For those of you who have kept in touch with Ross and I over the last few weeks - THANK YOU. We've really leaned on the support of our friends and family during these tough times. I really can't put into words what we've been going through, but I can say that I wouldn't wish it on my worst enemy.
We've been taking Connor to the pediatric GI specialist for two weeks now. The first thing the doctor did was switch Connor's food - thinking his problems are caused by a milk protein allergy. The second thing he did was put Connor on a reflux medicine. Last Friday we had an upper GI test performed on Connor and have confirmed that he has "silent reflux" - which basically means that he suffers, but silently. He doesn't spit up like most reflux babies, but he has an aversion to food because it's painful for him to eat.
To make things worse, Connor's officially been diagnosed with "failure to thrive". This diagnosis could be caused by several things, some scary - some not. As is common practice for FTT patients we had Connor tested for Cystic Fibrosis. The first test that was performed (a sodium/chloride test) came back inconclusive, so on Friday we headed to the lab for genetics testing on on three of us. In order for Connor to have CF, Ross and I would both need to be carriers.
Fact: 1:31 people are carriers of CF - a baby born to two CF carriers has a 25% chance of contracting the disease.
So now Ross and I are forced to wait. It takes 7-10 days for the results of the genetics testing. Without a doubt this is the longest, most painful wait of my entire life.
If Connor does have CF, then it is not the end of the world. CF treatment has come so far in recent years and with some significant lifestyle variations can mean a long and happy life. When Ross and I were kids, a CF patient had a life expectancy of 5 years old - now the life expectancy is 35 or beyond.
Either way, we're all extremely scared right now. I will never be able to describe the feelings or emotions that we're going through. This has already been the most horrific and excruciating experience in my life and it has changed me forever. Please keep us in your thoughts and prayers.
2 comments:
Well, I hope you know that you are all in my thoughts and prayers regardless. However, right now there are extra thoughts and prayers being sent your way! I am so very sorry that you are experiencing any of this right now, my heart aches for all of you! Conner is a very lucky little guy to have you and Ross for his parents, you are giving him the best possible care. I love you very much and again, am so sorry that your heart is aching right now.
Sorry to hear you are going through all of this Leia! I will keep your family in our prayers and please keep us posted on the results!
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