Managing

"Toby, are you mad at me?"

I ask leaning over, holding his foot, while he plays games on the iPhone in the corner nook of the couch.   He pauses and looks up, wide blue eyes, the most innocent thing I've seen, and simply squeals - "No", with a quick shake of his head.  

It takes all of me not to immediately bust out crying, a result of the crazy emotions I've been having learning how to "torture" my son the correct way with pokes every night.  We had just finished our nightly routine of finger sticks and shots, and I was taking things a lot harder than he was, he made clear. This learning curve is a sharp one. I'm not doing everything right yet, but I'm trying so hard to work at it, even though my hands and thoughts still shake.

Distractions  

Friday afternoon, I met up with an old friend who has children Toby's age.  We decided for the mall, since the rain threatened a good time at the zoo.  Toby needed a distraction, and a little fun, after everything he's been through.  Soon we were off and running, playing and laughing - such a refreshing site.

Toby and Declan are both 2 years old.  Declan was born in October, Toby the April after.  Its always eye opening to see him playing with kids is age.  At the playground I'm always trying to guess and compare - when I know the birthday and compare the size, I feel an uneasy feeling in my gut.  Not for now, but for later, when Toby is older.  I envision him getting picked on, I envision him getting picked last, always.  I envision my worry growing instead of my son.  I have to check myself and focus on now, or I drive myself crazy.

Hey there good lookin- Room in there for two??

 Sure, I'll share my cheese with you!

Bottle Break

Unfortunately a dismal site when we got home - Packages stacked a the door - a harsh reality check.  Toby's Human Growth supply was delayed a few days, and I had two nights off from stabbing him.  Now it was unavoidable. 

Wha Wha Whaaaaaaaaa

While he is getting used to the finger sticks, holding his fingers out for me, and counting the numbers we see on the screen, he was not prepared for, nor appreciative of the shot.  We tried a suprise attack the first night, which didn't turn out good - Me not keeping the needle in long enough due to his squirming and watching half of the fluid run down his backside.  The second night we tried to explain to him what was happening - showing him the supplies and trying to go slowly - that didn't go well either.  Terrified fits on the kitchen counter.  I'm confident we'll work out a good routine - it will just take time, and a lot of my strenth (both figuratively and literally) until it all works out. His glucose levels have been within normal ranges - no need for emergency shots or supplies.  For this, I am thankful.

Look at how tiny this needle is!  Thank God!

Walk it off

Saturday we had our Gluten Free for Cincinnati Walk.  This was a fundraiser thought up from a Mom like me, whose son was diagnosed at 3 years old with Celiac Disease.  May is Celiac awareness month, and she envisioned a retreat where those afflicted with this autoimmune disease would have a venue to get together, share recipies and samples, and stories of support.  The walk had hopes of raising money to start having a yearly convention here - raising awareness about the disease and providing a weath of resources for families.

Go faster Mom

Look what we did!!!

Don't mind me, I'll just stay cute and quiet

Now, I don't blaime you, Celiac Disease is probably one of the lowest men on the totum pole in terms of charitable donations.  When there is so much worse in the medical community, its hard to swallow gifting or contributing for a disease which can be almost enitrely treated by a change in diet.  In the big scheme of life, things like this do not matter:

Unfortnately Toby has to eat the second cupcake not the first 

It's too bad we have to eat the ice cream on the right instead of the ice cream on the left...

I'm not trying to be annoying coy about our Celiac Diagnosis, I just want you to know, after everything we have been through, and everything going on around us, its become abudantly clear that I should not worry over a change in diet.  We have been managing this beyond well, and I just needed to cool my mom brain down long enough to get it.  I do now. Thank you for being my sounding board through our initial diagnosis. I look back and realize I was more worried than I should have been.  I should have known my resiliant son would have no problems.

That being said, it is comforting to know you have a group that understands what you are going through and can provide tips and tricks to succeeding in your new lifestyle.   If you are not personally affected by it, I'm not sure why you would care, but we do.  And I'm so thankful we walked.  We brought home all of these yummy samples!!! 

It was so nice that Toby could reach out and eat ANYTHING he saw!  We've spent alot of time checking labels and keeping an eagle eye watch on anything he puts in his mouth, to just get an hour to turn off that sensor was refreshing.

Cookies are my favorite!!!!!

Next Steps

Toby has a scheduled brain MRI next week.  I am told it is standard protocol to scan the brain for other possible abnormalities when they find that 1 thing ins't working there.  This is just a way to rule out any possible problems with his brain.  I am confident my sentence speaking, letter loving, color shouting boy is fine in that area, but I am comforted they are doing everything possible to make sure he is safe.  He needs to fast again and be sedated for this procedure, so fingers crossed and prayers it all goes smooth.  Another appointment after that will follow up in Endocrine - and we will meet back with our doctors to review his progress.

I want to thank everyone again for your support and uplifting prayers over this past week.  It was draining on us all, but now we are getting back into our routine, and hopefully soon our nightly injections will be as common as saying goodnight to the moon and stars. Thank you for sticking with me and my son, and Thank you for caring.

Thanks for Listening, 
Lindsey