What a wild week it has been. If I could just quickly ask my friends and family who keep up with us to say a little prayer. We have a lot of balls up in the air, with lots of possible life changing events in our near future. We know that God will make it clear how we should proceede and give us the wisdom we need for each situation.
On to an update. 🙂 Having kids isn’t easy to say the least, but having Eli isn’t hard. I know all mom’s would do everything they could to get what their child needs. That’s not hard, it’s being a mom.
With all that being said I still feel that I am not always doing enough for Eli.
I was recently in a discussion with a group of moms on my FB about thyroid issues.
When we first found out Eli would have Ds we heard a lot about what health issues he would face and what he wouldn’t be able to do- totally negative I know! And while I agree that there are some things that go hand in hand with his diagnosis, many others simply do not. He does not have a stuffy nose because he has Ds. That’s silly and it’s not just not an answer.
Eli may be more prone to a stuffy nose because of his facial structure and smaller nasal passages but he does not have to live his life stuffy just because doctors say “that’s the way it is”.
So we supplement, we do therapy, we read and talk to our baby, we push him as far as he will let us and then some 😉 It also means I stay on top of his health, research new discoveries in Ds and push our doctors to do the same.
At 6 months old we had his thyroid checked. I am hypo and many children with Ds tend to have issues with this as well. Does it mean we shouldn’t treat it just because they have Ds? Many doctors simply brush off these “common issues” because they relate it to having Ds so it’s not treatable. I have run into this in varying degrees with the many doctors we have come into contact with over the last 2 years.
Tell it, sister!
So when it came to his pedi, we were quite particular in who we trusted. I trusted our doctor when she said Eli’s levels were within the normal range…until I started talking to other moms who had the same thing happen to them. So I asked for the report and did a bit of research myself. Turns out his levels aren’t normal, so back to the doctor we go. I explain that I had suspected it for a while (he has some symtptoms: dry skin, puffy eyes/face, cold extermities, mottled skin, fatigue, sweating while sleeping, constipation, slow growth) The doctor explains to me that I can’t go based off just numbers because every lab has different standards and different ways they process the bloodwork. Truth be told it was difficult to find any consistent standard for TSH ranges…but it still doesn’t feel right to me.
I did some more research…cause that’s what I do. DS A Day to Day Guide has been my Bible and I printed off every bit of supporting evidence I needed, talked with other moms in the community and created a plan.
We got a referral to a pediatric endo and we will see what they think.
While my doctor was well-meaning she did make it clear that she didn’t think it was just Ds that is causing any of our grief. It was nice to hear but I just don’t feel it’s enough.
Just like with Eli’s stuffy nose and reflux. We are giving him two medicaitions for his reflux and all it is doing is helping with pain when he does reflux. He still spits up daily and has discomfot in his belly (which is bloated all the time!). The same with his stuffy nose (which is likely aggrivated by his reflux because it goes into his nose!)- just covering it up with allergy meds.
But what’s the root of the problem? Why does he reflux? Why is is stuffy? Allergy? Food allergy?
We decided to contact a neurodevelopmentalist and a naturopathic doctor. I’m thrilled about both and excited to see what their approach will be (my bank account on the other hand is less than enthused…).
Ok, so what are these doctors? I have no clue. Honestly. But when I spoke to them I fell in love instantly. The potential they believe Eli has and their all natural approach is right up my ally. From what I have read, they will assess Eli and work with his natural abilities. They will look at his overall health and get to the source of some of these issues- what’s causing it instead of how to cover it up. I’m so excited and ready to move forward!
Hoping to get this all straightened out soon.
In other news, we only have 46 more school days, which is quite exciting. I’m working toward my time off with Eli this summer and I couldn’t be more thrilled to get that break.
I think that is about it. Prayers, lesson learned and summer break in sight. Very nice, if you ask me 😉