Hi everyone....how are things going?

[Misspoker]

 Just wanted to say hello to my fellow group members and to see how things are going with you all.  I also wanted to give an update on Sierra.

We went for a hearing test and to see an ENT who specializes in 22Q yesterday, follwed by a cardiac follow up.  The cardiologist said Sierra's heart was doing great and he would see her back in 3 years...that was great news!

The ENT visit wasn't so good.  Sierra has always failed the hearing screenings that the school does and has recommended an audiography check up.  A couple of years ago when she went for a more thorough exam, it was determined she had a 20% hearing loss in her right ear.  Now they are telling me she has 20%-30% loss in both ears,  She hears low pitch sounds better in her left ear and high pitch sounds better in her right ear.  These two differences are kind of battling and making things worse for her. 

One of the more interesting things I have learned about children with this syndrome (mine in particular) is that their brain goes in multiple directions when they are in loud, confusing enviornments.  Finding out about this hearing issue has helped me understand a little more about the problems she deals with.  For example, this is the first year she has had to change classes in school, which means having to figure out where to go next, get books she needs for her next class from her locker, all of the children talking in the hallways and the comotion that goes on in the process.  All of this activity at once sends her brain into overload and mass confusion takes place.  Then with the addiition of a hearing loss and the battle going on in her ears from the different pitched noises, she goes haywire, thus getting frustrated, forgetting what she is doing and getting to class late,  Once she is in the next class, it takes her a little time to get refocused on what she is supposed to be doing.  All of this combined would be enough to create problems for anyone but extremely multiplied for Sierra.

I feel so bad for her sometimes.  I wish I had a way to make it better but all I can do is try to explain it to others so that they can understand a little better and make the necessary adjustments for her to be able to achieve her tasks.

I hope all is well with you all and your families.  I'd love to hear from you when you have time.

Take care!

 

[Mom_2_Boyz]

Drew just had craniofacial clinic Monday.  It looks like he will be having a scphincter pharyngeoplasty some time in the next couple months (still waiting for a call from the plastic surgeon's nurse to schedule).  Basically, they make the space in the back of the throat smaller so that his palate can reach it more easily and close off the space when he talks.  It will help with hypernasal speech.  Everything else was pretty much on target.  It is mostly about speech these days.  He is still just so hard to understand!  He really wants to have his nose worked on (not sure why... he just asks about it at regualr intervals) but I am not sure when that will all happen.

School is over for Drew on May 29th.  It will be interesting to see how our summer goes.  He seems really obsessed with video games right now.  It is hard to distract him from them.  Hopefully, I can find things that interest him enough to draw him away. 

We put an offer in on a house.  If we move, Drew will be going to a different school.  I dread having to work him into a new school and a new system.  It will be in the same school district, so I hope that helps ease the transition if we end up moving.  My husband worries a lot about Drew being able to make new friends.  He seems to have this uncanny ability to make friends where ever he goes.  But now that he is 8 yo and his speech is so difficult to understand, it is a worry.

I can totally relate to what you were saying about Sierra.  Drew's teachers have had similar issues with him when the class is doing group projects and there is more noise and activity.  It really is hard for them and not much we can do to help. 

[Misspoker]

 Sierra has had 2 sphinctoplasty surgeries (age 3 and 5) and will have to have another one after she goes through puberty.  The doctors say it is best to wait until then because her adnoids will shrink after that and will be more likely to benefit her speech.  Since she had the first two earlier on, she has been in speech therapy since she was three years old so her speech has gradually gotten better over time.  Drew is probably going to have a more difficult time with having to retrain himself how to say certan words but I am sure he will do much better than he is now.  I wish you the best of luck with that.

I sent Sierra to school yesterday with a good start to the day....she got up fine, got her shower and eat her breakfast with no problems so I was sure it was going to be a good day....until 8:30 and the phone rang.  It was her homeroom teacher saying she couldn't get Sierra to cooperate at all.  She wouldn't even go to her other class or acknowledge the teachers speaking to her.  All she wanted to do was sit at her desk and play with the rock she had found on the way to school (she walks because we live in a small town and only live 2 houses away from the school).  I ended up having to go pick her up and bring her home.  She hates it when that happens because she has to come home and do school work ALL day long.  I have tried to explain to her that she gets herself into these situation by thinking she is in charge and can do whatever she wants.  I cut her a lot of slack when it comes to some things but she knows I will not tolerate others.  I try to explain to her that I love her and want the best for her so I am going to push her to do her best.  I refuse to give my child the "woe is me" complex.  I grew up with a brother that had rheumatoid arthritis and he was treated that way a lot and he is now 39 years old and still thinks like that.  Not happening with mine.  Call it what you will but the way I see it, it's tough love and I am the only one to teach her accordingly.  She knows she is different but she also know what I expect from her.

Anyway, good luck with the surgery and keep us posted!

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[BrendaChas3]

Hi Sandi, 

Good to hear from you.  Well first, let me say...Bravo to you!  How did you find and ENT who specilizes in 22Q?  It seems I can't find any Doctor who specilizes in it.  Next, great news about her heart...one less thing to worry about!.  Sorry to hear about Sierra's ears.  Hopefully she won't loose any more hearing. 

I have a question for you.  How did you find out that the brain gose to multiple directions in loud/confusing environments?   MRI....?

As far as school.  To me, it sounds like you are the best advocate for her.  I think your right, all we can do is explain it to teachers and hopefully they can make any necessary adjustments. 

Here are a couple of thoughts,  Have you considered sitting down with a series of people from Sierra's school, i.e, Principal, Guidance Counsil, Nurse, special-ed teachers,  even the superintendent of the school system in your town?   Have a brain storming session.  Maybe as a whole team someone can come up with a idea to help Sierra's school years become more enjoyable and less stressful.  You never know, in a setting like that people become empowered and really want to help out...just a thought!

My little guy Billy is doing good.  He is still making great stides to walking indpendently. YIPEE.. As I keep saying my primary concern is expressive language.  He is babbling quite a bit which is good I just wish I knew how to make those babels (sp?) into words! :)

Keep us posted and take good care!  Brenda