Sunday, July 14, 2013

A new day


I have always said that one of the hardest things about raising a child with mito is that we don't really know what this disease will do. We don't know what next week holds, much less 20 years from now. That is a realization that has been difficult at times, but more often than not, it has given us the opportunity to be hopeful.

Neither us nor any of Nate's doctors (and believe me, there are plenty of them between the two teams here and in Houston) are able to have any preconceived notions about how Nathan's life will unfold. He could grow up to have a family of his own some day, a life apart from our immediate family, a successful career, children of his own...or he may not. Nate's head mito doc wanted to make sure that we understood the seriousness of his presentation of this relentless disease...and we do. But additionally, we also understand that we do not have any way of truly hypothesizing about how or when this disease will take over more parts of my little boy's body.
However, we know that the one who created our precious son's body does know what may lie ahead for him and us, and we put all trust in Him. We continue to pray for wisdom and guidance for us and each one one of his doctors in knowing what medical interventions we need to implement in Nate's life and how we need to proceed in different realms. And until drastic medical complications occur, we will continue to raise our son like our daughters...trying to prepare each of our children in tackling the future as adults and making their own decisions. We are trying desperately to prepare each one of them in this life by increasing their spiritual thinking, academic knowledge, and social interactions. The last two are why we are all so happy to still be able to trial school with Nate...he really needs to be around kids his own age, and he is so excited to be able to go to school and make friends on his own. I seriously can not wait for this milestone happen for my little boy!!

Since getting home, I have had a good bit of communication with our pulmonologist at Shands, who we love greatly. Over the past 4 years, we have realized that our two different teams of doctors have some strengths and weaknesses in their care for Nate...our team in Houston has seen Nate several times for 4 years now and have a great understanding of how mitochondrial disease affects him. But they are limited to the 30 minutes each one of them see him every 6-9 months. Our team at Shands may not know as much about this disease, but they know Nate very well...they know him when he is sick and well, struggling and energetic, in the hospital/clinic setting and in normal life. So one team specializes in the effects of this disease and how it affects Nate...and the other specializes in Nate. They seem to work well together, but it is sometimes hard to be the middle man between the two teams of doctors.
That being said, our home docs have been amazing in all of this!! Our pulmonologist is contacting the doctors in Houston this week to hopefully be able to get what they want in testing during the cardiopulmonary exercise test so that Nate can have this test run at Shands and save us from having to travel to Houston again in a couple of months. Additionally, she is trialing him on an increased oxygen level to see if it may make any difference in his respiratory symptoms since I have expressed concern that I am not quite sure that it is time to move to the non-invasive ventilation route quite yet. With this change, I am keeping a log of symptoms to be able to dictate accurate symptoms one way or the other to help us and others decide what interventions may need to happen. I am so very thankful for both of our teams of doctors in this situation.

All of that aside, when I think of our recent trip to Houston, I immediately try to push our difficult and negative conversations aside, as the incredible positive and fun aspects rush to my brain. Nate and I did so many "fun" things during this trip and experienced many new experiences. It truly was such an amazing time with my son that I wish so badly Jay and the girls could have accompanied!! Not only did we do our usual of playing with our mito friends from Houston and Dallas, but we used the free weekend to visit San Antonio, Texas caverns, dear friends from my childhood, and a church outside of Austin that I visited numerous times as a teenager and hold the members near and dear to my heart. I have to admit that it was so much fun introducing Nate to so many friends and family from my life before he came around. I have missed each one of these individuals so much since seeing them 15 years ago...and seeing them recently, it makes me miss them 10 times more each day! My goodness, my heart yearns to be with them all!!

So when I think of our recent trip to Texas, my mind and heart seems to be confused with emotions. On one hand, this was by far the hardest trip emotionally we have taken in 4 years...but at the same time, it was the most rewarding with friends and love from so many. And that dichotomy in and of itself makes me realize how much our God was at work in this trip...he flooded our emotions with overwhelming love, support, and friendship during a time we experienced some of the toughest emotions we have had so far...

We will remain faithful to our God. He knows what the future holds for us...and in the mean time, we will happily serve Him today...and tomorrow...and the next day.


7 comments:

Melissa on July 14, 2013 at 11:42 PM said...

Amber, you are so blessed with a gift for words. God always does supply us with just what we need, but I know how hard it can be to hear what you don't want to hear. I love all of these pictures of all of these special people (not that I'm prejudiced or anything!) :) All my love and Prayers, Melissa

Brett Bultemeier on July 14, 2013 at 11:44 PM said...

Your words and your life are a living testament to the love our Lord fills us with. It is a real faith, not always full of smiles and wonderful, but a faith that endures and trusts. Your son and family have done more to help spread God's love. Nathan has already affected more change and been a part of spiritual growth, even to those he may never meet, more so than most of us could hope for. God is alive in your family and in that is a blessing. You will always have our prayers and the knowledge that Christ's family holds you all dearly.

Anonymous said...

Amber, I can see the Lord working in your lives, individually and collectively, by the faith you consistently show in your postings. You show so much strength of character and love of God in all you say. You are truly the epitomy of a Christian mother in the rearing of your children. You are also a great encourager to others who may be facing the same obstacles that you are each day, not knowing what that day will bring, as far as precious little Nate is concerned. My most fervent prayers are with you, and your family, every day. I know you are leaning on the everlasting Arms and He is the One getting you through each moment.
Much love to you all, Aunt Geraldine

Clara-Leigh on July 15, 2013 at 12:32 AM said...

SO beautifully put!!! I truly needed to read the uplifting, encouraging words reminding us that there IS a REAL eternity, and we must all prepare for that! THAT is the only true hope!!! Nate looks like such a big boy, and I love seeing all of the visiting and fun!! Blessings!!

Wanda on July 15, 2013 at 9:30 PM said...

Wonderful blog! So blessed to be in Gainesville with wonderful doctors that are willing to work together with Houston for Nate! Always praying for the Ferrells!

JenningsFamily on December 3, 2013 at 9:50 AM said...

Hi Amber I am new to blogspot and I have no Idea how to use it. I have been pressing many random buttons, and then I had a eureka moment and sent a message to you about my son who is very similar to Nathan......I later found out I had sent it to myself!
I will now try and attach it as a comment to your post, it's unconventional but may make interesting reading for you!.....(hopefully you can forgive my hopeless computer skills)

JenningsFamily on December 3, 2013 at 9:51 AM said...

Mitochondrial Disease and diagnoses
Hi Amber I have read your amazing blogs after first finding your videos on youtube. I have spent many hours on the internet since my son Alex was born over two years ago trying to help our DR's diagnose him (if it's actually posssible?!) Alex eventually had a muscle biopsy in June this year when they were fitting his PEG, still awaiting results! His story so far is VERY similar to Nathan's. Alex was Tachypnoeic at birth after being treated for infections with no success, the DR's hoped it was transient, they then picked up on the hypotonia, fluid filled kidney, brain cysts and enlarged liver. We too were told they thought it was SMA (Sharing the fear on that one with you!) The DR's think he has MITO but it is very hard to diagnose this side of the pond. Alex has had several tests and almost 20 hospitalisations for respiratory symptons, this year alone and a PEG and nobody can give us an answer! He breathes in the exact fashion Nathan does and my husband and I were amazed to see that the shape of your boys rib cage and pattern of breathing looks exactly like Alex's. I fully appreciate you are a busy Mum and you perhaps have very many jobs on your 'TO DO' list, but it would be very comforting to communicate with somebody that understands, I feel sometimes we are going crazy as Alex does look very normal, and without diagnoses in black and white, people tend not to believe you. Alex is admitted to hospital almost every fortnight now, and its becoming soul destroying! ( well.....almost.....probably slightly less than that ;) ) In the mean time I hope your gorgeous family continue to have such lovely times, and that Nathan stays well for a good while) Kind regards Megan Jennings
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