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| Nolans first trip on a plane and he got to meet an NFL player, Jermon Bushrod, one of the positive aspects of your dad being a sports buff, he can recognize a professional athlete anywhere. |
We had a GREAT trip to New Orleans,
and an even better check up with Dr. Morava. Nolan did great traveling, we were
pretty nervous about how he would handle traveling and being away from home for
so long, but he was perfect, I think we have a little traveler on our hands. He
is also a champ at riding on airplanes. Incidentally, we have perfected the
diaper change technique in the impossibly small and stinky airplane bathroom
(Nolan, who is no stranger to a dirty diaper, he went to the bathroom upon
arrival to the airport, both times, and then again while on the plane, both
times, TYPICAL BOY!)
All together, we had a pretty smooth
trip, and we LOVE Dr. Morava. With so many uncertainties and unknowns about
Nolan’s disorder and what the future holds, it is like we are in a dark closet
trying to find our way and here comes Dr. M with a flashlight. Her experience
and knowledge of CDG is a great resource to have on our team. She spent 2 plus
hours with us in the examination room, first giving us a quick lesson in CDG
and then answering every question on our very long list. By the time we were
through, we had to exit through the back door because we were the last ones in
there.
Overall, Dr M was very impressed
with Nolan. Our metabolic geneticist from Cook’s, Dr B (whom we also love) had actually
emailed back and forth with Dr M about Nolan and his diagnoses when we were in
the hospital back in September. So she already knew all about him, and much to
our surprise she was just as excited to meet Nolan as we were to meet her.
Based on these initial emails, and him having already been in the hospital
twice before he was 6 months old, she really expected him to look much worse.
She wasn’t expecting the active, happy, and chunky boy we all love.
We asked Dr M what are the most
important things that we can do for Nolan.
#1= Avoid infection (for the next
FOUR years)
#2= Physical therapy
Avoiding
Infection
I don’t want to get too scientific,
but basically the majority of his cells are unable to work properly due to the
disorder in the glycosylation pathway. If you remember, the first time we were
in the hospital his white blood cells (that fight infection) were
astronomically high. The reason for this is his body is able to make WBCs,
there is just a problem with the function of them after they are made. They are
missing the receptor site that allows them to attach onto the bacteria or
infection. This leads his body into thinking it needs to make more WBCs; when
in reality no matter how many he makes they will not be able to function
properly.
Therefore, until the cold and flu
season are over, we will be hibernating in our little house. For the sick
months Nolan will no longer be able to attend school functions or church, we
are going to miss seeing our church family on Sunday morning and getting to
cheer on our Longhorns and Lady Longhorns. But, we have got to keep our sweet
boy healthy, happy, and germ free!
We can still have visitors and get
to see our family, Dr M just set some guidelines for us to follow
·
No sick people (obviously) or anyone who has
been around someone who is sick or has been sick in the past few weeks. Even if
it’s “just allergies”, for the next few months we have to assume you have a
cold.
·
If you have been to school, or around anyone who
has been to school, please shower and change clothes before coming to visit.
·
We are also going to have to limit Nolan’s
exposure to other children, especially those who go to school/daycare.
·
Please don’t touch his hands. You can touch his
feet or his legs, but please avoid those sweet little hands. He lives with his
hands in his mouth, so be assured that as soon as you let go of his hand it is
going straight to his mouth.
I am sure all of this makes us sound like crazy parents, and
many of you are probably thinking, my kid grew up in daycare and has never been
sick because he/she has been exposed to so much and their immune system is
strong because of it. While this is great, Nolan simply lacks the ability to
“build up immunity”. Exposure to illness and germs isn’t going to help him be
stronger for the next time. We will be treating Nolan like a newborn baby until
the sick season is over, and then again every year during the cold/flu season,
until Dr M tells us it is safe to do otherwise.
Just
to show how serious this is. After Christmas and being exposed to so many
people, Nolan came down with a cold, got an ear infection and had a fever. Just
yesterday Nolan got a fever of 102. We aren’t sure what caused him to get a
fever yesterday, his pediatrician thinks it is likely just some sort of virus,
today he is feeling better and temperature is down to 99.8. I just say this to
show how easily our sweet boy can get sick.
Physical Therapy
Dr
M is convinced that Nolan looks so great because of the therapy he is receiving
and that we are doing our homework when our therapists aren’t here. Nolan goes
to Fort Worth once a week for physical therapy, and then through ECI (Early
Childhood Intervention) Nolan receives occupational therapy and skills therapy
once a week, and this Friday we have our first appointment with a speech
therapist. It is great getting to see how Nolan improves week to week. We want
to give a special thanks to Joe’s Aunt Phyllis and Uncle Randy for giving Nolan
a physical therapy wedge for Christmas. We have certainly enjoyed it and it has
helped tremendously in Nolan’s daily physical therapy routine at home.
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| We went to Mardi Gras world, pretty cool, it is where they make all of the floats for the Mardi Gras parades, they also make the Chic-fil-A billboard cows. Oh, and we ate lots of bread pudding |
Overall
As
I said before Dr M was very impressed with Nolan. A few of the good prognostic
factors are:
·
Good muscle tone, in reference to other children
with CDG 1A of course. This came as a surprise to us, since we are so used to
hearing how low his tone is and how behind he is. She does believe that he has
some degree of cerebellar involvement, though she does not suspect it to be
severe. This is the cause of his tremors and will cause him to have balance
issues. Nolan is having an MRI on Jan 27, this will tell us to what degree his
cerebellum is effected.
·
The fact that he doesn’t have a feeding tube and
is gaining weight appropriately. He has always been in the lower percentiles
for his weight, however, from his 4 to 6 month checkups he went up from the 18th
to the 25th percentile for his weight (when we were discharged from
the hospital at 2 ½ months he was below the 1st percentile). Dr M
loved his chubby cheeks, and she loved even more the fact that he was able to
get this chunky eating all on his own. This is good for 2 reasons. #1 having a
little “excess” weight will be helpful to have more reserve in the event that
he does happen to get sick. #2 his ability to drink from a bottle and eat
pureed foods is positive for his speech development since speaking uses the
same muscles we use when eating. He is also quite the “talker”. She is unable
to say for sure if he will be able to learn to speak, but hey, we will take all
the positives we can get.
·
His social awareness. Nolan is, and has always
been, interactive with us. We have always been able to get him to smile, and he
is interested in everything that is going on around him.
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| He was happy to be home and maybe a little worn out. |
We are beyond blessed that we were able to make this trip to
meet Dr M, without the love, support, prayers, and financial assistance none of
this would have been possible. Words are unable to express how thankful we are.
 |
| This has nothing to do with NOLA, but I let Nolan try a grain of rice the other night and he was quite offended |
Plans for the Near
Future
January
is proving to be quite the busy month. Nolan had his 6month check up this week
with his pediatrician, all things looked well. Today he had his follow up with
his endocrinologist; again they were happy with Nolan’s progress with being
able to maintain his blood sugar while taking Diazoxide. In the next couple of
weeks Nolan has an appointment with his pediatric eye specialist, metabolic
geneticist, an MRI of his brain, a fitting for a brace (for him to wear for
short periods of time during the day to aid in sitting up), and of course his
weekly therapy sessions.
Here is a quick recap of the trip in Nolan's words.
