[tri-med] Re: tri-med Digest V2 #101

In a message dated 03/13/2003 11:18:45 PM Pacific Standard Time, 
ecartis@xxxxxxxxxxxxx writes:


> Jennifer! How you guys doing??????
> 
> Michelle mom to Alex (15,partial trisomy 14 mosaic) and Molly (12)
> MichiganUSA
> 

Hi Michelle (& Penny & Loren & everyone else):  We are all doing pretty good. 
 Thanks for asking.  I have been so busy with the girls and work and school.  
I usually read all the posts and then run out of time to respond.  Anyway,  
we have had our share of colds, flu, strep throat this winter.  But everyone 
has handle it all well.  

Emily recently had her IEP in Feb.  It was her 3 year eval.  Her psych stuff 
came out the same as three years ago.  She is still TMI.  Actually they have 
changed the name to Moderately Cognitively Impaired.  Anyway, it just means 
that she is in the right program and will remain.  During all the testing, 
the speech therapists found that Emily's speech scores exceeded her cognitive 
scores so that disqualified her for speech.  I wasn't happy at first, but I'm 
ok now.  I understand that her speech and language is her area of strength 
and her program is embedded with speech stuff so alls that meant was that she 
was not on someones caseload for individual therapy.  I am OK with that.   
Also during this time a vision consultant was in her classroom servicing 
another child and questioned Emily's vision.  We sent a form to her eye doc 
and sure enough she is visionally impaired.  It really upsets me that we have 
been seeing eye docs for 6 years and it took a vision consultant in the 
schools to say HEY, she looks like she needs some vision support.  Anyway, 
she is not labeled VI so she is getting services in the schools.  Because 
they added VI along with her MoCI and medical problems... she is now SXI.  
The reason we went with this is because she will now get a supplemental 
income monthly.  This will help so much on the extras.  last summer alone we 
had her in SI therapy and for 8 sessions it cost $800.  Our insurance did not 
cover any of it.  

We have also increased Emily's Ritalin to three times a day and she is 
tolerating it great.  It has made all the difference in the world for her and 
us as a family.  She is functioning better in school and it has allowed us to 
venture out into public a little bit more. (Still not eating at restuarants. 
HA!) 

We also took her in for an eval to get a adaptive stroller (Convaid Criuser) 
and she qualified.  It has been 8 weeks and we are still waiting for 
insurance approval.  The therapists seemed to think it won't be a problem.  I 
think that will really help us as she has outgrown the regular strollers and 
as figured out how to get out.  This will have the 5 point harness that will 
keep her in.

Our next dilemma is a bed.  We really have overexceeded our time limit on 
dealing with this.  She needs a adult size crib.  We have looked at Pedicraft 
and Vail beds.  I am having a hard time with this.  They are not attractive 
and seem so sterile with all the vinyl.  Just not my idea of a bed, but we 
have not found any alternatives.  And safety is the important factor.  I 
guess we will go down this road next.  Hopefully we don't run into any road 
blocks with insurance.  What do others think of there special beds???  Any 
insurance trouble???  Any suggestions???

How about Loren and Keren living so close.!!  Maybe we'll have to arrange a 
little lower Michigan trisomy get-together.  Myself, Michelle, Loren and Gay 
(who I met at last years SOFT conference).  She lives in Royal Oak with 
Rachel who is 9?? with T13 Mosiac.

Well sorry it took so long to respond and update. My goal is to do better now 
that summer is coming and I will be off work for a few months.

OH!  About the SOFT Conference this year... we are not going unfortunately.  
I really wanted to, especially since it was in SLC and that is where Dr. 
Carey is.  But our funding source from last year only provides for every 
other year.  Besides it is much farther.  Last year it was a four hour drive 
so it went well with Emily.  This year it would be a four hour flight... and 
with her sleeping problem and the time change it would be very difficult.  So 
we have decided not to go.  We thought maybe when it gets in our time zone 
again.  :)   I wish sleeping wasn't such an issue for her... it really 
effects a lot of things.

Anyway, hope this finds everyone doing well.  And still awake if you have 
gotten this far.
    
Jennifer - Mom to Emily (6) T13 Mosiac and Hannah (3)  Michigan, USA


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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