So at 2, this is where we stand. Beckett continues to be diagnosed with failure to thrive, gastroparesis, severe chronic idiopathic constipation, GERD, mild to moderate developmental delays, relative macrocephaly, malabsorption and some other stuff...He continues to fight frequent infections that the rest of us do not catch from him-- c.difficile and salmonella to name a couple. But we have made big strides in the right direction, and we are getting closer to a diagnosis- or we may already have as close to a diagnosis as he is going to get. His newest diagnosis is Cystic Fibrosis related disease.
Beckett has come a long way this year since his first birthday. Looking at him, you would never know the struggles he has been through or that he isn't "perfectly healthy." Although of course, we know he is perfect and wonderfully made. One sees him and probably sees a petite little boy with no idea of the health struggles he faces daily. He no longer has constant dark circles under his eyes and he isn't teeny tiny anymore. It is an invisable disease. The treatment for his Cystic Fibrosis RD is working. He has gained a whopping SIX pounds and grown FOUR inches. He has made huge progress in growth. At 2, he is a pound smaller and the same height as big brother Brant was at one year old. Last year, he wasn't waving bye bye or clapping or saying mama. And now, he is walking and talking...even some 2 word utterances like, "Hi Beat (Brant)" and "Up Pea (please)." Speech is probably the biggest struggle for him, but he is very playful and is moving in the right direction. His development is making progress and we are so thankful.
His GI system still doesn't seem to want to move. He is currently on a huge dose of ex-lax each day to have a bowel movement. He has days where he doesn't seem to feel well and is very cranky. Days like this he does not want to be touched and does not want to go anywhere. I can't say that I blame him. It can't feel good.
He catches infections frequently, we are not really sure why. His immunoglobins and other immunology blood tests are within normal limits. But he gets sick often. His most recent infection was salmonella a couple of weeks ago. For someone who does eat meat in a house where nothing was cooked for a month (don't judge- we were in the moving process :) ), we are not sure where this came from. The grocery store is the leading thought.
We have so much to be thankful for over the last year. Our trip to Cincinnati Children's was the biggest game changer for Beckett. It was hard to get there and emotional to be away from our older son right before Christmas, but it was worth it all. Since our trip there, he is able to eat pureed food and crunchy food, he has fought off c.diff a couple of times (which is better than just never getting rid of it), and he has grown.
And our trip there is what has brought us here...to "where?"
Let me explain. No one quite knows where we are. An amazing research Cystic Fibrosis specialist found that Beckett has very little CFTR function in his colon--basically, he has a "Cystic Fibrosis colon." However, his other test for Cystic Fibrosis (CF) was negative. We know his digestive system is very sick and does not function well. It is heavily affected by this CF involvement. The CF specialist is very honest that we don't know what this means, but he is continuing to research it and will keep us updated as he learns more. As the pediatrician explained at his 2 year "well" check up, "we know he is somewhere on the Cystic Fibrosis spectrum, but we (the medical world and us) don't fully understand it right now." I will try to give more details on CF and how it works soon.
And each specialist thinks there is something more going on. For example, the CF specialist says that yes, CF can affect his digestive system in this way, but there must also be a GI issue going on. In other words, the pulmonologist does not think CF is our only issue. GI says that yes, he has some GI issues going on, but there must also be an allergy going on....etc, etc.
So there it is...we don't actually know where we are. The doctors don't know where we are. We are in a rare position. A child on the outskirts of a diagnosis...only a couple like him that the CF specialist has found. A child who has one test that says yes and another that says no. So where do you fall when you end up half in-half out?
Welcome to Where?
And while a year later, we are not sure where we are--and wherever we are may be very uncharted and new territory, I still believe what I wrote a year ago. The "where" where we are today is temporary. It is where God has put us to best use us for his glory. But ultimately, Heaven is our home. That doesn't mean I do not enjoy my days here and love the work God has me in, but it means that I have peace knowing that I will someday be with my Father. And someday my son will be fully healthy.
From last year:
I also know the hurt will go away because this world-- not Italy, not Holland, not Texas-- is NOT our home. It is not our final destination. Revelation 21:3-4 says And I heard a loud voice from the throne saying, "Look! God's dwelling place is now among the people, and God himself will be with them and be their God. He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away." As a Christian, the hurt will go away. Because this place is not meant to be our home.
Mimi and Ms Debra are piled up in the hotel in Houston for our stuttering conference. We love you and are so glad you are writing again!
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