New Year (2012)

[HikingStick]

I want to begin by apologizing for being so absent from this group
during the past year. With four teens at home and now two special
needs children (one of our daughters was diagnosed with 16p11.2
deletion syndrome in recent months), things have been a bit crazy. In
addition, I lost my job in September (my department was eliminated),
so I spent the final part of the year searching for work.

Our little Sotos boy is doing well. He's had some tremendous advances
with his oral language skills over the past 12 months. We've enrolled
him in preschool, in both sessions so he gets a lot of repetition. He
has speech and occupational therapy weekly, and is doing well and
making progress.

We still have issues with tantrums, his inability to regulate his
bowels, and he still has braces for his ankles (due to low muscle
tone) and his back (for scoliosis). The lymphedema in his left leg is
less pronounced than it once was, so we hope to have his doctors
review the condition of the leg sometime this year.

I do yet hold out hope that we can arrange for a regional get
together. I hope this message finds you well. I'd love to read
updates on you and yours.

Respectfully yours,

Andrew
a.k.a. HikingStick

[Jenny Moretter]

It is good to hear from you. I am sorry to hear of your job loss and I wish you the best of luck in your search. Our daughter Mackenzie is in 1st grade and doing well so far this year. It is rather concerning to see that she is so far behind her other peers but her teachers reassure us that she is making progress daily. We have noticed as she is getting older that her attention span is getting worse. We can spend maybe 2-5 minutes on a task then she immediately gets frustrated and wants to move on. She is making new friends but has a tendency to still want to be a loner and always by herself.

We still are struggling with potty training (age 6). She wears pull-ups which is hard on her being in 1st grade and all of her classmates are in underwear. Unfortunately, she gets picked on sometimes. I am also a little frustrated with her pediatrician. We have been having such a hard time getting her to have bowel movements. We give her Miralax daily and have incorporated more fiber foods in her diet but she still will go days without going. I hate to say it has become a weekly ritual in our home to have to give her enimas which she is so afraid of. We as her parents could not feel any worse that listening to her scream and moan in pain over this. I finally called the doctor and demanded she be seen at Children's Hospital for a speciality doctor that deals with this. Do any of you have any more ideas or suggestions. I am open to anything at this point!

I look forward to hearing from all of you soon!

Respectfully yours,

Andrew
a.k.a. HikingStick

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[Andrew Riemer]

Our son still has difficulty with bowel movements.  Miralax does seem to help him, but often we are not as consistant in giving it to him.  We don't bother with a general pediatrician for Gideon, and he only sees our family doctor when he gets sick.  He sees a variety of specialists a few times a year for his different needs.

 

We've had some luck with him urinating in the toilet, but his bowel movements can be so unpredictable that we can't send him to preschool in underwear.  When he does defecate, it might happen over a series of many hours, a bit at a time.