While a part of me is bracing for the insanity that the fall
will bring, the other part of me is glad August is done. Our life is pretty scheduled and
patterned. As the primary maker of the
schedule, I know what is going to happen when and usually have things planned
out eight weeks in advance. I work hard
to make sure things are in place and that I have it all figured out so we don’t
have too many surprises along the way. August was a topsy turvy month filled
with randomness and last minute scheduling for all four of us. Kind of hard for this Type A gal! So I’m thankful for September and the rigidness
it brings. J
Updates…
Dipping toes in the ocean |
Connor’s ophthalmologist did a Teller Acuity Test for his
vision. He scored well when using both
eyes but not so well when either was covered.
The doctor didn’t seem overly worried, but wants to see him in a few
months in the hopes that he’s progressed.
We’re down to every other day for the eye patch now.
There is some concern that Connor isn’t gaining enough
weight, so they are checking all sorts of things. We had a visit with the EI Nutritionist to make
sure Connor was getting enough calories.
She was a very nice lady, but kind of clueless when it came to
babies. I had to tell her twice he was
too young for milk/dairy products. We
see the GI doctor, Speech Pathologist and Nutritionist at CHOP coming up in the
next two weeks so that should give us more answers.
Smiley 10 month old |
August was frustrating related to OT and PT progress. PT wise I think he’s doing ok – much better
with head holding and he's giving us the smallest signs that he might be putting
weight on his hands when he’s on his belly.
He seemed to slip backwards with OT stuff last month, especially with reaching
out for things. I think the crazy month
just didn’t provide the consistency he needs therapy wise. With vacation schedules for us and his
therapists and the revolving door of care givers, there were many days when he
was just along for the ride of whatever the day brought. So my hope is that September will get us back
on track therapy wise!
Little man is now sporting a blue cranium helmet. It’s bulkier and heavier than his first one,
but will make the head reshaping go a little faster. Hopefully he’ll be done with it by his first
birthday.
And our final update – Connor has a new sitter. I am so thankful!!! A wonderful and kind woman we know from
church agreed to watch him. It’s just
the perfect ending to a very stressful situation. She is excited and appropriately overwhelmed
to have Connor and I know she will be a great addition to his life. Halleluiah!
I continue to be so thankful for all of you. Those reading these words, praying along with
us, sending us well wishes and advice.
And I continue to be thankful for and amazed by my beautiful children. Tonight Clara and I were doing therapy stuff
with Connor. He was lying on his back
and she was holding his favorite “cause and effect” toy right in front of
him. We took his hand and hit the toy
a few times so it would sing and light up. Then we waited for him to do it, encouraging him with smiles and
high pitched voices. And then she
started singing a little made up song to him…”I believe in you, I believe in
you. You can touch it. Don’t be scared. We want you to be smart. Touch it and then you’ll be smart. I believe in you, I believe in you.”
He didn’t reach out and touch his toy (probably due to my
audible crying by that point), but I was again reminded of how simple and
awesome the love for this little boy can be and that sometimes, I make it (and life) more complicated than it needs to be. Your mama believes in you, too, Connor!
in tears myself right now. oh sweet and beautiful big sister clara --- such a loving song for her brother. i love you dear friend, and i believe in YOU! holding you all in prayers. looking forward to a chat soon! maybe our type A personalities should actually schedule that in:)
ReplyDeleteWe believe in Connor, too...and in his big sister, his mama, and his daddy too.
ReplyDeleteAnd maybe the lyric "I believe in you. You can touch it. Don't be scared." Is not just a loving sister's encouragement during therapy, but also the song of a loving God who is always present and extending grace for us to touch. Even when our hopes/dreams and daily reality continuously redefine each other as we convince ourselves we can control it all somehow.
Making big strides. You have one heck of a strong family and those of us out her following along will support as we can.
ReplyDeleteWhen they start disagreeing about the small things as they grow up remember that even when not sung, Clara still has that feeling of "believing in him" and that is the kind of heart that helps in so many situations.