Team Party Time Again

 

Last night I received a mass-email from E’s soccer coach. He was telling us that he got coupons for free pizza from that same nightmare pizza place I spoke about before. Most teams locally have their party there because they give free pizza/drinks.

I was torn about whether or not I tell the coach our big schpeal about why we won’t step foot there or if I should just not tell E about the party and call in sick at the last-minute. I decided to do a little schpeal.

I emailed him and said that I thought the idea of a team party was great, and that I didn’t like to be the party-pooper but that we’d had personal issues with the owner of this particular joint and would not be going into her restaurant again. I also told him that we normally don’t go to pizza places due to my other son’s celiac disease and need to be on a gluten-free diet. I told him that RedBrick has a great gluten-free option and that was really the only place we went for pizza (our first team-meetup happened to be at RedBrick without me even suggesting it).

Today, I received another mass-email from the coach to the team asking if Tuesday at 6:30 would work for everyone and stating that we were planning on moving the party back to RedBrick since that’s where our team began anyways.

I sent him a thank you and told him we’d definitely be there. It’s crazy how just a little accommodating gesture can make you feel so good. That and the fact that I took 7 other families out of that crazy bitch’s restaurant!! Score 2 for me!

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highs, lows and nights

Highs, lows and nights.  I hate ’em all.  I also hate making changes to C’s pump.  It’s just never simple.  I love when the doctor does it. 

This time, she was content with his numbers and only wanted to try to change his carb ratios slightly and one of his overnights.  I didn’t agree.  I thought his overnight change was too much and his daytimes definitely needed a change.  Anyways, night (12am-4am) went from 0.55/hr to .60/hr.  When I got home, I compromised and put it at .575/hr.

He woke up the next morning at 58.  I’d actually turned it DOWN to .55 from .575 about 2 weeks ago when he woke up at 45.  Needless to say he’s back at .55 but we need some normal nights to see if that’s even working.  Normal meaning I’m rested enough to actually wake up to my middle of the night alarms and check.  oops.

The other problem is he’s going really high around lunch time.  He was being sent home over 400 a few weeks ago, I made some changes and now he’s typically in the 200s.  I didn’t know what to do next because about 1/4 of the time, he’s low at the same times.  Doctor didn’t want to change either.  Ughhhh.  Soooo, I changed them again realizing I had the weekend to see if he went low or not.  So the breakdown is this.  Same night basal. First thing in the morning (4a-8a) it’s higher, mid-morning (8a-11a) is higher, lunch and dinner get more per carb.  I had my fingers crossed yesterday that he wouldn’t go too low, too many times.  I warned him to keep checking because he doesn’t feel many lows lately until they’re about 50.

We kept checking the last being 3pm and things were actually still highish, but nothing crazy.  5 pm he made some scrambled eggs for dinner and tested at 560.  HUH?!  Washed hands and tested 2 more times.  522 and 502.  Fuuuuuck.

Corrected (more than I’m ever comfortable giving), changed cartridge/site (was due for change anyways), retested in an hour, still over 400, corrected again.  Took shower, tested, corrected again.  At this point it’s coming up on bedtime and I told him, “I gave you an awful lot of insulin.  I’m afraid you might go low tonight, want to sleep in my room?”  He didn’t…  So I told him to double-check there was juice on his nightstand and remember to use his doorbell  (which has only been used once) if needed and set lots and lots of alarms hoping at least a couple might get me up.

About a minute later, E runs in very excited and says, “I get to sleep in C’s room tonight!” and runs out.  I wonder if C actually thought it out and decided he was safest having someone with him or if he invited him subconsciously.  Either way, if he doesn’t want to stay in mom’s room, I’m glad he’s got someone to keep him feeling more comfortable.

D-Sib Day

Well, Alexis and Sherry have proclaimed today to be Siblings of Diabetes Day.  I figured I’d write about E, but have been so busy it hasn’t gotten done.  I’ve hardly even been on a computer.  Good thing is, it hasn’t been because of diabetes.  I’ve been working, playing with the kids, eating Thanksgiving dinner, going out, you know… living?

Anyways, it’s today and it’s 10:30am right now.  My little E is still snoozing.  In  MY bed.  I cleaned up his mess that he’s scattered all over my living room this morning while he was nice and cozy.  I guess I’ll call that his special treatment today?  Poor kid.  Honestly, we don’t celebrate much around here though.  There’s too much always going on to add in any extra.  We celebrate Christmas, but everything else is pretty minimal.

My sweetie really is, just like most siblings thrown into this life, an amazing supporter of his brother.  He makes it near impossible for C to feel alone.  E loves to test.  Under 100?  You’d better believe he’s going to call it low and demand some candy…  E always checks to be sure foods are gluten-free.  There are a few things in our house that aren’t.  If E has those, he’s always sure to eat on a placemat on the far end of the bar to make sure crumbs are kept under control.  He likes to know how many carbs he’s eating.  Sometimes I realize he also suffers from ‘diabetes-brain’ when he notices things that remind him of a test strip, or a blue circle, or a glucose tab, or mentions what number he thinks a lancet would have to be on if his little cousin had to test

On the trampoline, when suddenly C lays down and can’t get off, E’s extra loud voice is heard screaming for me as he runs inside to get a juice box.  E has a pack on his bike that he keeps a roll of glucose tabs in just in case.

After our pump trainer left last January, E was the first to get excited enough to stick an infusion set on (not inject though) and wear that pump for the next hour or so.  E tells everyone he meets about diabetes and celiac disease.  Like everyone else’s ‘other’ children, he knows all the science, real words and possibly every fact that I know about them both and always surprises people with his knowledge.  It warms and breaks my heart at the same time.  Sometimes, when C wants to go somewhere without me, I feel fine about it as long as E is there.  I know that in an emergency E would know exactly what to do or how to explain the situation to someone who could help.

Because we’re a part of a local group that tries to get together monthly and most of the kids are much younger than C, E actually has a number of good friends living with diabetes as well.  Some have it themselves, some have a sibling with it and some have a parent with it.  It’s all very normal to him.

No, we’re not going to do much celebrating, but E is always told how proud I am of him being so supportive.  C is often reminded how lucky he is to have E on his side and even though it’s not that often that he shows it, I know he’s thankful for him.

Extra Attention

Do you participate in TrialNet for your other family members?  We do.  Last year we went a few months after C was diagnosed so that E and I could get a blood draw checking for antibodies.  Checking to see if we are at an increased risk for developing diabetes.  Last year we were both negative.  E, being a sibling, can go back every year until he’s 18 to be retested.  E had really good memories of last year because it was the first time we’d heard of using numbing cream to do a blood draw.  Seriously, why don’t all labs do this? At least for kids that are fearful?  We drive about an hour and a half away to Children’s Hospital Los Angeles (CHLA).  They can send us orders to do in our normal lab and have them sent down.  Why do we do the drive?

E has a brother with two chronic illnesses.  Sometimes these illnesses get more attention than he does.  C is always being fussed over and checked on and talked about.  C always has doctor appointments and ‘important’ things to do.  Sometimes E needs to be fussed over, too.

We went on Tuesday after C’s appointment at UCLA.  We’d only be to the enormous CHLA one time before, used a map, and still got lost a few times.  This time, we had no time schedule and told them we didn’t need a map.  E’s reading now, so we let him check the signs for the “Tiger Elevators” which go to the endocrinology department at each intersection.  Every wing has a different animal.  When you get to the elevators, the carpeting will have that animal’s print and the wall across from the elevators is all framed pictures kids have drawn of that animal.  It’s really a fabulous place.

First we stopped at the aquarium to check out their fish.  Then we stopped at the play area to climb on the giant blocks.  There, a woman stopped and told E she was going to read a story if he’d like to hear.  His answer was that he just wanted to get his blood draw over with.  So she gave him a book to take home.

We found our way, got upstairs and went to check in.  I told the lady, “My son’s here for a blood draw for TrialNet” and another lady behind us goes, “Oh! That’s me! Hi E.”  Awesome.  He let her know he wanted numbing cream and got it done.  Afterwards, he got a TrialNet water bottle and TrialNet sunglasses.  We stopped at the McDonald’s (in the hospital) for ice cream sundaes.

So much better than headed to our plain old boring lab and ruining an experience.  He’s already excited about going back when he’s seven.

Here’s the poke he wanted me to document…

So, while in LA we were trying to figure out what to do.  What does E decide?  Well, we’d just watched LA Ink the week before where they had a new mural painted on their back wall.  The guy who did it was phenomenal and only used spray paint.  E was super impressed and asked if we could go see it.  So that’s what we did.  We just did a drive-by of the place, but got to see the back mural and cruised by the front (you always see the front in the show, they recognized it) and someone was walking in.  They were so excited that they could see a bunch of people in there were sure Kat was in there.  🙂  I tried to take pictures while driving by the back (safe, I know) but they came out blocked by the fence.

Here’s a picture of part of it I found online if you haven’t seen it… That’s spray paint.  Seriously.

preoccupation? obsession?

E is preoccupied with diabetes.  He does not have it himself, but it is obviously in his face all the time and he’s clearly soaking up everything.  He talks about it a lot and he has a lot of knowledge of it all.

The other night my cousin came over with her 2 1/2 year old.  My kids had never met them and they stayed for dinner.  In the middle of eating, out of nowhere, E says, “I bet if he had to test he’d only need the lancet on number 1.  Maybe 1 1/2.”

I told him he was probably right and we went on with dinner.  I don’t think it had hit me before that how deeply E has also been affected by everything.  Just like the rest of us, no matter what he’s doing, it’s always on his mind.

Pump Training

we just finished our training session with the lady from Animas.  I’m more excited than ever.  My mom joined in so she’s caught up on how it all works now. She was really impressed, too.  Every time I try to explain how fabulous it is, I don’t think she gets it.  I think she does now.  Anyway, E came out at the end and was checking everything out. Then he wanted to be a “diabetes kid” and try on the pump.  We stuck the  infusion set on him (didn’t inject it) and he cruised around with that thing like a champ!  What a good sport.  C couldn’t ask for a more supportive brother than the one he’s got.

Seriously?

Just got a call from C’s insurance.  They can’t authorize the pump until he sees a panel of Dr.s at UCLA and they make a determination as to whether or not they think he’s ready for a pump.  She also told me not to hold my breath because the last girl she sent to get authorization, they met with her and decided to wait and see her again in 3 months and make their decision at that point.  What??  Ok, whatever, I called UCLA to make the appt and they tell me the soonest they have is June.  I felt like I was in the Twilight Zone.  I’m told this morning we may not have to wait the full 6 months from diagnosis and a few hours later I’m told I’ll have to wait a year from diagnosis?  I about lost it.  But I knew who to call.  C’s lovely nurse.  She calmed me down instantly by telling me it was BS.  I did not need to go down there.  She told me the Dr. I need to talk to and fortunately he’ll be in the office (our normal office) tomorrow.  She told me she’ll talk to him an he has veto power.  I asked his name and just by chance, it happens to be the same Dr. that E has an appt with tomorrow morning.  When we were there for C today, I made an appt for E.  His regular pediatrician moved away, so I told them to schedule it with anyone.  What are the chances?  Well, I guess if you’re talking about my life, the chances are pretty good.  With as much negative that I have to find my way out of, it always seems to work out for me.  Everything in my life definitely happens for a reason.  Sometimes it’s just frustrating figuring out what the heck that reason is.