Callum & Kieran both had doctors appointments on Friday, Callum with the hematologist and Kieran had his 18 month check up.
Callum
They think he has autoimmune neutropenia, he need a couple more blood tests to confirm but because he's so healthy that's what they think it is. What that means is that his immune system isn't quite developed and he's producing antibodies to his own neutrophil (which are a type of white blood cell that fight infection), he should outgrow it within the next couple of years and until then they'll just monitor his blood and if he gets sick and the numbers drop really low then they'll treat him with something called Granulocyte Colony-Stimulating Factor (G-CSF)which stimulates the body into producing more neutrophil.
The doctors were both really nice and we go back in a month for a follow up. We haven't done his blood test yet because the wait for the lab was nearly and hour and we'd already been at the hospital for 90 minutes. We also need to do a follow up weight check - at Callum's pre-op physical and the beginning of the month he was 31lbs, at his appointment on Friday he was only a little over 28lbs. I know scales can be a little off but 3lbs (10% of his body weight) sounds like a pretty big drop to me in less than a month.
Kieran
Kieran has been healthy for at least 6 weeks but on the morning of his appointment, when he's supposed to be getting his vaccinations he wakes up with a streaming nose! I'm sure he must be trying to avoid those needles. He weighed in at 28 lbs and grew a couple of inches, he's at about 80th percentile for weight and about 40th for height - his doctor did assure me that he wouldn't always be square!! Couple of little eczema patches and his cold but apart from that he's doing great. He's getting 4 teeth at the moment - 3 incisors and 1 molar which would explain why he's been a little cranky lately. A quick dose of Vitamin M (Mortin) and he's happy.
Monday, February 27, 2006
Thursday, February 23, 2006
Our TV Star
The TV show that Callum taped back in November was finally aired this week. We were so excited to see our little star. He was in two episodes the first was about the 2-3 year old age and the activity he did was Texture Boxes (basically take a cardboard box, make it look pretty, cut a hand sized hole in it and put 2 or 3 things inside for the kids to feel). Callum had so much fun and they had some great shots of him putting some bright pink kids sunglasses on and wearing a rubber glove. The other episode was to do with science and the activity was playing with water (see photo). Callum was on camera for more of this episode as it was only him and one other child. Callum again had lots of fun and was very intent on what he was doing. He did try and drink the water several times (LOL) but was quickly stopped by one of the presenters.
I do have the episodes recorded on my computer so I'll try and come up with some little clips to post so that you can all take a look.
Callum was a complete natural on both the shows, wasn't bothered by the cameras, new people or the other kids. He got engrossed in both activities and picked up what he was supposed to be doing really quickly.
Hematology appointment is tomorrow, wish us luck!
Tuesday, February 21, 2006
Shrek, Shrek & More Shrek!
Callum is slowly getting better. Saturday was a great day and we even made it out to the park. Both boys were full of energy and seeing them chase each other round and round and squeal with delight gave both me and my mum face ache. Callum walked up the step from the sandpit to the path all by himself and even climber a rope ladder with only minimal help. Kieran did his funny little Frankenstein walk that all new walkers do while babbling away to himself and having lots of fun.
Sunday and Monday were not so good, Callum woke several times in the night in pain and it's so heartbreaking to see him cry and struggle during the 15 minutes or so that it takes the pain meds to kick in. As he wasn't feeling his best he's been doing lots of snuggling in front of the TV with copious amount of apple juice and rice crackers (his favourite snack). The constant refrain all day was Shrek, Shrek Shrek! He does great signing as well to get his point across, Hands up on his head to represent the donkey, pulling his ears to represent Shrek and add into that asking for Nona (Princess Fiona). With all this cuteness we just had to give in and we must have watched Shrek about 20 times this weekend. Callum's favourite part in the whole movie is actually an added extra - it's a karaoke section at the end and no matter how bad Callum was feeling he'd get up and just dance dance dance, He seems to have a special place in his heart for the "Big butt song" the only part that is in the movie is "I like big butts and I can not lie You other brothers can't deny That when a girl walks in with an itty bitty waste And a round thing in your face" and Callum just starts groovin' like there's no tomorrow.
Sunday and Monday were not so good, Callum woke several times in the night in pain and it's so heartbreaking to see him cry and struggle during the 15 minutes or so that it takes the pain meds to kick in. As he wasn't feeling his best he's been doing lots of snuggling in front of the TV with copious amount of apple juice and rice crackers (his favourite snack). The constant refrain all day was Shrek, Shrek Shrek! He does great signing as well to get his point across, Hands up on his head to represent the donkey, pulling his ears to represent Shrek and add into that asking for Nona (Princess Fiona). With all this cuteness we just had to give in and we must have watched Shrek about 20 times this weekend. Callum's favourite part in the whole movie is actually an added extra - it's a karaoke section at the end and no matter how bad Callum was feeling he'd get up and just dance dance dance, He seems to have a special place in his heart for the "Big butt song" the only part that is in the movie is "I like big butts and I can not lie You other brothers can't deny That when a girl walks in with an itty bitty waste And a round thing in your face" and Callum just starts groovin' like there's no tomorrow.
Friday, February 17, 2006
We're home
Surgery went wonderfully and Callum was a little star. Staying in the hospital over night was a pain in the bum - checking vitals every 4 hours, alarms bleeping, babies crying, etc. but the nurses were wonderful so it wasn't too bad. I'm so glad we took the portable DVD player with us, Callum woke me up at 5:30am with a big grin on his face and asking for Shrek!
Getting medicine into him has been a nightmare, he's supposed to be taking an antibiotic (Amoxicillin) twice a day, Tylenol with codeine every 4 to 6 hours and ear drops twice a day. Callum detests Tylenol and we managed to get two doses into him at the hospital, we I say we got 2 doses, what I really mean is that I got 1 1/2 doses spat out all over me and Callum got maybe 1/2 a dose into him. We gave up when we got home and have been giving him Tylenol suppositories instead which seem to be working. The Tylenol episodes left Callum refusing any meds by mouth so the antibiotics were also getting spat out everywhere. I called the doctor to ask about other options and she said not to worry - it's only precautionary and it isn't worth the big fight, wheeww. Ear drops are also a bit of a battle but at least that's quick and he can't spit them out ;-)
Callum is doing great, eating and drinking lots and generally in a good mood. He gets a bit cranky when his pain meds wear off but apart from that he's a happy little boy. He sleeps so quietly now, we have to keep checking on him because we can't hear his snoring and heavy breathing over the monitor. His voice also seems to have gotten higher, not sure if that's just because of things still being swollen from the surgery or if it's a permanent change. he sounds so cute and sweet though.
They repeated his CBC during surgery and his ANC is still low but everything else looks fine. His pediatrician has referred us to a hematologist to see if we can get an explanation as to what's going on. I looked up the doctor on the internet and he's chief of the pediatric hematology and oncology department, I hate that oncology word. Ever since we get his lab results backs I've had this little horrid voice running through the back of my mind whispering Leukemia, Leukemia, Leukemia and I want it to stop! 1 in 150 kids with Down syndrome get leukemia and it's my absolute worst nightmare. We've already had one scare with Callum when he was a few months old and he developed petechiae all over his body and had a high fever (both signs of the "L" word), I was absolutley petrified and thinking that Callum had leukemia was a million times worse than being told that he had Down syndrome. Callum continues to get petechiae whenever he gets a virus so we've stopped worrying about it and just put it down as something his body does when he's fighting off a bug. Now before people start worrying a low ANC is not a symptom of leukemia (as far as I can tell) but anything to do with blood counts being off sends me into worry mode.
I'll end with a cute Callum moment. For the longest time Callum thought kisses were the same as blowing raspberries, he's now giving proper kisses (except to his brother who always gets a special raspberry kiss before bed) and when he came home from the hospital he walked up to Jarvis, who was fast asleep on his cat tower, and gave him the gentlest of kisses right in the middle of his forehead, he's glad to be home.
Getting medicine into him has been a nightmare, he's supposed to be taking an antibiotic (Amoxicillin) twice a day, Tylenol with codeine every 4 to 6 hours and ear drops twice a day. Callum detests Tylenol and we managed to get two doses into him at the hospital, we I say we got 2 doses, what I really mean is that I got 1 1/2 doses spat out all over me and Callum got maybe 1/2 a dose into him. We gave up when we got home and have been giving him Tylenol suppositories instead which seem to be working. The Tylenol episodes left Callum refusing any meds by mouth so the antibiotics were also getting spat out everywhere. I called the doctor to ask about other options and she said not to worry - it's only precautionary and it isn't worth the big fight, wheeww. Ear drops are also a bit of a battle but at least that's quick and he can't spit them out ;-)
Callum is doing great, eating and drinking lots and generally in a good mood. He gets a bit cranky when his pain meds wear off but apart from that he's a happy little boy. He sleeps so quietly now, we have to keep checking on him because we can't hear his snoring and heavy breathing over the monitor. His voice also seems to have gotten higher, not sure if that's just because of things still being swollen from the surgery or if it's a permanent change. he sounds so cute and sweet though.
They repeated his CBC during surgery and his ANC is still low but everything else looks fine. His pediatrician has referred us to a hematologist to see if we can get an explanation as to what's going on. I looked up the doctor on the internet and he's chief of the pediatric hematology and oncology department, I hate that oncology word. Ever since we get his lab results backs I've had this little horrid voice running through the back of my mind whispering Leukemia, Leukemia, Leukemia and I want it to stop! 1 in 150 kids with Down syndrome get leukemia and it's my absolute worst nightmare. We've already had one scare with Callum when he was a few months old and he developed petechiae all over his body and had a high fever (both signs of the "L" word), I was absolutley petrified and thinking that Callum had leukemia was a million times worse than being told that he had Down syndrome. Callum continues to get petechiae whenever he gets a virus so we've stopped worrying about it and just put it down as something his body does when he's fighting off a bug. Now before people start worrying a low ANC is not a symptom of leukemia (as far as I can tell) but anything to do with blood counts being off sends me into worry mode.
I'll end with a cute Callum moment. For the longest time Callum thought kisses were the same as blowing raspberries, he's now giving proper kisses (except to his brother who always gets a special raspberry kiss before bed) and when he came home from the hospital he walked up to Jarvis, who was fast asleep on his cat tower, and gave him the gentlest of kisses right in the middle of his forehead, he's glad to be home.
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.
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.
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