and a very nice woman gave us a spare diaper because I hadn't brought anything like that with me because it was supposedly just a quick appointment! We were eventually called back and the radiologist took one look at Callum and started muttering under her breath about not being able to do the x-rays (I'm pretty sure it was just because he was a toddler not because of the DS). She wanted him to stand perfectly still with his head tilted just so and kept telling me off because I wasn't holding him correctly but she'd never explain how I was supposed to be doing it, aaarrggghh! I was getting very frustrated and pissed off and I could see her just wanting to send us home which I was not going to do after waiting for 90 minutes. Luckily she came back with the doctor and he was wonderful, he suggested different ways of positioning him, didn't mind that it took a few tries to get the films and gave very good instructions and best of all he actually smiled and talked to Callum. Callum conks out in the car on the way home and I decide that I may as well just take a day's vacation and we'll just go and do the blood tests that afternoon and get it all over and done with.

The prescription for the blood test needs to come from his pediatrician so I call them and leave a message, the on-call doctor finally gets back to me at 7pm by which time the lab has closed so it's a wasted afternoon. Long story short we get the lab work done a couple of days later and Callum is wonderful as ever and just says a quick "ow" when the needle goes in and that's that. His pediatrician fits us in for a quick physical and everything looks great (he's now 31lbs and 36inches). That's everything done for that set of appointments.

Callum's transition to the school district is the cause of the next load of appointments. An intake meeting yesterday for the school psychologist, Mark & I. We went through the forms and the process and filled out one basic questionnaire to get his skill levels (from what I remember it was 24 months for gross and fine motor and 36 months for social). The we needed to schedule his actual assessment where they have a million people all sitting in a room (okay it's not a million but it will be an OT, PT, ST, APE, special ed teacher, nurse and the school psychologist plus us and Callum of course). The time that she comes up with is 1pm, I explain that Callum naps every day from 12pm-2pm and that they will get nothing out of at a 1pm appointment as he'll be exhausted and surely this should be done at the best time for Callum. The only time they do these assessments is between 1pm and 3pm, so we come to a compromise we'll come at 2pm - Callum gets nearly a full nap and we'll also come at 11am on a different day when it'll probably only be the psychologist but at least that way she'll get a good idea of what Callum is like. Isn't lunch time a fairly typical toddler nap time?? Those 2 assessments are schedule for the 27th & 28th of this month. Callum also has a psychological exam scheduled with the regional centre on the 13th. The regional centre have been co-ordinating all his therapy from birth until he turns 3, at 3 his therapy is turned over to the school district but he will stay as a regional centre client for the rest of his life. The regional centre will deal with things that fall outside of the education system such as respite care, job shadowing, housing, benefits, that kind of stuff. A last appointment for Callum is his regular dental check up.

Wow, I'm writing a huge amount here - I must update more regularly rather than letting it all build up and then getting verbal diarrhea

Two of the appointments are mine and are very boring. One of the kids has managed to scratch my cornea and a trip to the eye doctor revealed that the sight in my right eye is pretty buggered at the moment. Luckily eyes heal pretty quickly and I've just got this gunky ointment to put in my eye each night for a week and then go back for a follow up. My other eye also had some damage and it looks like my contact lenses weren't a great fit and may have caused some damage.

Kieran accounts for 3 of the appointments none of which have occurred yet. One is his regular 18 month appointment, it'll be interesting to see what his height and weight are now. His other appointments are slightly scary, one is for an MRI (so he'll probably need to be sedated) and the other is a consultation with a neurosurgeon. Theses last two appointments all came about because we took a trip to the zoo last Sunday. While we were sitting eating lunch a man introduced himself to us and said he was a vascular doctor and had we ever had Kieran checked out. He was concerned about the size of Kieran's head (which we know is large) and the very large highly visible veins that he has on his face. I always presumed that they were so very visible due to him having very fair skin and his big head and his doctor had told us before that they would fade as he got older. The skin on his face almost looks translucent, especially around the temples where all the veins are. The doctor was very apologetic, said he didn't want to scare us but that he'd seen symptoms like that before and that it may be something that needs looking into. His pediatrician said there's no harm in having it looked at and referred us to a pediatric neurosurgeon - all the stuff in his bio looks scary but none of it seems to apply to Kieran so hopefully it's nothing. The only thing we found that might vaguely apply is something called AVM

On a happy note the kids LOVED the zoo. We haven't been for about 4 months but Callum remembered and got all excited as soon as we got out of the car. He was whooping like a money and doing the monkey sign as soon as we walked through the gate and didn't really stop! They both really liked looking at the baby orangutan who was having lots of fun playing with it's mummy.

Time for lunch, I'll stop now.


Anonymous said...

OMG-I thought I was tired, wow woman you must be exhausted.

Thank you for the reminder about checking for the neck instability. I remember that they were not able to assess this for E's last surgery because she was too young. U of M is going to see her on March 17th in the ENT dept.

I will be thinking about you during all your upcoming appointments, my goodness there is so many!!!

Jenny said...

Yes, it is Jenny from Downsyn. I sent you an email. You are very busy this month! Hope everything goes smoothly for Callum and Kieran! Keep us updated!