Nolan has kept us pretty busy since
being in the hospital. We have had several doctor appointments and therapy
visits. We have really seen big improvements in Nolan’s muscle coordination and
stability, although we still have a long way to go.
Currently
Nolan has a skills therapist and an occupational therapist that come to the
house once a week, and next week he will start seeing a physical therapist in
Fort Worth which we will be going to every Monday.
We
have added a pediatric eye specialist to our team of doctors. Nolan is pretty
near sighted, which isn’t a big deal right now because Nolan’s world is small
and close. However, he will need glasses by the age of two. The good news is
that as of now the doctor does not see any eye/vision problems that cannot be
corrected, which was a concern for us.
We
had an appointment today to see one of the top CDG doctors in the world, Dr.
Morava based out of Tulane, but because of our nice winter storm our flight was
canceled and we are having to reschedule. We are extremely excited about
getting to meet Dr. Morava, and are anxiously waiting for our next appointment
on Januray 7. The main goal of this appointment is to gain information and
become connected with the top researchers in the world.
Nolan
has also added another Endocrine doctor, one who specializes in
Hyperinsulinism. Since being in the hospital Nolan has struggled with
maintaining his blood sugar. He has to eat every 3 hours, around the clock,
meaning we have to wake him up at night to eat. It can get pretty exhausting.
Tomorrow
we will check into Cook Children’s hospital where Nolan will undergo a fasting
study. Basically, tomorrow night Nolan will start fasting and we will check his
blood sugar every hour. When his blood sugar drops below 50, he will have
several labs drawn and the fasting study will be over. These lab results will
give us some insight on why he is unable to maintain his blood sugars and
hopefully will show us how we can treat it. We were told we would only be in
the hospital for a couple of nights, but that just depends on how Nolan does
with the study. We ask for your prayers for Nolan, his doctors, and nurses ,
and our sanity during our stay.
We
appreciate all of the thoughts, prayers, donations and kind words we have
received. We cannot thank you enough. Nolan is growing and is such a happy boy,
have you seen those chunky cheeks of his??? We are beyond blessed to have the
support system that we do. I hope you continue to follow the life of our sweet
boy. I plan to update you as often as I can.
I leave you with a few pictures of our life these past few months.
.JPG "Nolan's Baptism") |
| Nolan got baptized and we were blessed to be surrounded by friends and family. |
 |
| The top right photo is at a doctors appointment, Nolan almost always has an entourage when going to the doctor. |
HI Andrea,
ReplyDeleteI'm a friend of Nila's and I want you to know that we are all praying for Nolan & the entire family. He is precious and very blessed to have such a loving, supportive family. I can't even imagine how hard this is for all of you. Sending you all a big hug.
Sincerely,
Carolyn
Thank you Carolyn. We appreciate every prayer we can get!
DeleteHi, Andrea,
ReplyDeleteI'm Cathryn. I went to high school with Jordan and saw your story on her blog. When I saw Nolan's face in the pictures, I immediately saw a sweet little spark behind those eyes. As I read your story, I was deeply moved to pray for Nolan and your family every time I pray for my son Grant which is quite often. Grant does not have a life threatening diagnosis; he does have some neurological abnormalities, nystagmus and developmental delays, but we don't know if there are any underlining syndromes or how it will really affect him in the long run. We are getting to do the whole physical therapy, occupational therapy, specialized skills therapy, wait and see thing. All this being said, I pray for my sweet boy a lot, and when I do, I pray for Nolan,too.
(I'm going to be hugely presumptuous and share with you a bit more because I feel the prompting that I'm supposed to.) I believe that God reveals glimpses of our children's purpose and character to us even at a young age. My daughter is a fierce warrior, and I look forward to seeing that determination directed toward evil and injustice instead of her vegetables. :) I knew even in pregnancy that Grant would be a quiet strength. One night as I was with him, I was praying over him and his purpose and identity, and the Holy Spirit whispered into my heart that he would be a quiet strength that the weak would know. That kind of baffled me because the phrase itself didn't even make a whole lot of sense to me. Some weeks later, I was crying while trying to feed Grant in his high chair. He was slumped over, not sitting up yet, and I'm feeling the discouragement that we won't meet our therapy goal, and wondering if he ever will be. As I prayed for God's strength to strengthen Grant, God's clear message was "But My strength is made perfect in weakness". I was stopped dead in my tracks. I knew that it is true. I've seen it time and time again: how God takes the weak and makes them strong, uses the foolish to shame the wise, takes the little we have and feeds multitudes. So I continue to pray for physical healing, knowing that God's strength is planned for more than just little league. I look forward to seeing how God works in Grant's life in might ways, and I have no doubt at all that he is doing the same with Nolan.
I hope this is encouraging, and if it is not, just ignore the whole thing. Your little boy is precious (which I'm sure you know better than anyone), and I lift him up in prayer as often as I do my own son.
Cathryn, Thank you for sharing your story. I like the term "a quiet strength". Sometimes it is hard (as you know) to give up our own plans we have and allow our plan to be God's plan. Thank you for your prayers, my husband and I have been praying for Grant since reading your story. I cannot wait to see what God's plan is for our sweet boys. In Nolan's short life he has already touched more people than I ever could, I am sure the same goes for Grant as well.
DeleteI am sure you have a metabolic doctor that you love, in case you don't or are looking for someone who might help finding answers to the cause of Grant's delays, we are IN LOVE with our metabolic genetecist Dr. Alice Basinger. If you are interested in her information I would be happy to share or you can just google her if you wanted.
Again, thank you for sharing your story and for your prayers.
Andrea, Thank you so much for the information on your doctor. I will certainly look her up. Grant's neurologist has found some neurological abnormalities that could or could not be causing the delays, so getting her information is very helpful! Thanks also for the prayers! It is true that these little guys are touching lives already, and I, too, cannot wait to see God's plans for them!
ReplyDeleteThank you Kathy!!
ReplyDelete