Wednesday, October 20, 2010


Lately, quite a few of my thoughts have been centered around the amazing workings of God in our the many aspects of our lives, but particularly those surrounding us since Nathan's birth. A year and a half ago, I met with an amazing doctor at the mito symposium in DC, and she gave me her info so that Nathan could enroll in the mito clinic in Houston. A year and a half ago, we needed help and direction and someone to be able to give us many of the answers we longed for on a daily basis when tackling a complicated disease of that our son had recently been diagnosed. A year and a half ago, I had no idea the relationships and friendships that would ensue from the decisions to seek help in Houston...I had no idea about the love and joy and heartache that would encompass our lives from these decisions. A year and a half ago, I had no idea about the amazing plans God had in store for this chapter in our lives.This week has been a wonderful week. During our last visit to Texas in April, we had met and become fairly close with the Knight family, along with other families in this region. We were been extremely honored to be able to stay with the precious family this week. My heart has sunk quite a few times this week in missing Samuel running around with Lauren and Nathan, but it helped so much to see the pictures of him everywhere...his gorgeous angelic face looking at you through a photograph.
Ben and Missy and Lauren are simply incredible! Through the grace of God, they are teaching countless others through their actions in innumerable ways. Our week with them has been amazing, and I know that both Nathan and I will miss them terribly for the 6 months until our next visit. Nate and Lauren were two peas in a pod this week...playing together, sitting beside one another when together, holding hands walking to and fro. It has been quite cute to watch. Missy and I just laughed and laughed during our visits...the kind of laughter that makes your cheeks and stomach hurt. Amidst the laughter, we also had serious and heartfelt conversations, sad and reflective ones...but more than anything, we laughed. It's amazing how God places people in your life to make such huge impacts on you and to teach so much about his blessings. I will miss my dear friend.
Nathan had a really great week. As he gets older, it has been nice to see his excitement during these trips...the airplane ride, seeing friends, remembering the doctors from past visits. On the medical front, we had quite a few questions in his care answered. He will now be on a continuous dose of iron to help combat against his iron deficient is clear that he can not retain iron stores without constant supplementation. We know that iron is a free radical and poses its own risks against patients with mito, but we are at the point where the pros seem to outweigh the cons in this treatment. We also ran quite a few metabolic labs to try to help figure out some oddities with the little dude metabolically (and with absorption issues, etc) and genetic studies again. It would be so nice for us and for future generations if we could pinpoint his genetic mutation, but like his mito doc mentioned during our appt, only about 10% of the patients have a confirmed genetic defect to support the diagnosis. We are still so much in the infancy of this disease...
Our appt Thursday was with the doctor in the clinic who specializes in pulmonology, immunology, and allergy. Since we had a trial time off Nate's asthma meds over the past couple of months, we have seen a few "flags" that he was indeed benefiting from the asthma protocol we had him on since he was really little. I had always questioned the diagnosis of asthma from our home pulmo because he was so small when he was diagnosed...he wheezed during activity and when sick, but I just didn't know if that diagnosis fit. Since being off meds, he hasn't wheezed too terribly much, but he does cough during exercise, retract deeply, and drop his sats. So, we have started back on flovent and added xopenex instead of albuterol, and she has officially diagnosed him with asthma...obviously, sometimes a mother is wrong. :) She also said that we needed to increase his O2 liter flow from 1 to 2 liters per minute continuously to help with his desats, periodic retractions/tachypnea and increased exhaustion cycles. He had labs to check to see if he was keeping his titers to his vaccines (he tends to lose those titers and needs to be revaxed...all as a result of his immune deficiency due to mito) and other labs checking immune function, and a flu shot.
We absolutely adore the doctors in the mito clinic here. Its amazing how doctors like these can steal your heart so quickly. We have wonderful doctors at Shands here at home, but going to Houston is just different...they know so much more about this disease, and they have answers to the many questions and treatment plans for the confusing symptoms. I always leave there so uplifted by the level of care and support we receive...and the love they show to Nate. He was old enough this trip to be able to talk with the doctors some and show them how to use the ipad. He was really great this trip...well behaved and so sweet.
Along with being able to spend a lot of time with the Knights, we also had the wonderful privilege of visiting with another mito family from Knoxville, TN who was there for their appts as well. Eric was so precious...he and Nate shared cars for a bit before Nate fell asleep for a majority of the visit. It was so wonderful to get to talk with Eric's mom and grandma. We also had the chance to meet Cooper and his mom, Sarah, for a bit. Cooper underwent an intestinal transplant about 6 months ago in Pittsburgh, and they have recently made it back home to Houston. They are currently in the hospital, so we were able to visit shortly, but I never had the chance to take any pictures. It was so good to finally meet them! And finally, we were able to attend a family/sibling support group of the Houston chapter for UMDF, and it was really great to be able to meet quite a few more mito families from that area.All in all, it was a wonderful trip. We miss our friends so much, but it is good to be back home. We'll be back in 6 months, and I look forward to seeing everyone again!


Michelle and Sean on October 22, 2010 at 11:36 AM said...

It's nice to hear about how you feel about the medical team in Houston. We are thinking of seeing the mito doctor there to see what she may think with Maggie. We feel sort of stuck here. The hospital here has no idea about anything with mito.

Thanks for sharing about the knight family! I'm glad you guys had a nice visit!!

Sarah on October 23, 2010 at 3:37 PM said...

Wow! What a great trip. Kinda sucks about Nate's respiratory state though. I hope the extra o2 helps him. Dr K sounds like an incredible doctor.

Thanks for sharing your trip with us. I love hearing about the Knight family.

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