We've come far... and have many to thank.

 We have come so far and have so many people to thank.

Saul was born Sept 28, 2010. 15 months later he was diagnosed with Type 1 diabetes.  Our lives were completely changed. I had to leave my job. I had to learn how to do math… and give shots (the math was way harder than the shots). I had to learn how to operate an insulin pump, how to communicate with a non (or nearly non) verbal child. I’ve witnessed 4 seizures.  We’ve had the ambulance at our house twice. I’ve administered Glucagon.

We’ve been blessed (thanks to the support of our family, friends, community members and generous donations) to add one of the most important tools in our daily struggle and fight with diabetes.  ADA (our diabetic alert service dog in training) joined our family in July.  We continue to rely more and more on her skills as she progresses through training and proves herself over and over.  

This week “Team Saul” grew… a lot… and the support, encouragement and love has been overwhelming.

Saul started Montessori on Wednesday. The experience has been incredible.  Saul’s teachers are amazing.  A-MAZE-ING. The reassurance they provide, the confidence they exude- their sincere concern for him and his well-being make any worry I might have ever had just disappear.

Sure, I know it’s only day 2.

And day 1 wasn’t “perfect.” (BG at snack time = 308. Glazed eye look during “recess” = BG of 44. Yes. 44).

That’s life. That’s diabetes. That’s a three-year old who is still hypoglycemic unaware.

But to include more people- to have others nurturing, loving, and watching out for him-makes our team stronger… and in turn gives me strength.

 

I want to publicly thank the Saint Agatha community for reaching out to Saul. I want to thank Mr. Pica, Mrs. Lane, Mrs. Benson, and especially Mrs. Leslie who have all (not only said… but shown) how much they want Saul…and ADA… (though we’ve still got a few more years for her).   

And a special thank you to Phil and Linda (my mother and father in law) for all the support they have given us over the past two years and for affording us the opportunity to have this experience.

 

Now… if Saul can keep his clothes on, his mouth shut (at least a ¼ of the time) and keep from getting into too much trouble… we’ll be set.

 

 

 

I promise to catch up... one of these days... here's a start.

I promise I will start blogging about this journey soon. It's been so crazy lately that I just haven't had time to sit and type. I do want to share a moment from last night. First off, I don't want anyone to be fooled that this transition hasn’t had its challenges.  Like most everyone I tend to show the “all rainbows and butterflies” side of the story on social media. The fact is… ADA is only 17 weeks old and still learning. She’s doing amazing and has such incredible potential and is/(will be) a fantastic service dog. As she continues to “hone in” on her skills and we (humans and ADA) begin to understand each other a little better “alerts” will become clearer to us (humans).

With that said… Last night in typical fashion our house got CRAZY. The kids were wild. ADA was wild. Jeff and I were reaching our limits of sanity. I thought ADA was feeding off the kids. She was “bouncy” and “running” and refused to settle. Jeff even came in and said… “She’s like Tigger… she won’t stop jumping.” I took her out- I tried to walk her- eventually she calmed down… and laid down. At the beginning of the “crazy” I had glanced over at the MySentry… and saw he was 190. I remember thinking… okay… he’s fine.

Now… had I done – what I was supposed to do- I would have realized that ADA was not just “acting out” but actually trying to “alert.” When I finally realized…. almost 35 min later (which happened to be when I glanced over at the MySentry and saw 90 two arrows down) I checked him and he was 55.

I can’t explain it. I don’t fully understand the science behind it… and I know we’re in the process of “perfecting” it. But I can say… ADA is pretty amazing… and we are so thankful to have her in our family and taking care of Saul.

A Dog For Saul Website

Ch-ch-ch-ch-Changes

They're not always bad.

 

(changes)

 

They're difficult.

 

They're necessary.

 

 

They're inevitable.

 

(sometimes)

 

 

I could attempt to explain what led us to enduring a 7.5 hour apt at Cincinnati Children’s Hospital last Friday (one that involved a series of thorough hour long + appointments with a Social Worker, Pediatric Endocrinologist, Nurse/Diabetes Educator and Dietician) oh… and agreeing that the 1.5 hour or so drive both ways… was “totally no big deal” ............... but instead… I’ll just say… my devastation over our Ped Endo at UK leaving coupled with this brought on the change.

 

 

And it was great.

And it was worth it.

 

 

Having been fully informed about the length of our initial apt, Jeff and I decided to drive up on Thursday so we could spend the day with Saul at the Aquarium and hang out in Cincinnati. We thought the alone time with Saul might be nice.. and we were right. We had a wonderful "mini-vacation." Because it’s possibly the only one I’ll get this Summer – I took full advantage of all hotel amenities and was living it up at Embassy Suites.

Cincinnati Children’s is amazing. I will try not to compare our experiences with UK Children’s (mainly because I have friends and contacts at UK) but it’s hard not too… The Pediatric Endocrinology Dept/Clinic at Cin is so much bigger and better staffed (granted… bigger is NOT always better) so quality of care will be determined as we progress through this journey. The striking difference however, is the approach to treatment. There is something to be said about the unique (and it is, believe me, “different” than what we’ve been accustomed too) method that is used.

 

From the beginning of the process I was told the Clinic institutes a 4 team approach. You are followed by a Pediatric Endocrinologist (there are a number of them-  and the Clinic encourages you to find someone who "clicks" and is the "right fit" for you). Many of Dr's specialize in a specific Diabetes/Endocrinology “area” so you have options in terms of who you see. Because this was our “initial visit” they automatically scheduled Saul with someone - and in the end- we were very pleased- so we agreed to follow up with her for our next apt.

 

Other than the wait (which I had mentally and emotionally prepared for) I was most concerned about meeting the Dr. I loved Saul’s former Ped Endo and had very high expectations… I’m happy to say they were exceeded at this first visit. Our Dr. was so thorough- so detailed and so great at communicating and explaining that Jeff and I seriously walked away saying… “Wow. That was awesome.” She also had good bed-side manner – suggested we take a half an hour lunch break between appointments and even walked us to the hospital cafeteria. Needless to say… I felt a huge burden lifted.

 

We – literally WE (the Dr. and I – Jeff was wrangling Saul during most apt’s…lol) sat and reviewed Saul’s data which they uploaded from Carelink. WE sat and discussed his A1C which upon finding out was an 8.4 nearly caused me to melt down. My memory is fuzzy- but I’m pretty sure she had to scrape me off the floor and hold me up for a good minute and a half… I was prepared for a “higher” one… but NOT prepared for an “above 8.”

 

 

The Dr. on the other hand was totally okay with it- and said it was great. She showed me the print off where 8.5 and below is the “target.” She said, “I understand you are shooting for perfection- but you have to realize you are doing a great job and you won’t always get perfect A1C’s.”

 

 

We both agreed that our first and most important “target goal” was to start “smoothing out” those peaks and plummets in blood sugar levels. Saul’s been on quite the roller coaster for the past month or so- and appears to be extremely sensitive to insulin corrections – so WE made a number of adjustments to bolusing and left his basal rates alone for the time being.

 

She also ordered blood work to test for Celiac and a few other “type 1 related” diseases and issues. She also talked about the varying types of diabetes “within Type 1” and wants to try and find out “exactly what we’re dealing with, to know how to go about a treatment plan for managing his care.”

 

 

*Because... side note (not all Type 1 Diabetics are the same) I have to keep telling myself this over and over and over and over when I listen to someone say... "Well so and so's kid... has so much better control... so and so's kid NEVER has lows... so and so's kid never had to deal with any of this stuff."

*Because... (second side note) I take it all so personally- as a reflection of my performance as a Mom and a Type 1 caregiver... I know... I need to get over it. Already.

 

Jeff and I were equally impressed with the other specialists we saw during our visit. I felt like I easily bonded with both the DE and dietician (who I think I cracked up a good 65% of the time). The Clinic encourages you (like with your Dr) to find “someone you click with” in terms of the other team members and I will def. follow up with them next time.

 

In general- most of what was reviewed and discussed – I already knew- but am happy to have walked away with a way more detailed “step by step” instruction guide on “sick day management” and treating ketones.

 

Oh... and we also now treat at 80 as opposed to 70.

 

All 4 specialists encouraged communication and all 4 took pride in the fact the Clinic offers so much support through communication (because of the number of staff and resources).

 

They have a 24 phone line.

They return same day calls.

Nurses rotate taking calls all day.

 

I was told twice by the D.E. “You have a Type 1 two year old. You are a priority. If you need to speak to someone regarding a high or low episode you tell them… I have a two year old. You will be made a priority.”

 

I was also told by the D.E. “If you ever- talk to someone on the phone who comes off as rude you ask to speak to their direct supervisor. You are dealing with a Children’s Hospital. You have a child with an illness. You deserve excellent care.”

 

So. At the moment. For right now. Despite the drive. I’m sold.

 

Oh… and they have a pretty awesome Fire truck in the waiting room which kept Saul entertained for hours… literally. So I think he's sold as well.

I'll leave you with a few documented photos of our adventure!

 

Excited for a trip to the Aquarium!

 

 

Entertained everyone by his constant yelling of "Yee haw Froggy"

Mesmorized

 

 

Always my favorite part of visiting the Aquarium

 

Wanted to "get closer and closer and closer"

LOVED the sharks- his favorite

 

 

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Penguin watching

Coulda played with this thing for hours

Ackward. Eating tuna while at the aquarium?

We begged and pleaded... just come lay down and take a nap... he's saying... "let's go on an adventure!"

Swim time

This kid LOVES swimming and kept yelling "I'm a swim-teamer"

Saul and I had the entire pool to ourselves... and it was fabulous!

Pumped

Annnnddd.... then the next day... lol. He was actually in a great mood all day... just making faces here!

LOVED wearing the backpack... which was pretty adorable

 

 

He kept checking himself out in the reflection saying "I just like Dora"

 

 

He's two- and he knows all the routine... lol.. he seriously is a pro.

 

E2 Will always be easy to remember

This might just be my favorite pic of him from the whole trip

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He was so so so so so so good for HOURS... and HOURS as we met with all the different folks. I planned ahead and got 5 little "dollar store" gifts for him to un wrap through out the day... to try and keep him busy and "good" LOL... which he totally was

Ended the day with blood work at 4:15- He's just like EH and has to "watch" the entire process

Still smiling... still wearing that backpack... enjoying a "treat" for being so good after 7 and a half hours!

This was 2 minutes after I buckled him in - wiped - out-