New Year: 2014

[Andrew James Riemer]

First of all, my most sincere apologies for letting this group fall by the wayside.  We've had lots of changes in our family in the past couple of years, including a period of unemployment, having two boys diagnosed with Asperger's Syndrome, learning a daughter has 16P 11.2 Deletion Syndrome, and all the other craziness that comes with a large family.  I very much want to reinvigorate this community, with the desire that we finally get together this spring, or over the summer.

I've reached out to the Sotos Syndrome Support Associate, to see if they are interested in sponsoring local chapters. If so, I hope to align ourselves with them. If not, I plan to [finally] incorporate this group as a non-profit--not to take away any resources from them, but to help coordinate local resources for those of us who call Minnesota home.

I hope this message finds you well.

Gideon is continuing to amaze us with his progress. He still faces developmental challenges, but is in a mainstream classroom with a little help and an Individualized Education Plan (IEP).  He will be seven in April. He is not yet reading--that is one of his greatest challenge areas, but his cognitive reasoning skills seem sharp.  The scoliosis in his spine has improved to the point where he only wears his back brace for four hours a day now.  The ankle braces are gone. He has developed a love for football, especially the Vikings (and he didn't get that set of interests from me).  Thankfully, we're past the days where he seemed to get sick all the time, though we still need to watch him constantly when he has a fever (he'll spike quickly when meds wear off and then is at risk of febrile seizures).

We still have lots of problems with his bowel control (or, shall I say, lack of it).  Even on two laxatives (one pill, plus Miralax), he does not void fully or regularly.  He's been going through many tests (enemas and MRIs) to try to figure out what is going on.  It appears that his abdominal organs are reversed (what's typically on the left is on the right), but that doesn't explain the chronic constipation. They are testing for some specific conditions that may be present. Marie may know more, but as best I know we are still waiting for final results.  As a result, he needs to wear pads in his underwear during the day, and a pullup at night.  When things do move, they REALLY move...

Of course, he is still ahead of the curve on the growth charts. He's taller than his next eldest brother, and is often assumed to be 10 or 11 (remember, he'll be seven in April).

There are some behavioral challenges, of course, but once my wife discovered his love of football, she found that he can be very well reward-motivated with football cards.  Since introducing that reward (earning up to two cards on most days), he's been doing a good job picking up his room, and we have a bit of leverage to get him back on track when behaviors start to decay. Overall, I have hopes that he will grow to be a well-adjusted young man. He might need some support as an adult (only time will tell), but I do have the hope that he will be able to live independently someday.

Severe emotional and mental health challenges with one of his older sisters (the one with 16P 11.2 Deletion Syndrome) have been a major drain on the family, much like Gideon's early years were. We also have three teen boys in the house (one with Asperger's Syndrome, and another with ADHD and some O-C tendencies). We often feel like we are struggling to keep sane.  Thankfully, our eldest daughter returned from college with a friend this past weekend, and basically ordered Marie and me to get a weekend away.  It was wonderful!

To our newest member, I apologize for the long delay in approving your request to join. Life may be crazy here, but it was no excuse for leaving you out there without support.

Respectfully yours,

Andrew James Riemer

a.k.a. HikingStick

[Jenny Moretter]

Thank you so much for reaching out to us again.  It is great to hear about you and your family.  I would absolutely love to get together over the spring or summer to meet everyone and offer any support.

 

Mackenzie will be turning 9 in April and is doing much better.  We just had her conferences last night and her teachers say she has improved significantly over the last year.  She does exceptionally well with spelling and reading but struggles with math.  We are looking into having a tutor that will work with her outside of school to hopefully develop these skills more.

 

She has improved slightly with her social skills. She still has periods in which she becomes so incredibly upset and will exhibit disruptive behavior (hitting, yelling, stomping feet, etc).  She also at random times will just cry for no apparent reason and need constant reassurance.  It is like one minute I love you mom and then the next minute I hate my family.  She shows signs of frustration and often feels remorse for saying and doing mean things.  She also is very one sided, meaning she is a "mommy's girl."  If she gets hurt, upset or frustrated I am the only one that can console her or calm her down which is hard for her dad being he always wants to help out.

 

We still have problems with bowel movements.  Mackenzie gets Miralax everyday plus we have restricted her diet but still she struggles with constipation.  I hate having to give her Enemas, she is so afraid of it and it breaks my heart to see her in so much pain.  We have talked to the doctors and we get the same end result, there is no physical problem, it is all mental.  I for one believe that is not accurate!  I think there is something physically wrong with her especially being other children with the same syndrome are having the same problems.  We have finally been able to not use pull-ups and at times also have to put pads in her underwear.  By chance, do you ever notice a nasty smell?   Mackenzie on occasion will have a foul smell, I think it comes from the food not being digested properly therefore causing it to get backed up.  Her breath will stink often.

 

I would love to hear from more families and hopefully we can offer one another support.   It is not easy being a parent :)

 

I have attached a picture of my daughter Mackenzie! 

 

Jenny Moretter

 

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