[tri-med] not a good month

Sorry I haven't been saying much lately.  I know I missed some birthdays
this month, so Happy Birthday to everyone who had a June bday!  We have
just been having a very crappy month.  Ever since the end of the school
year Morgan has had a cold.  Finally, I decided it must be something else
because it just wasn't going away and he had started sleeping all the time.
I took him to the ped. who thought it was probably seasonal allergies.  He
gave us some samples of singulair.  I felt pretty happy about that and
decided to go ahead and send Morgan to his monthly boys' night (a local
respite center has a boy's night once a month, they stay over night and get
to go swimming and watch videos and do crafts, etc. with just the boys.) 
They called me early Sat. morning to come and get him because he had a
fever.  He ran a fever all weekend so we went back to the drs. and he
decided it was a sinus infection.  So, now Morgan is on an antibiotic and
it is finally helping.  He is feeling more himself, although still grumpy
cutting 2 of his 6 yr. molars.  

I had Morgan signed up to go to 3 different weeks of day camp at the local
Easter Seals camp.  He went for 4 days (June 14-17) and then I just
couldn't send him anymore.  It was awful!!!!  Everyday when I went to pick
him up he had food from lunch still on his face, dried on and yucky.  Most
of the time he still had on the clothes I sent him in (even though I always
sent a spare outfit), all messed up with food from lunch apparently because
they couldn't use a bib or even a napkin under his chin.  One day when I
went to pick him up he was laying on a mat in the middle of the floor of
their gym, all by himself just laying there while 3 counselors were sitting
on the bleachers talking among themselves.  Then the last day one of the
counselors told me that they had been short handed that day and there had
been no one to feed Morgan his lunch.  I just stared at her.  She proceeded
to tell me that because they hadn't been able to go swimming that day
someone fed him at swim time (assuming that if they had gone swimming
Morgan wouldn't have had lunch.)  Well, when I got home I called Morgan's
case manager for his waiver (they are the ones who pay for this camp) and I
told her all about it.  She told me she was going to call Camp Sunnyside
and would let me know what happened.  The next morning I got a call from a
director at the camp saying she was sorry for what had happened, she didn't
realize this was going on out there, it was unacceptable and that she,
herself, would be out at the camp all week the following week retraining
the counselors and just making sure things were going right.  She wanted to
know if I would reconsider sending MOrgan back to camp, but I said no.  I
just really hope they get things straightened out there because alot of
people depend on this place.  The case manager did say that later she heard
some other parents had complained although she didn't elaborate on what
their complaints were about.  

On the other hand, Morgan got his theratogs this month.  He hasn't had them
on much as he hasn't been feeling well, but I'm thinking it is time to
start using them.  He also got his new AFOs.  They are a new design with a
spring action in them, there is no actual spring it is the design of the
material they are made of.  The p.t. said the guy at the orthotics place
makes them himself, his design.  Again, we haven't had much use of them,
but plan on trying again.  We are also in the process of trying to get
Morgan a new walker.  He has a rifton pacer, but he isn't real thrilled
with it, too much "stuff" (supports) for his liking, particularly the trunk
support.  He just hangs on it at the armpits and his hands turn purple as
he cuts off the circulation.  We are trying to get one of those meywalks,
like Kammie has.  We are demo-ing one now and he tolerates it so much
better, there is just so much less to it and it is so lightweight and
portable.  We were using a lite gait at his hospital therapy, but are
cutting down on the amount of time we work on that.

I just know I'm looking forward to July 1st, hopefully that start of a new,
good month.  LOL



"I'm growing older, but not up.  My metabolic rate is pleasantly stuck.
Let those winds of time blow over my head.  I'd rather die while I'm living
than live while I'm dead"
Jimmy Buffet

--- Holly, wife of Mike, mom of Morgan (6 yrs.) unbalanced translocation
t18q+ and 9p-,  & IS, mommy to Bonnie (border collie, spaniel mix)
    Des Moines, IA
    http://www.geocities.com/hmmmcormick   


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

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