Moms of Kids with Clefts

Marie - posted on 12/02/2008 ( 21 moms have responded )

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Hello ladies! We have been around for on month already! I just wanted to officially welcome all members, new and old, to the group and encourage you all to post and reply often. I have been so happy with all the support and friendship I have seen thus far and hope to see it continue! I know we are all busy moms as we have kids with extra health and medical needs. I also know even 2 minutes a day to reply to another mom\'s post can make a huge difference to her. \r\n\r\nSo, I thank you all for your participation thus far and hope to get to know you all even better in the coming months!\r\n\r\nI also wanted to wish you all a safe and happy (and healthy) holidays!\r\n\r\n*Marie, group admin.

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Ky - posted on 06/21/2009

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i am new also...baby is due within the month...cleft lip and palate with no other issues that we know about yet...im so glad i found this...talk about nervous jeez !

Elizabeth Ann - posted on 06/10/2009

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Hi, this is my first time on this site. I have a son who was born with cleft lip and palette in 1985, I am glad to say he is now a 6 foot 1 inches tall. He can speak very well and has had few complications. He is getting married 11th July after being with his partner for 7 years.

My only concern now is when they start having children, but they know the chances and they don't see it as a big deal, which I am very pleased about.

Susan - posted on 05/20/2009

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I am so thankful that this conversation was still up. My daughter who is 17 months old was born with a wide unilateral cleft lip/palate. She has had 4 surgeries so far-opening of her tear duct, feeding tube put in, closure of the lip & tubes, and this last one was rhinoplasty for her nose & lip, lip adhesion and larger tubes. She has also had a weight problem, and she can eat a ton! She actually tries to eat everything I eat, but due to her palate not being repaired yet usually throws it up because she can't swallow. It is good to hear that she will catch up eventually, I am thinking after the surgeries slow down she will gain alot more! Thanks!

Louise - posted on 04/24/2009

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hi mi name is louise ,and i have a daughter who was born with a cleft of the soft and hard palate she is now 2years4months and she is also very small for her age, i wondered if it was just her now i know there are others out there that have the same condition and have the same issues as she does.

Emily - posted on 01/26/2009

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Hi Kelly;



My husband had a complete bilateral cleft lip and palate at birth and his speech is also near-perfect (he has a funny was of saying the letter s sometimes but that's it)...  the speech therapy works... alas not all that quickly!



courage...!

Marie - posted on 01/24/2009

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Hi, Kelly!  (And all the others I have missed!)



When did my son start talking clearly....?  Hmmm, he will be 8 in March and still only about 25% of the people we meet can understand more than a few words here and there.  It is a huge issue in our lives.  Drew has been in speech since he was 18 months old.  We have done the best we can, but I am also the mom of 4 boys and you probably know how much "extra" time there is in a day!  Drew has a genetic condition called VCFS.  He is missing part of his 22nd chromosome.  This deletion has 180+ associated conditions- cleft palate and heart defects being two of the most common and most major.  Drew was a little different- bilateral cleft palate AND lip.  He didn't present totally typically for the syndrome.  However, severe speech delay is part of his syndrome and we are really seeing that!  I think having a syndrome associated with the cleft, especially one that effects other things important to speech (jaw, pharyngeal muscle strength, etc), makes it all the harder.  All I can say is be positive and persistant!  I have a friend in her early 20s who had a cleft lip and palate.  She had near perfect speech.  She never fails to remind me, though, that it is because she worked her tail off to get there!  It is so frustrating, but you just have to celebrate his successes and continue to help, support and advocate!

Kelly - posted on 01/22/2009

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Hi. My name is Kelly and I am the mom of 4 boys. My third, Spencer, was born 12/20/06 with Pierre Robin Sequence. We have undergone jaw distraction surgery, palatoplasty, tubes, adenoid removal, tracheotomy and now he is having a tonsillectomy and new tubes put in on Monday. He is such a trooper and takes everything in stride. Right now our biggest problem is speech. He understands so much, but cannot speak very clearly. We have been going to speech for almost a year and he has about 4 or 5 words he says clearly...mom, dad, Bob (the Builder, the tomato, Spongebob, his grandfather). When did most of your kids start speaking clearly?

Melanie - posted on 01/20/2009

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Hi I am new to this website.Its a wonderful thing you are doing.Keep it up.



I am a working mum of 4 girls the youngest of whom was born with a unilateral cleft lip.She is now 4+ and doing well.She also has other issues like ocular motor apraxia but she compensates very well for it.



I am wondering if there are other mums out there with issues similar to Samantha's and have anything to share.

Nicole - posted on 01/19/2009

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hi im a 23 year old mother of a 3 year old boy jacob. jacob was born with a unilateral cleft lip and palate, he has already had two surgerys. i have been through alot with jacob and know how stressfull it can be anyone wanting to ask a question or anything just do so im happy to help.

Jennifer - posted on 01/15/2009

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Hi all, my name is Jenn and I am a 34 year old mother of 3 (almost 4) boys which include a 10 year old and 2 1/2 year old twins with our next due in March. My son Jacob, who is one of the twins, was born on July 15, 2006 with a unilateral complete cleft lip and palate. He had his lip repair on February 14, 2007 at Sick Kids in Toronto then his palate repair on August 5, 2007. The surgeon, Dr. Fisher, did an amazing job and most people cannot even tell he had a cleft! We recently had his genetic testing done and found out that his cleft is completely isolated, which was a relief. Because of that, he only has an elevated 3% chance of passing it on to his children! We are hoping that he starts his speech therapy soon as that is the only area where he has really struggled. He has lots of words, but his pronounciation is not very good! Thank goodness for technology today and for the amazing cleft team at Sick Kids!!

User - posted on 01/14/2009

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Hey Everyone,



I been on this group for about a week or so, and never got a chance to introduce myself. My name is Jenn, and I'm 23 years old. My son Michael was born with a unilateral cleft lip and palate. He was born April 30, 2008 and he got his lip repaired the end of September 08. We are now going down to meet with his plastic surgeon at the end of the month to determine when his palate op will be :)



Any insight from those whose children already went thru the palate operation would be greatly appreciated. ( ie. how long was your stay? where was your stay? (if you were at sick kids in toronto ... did you stay in the hospital with your child? )

Becky - posted on 01/11/2009

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i love it too(guess that is why we named her that)hahah...although it gets a little frustrating when she gets all the time candice...drives me crazy!!!!!!!!i just want to say if you would lookp ast the first and last letter and actually look at her whole anme then they would see what her name is:0)

Vida - posted on 01/11/2009

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No problem, Becky.  :)  I like the name Cadence, btw.  One of my closest friends named her daughter the same. 
Yes, Vilija thrived, for sure!  I have photos of her up in the photo section, one from birth and then a few others that are more recent.

Becky - posted on 01/10/2009

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thanks vida!!!!! cadence was born with a very wide and long palate...they have done the soft palate already and they are going to do the hard palate soon as well...its good to know that you daughter thrived!!makes me feel much better!!!

Vida - posted on 01/10/2009

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Hi Becky. 
My daughter Vilija tended to be on the "petite" side all the time.  When she was born she weighed in at 7lbs, 11oz, and taking her home from the hospital she was at 6lbs, 14oz (I still remember that, LOL, and she's now 6 1/2 years old!).  She was "stuck" at 6/14 for at least 3 weeks.  There was a slight concern at first, her weight was constantly monitored during that time, but she was eating well.  It was a struggle, of course, b/c I was pretty much always feeding her.  She was born with a very wide unilateral cleft lip/palate.
She ended up thriving. 
I had to giggle when you said that your daughter eats like she should be 50lbs more.  My daughter can be the same way at times.  But, she's my petite princess.  I can't remember what her last weight was, I have to say around 47lbs.  ??



As long as the ped isn't concerned about the weight issue, than I can assure you, your daughter is OKAY.  :)

Becky - posted on 01/09/2009

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i am sooooo glad that i found this group..my name is becky and i am 25, mother of 3 and my youngest has a full cleft palate. she will be two in september and before her i had never heard of this condidtion before..she has already had tubes in last may and in october she had her first surgery..they are expecting to finish her up in late winter or early spring..my mail concern is her weight..do any of your children have low weight? i dont know if she is "just tiny: or if this has something that goes with this...she is healthy and eats like she sould be 50lbs more!!!!my ped isnt concerned but i am...just wanted to stop in and introduce myself hope to make friends and get some feedback from moms that know what i am going thru!!!

Stace - posted on 12/20/2008

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This is a great community to be a part of. I have found in times of anguish I have turned on my computer and come to this site and felt almost instantly better. It is great to know that you have support not only from your family and friends but from complete strangers too. I wish everyone safe and happy holidays and Very Merry Christmas. 4 sleeps to go. YEH!!!!!

Marie - posted on 12/03/2008

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Wow- tis the season, I guess! I hope your son feels better soon and I am excited for Vilija's performance! That is neat!

Vida - posted on 12/02/2008

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Popping in to say hello, finally. Haven't really had much to say, we're doing okay. Been keeping rather busy with the kids' activities -- school, hockey, dance. Vilija is going to be innundated with extra Nutcracker rehearsals in the next 3 weeks, that's pretty exciting, needless to say.

My son is quite ill, he came down with a virus on Saturday starting with a temp of 103, it's been fluctuating between that and 100... just a couple of hours ago it was at 104. :( So far, though, there aren't any other symptoms and he's not lethargic at all! He's just feeling a bit worn out, that's about it. Called the peds' office, if there is still fever tomorrow I'm bringing him in.

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