Alyssa's Journey with Type 1 Diabetes





An outlet, a diary of sorts, a place for thoughts, a place to connect,
an expression of feelings about Juvenile Diabetes......



Showing posts with label family of diabetics. Show all posts
Showing posts with label family of diabetics. Show all posts

Wednesday, May 30, 2012

Math skills needed....

After dinner last night, Alyssa went in her room to work on a puzzle.  About an hour later, I went into check on her because she was too quiet and she was fast asleep in her bed....7:30p and way early for her?  I pricked her finger (she doesn't wake anymore) and the meter read 434...wth!!  recheck....413!  I calculated the carbs, she had eaten something she had eaten many times before and had gotten her insulin.  I woke her up and had her get in the shower while I made another injection.  Here is where math skills come in handy....

Oddly, Alyssa usually drops about 100 pts during the night...I'm not sure what crazy girl does in her sleep....but normally I try to make sure her levels are between 180-200 when she goes to bed.  Alyssa's correction rate is .5 units for every 50 over 150, but since her bedtime goal is around 200 and I wanted her to drop about 200 pts., I gave her 2.0 units.  Another problem, sometimes the insulin brings her down too quickly and she feels the affects of a low even if she is not (and if she doesn't eat as well).  So, I also gave her a 15 g carb snack.  I estimated with the insulin and the snack that she would wake up with a bg of about 150.  This morning....the meter read 136... pretty darn close!!

I'm not sure where this spike came from (I searched for evidence of a secret snack, but didn't find any??) I think its instinct to want to find the culprit, although there may not be a tangible one.  I mean really, there is no known cause for this disease so it's understandable that there is no known cause for occasional spikes or lows.   I try not to stress too much when situations like this happen, but its hard not to when your a control freak like me :-/

Thursday, January 5, 2012

We made it through the holidays!!

Happy New Year!!

Again, it's been a while since I blogged....

Alyssa was diagnosed just 3 days after Christmas in 2010.  Facing the holidays in November and December were pretty scary as this would be our first Thanksgiving and Christmas since her diagnosis.  I feared that we wouldn't be able to take part in all the holiday baking traditions we had in previous years.  Alyssa loves to help me bake so I began to search for recipes for our family's favorite holiday desserts where I could substitute out sugar.  We did make regular peppermint sugar cookies and yes Alyssa did have 1 here and there, but we adjusted her insulin.  She said it was totally worth it!!  Alyssa also loves chocolate pie, so I found a recipe for chocolate chess pie and substitute the 3 cups of sugar with Splenda.  A little sugar-free whipped topping made for a happy girl!

Santa was on board this year, and instead of filling her stocking with loads of candy, he opted for hair accessories, lip gloss, nail polish, bracelets, and coloring books.  She was ecstatic! And you know what??  She never once asked about where her candy was, even with her brothers who had chocolate and candy canes in theirs.  I do let Alyssa have sweets occasionally...everything in moderation.  I try to keep her diet as 'normal' as possible.  The time of day, her activity level, and bgl just determine the amount of insulin or if any is given.  Her endocrinologist assures me she is doing great, her A1C was 8 at our last visit (within range for someone her age) and she's growing so tall.  She has gained up to 59 lbs, which is a little on the low end, but like her Endo said, not many 8 year old's are on this strict of a diet.  In Sept. 2010, (pre-diabetes) she weighed 56 and then in October she weighed 52 (during our journey to find out why she was sick).  The day she went into the hospital she was down to 46lbs.  So, I think gaining 13lbs in the last year is pretty good.  Trust me, she eats ALL the time!  Her food is just healthier options, controlled carb intake, and very little sugar.

Looking back on December 28, 2010 I'm blown away by how different our lives are.  Honestly, at that time, I did not think I could handle this situation-- this illness that would change Alyssa's life forever.  But today, through education, research, support, and Alyssa's amazing endocrinology team, I feel optimistic for her future.  Those that know her, know she is a FIRE CRACKER and even though she drives me crazy at times :), she continues to amaze me with how she has learned to accept what life has dealt her.

Tuesday, August 9, 2011

Summer vacay & Getting ready for August 25th....ughhhh

Last Wednesday Alyssa got her cast off!  Yay!  We left for the beach Thursday morning and spent 4 fun filled days there.  The diabetes behaved for the most part while we were there.  She was extremely active, as you can imagine after having to wear a cast for 7 weeks and now finally able to jump in a pool.  Alyssa's glucose levels are very sensitive to activitiy, so we did have a couple of low's, but all in all it was a great time for her! 

I am a full-time student and classes start for me on August 15th.  So, this week I am trying to get all my ducks in a row as the following week the kids will be going back as well.  Today I opened up the care plan packet that I need to fill out for Alyssa's school.  When she was diagnosed we were half way through the year and the nurse walked me through the paperwork in her office, so I really do not recall all of this.  Plus I was a little overwhelmed at the time..... This whole "504 plan" is quite confusing.  I do understand that it means that no one with a disability can be excluded from participating in school and that accomodations have to be made for children with illnesses, handicaps, asthma, allegies and diabetes.  However I do not understand why I have to go in for a meeting with the "504 Board" so they can decide if she falls under the act!?!  She clearly is diabetic, and clearly needs to be able to check her glucose levels and have her insulin injections during school.


Friday, July 29, 2011

It takes a villiage

It takes a village….

I am so grateful that we have so many family and friends who support, care and love our children. It honestly takes a village to raise a child; this is even more important when you have a child with juvenile diabetes. Fortunately in our situation, family and friends want to be educated and want to be informed about Alyssa’s care.

The first people that need to be educated are the other children that live in the home. I have 2 amazing sons who have always looked out for their baby sister, well when she’s not getting on their nerves. But in all honesty, since she was diagnosed, they are on her like white on rice. We’ve trained them in a sense by letting them check her glucose levels, giving her injections, educating them on what she can eat and what to look for. They have also dealt really well with the changes that have had to be made around here; Splenda instead of sugar, diet drinks, no candy….and if they buy their own candy, they don’t eat it in front of her. And it’s not that she can never have candy, it just has to be monitored.

My mother and mother-in-law have also been a great help. It was about 5 months after her diagnosis before Alyssa spent the night away from home, which was a long time for her because she loved spending weekends with her grandmothers. It’s a huge responsibility and they have made it possible for me and my husband to get away, take a break, and know that our little girl is being well taken care of.

Our friends are the best! I’m hearing about research they’ve read about, food ideas and substitutes. They continuously ask about Alyssa and when we are all together they are genuinely curious about her care and want to take part in it.

Outside of the home, more than likely the first people that need to be educated are teachers and school staff as they are with your child several hours a day. We are very fortunate that Alyssa’s school has a wonderful, caring staff. I’ll have a post about diabetes and school soon as I prepare for Alyssa’s return to school next month.

All in all, the most important thing is for Alyssa to know that she is loved and that diabetes does not define who she is. She is still that smart, silly, busy little girl who just so happens to have a disease. Our family and friends have been a tremendous part in helping her recognize that.