Gideon update
HikingStick
update on Gideon.
He's now 3.5 years old. He still has no ability to control his bowels
and would stay constipated indefinately were it not for Miralax. He's
taller than our Kindergartener and about even with our first-grader,
and those two boys are basically in the same size of clothes (though
our first-grader can fit in slims).
Gideon broke his arm over the summer, climbing over a barrier we had
set up to keep his younger sister on the deck. Coming home from work
and splinting that arm was one of the must gut-wrenching things I've
ever done. [I'm nearly nauseous from thinking about it now!]
He's still weaing ankle braces because of his low muscle tone, but he
gets around quite well and enjoys running. His running position is
different and has become quite endearinng to us--he bends his head
down and leans far forward. It looks really awkward, but he manages
to stay on his feet. Having older brothers who run cross country and
track likely influenced that behavior.
We've finally had a bit of a language explosion. He's gone from
having only a handful of words with distinct meanings, to his being
able to put together simple sentences and four- or five-word chains.
He's also showing signs that his cognative development has not been
severely limited. Recently, he picked up a piece of candy corn,
showed it to my wife, and said "Volcano. Boom." His primary
specialist was surprised to learn of him showing that ability to
imagine. Having a bunch of imaginative brothers and sisters in the
house has probably helped.
I'm the sole income earner for the family, and our primary medical
coverage comes through my employer. We had been in a plan with a high
deductibe ($2,000 per person with a family maximum of $4,000) before
covering everything at 100%, and had just maxed out our deductible for
this year when they announced a plan change. Technically, the new
plan carries smaller deductibles ($1,500 per person and a family
maximum of $3,000), but it only covers 80% after the decutile is met.
There's supposedly an overall cap of $6,000, after which they pay all,
but we haven't reached that amount out of pocket yet. The medical
expenses were threatening to bury us, so we got him signed up for
supplemental coverage through the county. Our state reportedly has
some other special funds available for special needs kids, but we've
not investigated them fully.
Though he can walk and run, he doesn't have the stamina of other kids
his size. As such, we still rely on strollers and carts when we need
to be out and about, but that has raised another problem--he's really
getting too big for regular strollers and shopping carts (getting him
in and out while wearing his ankle braces and shoes can be difficult),
and his weight make it harder to hold him for any length of time. We
know we should be looking for something else--special needs strollers,
or maybe just a large wagon--but that's just another expense we cannot
currently afford.
Then there's taking him out in general. We've found that his
attention span is very limited. He often tires of an event or an
activity long before anyone else. Recently, after driving 30 minutes
to get to a historic site where a rendezvous was being held, Gideon
already wanted to go home after being there about 30 minutes. We had
hoped to spend at least a half-day there. Shopping is the same way.
He likes going with us, and will often ask to go, but as soon as we
are there he starts asking to go home. Of course, that just makes
things even more stressful because we have a child who looks like he
should be about six in a cart and acting like he's only two. I'm sure
you're all aware how self-conscious that can make one feel.
Overall, we're glad to see him making progress, but also saddened anew
every time his younger sister makes milestones on time (or early) that
Gideon only recently attained. Whereas he just started parroting
words and phrases this year, she's already talking in simple
sentences, making requests, and repeating everything she hears and
she's not yet two.
I used to be a person of great faith, but have just felt myself worn
away day after day, year after year. My fuse is shorter and shorter
with the rest of the family. I feel numb. I just hope we make it
through, day after day after day.
Jenny Moretter
Mackenzie also gets Miralax and Benefiber tablets, both work ok but not the greatest. I do not know how such a little person can not go potty for 5-7 days at times. It is so incredibly heart wrenching when my husband and I have to hold her down to give her an Enima to help with relief. I do not think I have been kicked so many times before. I get so frustrated that I yell at her and sometimes find myself screaming. When all is done I look at her and just cry. I feel guilty for being angry or ashamed that I could not control my frustration when it is not her fault at all. It is a constant struggle every day to be patient with her and understanding. My husband and I work opposite shifts so I often have all 3 kids by myself after work. I come home, make dinner and work on homework with my 3rd grader, spend time with my 2 yr old, and then have my time with Mackenzie. I feel all my kids need more time with me and I wonder would it have helped to stay home with Mackenzie, would she have learned more? I just can not afford it, medical bills alone are crazy. We spend $250 every time we have to bring her to the ER for a problem or specialty doctors that are out of network.
I think we all do what we can each day and try to hold our selves together. We are human and will make mistakes being parents. We are married and will argue with our spouses not because we want to but because we need an outlet of some sort. I love Mackenzie more than anything and would do what ever I could to make her life easier and see her smile everyday. She is truly a remarkable little girl just like your Gideon. They are special in their own way and we are lucky as parents to get the chance to see them grow and know somewhere in it all we helped.
I would love for all of us to meet soon, there is nothing better than knowing someone you can relate to!
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