February 2013 was filled with doctor appointments, tests and
mostly good news.
A check up with the gastroenterology (GI) doctor was easy and
quick. She was happy with Connor’s slow
but steady weight gain and said to remain the generic Prevacid to see if it
helps/continues to help with his choking and other issues possibly related to
reflux. She also recommended adding more
fiber to the little guy’s diet to get his bowels moving on a more regular
basis. J
We also had a repeat Barium swallow study that day and it
went very well. No signs of aspiration
on thin liquids! So we’re down to ½ TBsp
of cereal in his 6 oz bottles now – down from 2 TBsp per bottle.
Connor had his 15 month check up with Panda Bear
Pediatrics. He weighed 21 pounds 9 ounces
and was 32 ¾ inches tall. The resident
that is studying with Dr. Dominy was very intrigued by Connor’s diagnosis and
asked lots of questions about Joubert Syndrome.
He apologized saying, “I’ve just never heard of this syndrome
before”. My response was “Join the
club!”
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| Happy baby at lunch. He was eating food with little pasta chunks in it and he has figured out how to spit out the little pastas rather than have to learn how to chew them |
On February 20 we had another follow up with the Feeding
Clinic. These are always hard
appointments for me. There are four
specialists (Speech Pathology, Occupational Therapist, Nutritionist and Nurse
Practitioner) that work together for
one, two hour appointment and while it’s really great to have them all in a
room talking to each other, they each come up with 2-4 recommendations for
changes or additions to Connor’s routine.
About two people into the recommendations portion of the appointment I
usually get pretty overwhelmed. This
time was no different. The biggest
change is that they want us to move to pureed table food rather than the jarred
baby food. They say it’s more texture
and calories. My head spins a little
with the thought of having to make all of his food as it seems like one more
thing to do, but since he’s older now we can literally just put whatever we’re
having into the blender and give him that (pureed tacos – yum!).
And then there are recommendations like the one
trying to address Connor’s oral sensory issues – “Touch Connor’s toothbrush to
his lips ten times a day until he accepts the toothbrush on his mouth”. It’s those recommendations that make me all
the more thankful for Carrie, Connor’s sitter.
Fairly certain toothbrush lip touching will happen primarily when she
has him as I just don’t see it happening as often at our house. And on and on go the recommendations. At the end of the appointment, I looked at
these four ladies and simply said “We’ll do our best.” Pretty much my mantra.
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| Sad baby at his sleep study |
The following week was Connor’s sleep study. It was horrible. He cried for three hours
that night. The poor little guy had wires and goop all over him. They had to wrap his head every which way to
keep everything in place. He had tubes
up his nose to measure breaths which he HATED and figured out how to pull out
which meant the tech had to put his arm in a straight brace for the night so he
couldn’t reach his nose. He finally fell
asleep about 11:30 p.m. and slept until they woke him at 6:00 a.m. with only a
couple little wake ups in between. We
were both ready to get out of there!
We saw the Pulmonologist today and she said the results of
sleep study came back normal. Yea! No sleep apnea! That was music to my ears as I just couldn’t
imagine transitioning him to sleeping with a CPAP or any other kind of device. She also said that Connor seems to be doing
well enough lung wise that he doesn’t have to see her again for six months.
I’m thankful for all the good news we received in the last
month and challenged by all the questions and tasks still before us. One day, one week, one month at a time. Thanks for your continued prayers and good wishes!
