a's assessment for cleft palate surgery + update on the girls

[Guest guest]

Hello,

What can I say? Life with a couple of 9 months old and a 4 years old

can be really busy! But I have to say that it is the " good busy " and

I truly LOVE the way things are going.

a (9 mo, T21) had her 9 months assessment in preparation of her

cleft palate surgery. We took a trip to the " Hospital for sick

children " in Toronto and ended up being there for 6 hours.

Speaking of this hospital, why would somebody in their right mind

name a hospital " for SICK children " is beyond my understanding…Were

they concerned that somebody might confuse it with the " Hospital for

healthy children " ? Their logo is… " SickKids " and it's everywhere you

look. I don't get it….

Leaving the name aside, it really is a great hospital and the people

that work there are amazing.

We started the day with a hearing test. We know that a does hear

but the problem is that nobody really knows how much she does hear.

She failed the newborn hearing test, passed the Auditory brainstem

response (ABR) test about 4 months ago but had a lot of fluid in her

ears, then about 2 months ago she failed the hearing test where

noises are coming from different areas and she's supposed to react to

them (not sure what the name of this test is…). The conclusion

was: " we're getting conflicting results " . We repeated this very last

test on Wed and we still don't know how much she hears. It is pretty

frustrating…..

a has a cleft palate (the roof of her mouth is not closed).

However, she is my little hero and has mastered very well the skills

of eating and drinking. The cleft does not interfere too much with

her feeding but it has to be fixed because it would affect her

speech. This surgery is usually performed between 12-18 months of

age. We were really hoping to get the surgery date but apparently it

doesn't work like that. We made the….waiting list and we will find

out what the day of the surgery is 2 weeks before it will happen. We

are hoping to have it done by the end of March.Basically we can plan…

nothing at this time.

We were told that the surgery will take 3-4 hours and we'll spend 2-3

nights in the hospital. The recovery will take about 3 weeks and

a will have to wear elbow restraints to prevent her from putting

anything in her mouth.

After the surgery is done, the ENT specialist will have a look at her

ears, drain any fluid and put in tubes if necessary. This way they

avoid putting her twice under. And that's a good thing.

We started private PT (Medek method) about 2 months ago and we

absolutely love the progress that she has made. We were given a set

of 8 exercises that we did twice a day and her trunk control improved

unbelievable. We now " promoted " to 6 more advanced exercises and

things are going well. She really enjoys them with us but still cries

her head off from the moment she lays eyes on her therapist.

Tianna, her twin, started crawling a couple of weeks ago. Now she's

here, the next second she's gone. It's unbelievable the speed that

this kid reaches! And she has this special smile just for a that

simply makes my heart melt.

I almost forgot, we had our 9 months check up yesterday and a is

14 lb. 3 oz ( born at 5.1) and Tianna is 13 lb. 4 oz ( born at 4.4).

The doctor was really pleased with a and had only words of praise

for her. I was soooooo proud!!!!!

And Alyssa, the proudest BIG sister ever is really thrilled with HER

girls.

That's it for today.

Take care,

Anca, proud mommy to

Alyssa (Jun 2004)

a (T21) & Tianna ( Nov 2007)

[Guest guest]

sounds like things are going well! Keep us posted.Hello,What can I say? Life with a couple of 9 months old and a 4 years old can be really busy! But I have to say that it is the "good busy" and I truly LOVE the way things are going.a (9 mo, T21) had her 9 months assessment in preparation of her cleft palate surgery. We took a trip to the "Hospital for sick children" in Toronto and ended up being there for 6 hours. Speaking of this hospital, why would somebody in their right mind name a hospital "for SICK children" is beyond my understanding…Were they concerned that somebody might confuse it with the "Hospital for healthy children"? Their logo is… "SickKids" and it's everywhere you look. I don't get it…. Leaving the name aside, it really is a great hospital and the people that work there are amazing. We started the day with a hearing test. We know that a does hear but the problem is that nobody really knows how much she does hear. She failed the newborn hearing test, passed the Auditory brainstem response (ABR) test about 4 months ago but had a lot of fluid in her ears, then about 2 months ago she failed the hearing test where noises are coming from different areas and she's supposed to react to them (not sure what the name of this test is…). The conclusion was: "we're getting conflicting results". We repeated this very last test on Wed and we still don't know how much she hears. It is pretty frustrating…..a has a cleft palate (the roof of her mouth is not closed). However, she is my little hero and has mastered very well the skills of eating and drinking. The cleft does not interfere too much with her feeding but it has to be fixed because it would affect her speech. This surgery is usually performed between 12-18 months of age. We were really hoping to get the surgery date but apparently it doesn't work like that. We made the….waiting list and we will find out what the day of the surgery is 2 weeks before it will happen. We are hoping to have it done by the end of March.Basically we can plan…nothing at this time. We were told that the surgery will take 3-4 hours and we'll spend 2-3 nights in the hospital. The recovery will take about 3 weeks and a will have to wear elbow restraints to prevent her from putting anything in her mouth. After the surgery is done, the ENT specialist will have a look at her ears, drain any fluid and put in tubes if necessary. This way they avoid putting her twice under. And that's a good thing.We started private PT (Medek method) about 2 months ago and we absolutely love the progress that she has made. We were given a set of 8 exercises that we did twice a day and her trunk control improved unbelievable. We now "promoted" to 6 more advanced exercises and things are going well. She really enjoys them with us but still cries her head off from the moment she lays eyes on her therapist.Tianna, her twin, started crawling a couple of weeks ago. Now she's here, the next second she's gone. It's unbelievable the speed that this kid reaches! And she has this special smile just for a that simply makes my heart melt.I almost forgot, we had our 9 months check up yesterday and a is 14 lb. 3 oz ( born at 5.1) and Tianna is 13 lb. 4 oz ( born at 4.4). The doctor was really pleased with a and had only words of praise for her. I was soooooo proud!!!!!And Alyssa, the proudest BIG sister ever is really thrilled with HER girls. That's it for today.Take care,Anca, proud mommy toAlyssa (Jun 2004)a (T21) & Tianna ( Nov 2007)