From: Deborah Hatfield <debhat70@...>
Subject: Re: [MarshallSyndrome] Re: (unknown)
To: MarshallSyndrome@yahoogroups.com
Date: Tuesday, November 11, 2008, 12:01 PM

Hi: I was wondering if you could clue me in on what the recovery is like for palate surgery.  How long before he can eat, pain management, etc.  It makes us very nervous, of course, but we are anxious to get it over with.  They are waiting so long because they wanted to give the lower jaw ample time to grow, but I am hoping that we'll set a surgery date at the consult in December. Deb --- On Tue, 11/4/08, Mandy Gianotti <mndygianotti@ yahoo.com> wrote: From: Mandy Gianotti <mndygianotti@ yahoo.com> Subject: Re: [MarshallSyndrome] Re: (unknown) To: MarshallSyndrome@ yahoogroups. com Date: Tuesday, November 4, 2008, 7:04 PM It sounds like we have very similar teams...ours is called the cranio-facial team so they don't just concentrate on clefts...but I think they make up the majority.  Dean is just now speaking clearly...although he didn't try to talk until he was well into his 2's.  He was late on walking, talking, everything.  We are praying for James and that he will get his surgery done soon...the sooner the better.  The older they are the worse the recovery is, I think.   Mandy --- On Tue, 11/4/08, Deborah Hatfield <debhat70@yahoo. com> wrote: From: Deborah Hatfield <debhat70@yahoo. com> Subject: Re: [MarshallSyndrome] Re: (unknown) To: MarshallSyndrome@ yahoogroups. com Date: Tuesday, November 4, 2008, 4:32 PM Hi Everyone: Mandy, I appreciate all of the information you gave me, and it sure sounds like you have a great medical team.  We live in Northern Wisconsin so treating in Gainesville is probably not an option.  We are, however, lucky to have a couple of great children's hospitals in Wisconsin and we have doctors at both St. Joseph's in Marshfield and Children's in Milwaukee (always have to have a 2nd opinion).  Our primary providers are in Marshfield were they have a cleft lip and palate "clinic" every month or so.  If you are schedueld for the clinic in any given month, you spend most of the day there and see everyone (ENT, speech, hearing, dental, orthodontic, genetic, and surgery) and then all of the providers get together in the afternoon to discuss each case and then they send you a synopsis of their recommendations.  We have been to one and are scheduled for another in December, at which time I think they will set up James' palate surgery and also make sure he doesn't need ear tubes (or does, i guess). Everything else is going well.  James is such a wonderful boy and doing beautifully.  I do worry about his speech, however, as he still makes no consonent sounds, but only vowel sounds.  When did Dean start to talk?  James continues in speech therapy, and I'm sure everything will be fine, but I do worry. Thanks again for your willingness to share information.  It helps to have someone out there that can give practical advice.  Oh - James pediatric eye Dr. estimated his prescription at -10 to -15.  Do you know what Dean's prescription is?  Deb --- On Tue, 10/28/08, Mandy Gianotti <mndygianotti@ yahoo.com> wrote: From: Mandy Gianotti <mndygianotti@ yahoo.com> Subject: Re: [MarshallSyndrome] Re: (unknown) To: MarshallSyndrome@ yahoogroups. com Date: Tuesday, October 28, 2008, 9:26 PM Hi, sorry its taken me so long to get back to you.  James is so adorable...I hate to say it, but Dean wasn't that handsome as an infant.  He has really had to grow into his looks, but he is now a total hottie (LOL!).  You were asking about the cataracts, I honestly don't know if the cataracts bother Dean or not.  He never says anything one way or the other about his vision getting better or worse.  Dean knows that he needs his glasses and wears them religiously.  Just this morning he couldn't find his glasses and was standing at the foot of my bed looking completely lost.  He stood there bewildered for about 2 minutes and then says very calmly, "Mom, I can't find my glasses."  We don't talk about his disabilities to him because I don't ever want him to use his disabilities as a crutch.  He knows that he is different than all of his friends at school, but he is still just a normal rambunctious little boy.  Dean rides a bike (we just took off the training wheels a few weeks ago!), he rides his scooter like a little stunt double and is doing his best to master a skateboard (against my better judgement).  He likes to climb on top of the dog house (which is about 4 feet tall and built with a fairly steep roof) and jump off or play tarzan with a chain left over from a swing that used to be there.  I used to try to keep him "in a bubble" so to speak and was afraid to let him do anything, but I've given that notion up over the years.  I do pray every night that he doesn't break any bones or get too crazy in his mission to scare me senseless with his antics.  Our latest situation was that at school he pinned another little boy down and was punching him because the other boy said he wanted to marry Dean's girlfriend.. .I just shake my head and laugh now because I know that God made up for his problems with too much charm.  Everyone loves Dean and Dean gets away with EVERYTHING!  Dean sees a pediatric opthamologist (Dr. Redmond in Pensacola) and is seen every 6 months.  Dean is severly nearsighted (myopia).  When the doc found the cataracts he moved him up to being seen every 3 months.  We did this 3 times and because the cataracts haven't grown at all, we are back to every six months.  Where do you live?  I go to Gainseville for Deans craniofacial team to see him every 6 months.  I don't know if that would be a possibility for you, there is a Ronald McDonald house there where you can stay overnight or longer if necessary for appointments.  The drive for me is 5 hours and in fact we are going on thursday.  We see about 15 doctors in 4 hours.  This way Dean can be closely monitored by every type of doctor he will need to see throughout his lifetime.  We see plastic surgery, a pediatrician, maxiofacial surgeons, pediatric dentists, a genetics team, a psychologist, a social worker, a speech language pathologist (the best in the country in my opinion (she trains all the sp. therapists that are graduates of Univ. of Florida) and various other specialists.  Dean got to go to speech camp last summer for 5 days in Panama City Beach...he had a ball and there was a therapist and counselor and teen counselor for each camper! It was amazing and Dean learned SO much...and it was free.  I was more than willing to pay for him to go but there was a private donor who paid for the entire event...it was absolutely amazing.  If your insurance will cover it and you can make the trip, I strongly suggest that you go to Gainseville for James treatment.  Their craniofacial team is the best in the country.  The plastic surgeon that fixed Dean's palate this last time goes to 3rd world countries and repairs clefts when he isn't training med school graduates to specialize in clefts.  Dr. Seagall only does plastic surgery on people who truly need plastic surgery (clefts, burn patients and things like that) which is EXACTLY the type of doctor we want working on our babies.  Dean's first plastic surgeon had a horrible disposition towards fixing clefts and things like that because there isn't much money in helping people who truly need the help.  I guess the money for a plastic surgeon lies in boob and nose jobs. I'm sorry for complaining, it just really gets me upset when doctors let their greed for money override their supposed compassion and caring for the health of people. I'm glad James b-day party went so well...I remember Dean's first birthday.  We had a big party the week before and then his palate repair was actually on his birthday.  Well, we will talk to you again soon! Mandy --- On Tue, 10/21/08, Deborah Hatfield <debhat70@yahoo. com> wrote: From: Deborah Hatfield <debhat70@yahoo. com> Subject: Re: [MarshallSyndrome] Re: (unknown) To: MarshallSyndrome@ yahoogroups. com Date: Tuesday, October 21, 2008, 1:25 PM Hi: How do the cataracts affect Dean's vision.  And if he can't go to a regular eye doctor, who will he go to when he is an adult?   James sees a pediatric eye doctor and I told him at our first visit all about the possibilities of detaching retinas and cataracts, but he didn't think he need to see James for a year.  I talked him into eight months.  How often does Dean go?  Is he nearsighted? James' birthday party was great.  He had a wonderful time.  I have attached some pictures of the party and one of my daughter, Sabrina, who's three.  The other front top tooth is now coming in (making four on top and three on bottom) and the dentist is the 28th - and the proslodonist Nov. 3rd - and the ENT/hearing test/surgical consult is December 12th.  With his one-year check up last week and eye doctor this week, it looks like we'll keep busy.  Hope everything is wonderful with your family.  If anyone has any advice for my eye doctor appointment this week, it would be welcome.  Hello to all on the list.  It would be great to hear from you all. Deb Hatfield --- On Thu, 10/16/08, Mandy Gianotti <mndygianotti@ yahoo.com> wrote: From: Mandy Gianotti <mndygianotti@ yahoo.com> Subject: Re: [MarshallSyndrome] Re: (unknown) To: MarshallSyndrome@ yahoogroups. com Date: Thursday, October 16, 2008, 9:51 AM CONGRATS!!! on the first year...it truly is the hardest one to get through.  It should get lots easier as time goes on.  You are taking James to a pediatriac opthamologist, right?  Because of the high degree of vision loss our kids are much more prone to retinal detachment and cataracts... in addition to the severe nearsightedness.  Dean won't ever be able to go to a regular eye doctor, I was told.  He does have cataracts already...but the good news for this is that when they get big enough for the operation he will only need to wear glasses for reading.  The bad news is that the cataracts can take up to 10 years to mature enough for surgery.  Well, Happy Birthday baby James!!!! Mandy --- On Thu, 10/9/08, Deborah Hatfield <debhat70@yahoo. com> wrote: From: Deborah Hatfield <debhat70@yahoo. com> Subject: Re: [MarshallSyndrome] Re: (unknown) To: MarshallSyndrome@ yahoogroups. com Date: Thursday, October 9, 2008, 10:32 AM Thanks for the pictures - your children are beautiful.  James has a eye doctor appointment on October 23rd, so we will see what the Dr. says, and try to get some heavy-duty glasses.  We have some vision insurance, but I'm sure it doesn't cover everything.    Oh- the new front tooth isn't his first, it's his sixth, but I was worried because he had two on top but they were very far apart, and our dentist said that maybe the second top teeth were missing causing the middle teeth to come in far apart.  So I feel better, but my older child's teeth all came in pairs in the "typical" order so I worried when James' didn't.  James has three teeth on the bottom, and has had for some time, so we are just waiting for that fourth one to show.   Anyway, we are preparing for his first birthday party this weekend.  It's amazing how far he has come in the last year and I can remember wondering what his 1st birthday would bring.  Like you said earlier, I wish I would have known then what I know now, it would have saved a lot of worry.    Thanks for your insights and advice.  I really do appreciate it - and would wecome advice or information from anyone else out there.    Deb --- On Wed, 10/8/08, Mandy Gianotti <mndygianotti@ yahoo.com> wrote: From: Mandy Gianotti <mndygianotti@ yahoo.com> Subject: Re: [MarshallSyndrome] Re: (unknown) To: MarshallSyndrome@ yahoogroups. com Date: Wednesday, October 8, 2008, 2:55 PM The second repair was for speech issues...the varangyl (sp?) flap was insufficient.  Basically Dean outgrew his palate.  Unfortunately we only had 1 plastic surgeon in our area who did surgeries on pierre-robin babies.  We didn't know that Dean had sticklers at the time.  When we consulted with the genetics team out of Gainesville, we all thought that he fit the bill for Marshalls perfectly... in fact he and Mackenzie (Tony's daughter) look as though they could be twins.  However, in may when Dean had the other operation, the genetics team slipped in the testing so that insurance would pay for the test.  I believe that the test costs about 4 or 5 thousand dollars.  My husband makes pretty decent money, but with 3 kids and me being a daycare provider (so I could stay close to Dean at all times) coming up with that much money for a test wasn't going to happen.  Especially having to buy hearing aides completely out of pocket and glasses costing so much due to the high prescription strength.  We normally pay about $300 for a pair of glasses for Dean.  Today I just had to order another pair because both his regular pair and his back up pair keep breaking at the temples.  This pair should only cost about $200.  I finally started buying discontinued frames at a pretty deep discount...somethin g to keep in mind as James grows older and gets more active. Congratulations on his first tooth!! I remember those days...awww. ... You can take him to a dentist (if you haven't already) and have x-rays done.  We just did on Dean and two of his lower teeth buds aren't looking like they are there.  His dentist was a bit concerned until I reminded her that they would probably have had to have been pulled eventually anyways for ortho purposes.  My dentist is the sweetest lady...I consider her more of a friend than our family dentist. As Dean has gotten older, we don't have to go to as many doctors appts. and we can actually go to a regular dentist and pediatrician.  One thing on Dean that does seem to be starting early is the arthritis.  I have noticed his knees and ankles swelling and getting hot on occasion.  Dean is a VERY active little boy and has absolutely no idea that there is anything different about him than his friends.  He does complain that he is a lot shorter than his buddies at school, but he had to repeat kindergarten this year so now he is the same size.  Dean is also very very charming and has more personality than anyone I know...my oldest always says that he is famous. LOL.  I'm sure that James will probably be very popular as my Dean is.  I am putting some pictures of my kids up for you and everyone else to see. Mandy  --- On Wed, 10/8/08, Deborah Hatfield <debhat70@yahoo. com> wrote: From: Deborah Hatfield <debhat70@yahoo. com> Subject: Re: [MarshallSyndrome] Re: (unknown) To: MarshallSyndrome@ yahoogroups. com Date: Wednesday, October 8, 2008, 11:07 AM Why did they have to repair the palate?  Was it repaired incorrectly the first time?  Is there anything I should be looking for as far a problems.  And some good news - one of James top froont teeth is coming in - we were concerned that he was missing two of those top teeth.  Thanks for your advise and information - it is greatly appreciated.   Deb --- On Tue, 10/7/08, Mandy Gianotti <mndygianotti@ yahoo.com> wrote: From: Mandy Gianotti <mndygianotti@ yahoo.com> Subject: Re: [MarshallSyndrome] Re: (unknown) To: MarshallSyndrome@ yahoogroups. com Date: Tuesday, October 7, 2008, 9:53 PM Dean's palate was repaired on his first birthday...unfortun ately we had to go to gainesville and have it taken apart and redone this past may.  I wish I had known then what I know now.  Anyways, Dean is now 6 his speech is not perfect but most people can carry on a conversation with him.  He has speech therapy, language therapy and occupational therapy...all of this is now done through the school district.  As for the glasses, I would go ahead and order the frames and then take them to the optometrists office and they will order and put in the lenses there.  They can also pull out their book and look through the baby frames section...fisher price makes some pretty decent frames that will wrap around his ears to minimize the slipping down his face.  Mandy --- On Wed, 10/1/08, Deborah Hatfield <debhat70@yahoo. com> wrote: From: Deborah Hatfield <debhat70@yahoo. com> Subject: Re: [MarshallSyndrome] Re: (unknown) To: MarshallSyndrome@ yahoogroups. com Date: Wednesday, October 1, 2008, 12:07 PM Hi Mandy:   Thanks for the info.  James also has Pierre Robin and Marshalls.  When did they fix Dean's palate?  And how is his speech now?  Have you had any other problems that I should be on the lookout for?  I wish there was more information out there.  The pediatric eye doctor said that James will be near-sighted, but that they generally wouldn't set him up with glasses until he waws about a year (his appointment is next month), so I'm thinking I should get ready.  Should I order the frames and have them ready so that the lens can be order to fit, or vice versa?  Thanks for your advice.   Deb --- On Tue, 9/30/08, mndygianotti <mndygianotti@ yahoo.com> wrote: From: mndygianotti <mndygianotti@ yahoo.com> Subject: [MarshallSyndrome] Re: (unknown) To: MarshallSyndrome@ yahoogroups. com Date: Tuesday, September 30, 2008, 2:47 PM Hi Deborah, My name is Mandy and my son Dean has been wearing glasses and hearing aides since he was approximately 4 months old. Dean also did the birth to 3 program and then went to early intervention head start. I believe it was Tony who recommended that we get Dean the solo bambini's. They came from San Fransisco and we had the lenses put in here in florida. They aren't all that attractive, but you can literally run them over with a car and they will not break. These can be found online. When you are purchasing glasses always tell them you need the temple cables. These are the arms that wrap around the ears and will help keep the glasses in place. With Dean, the nosepads would smack into his eyes everytime the glasses moved around on his face. As Dean has gotten older he can now wear "regular" glasses with nose pads in them, I tweak them myself (I know, I know, BIG No-No). I also learned that when I buy him new glasses to ALWAYS buy 2 pairs of frames!!! Frames are discontinued so quickly these days and when the arms get broken they never have frames that we can switch the lenses into. Everytime Dean got frustrated he would rip the glasses off and throw them across the room. As far as getting him to wear the glasses we just kept putting them back on...it took probably like 6 months before he would forget that they were on his face. Now days I have to fight him to take them off to go to bed at night. I have finally given up and just sneak in when he is asleep and put them up then. The hearing aides took longer to get used to and I only let him wear them to places like church and grandmas. The school district bought him a set to wear while at school. I pay $1000 out of pocket for these (each one) and can't afford to have them get wet or lost. I hope this helps you a bit! And I would love to see this group get a bit more active. Mandy mommy to Mackenzie (age 9), Lil' Dean (age 6) Pierre-Robin and marshall syndrome, and Shelby Lyn (age 2) --- In MarshallSyndrome@ yahoogroups. com, Deborah Hatfield <debhat70@.. .> wrote: > > Dear Michel & Aaron: >   > I am sure that I will need advice getting James to wear his glasses.  I know he will need them as he often brings things very close to his face to look at them.  He did pass his newborn screening, but I believe he is hard of hearing.  >   > As far as his development, he seem to be ontrack for everything except speech.  He is now cruising around the furniture, but not walking, and is actully a little ahead of where our daughter was at this age.  He was "army crawling" at ten months, but didn't crawl "regularly until 11 months.   He is working with a Birth to 3 program and they have a speech therapist come out 2x a month to see him.  He is only making vowel sounds, even though he has an obturator.  His therapist says that he is so focused on his motor skills that he isn't really focused on his speech, but it will come. >   > James is currently in continuous motion and we cannot get him to sit still, except very briefly.  He is eating very well.  Even when he started wearing the obturator, it didn't interfere with his eating.  He has five teeth, two on top and three on the bottom.  The two on top are not the middle two(unless they came in very far apart), and I am worried that he is missing some teeth, as children with James' condition are sometimes missing the "second" teeth on top which make the middle teeth come in very far apart.  He sees his pediatric dentist on October 28th and she will take a small x-ray to see if all the tooth buds are there. >   > How did you get Lalo to wear glasses?  And how do they fit?  James has a very flat nasal bridge and prominent eyes, and I just don't see how glasses will work. >   > Ddeb. >   >   >   > > > --- On Wed, 9/24/08, aranda.michel <aranda.michel@ ...> wrote: > > From: aranda.michel <aranda.michel@ ...> > Subject: [MarshallSyndrome] Re: (unknown) > To: MarshallSyndrome@ yahoogroups. com > Date: Wednesday, September 24, 2008, 1:09 AM > > > > > > > Hey Deb, > We live in Southern California, in San Pedro, south of L.A. it > is cool how close their birthdays are! > Although he does not have a cleft palate, it does seem a little > high, and Lalo's gums seemed thicker than normal. he didn't get his > first tooth until about ten months, and now has five. > Lalo's features caught the attention of the doctors immediately > at birth. Flatter nasal bridge, wider set eyes, short mandible, and > lower placed ears. So Chromosome and genetic tests were done right > away. Both parents were also tested, but neither of us carry the > gene! Lalo did not pass his initial newborn hearing screening, but > returned a month later and passed. we continue to have his hearing > tested regularly. It took a few tries, but an optomologist finally > got a prescription, about a -20 vision, very nearsighted, but he > really seems used to wearing his glasses. We cannot thank the > founder of this group, (MacKenzie's Dad!) for help with the > frustrating task of getting his glasses to sit right, and stay on! > Looking back its been a crazy year, lots of work but lots of fun and > love too. > Do you mind us askin about James development as far as speech, > crawling, etc.? > Michel & Aaron >