Cleft Lip and/or Palette

[FionaJ]

Thanks

It is the first time I have really written at length about the last year, felt a bit cathartic. I was always just living a few days at a time but when I look at it all together no wonder I was stressed and exhausted.

I go back to work on Tues 3 days a week. I am nervous as I don't know how I'll fit things in but at the same time a bit of normality and less medical stuff I am sure will do me good.

I also have a good friend who's little girl a couple of months older than mine has PRS.

I am now doing some work with Cleftpals NSW and are looking into getting a grant to buy bottles for new mums. Apparently some heath funds cover feeding equip if it is medically necessary.

Do any of your bubs have microform, basically a near miss for a cleft lip but leaves what looks like a scar line it is actually what Joaqin Pheonix was born with, he didn't have a cleft lip. Mine has one on the other side of his lip from the one that was split.

I am also finding bubs losing a bit of weight 700g after the palate repair. He's not drinking as much and fussy with some foods, got a bout of oral thrush too. Not sure what to do.

Cheers

[adele]

Hi Fiona

Welcome. As Netty said, this is a great spot for venting and just knowing you are not alone.
With the thrush, not sure if you have tried this but I put some acidophilus powder in Alex's milk - it seemed to help him.
Sounds likeyou have had a real time of it this past year - do you have support?? I was a first time mum so i can only imagine how much more difficult it must be having other children to look after while dealing with bubs requirements over the past 12 months. I guess my words of wisdom HA HA HA are that things get 'normal' and it really does get better/easier from this point. ALex is a real boys boy and doing everthing like other kids his age now (he has dodgy hearing too. It's under review as it is hard to pin point with all the ear infections he has had) , I am back at work and .....yes we have some extra ongoing stuff to deal with but ......so far the first 12 months have proven to be the hardest and the last 6 months have been (cleft- wise) FANTASTIC !!

I hope your return to work goes well and bub is back on track real soon.

Cheers

Adele

[FionaJ]

Great idea about the acidophilus powder, where do you get it?

Good news that things should settle down cleft wise I had my cleft clinic follow up yesterday and they said they'll see us in 6 months which is a nice break from things. Also said they wold not fix his microform and brancial sinus for 1-2 years. Neither are bothering him so happy about that too.

Did your bubs do a lot of "ga ga" since his palate op, lots of back and voice sounds, ba, wa mum, ga, ra, u, huh etc. makes sense as these are the loudest and they reverberate in his head. Did they need speech therapy? No "da da" yet to DH's disappointment.

We have to work on getting him keep his hearing aids in, keeps pulling them out from under the pilot hat and chewing them .

I do have a wonderful, supportive husband who has handled the older 2 boys (6&3) fantastically. I kept Mr3yr in day care 3 days as he gets realllly bored and up to mischief. He also regressed and took 6 months to toilet train which we started just before bubs was born. Mr6yr was going to school and has stepped up and been pretty helpful if only he would stop fighting with Mr3yr.

My folks have been amazing they live only 10 min away and close to Mr6's school. They would help when I had so many appts, mum's not working. My MIL has also stepped up for a change she lives even closer, been nice even. FIL died suddenly last year when I was 7 wks pregnant and it does cross my mind that the stress did not help bubs.

Must admit Westmead Hosp overall has been wonderful and organised which helped. I could not have coped without DH and my parents. There have been times where I thought I would lose my mind, often over Mr3yr and not getting enough time to myself. Always felt tired, kept getting colds, trouble losing baby weight, hard to get into a routine etc.

My GP has helped too but waiting for hours to see her even though we had an appt did not help. I am so keen to cut down on Dr's appointments, be nice to go a week without one, I think next week will be a first one for some months.

Nice to know I'm not alone in all this experience, although I know everybody has to deal with their own challenges in life and this is just one of them. Bubs is such a beautiful baby with the most amazing blue eyes, such a little flirt and happy, snuggly disposition. Quite the inspiration. There is certainly something special about clefty kids.

Thanks
Fiona

[adele]

Glad to hear you have a great support network Fiona - it makes all teh difference doesn't it. Nice to hear the medical profession have all been supportive and organised also. Feel for you with the hearing aides - Alex doesn't have them ... yet .... and I am dreading our next check in a months time because I know if he needs them we will have all sorts of issues keeping them in

You get the acidophilus from teh chemist or health store. I used capsules - I just broke them and put half the powder contents in teh morning bottle and half in the night bottle but I think you can get different strengths etc and also I think you can buy it in powder form. i found it was a nice easy way to get it into him without a fuss.

My FIL passed away in the first few weeks of my pregnancy too (although we didn't know we were pregnant - thought it was never going to happen) so we flew international to be there at the end .... we heard there is a theory this can have an impact but apparently not proven yet so specialists do not take it into consideration at this stage. You are perfectly correct though - these clefty kids are very special

Cheers

Adele

[FionaJ]

Thanks Adele ,

I'll give the acidophilus a go. He probably really needs it after all the antibiotics and steriods he's had.

The med profession have been good overall, though still feel I have seen way too many of them, spent to much time waiting and often have to re-tell the story or re-educate them each time. Maybe I am developing 'doctor burnout' if there is such a thing .

Now I have to find ourselves a really good ENT that knows about clefts and Branchio-Oto-Renal sydrome which occurs in 1:40000 so I estimate about 100 people in Syd have it with 4-6 members in my family. Joy!!

Sorry about your FIL too.

Birthday party today for my special little one.

Cheers
Fiona

[adele]

A big happy birthday to your special little guy - what a big year he has had. Best wishes for a wonderful (and not too doctor filled) year to come.

You are right about haveing to re-explain etc with the docs - frustrating. We decided to go private for the ops, but we have to skip back and forward for the cleft clinic, speech therapy (that has been a mission to coordinate up here as there are very few - public or private), orthodontics etc. It is a bit of a juggling act but I think we have the hang of it now (I just wish it was explained to me at the begining as it would have been easier to make happen). We have a GREAT team though - the plastic surgeon is amazing and ENT is GREAT. All in Brissy (we don't have many specialists to assist Alex up here so we decided to keep all of them in one spot seeing as we have to travel for 3/4 of it anyway) - saves the confusion. We have found David (ENT) fantastic and he seems to really know his stuff. He works with the cleft kids (which is why we chose him) as a part of the mater cleft clinic as well as having a private practise. The ph 3831 3131 - maybe he can provide you with a specialist in your area that can assist (we found that just rining up to explain your circumstances etc has been really useful in getting to the right person - teh help has come from some way out specialty areas and has been great).

Have a fun party

Cheers

Adele

[leesha]

Hi and welcome Fiona!!

It's a shame you didn't find us earlier but we are here now so look forward to more chats!!!

HEY GUESS WHAT girls???????????????????????????????????? I'm pregnant!!! Just gone 13 weeks and had a dating scan today!! Bubs is all good and waved at us!!! Am very excited but a bit aprehensive about what the 20 week scan will show us this time!! Will it happen again??

Who knows but we did find out that it definately was not a genetic thing and just a structural mishap! At least if it is to happen again we are all prepared and full of knowledge!!!

So I'm not due till 9th April.....6 months to go!!!!!! WoooHoooo

xoxoxoxoxoxo