Friday, October 15, 2010

Will This Ever End?

I was looking at the Parker Rec online schedule to see what time Baby's Kids Kulture class starts tomorrow.  It's a free once a month thing for littles but you do have to register.  I'd signed up for them but wanted to double check the time.

It says I have a class that has already started.  Made no sense to me since her swim lessons didn't start again until Monday.  They've always been two weeks on, one week off, two weeks on etc.  You have to sign up for the next class a week out and you don't know what level your kid is going to need to sign up for until the end.  That gives you a couple days to sign up for the next session.  Makes sense right?

And I'd signed her up to repeat Minnow because at the end of the first week of her private lessons her teacher told me that Minnow would be cake but she'd struggle with Shark because she needed to work on her endurance.  The fact that she'd had an ear infection and was fighting a cold wasn't helping so I just went with the Minnow - and the timing worked with my UI checks and I have to budget in that way.  Made things tight then but I got help from an outside source and was able to make it.  Even managed to get a haircut before my interview so felt better about myself.

Back to the already started class.  Yep, it was her swimming class.  My screw up because I wasn't looking at a calendar and just signed her up not noticing that THERE WAS NO WEEK OFF BETWEEN CLASSES!   Yeah I just paid for a week of classes she didn't get to take.  Oh and there isn't a week off after this either so I have to get her signed up for the next session this weekend.

I hate feeling like such a screw up!

Oh and while I've been very proud of Baby's choices lately (wanting the plain apple slices instead of the candy/carmel apple) I'm getting concerned because it's becoming a fight to get her to eat breakfast and she's started talking about CALORIES!  At first I thought it was just a word she'd picked up off of hearing an adult conversation but when she was looking at the nutrition box on her cereal (mini wheats - I like them for the high fiber count and they help her poop) and pointed out the calorie information to me along with telling me the number I knew it was much more. 

I know that if she actually does develop Type 1 diabetes she's going to have to count carbs for the rest of her life but I don't talk calories with her.  I talk healthy foods and treats and that treats aren't had every day.  She still has halloween candy from last year for pete's sake!

Sunday, October 10, 2010

Thanks for all the comments!

To be clear the genetic component is the one part that I don't have a lot of guilt about - except for obviously my choice in sexual partner - because I know she didn't get the gene from me.  I don't have it and no one in my family going back at least 3 generations has ever been diagnosed with Type 1.  Type 2 yes on my dad's side.

It's more along the lines of the TEDDY study.  Trying to figure out what triggered the genes to act up in the first place.   Something in her environment caused her body to go into overdrive and start fighting itself.   When she started out (no antibodies acting up) her chances were only 14%.  1 in 7 with the gene actually develop the disease in their lifetime.  With the first antibody her chances rose.  The latest testing was more extensive so we know that her odds are now greater then 50% and within the next 5 years.

So what was it that I did, didn't do etc that other parents didn't do and did that made the difference?  And what can I do that will put the odds back in her favor?

She's not on any medications yet as she actually has a functioning pancreas now but they were talking about the possibility of putting her on oral glucose as part of a trial (which means she could have the placebo) to see if it will help prevent the disease.  Her next TEDDY appointment is in two weeks so hopefully I'll have a lot more answers then.  I'm going to call the doctor tomorrow (or Tuesday since I don't know about office hours with the holiday) to see if I can get answers sooner.

I still have to test her blood sugar a couple times a month (daily if she's sick) and she'll have another glucose tolerance test in 6 months.

Saturday, October 9, 2010

A Mother's Guilt

I know it's not true.  Or rather I think it's not true.

But I can't help but feel that I am in some way responsible.  There had to be something I could have done, should have done, need to do now that would stop all this.

I just wish I knew what it was.

Friday, October 8, 2010


Got the results from the glucose tolerance test and other tests from TrialNet - the other study that came in after she tested positive for a second antibody.  It didn't mention the other genetic testing they were supposed to be doing and, of course, it's after 5 on Friday so can't call them to ask about it.  

I did get the glucose numbers, which were all fine, and the results of the FOUR antibodies they tested her for (TEDDY only does 3) and she tested positive for 3 of the 4.

The end result?

She has a greater then 50% chance of developing diabetes in the next 5 years.

Sucks rotten eggs.

Friday, September 10, 2010

We survived

Actually got there early because I was concerned about a traffic report I was hearing so took the toll road up to Colfax.  Yeah, 1/2 an hour early.

But they had people there already so didn't have to wait long and they started early.  Did the whole weighing (42.2 lbs) and measuring (41.5 - with flipflops so I'm calling it 41 even), blood pressure and temperature stuff.

Then they took us to our own private little room where they put the cream on her arms and plugged in the first dvd (the Squeakquel followed by the Princess and the Frog and then DragonTales episodes at the end) to start watching.  They also took her order for breakfast (scrambled egg, bacon, banana and milk).  Yep, when she was done they fed her breakfast instead of just shoving her out the door like I remember happening.

When they came to put in the iv contraption I told them that she doesn't like distractions (blowing bubbles etc) and in fact likes to watch.  The nurse laughed and said "we've heard about her" and the other nurse that came in to help hold her arm just started unwrapping stuff.  I admit I was proud to hear that she had a positive rep that extended over to the hospital.  While this was happening we started getting a lot of visitors.

The lady from Trialnet (the prevention study) came to go over the paperwork and releases and I got to sign and initial a bunch of stuff.  The lady from TEDDY also came in and both made their requests for blood.  It was funny watching them all stand there in amazement (new TEDDY lady) while Miranda just put her arm up on the arm of the chair and they stuck her.  They started sharing horror stories (including the boy who freaked AFTER all the needles were stuck and he'd drunk the sugar liquid - in other words after all the hard stuff was done)

Fasting blood was 82 and they took about 55ccs of blood then.  A short while later they came back and took the first blood samples for the glucose (they wait for the child to calm after the initial stick before starting) and asked Baby what flavor she'd like to drink (lemon-lime).  They came back with that and she was given 5 minutes to drink it but it didn't take her that long.  Another set of blood samples (3 each time - small stick tubes) was taken and then again every half hour for the next two hours. (After 2 hours was 121)

During that time TEDDY came back (A1C results were 5.0) and had me do some of the questions they ask every time and then gave us a meter, test strips, lancets and ketone strips.  They had me do it on myself, another nurse (who is a diabetic - got to ask her some questions about the pump) and then test Baby but two attempts on her didn't get me enough blood for a valid test.  They were satisfied that I knew what to do anyway so it's all cool.  I'm supposed to test her a couple times a month and every day if she's sick.  I'm also supposed to use the ketone strips if she's sick and especially if she vomits.  They also gave me a beginning book on diabetes so I'd have more information, phone numbers for questions, phone numbers for use if her numbers are high on a weekend or at night etc.

I'll get two separate sets of results.  One in 3-5 weeks and the other in 4-6 weeks but I forgot which was which.  TEDDY will be their standard antibody test and the Trialnet will give me the full sugar results and I'll hear about some gene markers they are testing for which should give me a better idea of risk.

Friday, September 3, 2010

Still Melting Down

Got the actual paper/letter with the results today.  Not only did she get the second positive but her numbers jumped up again on the other one.

I get my last UI check in two weeks and it's only for one week.  I qualify for state extended benefits but will only get that if the federal government does another extension that goes through the end of this month.  At least.

So I'm desperate for a job with good pay and great insurance AND the flexibility I'll need for her testing etc.

Wednesday, September 1, 2010

Got to talk to the doctor.  Finally.  (Part of the whole communication fiasco).  She basically reiterated everything I got from the nurse yesterday.  May have screwed up though because she asked me if the father had been treated there and what his name was and I told her.  It didn't dawn on me until I hung up that if he was treated there then she would know his parents etc and I may have let a cat out of the bag.  Hopefully doctor/patient confidentiality will cover me.

On a side note if I read the paperwork correctly (they emailed me a copy besides the set they are mailing) then as long as she is showing 2 positive antibodies then she'll have to do the glucose tolerance test every six months.  What ever job I find better have some flexibility built in if I'm going to have continue to deal with this. 

Tuesday, August 31, 2010

The doc called about the results of Baby's last TEDDY tests.  Not quite that simple because of course there had to be some communication issues but the long and short of it is that Baby now has 2 out of the 3 antibodies showing up.

She has a 50/50 chance of developing Type 1 diabetes.

Again the positives of being here in Denver raise their head because:

They want to schedule a glucose tolerance test for her.  At Children's.  They will put in an IV so they won't have to stick her ALL SIX TIMES (because they do a -10, 0, after drinking and each hour for the next 3 hours) and she'll get to watch movies and play video games but it will be fasting so of course it will be fun.  But it's free.

They will also be giving me a meter, strips, etc (free) so that I can test her blood sugar when ever I feel like her behavior is off.  I started laughing hysterically because her behavior has been "off" for some time now.

She will also be entered into a prevention study involving oral insulin.  Of course she could get the placebo but . . .

Sunday, August 1, 2010

Quietly Having a Meltdown

Glucose tolerance test set for the 10th.  She'll have to miss a swimming lesson AND I better not have a job starting before then.  No, they won't do it on a Saturday.  Seriously.  Do they really think that everyone can just drop everything?  If I were working there'd be no way I could take her.

I'm also mad about the swimming lesson because I know she loves it.

I was wrong about the timing - it's -10, 0, after drinking and then every half hour so will only take two hours and I can get her in at 7:30 (early morning!) so she won't have to go too long without eating.

Besides the sugar they will do another A1C, antibody testing (pray for low numbers!) and test her for another gene that could be protective.  Hopefully I have it and she'll get it from me!

Won't get results for 4-6 weeks though.  Just in time for her next TEDDY appointment at the end of October it seems.

Saturday, July 24, 2010

Just got back from Baby's quarterly TEDDY appointment.  RG was 131 (half and hour to an hour after finishing a cup of orange juice) and A1C was 5.1  Looking good!  They told me that since she is positive for the one antibody she'll have to continue doing the quarterly draws even though normally she'd drop to twice a year once she turned 4.

This served to remind me why I don't want to move from the area.  I start thinking that maybe I'd have a better time finding a job if I were willing to move.  And then . . . well if we moved she'd no longer have the free monitoring of her blood sugar AND her connection to the Barbara Davis Center for Juvenile Diabetes.  Right now she's got it made in the shade should she end up developing diabetes.  Immediate access to all the latest research, products and support systems.  We move and it's all gone.

Saturday, January 23, 2010


Baby was a rock star as usual.  Played quietly while I talked to the researcher and went over her 3 day diet record.  The researcher (RN) kept saying she was so "sweet", "cute", and that she wanted to "eat her up".  It started when I was helping Baby put her shoes back on after her weight and height were checked.  Baby told me she loved me and the RN was floored.  LOL. 

Speaking of measurements, she was 38.5 inches and 35 lbs.  Glucose was 110 and A1C was 4.8.  Beautiful numbers.