Let's face it... Toby isn't tiny anymore. This isn't a story about a typical toddler with an atypical size. I've made some changes and I'm sure you've noticied a modification in the title of our narrative now. From this point forward we're focusing on our Growth, on our God, and on keeping up with any obstacle that comes our way. On never giving up. I can't wait for what this year brings.
When something good comes from something terrible
If you've been following our journey, you know about that moment in time which was the pivital moment in our path to a diagnosis. Toby's hypoglycemic episode which landed us with pass straight to endocrinology, and directly to our Growth Hormone Deficiency Diagnosis. If you recall, he had to fast for over 24 hours, and his blood sugar dipped so low, he was unresponsive and had to be rescutated. It was terrifying, and telling, and such a horrifically wonderful thing to happen to us becuase we finally had something to learn from, and to grow. This moment in time, not only gave us a concrete direction with our medical team, but strengthened the bond I have in God, in my family and in my understanding of a what mother's love is truly capable of. For this, I am forever grateful.
Toby's doctors discussed at length with Parker and I how this episode could have been prevented. If you recollect, I felt like they weren't listening to me when I told them he wouldn't eat the things they told me to give him during his fast. Things like broth, slushies and jello. I was proven correct, and even thought they acknowledged this, I still wondered if there were other mothers like me who had experiences of this. I would think about families being put in positions of seeing their unresponsive children sheilded by white coats, all because they felt like they weren't being listened to. I shudder at the thought.
Wouldn't you know, like all of the great conicdences that have come to light in our journey, another one makes itself known, and helps me let out a huge sigh of relief about all my worry that what happened to us might happen again to another child. A family member who works in the surgery department at Children's hopsital reached out to me. A nurse that's worked there for many years, she's always been a great resource for us, and has actually stopped in to visit and reassure us many times when Toby's had surgical procedures done. She couldn't wait to share with me that the surgical teams had a brand new training seminar and Toby's case was referenced as being an example and experience that brought about a change. Now for children being required to fast for extended period of times, they have a new blood glucose protocol to help try and prevent crashes like his. Its routine for kids in their diagnostic phases to have procedures done which require fasting. They don't know the cause of the symptoms and if a metabolic condition (one which affects how the body processes blood sugar) is the root cause. It only makes sense that blood sugar checks are part of the process. And now they are. I know that 17 isn't the lowest blood sugar that's ever been recorded. I know there are many children much sicker than he. But I know that God has a purpose for every ounce of pain and worry. And ours is hopefully that, one day, a mother and father won't have to see their child unresponsive because of new protocols that prevent crashes like his. All because a tiny little boy registered with the lowest blood sugar they had seen in that department. All because of Toby. What a precious gift God has given us.
Dysauto- huh?
January brought with it a trip to the neurologist. Toby has regular check-in's with Neurology because Celiac Disease can manifest itself with complications in the brain and nervous system as well. The injestion of gluten to someone with Celiac is more that just an allergic reaction - it's an autoimmune response which makes the body attack its healthy cells. These healthy cells can live in brain as well as the digestive system. A person with neurologic side effects will have trouble with their balance and their vision. They will stumble and fall, and have numbness and tingling. Luckily for us, Toby does not show any indication he's having these side effects, but it's important we know what they are and what to look for in the event they begin.While we were there, we began talking about some symptoms Toby's been showing of other hormone deficiencies. We went through some last minute testing a few months ago which indicated Toby's levels were fine, but he's still been having episodes where he hasn't been normal. I was hoping his neurologist would be able to shed some light, and that he did.
Since all of T's diagnoses have been rolling in, we've been told by more than 1 provider that they don't like having all these random things piling up. They prefer to figure out, what they term, and umbrella diagnosis that can explain why all these seemingly random things are happening. Now we're told Toby's being evaluated for a condition called Dysautonomia. Pronounced like Dys-Auto-Nom-ia.
Dysautonomia International, an orgainzation funding treatment of this disease, describes it as an umbrella term describing several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the "automatic" functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death. This would describe the events happening with Toby causing him to feel cold all the time, episodes of paleness and weakness, and sudden bouts of fatigue. There is no cure, but it is treatable. It's another thing to worry about in our laundry list that's already been created. While Toby is a tiny, we just watch for symptoms. As Toby becomes a young man, we will know more because he'll be able to articulate moments when he's feeling not right, and hopefully we can head off any complications before they start.
So what have we been doing?
In the 6 weeks since I've last posted - what's been going on you ask? Well, we've been playing in a whole bunch of sand...
And a whole bunch of snow..
We've been back and forth, and back and forth to the doctor. But not for Toby, for this girl. Who has allergies, and asthma and croup and pnemonia.
My old exhaustion when Toby was this age, dealing with his complications - now finding another perfect fit in my life with my daughter and her complications.
Sometimes when I'm stressed, I ask God why he would have me go through such worry and fatigue again. Didn't I go through enough?? But I'm reminded ever so gently when I'm sitting in my daughter's room, in her chair, with her blonde hair tickling my cheek as I rub her back. I'm soothing her crying and I am being enlightened. The only time I will ever feel needed and complete is when I'm being a mother. This is something He knows, and reminds me when the daily struggles of being that mother prevent me from being thankful. For those days when the only thing I pray for is bedtime, I'm balanced with those days when the only thing I pray for is my daughter to stay comforted in my arms. What a precious gift God has given me. The harmoneous balanace of parenthood.
Thank you for listening,
Lindsey
