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......

Friday, November 11, 2011

What's been going on....

Well, it has been a while since I've blogged.... I've been a very busy girl.  Since my last entry in September, we participated in our first walk for diabetes.  Our team, Alyssa's Angels, raised about $2400!!  We are so grateful for all the people who donated and for all our family and friends that walked with us!!

A lot of things have changed around her since I went back to work.  I can tell you that my husband has really stepped up and helped me around here.   Outside of the classes I have at the college, I also am taking 2 online classes.  So, much of my time at home is spent studying and doing homework.  He's cooked many dinners, kept Alyssa when she was home sick and taken the kids to doctor appointments so I wouldn't have to leave work.  He's self-employed, so his schedule is much more flexible.  The kids have also had to do a lot more.  I created a spread sheet with the monthly schedule and chores.  My oldest has saved me several times when I wasn't sure I'd get to after school care to pick up Alyssa in glad he can drive!!  Trust me, he's super safe now that he's had a car wreck and had a deer hit him!

We had a little break!!  Hubby and I took a trip to Key West and Alyssa spent several days between her 2 grandma's.  The grandmas did a great job taking care of her!!  It was a nice break for us and I'm sure for Alyssa too.  The poor thing never gets to spend the night away from home....

Back to reality......Alyssa has adjusted well to our new busy schedule.  Right now my schedule consists of morning classes and working 32 hours a week at a medical office.  Everything has been going along smoothly until we had a battle with a cold last week that threw her sugar off the charts!  Just when you think you have a handle on this disease, it throws you something else.  She made it through only 1 whole day of school last week, came home early Monday of this week with a level near 400, but thankfully she's been well since Monday afternoon! 

Alyssa has been taking gymnastics once a week for the last 2 months, but beginning next week we are going to add a private lesson as well.  She is really enjoying it and learning so much!  Because her glucose levels are so sensitive to activity, we check levels and give a snack to cover what she'll burn during the class.  Then re-check after class.

The clinic I work at is an integrative health practice.  I have learned so much about the holistic approach and I am currently researching the effects of chromium on diabetes.  What I have found so far is that it is an insulin potentiator, so it makes the body's own insulin production go further.  I'm still researching.... 

Thursday, September 22, 2011

Strep Throat & Diabetes

So, Alyssa woke up this morning with a fever and sore throat!  She has had sniffles for the last few days, but so has everyone in my house.  I was hoping it was just allergies, but when my hubby took her to the pediatrician this morning they gave her a strep test and it came back positive.  So, now she will be taking amoxicillin for the next 10 days and out of school until Monday.  My oldest son also had a sore throat and stayed home from school, so their doctor went ahead and prescribed him an antibiotic as well and suggested he stay out of school until Monday too.  At least he can stay with her tomorrow while I am at school. 

Catching a cold or the flu is no fun, but it can be even worse if you have type 1 diabetes.  Some over-the-counter cold treatments contain sugar, which can make blood sugar levels higher.  Also, dehydration, fever, and nausea can cause blood sugars to rise and for ketones to be released.  Colds can lead to pneumonia and other serious health problems.  People with diabetes are three times more likely to suffer from these conditions than non-diabetics. 
This afternoon, she said she felt shaky as if her bgl were low.  But when we checked her levels it was 134??  And when I checked her temp, it was 102.  It was close to dinner, so I had her try to eat.  I’m always concerned when she isn't feeling well that her levels will drop, but it always tends to run a little higher.  Crazy! 

Anyway, she had some children’s ibuprophen and her first dose of amoxicillin and was able to eat a bowl of chicken noodle soup and some orange slices.  Thankfully her fever is down for the moment…..keeping my fingers crossed!    

Saturday, September 17, 2011

Mom Going Back to Work: Afterschool and Diabetes

So we are in the 3rd week of school.  Alyssa has adjusted well to her school schedule.  I recently started working part time in the afternoons, so she has also started going to after school care for the first time in her life.  The great thing is that one of the diabetes care managers at her school is also the director of the after school program.   

Alyssa also started cheer & tumble.  I’ve made sure I check her sugar and give her a snack before the class so that her levels stay balanced.  We’ve have 2 classes and she hasn’t gone low either time.  When she was first diagnosed, she was in the middle of basketball season and even with snacks beforehand, she still ended up going low.  We ended up giving her 2-3 snack during 1 practice.   I think it was the honeymoon period, so now she’s a little more leveled off.

I had a project this week that had to be on a medical specialty.  Of course I chose Pediatric Diabetes.  I am not one that enjoys talking in front of a class, but it was a little easier because it was a topic that was so important to me.

We are just 22 days away from our first JDRF walk.  If you have donated I want to thank you from the bottom of my heart.  More than 13,000 children are diagnosed with Type 1 every year and it is important that we find a cure!  We’ve risen just over $400 through the internet in Alyssa honor.  We feel so blessed that so many people love our baby girl!  We also have more than 20 walkers signed up to walk with us!  It’s very emotional for me to think about our friends and family that are willing to take a stand against this disease and support the research that will lead to a cure.  I love you guys!!

I’m working on T-shirts for Alyssa’s Angels!  I’ll post pictures once I get the final draft!  So, my life’s a bit crazy right now, but I am excited about everything that is going on!

Tuesday, August 30, 2011

English Writing Paper: Juvenile Diabetes Journey

As you know, in addition to being a full time mother, I am also a full time student.  I wanted to share a paper I am working on for my English Writing class.  Most of the details you already know, but this paper goes a little more in depth.  Alyssa's first few days of school have gone off with out a hitch!  I'm looking forward to us both having a great school year!

Juvenile Diabetes Journey
My daughter came into this world fighting on June 15, 2003.  She was born five weeks early and because of that, her lungs were not fully developed.  She spent the first two weeks of her life in the NICU connected to tubes and wires that supplied her with oxygen and nutrition.  My heart was breaking as I watched her lay in a dome covered bassinet, knowing I couldn’t hold or touch her.  When I asked if she was going to make it, I was told by the doctors that it was in God’s hands.  So I prayed!  And fortunately, my prayers were answered.  She was born a fighter and to the amazement of all the NICU doctors and nurses, was soon able to come home.
As soon as Alyssa could move, she followed her two older brothers around.  She wanted to be with them, do what they did, and be just like them.  One time, at the age of two, she pulled off her shirt wanting to join in with their basketball game.  I had to remind her that she was a little girl.  Although she had a bumpy start to her life, she was a healthy, beautiful, rough, and tough little girl. 
A few months before she was to start kindergarten, she was jumping on a trampoline with her brothers and broke her leg.  She didn’t break it by falling off of the trampoline, but by landing on her own leg.  When she was in the first grade, she slammed her fingers in a cabinet and broke two of her fingers.  Most recently, this summer she fell off of her bike and broke both bones in her arm.  There has not been a cast that has been able to her down.  She always has somehow overcome what life has thrown at her.
In late October of 2010, Alyssa started wetting the bed. I honestly thought it was just a stage she was going through, even though she had never had a problem since potty training.   In all reality, this girl always played hard and crashed with exhaustion at the end of the day, so I assumed she was just tired and sleeping through it. She also seemed to be getting taller and with that, she seemed to be thinning. She was already petite, but seemed to be losing her full, baby cheeks.  In early December I started to notice Alyssa's appetite had decreased, but she always seemed to be thirsty.   By Christmas, Alyssa was drinking anything she could get her hands on.
Two days after Christmas, I took her to her pediatrician. They checked her glucose levels and her urine for ketones and immediately directed us to the emergency room. It all happened so fast and that was the first time I heard the words Juvenile Diabetes.
In the emergency room, Alyssa’s eyes filled with tears as she asked me, “Mommy, do I have to sleep here?”  It was a painful question to answer.  She was terrified and confused and I felt helpless.  I would’ve taken it from her if I could.
Alyssa was admitted into UNC Children’s Hospital and honestly the next four days are all a blur.  Her father and I were bombarded with information on diet and nutrition, blood glucose levels, meters, insulin injections.  We spoke to countless doctors, nurses, nutritionists, and diabetes counselors.  We were given stacks of pamphlets, brochures, and diabetes cookbooks.  I felt as if I was in a whirlwind.  I wasn’t sure if I could handle this.
Juvenile Diabetes, also known as Type 1 Diabetes, affects children and is normally onset at a very young age.  It’s a condition where your pancreas no longer produces any or very little insulin, a hormone that allows glucose to enter the cells and produce energy that you need to survive.
As parents, it’s our instinct from the moment our kids are born to protect them from any harm.  How could I do this when she was going to have to take four injections of insulin a day and have her fingers pricked six or more times a day?  Everything she consumes will have to be measured and calculated.  She would have the potential of heart and kidney disease, amputations, blindness, and early death.
I do remember the first night that we spent in the hospital.  My sons are both teenagers, so they were old enough to stay at home overnight alone.  Both I and my husband chose to stay in the hospital with Alyssa.  On our way up to her room, we passed other children’s rooms that were all decorated for Christmas.  On one of the doors was a sign that read, All I want for Christmas is to go home.  I couldn’t help but look into the room and it was apparent, at two days after Christmas, that this poor little boy’s Christmas wish didn’t come true. 
After Alyssa drifted off to sleep that night, my husband and I sat on the cot processing the day’s events.  It was as if we were reading the other’s minds.  We had both seen the same little boy, both had seen the sign on his door, and both said at the same time, “This could be worse.”  Our child had a disease that was manageable, although it wasn’t going to be easy, she could live with it.  And she was going to come home.  There were so many children in that hospital that would never see their homes again.
While we were in the hospital, Alyssa was given a little blue back pack that had a few things to help her adjust to her new life with Juvenile Diabetes.  It was called the Bag of Hope and inside was a children’s book with stories about a bear that had diabetes.  It included educational materials and DVD’s that we could read and watch at home. Also inside was Rufus the bear, a cuddly brown, stuffed animal that also had diabetes and was the main character in the book.  He was wearing a medical alert bracelet, a JDRF (Juvenile Diabetes Research Foundation) t-shirt, and he had patches on the back of his arms, his thighs, and his stomach; which are some of the locations that insulin injections are given.  Rufus the bear was a huge comfort to Alyssa.  She carried him with us around the hospital and he slept with her every night. 
When we came home from the hospital, I contacted Alyssa’s school because I was not sure what the protocol was for students that had diabetes.  The principal was very helpful and we set up an appointment to meet with her, the school nurse, and Alyssa’s teacher.  The process of her returning to school moved smoothly, as there were two other students in her school that also had diabetes.  Her teacher was trained and jumped right into monitoring Alyssa’s care. 
One afternoon Alyssa came home from school and said that lots of her friends were asking about why she was having snacks and why she had to go to the office every day before lunch, so she asked her teacher if she could read her class the book about her bear Rufus.  Alyssa read the book to her class that day and the next day she took Rufus to school.  She had accepted her disease; she wasn’t trying to hide it, and even at the young age of seven, thought it was important to educate her classmates.  I told her that I was very proud of her.  She looked up at me and said, “Mommy, I’m still the same girl.  I just have diabetes.”  After she told me about her experience at school, I began doing research about JDRF. I truly believe that the care package that she received in the hospital that included Rufus influenced her immediate adjustment 
The JDRF organization has been such a huge help to me.  They have tons of resources for parents of diabetics, information about advances, and they are the largest contributor to diabetes research.  Through my investigation, I found that a cure for this disease is within reach, I believe we will see it in Alyssa’s lifetime.  I decided that I had to be proactive in a search for that cure and joined JDRF as an advocate.  We, as a family team, “Alyssa’s Angels”, will also be taking part in our first “Walk to a Cure” in October.
Alyssa rarely complains.  She continually amazes me and is a blessing to have in my life as a daily reminder of life, humility, and a positive attitude.  My life has changed tremendously since her diagnosis.  There is nothing more important to me than my family and this has brought us all closer.  And, hopefully one day there will be a cure for my baby as well as all the others that face this disease every day.  I feel confident that one day I will be able to say, “My daughter used to have diabetes.”      

Tuesday, August 23, 2011

Summer break is coming to an end......

Ok, so I think I have all of my ducks in a row….or either I’m just trying to make myself feel better~ which is very possible. I am at the beginning of my second week of the semester and I am finally thinking I’m comfortable in my schedule. Not sure what I was thinking when I signed on for 6 classes, but anyway…so far so good.

Its been kind of tough starting school before my kids summer break is over. I just have to say (again) that I have 2 amazing sons! They currently take turns each day so that one of them can always be at home to watch Alyssa while I am at school. They also take turns & help out by keeping her so that me & dad can go out to dinner at least once a week~ just him and I. Of course I check in often when I’m not home, but they are on it! I love you Phillip & Jamon and I am so very proud of you. Taking care of Alyssa’s diabetes is a huge responsibility and you do such a great job!

So this week is busy!! Phillip had his junior orientation last night… since he drives, this is the first one I didn’t attend. :( It was more of a social event for him. Jamon and Alyssa will meet their teachers this evening. Dad is taking J and I’m taking Alyssa. I read her teachers bio online and she has been with the school for 11 years and teaching many more years than that. I am hoping that somewhere in her teaching history, she has had some experience with diabetes. Tonight I will bring in the extra class supplies like tissues, hand sanitizer, and Clorox wipes along with Alyssa’s midmorning snacks, juices for lows, and sugar free jello for those surprise cupcake or cookie parties so she can at least have a treat. If I know in advance, I can plan her schedule and she can have the sweets, but at least we have a back up.

Tomorrow I have 2 classes and during my break I will be taking all of Alyssa’s diabetes supplies to school and meeting with the nurse along with the teacher to train her. Even if her teacher has experience with diabetes, every child is different. I love the nurse at her school, she is wonderful and I feel very comfortable. So far in her pack is all her medical paperwork, a copy of her 504 plan, emergency glucagon, insulin, syringes, glucose tablets, 2 meters, strips, lancets, finger pricker (lol), juice boxes, and log book. I think that’s everything….

Thursday, I am so excited to be going to the kick off captain’s luncheon for the JDRF walk that is coming up in October. This is my first walk with them and I’m looking forward to meeting the staff I’ve been working with over the phone and via email. Then tomorrow night is me and the hubby’s evening out! Hope everyone has a great rest of the week and for those that are starting school on Thursday, have a great 1st day back!

Tuesday, August 16, 2011

Diabetes in School

Since Alyssa was diagnosed after Christmas last year, this is really my first school year that I've had to prepare her diabetes supplies.  I can barely remember much more than being terrified to send her school nearly a week after she was released from the hospital. 

Just to add to my plate, my fall semester just started where I will be taking 6 classes.  Four will be at the college and 2 will be online.  Fortunately I was able to work out my schedule so that I can still be able to pick Alyssa up from school each day.

So, today I just ordered another pocket prodigy meter.  I have 2 already and then several others, but they are different kinds.  I would like for the school to have at least 2, one in the office and one that can be kept where ever Alyssa is.  So that will make it easier to be able to bring in the same strips for each meter. 

I faxed all of the forms Alyssa needs filled out for school by the physician yesterday, so I'm going to wait until tomorrow to call the school to be sure they have gotten Alyssa's plan from the endocrinologist.  Then I'll set up a time to speak with the "504" board.

Of course this has all been new to me, but the "504" information that I recieved from the school was very general and I was under the impression it was just a blanket, if you will, that states that anyone with a disability can recieve special care.  Well, after response from family and friends in addition to my own research, I have found that it really protects Alyssa in far many more ways.  It assures me that every staff member that has Alyssa in their care will be trained to know when/if Alyssa's glucose levels are high or low, it protects her health and education by allowing her to check and treat her levels at any time possible during class instead of having to go to the office, and many more things.  I feel much better about sending her to school next week!  She is ready....check out her note that was posted on her door... she needs a break from her brothers!

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.

Monday, August 1, 2011

Walk to a cure and weekend stuff

Wow!! So excited about everything going on in my life right now! Just registered our team “Alyssa’s Angels” for our first JDRF Walk to a Cure that will be held at Elon University in Burlington on October 8th. The response has been outstanding!!

My oldest son, Phillip is touring his first college today with one of my best girlfriends. I can hardly believe that he is a high school junior! I’m still struggling with the fact he just got his license!  My other son, Jamon will be starting the 8th grade at a new school this year!
I have 2 weeks left of my summer break and then I’ll be back to school for my 3rd semester!

We had a great weekend full of celebrations for family and friends~ diabetes showed its ugly head Friday night while we were at a pool party. Alyssa’s levels were perfect all day long, she ate a great dinner, had a lower dose of insulin because I knew she would be swimming (1 armed swimming because she’s still wearing a cast until Wednesday) and then came the dreaded words “I feel shaky.” Her glucose had dropped to 43, the lowest it has ever been. 4 oz of juice, checked in 15 minutes, up to 63, still shaky and now nauseous. Juice usually does the trick, so I think it was lower than the meter read. I gave her about 2-3 oz of Pepsi, checked blood in 10 minutes and back up in the 90’s…whew. Gave her 2 peanut butter crackers, nausea gone and back to the pool she went. Back home, checked again before bed, 300 :-/! What a roller coaster….I know it was the Pepsi, but I felt I had to get that sugar up quick! Glucose tabs tend to take too long; the juice brought it up, but not enough. Saturday was a good day and so was yesterday, I just have to get a handle on what amount of insulin she should get if I know she’s going to be over active. It’s just so difficult to judge?? Tonight she is going to vacation bible school and I am debating whether or not I will give her insulin with dinner, because I know my girl will be chasing all the boys around!

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.

Thursday, July 28, 2011

Snack time

Choosing snacks for Alyssa is an ever evolving task. Being a child with high energy, high metabolism, and who could previously eat anything she wanted-I had to become very creative. Her snacks need to be around 15g of carbohydrates, which does not include regular chocolate chip cookies (her favorite).

I always keep sugar free jello, sugar free popsicles and cheese sticks on hand, as they are low carb alternatives when Alyssa’s hungry between snacks or meals. She loves vanilla flavored yogurt and a serving of the light is 14g of carbs. All the little 100 calorie snack packs have somewhere between 14-17g of carbs and there are tons of varieties. It also gives her a chance to have those chocolate chip cookies in mini size. Sugar free jello pudding, ritz bits snack packs, gold fish snack packs and 4 to a pack of peanut butter crackers are all 15g of carbs or less to. If she experiences a low blood sugar, I usually give her a 4oz. juice box followed by a protein/carb snack of cheese and crackers or cheese and a few grapes. ). She has 3 snacks a day and who would want the same thing over and over? Therefore, I am always on the lookout for new snack ideas.

Counting Carbs...highs and lows

Juvenile Diabetes is a condition where the pancreas produces very little or no insulin which is the hormone needed for glucose to enter the cells and produce energy. If there is not enough insulin, glucose remains in the blood stream and can result in heart damage, kidney damage, vision problems, and skin problems--just to name a few of the major complications.

Alyssa's diabetes requires her to have 4 injections of insulin a day. With her 3 main meals, she has Novolog which is based on the amount of carbs she will eat with her meal and her current blood sugar. In the morning she also has an injection of Lantis, which is a long lasting insulin. Her 3 main meals consist of 45-60 grams of carbs and then she has 3 snacks (mid morning, mid afternoon, and before bed) that consist of 15 grams of carbs each. Her glucose levels are checked 4-6 times a day, poor little fingers; including in the middle of the night. The purpose of this diet plan is to keep her glucose levels between 100-180 (as she feels symptoms when she gets below 100).

I have found that her activity level majorly affects her levels. Alyssa is a very active little girl and it did take some time to get her adjusted. When she was first diagnosed, I thought our biggest ploblem would be to keep her sugar levels down, but in her case, with the insulin and her activity level, we stuggle with lows. Since she was diagnosed, working with her physician, we have had to adjust her insulin several times. Just when you think you're getting balanced, she starts having highs or lows...sometimes both in the same day.

Wednesday, July 27, 2011

My beautiful Alyssa

Alyssa came into the world fighting on June 15, 2003. She was born 5 weeks early and because her lungs were not fully developed, spent 10 days in the NICU. Alyssa is the youngest of 3 and the only girl. From the day should could get around, she has followed her older brothers around, wanting to do everything they do. At age 4, she broke her tibia on a trampoline, age 6 she broke her pinky slamming it in a drawer and most recently broke her arm after falling off of her bike. Countless bumps and bruises over the years.....she is one tough little girl!

In late October of 2010, Alyssa started wetting the bed. I honestly thought it was just a stage she was going through, even though she had never had a problem with it. In all reality, this girl always plays hard and crashes with exhaustion, so I assumed she was just sleeping through it. She also seemed to be getting taller and with that, she seemed to be thinning. She was already petite, but seemed to be losing her 'baby cheeks'. In early December I started to notice Alyssa's appetite had decreased, but she always seemed to be thirsty. By Christmas, Alyssa was drinking anything she could get her hands on.

2 days after Christmas, I took her to her pediatrician. They checked her glucose levels and her urine for keytones and immediately directed us to the emergency room. It all happened so fast! That was the first time I heard the words Juvenile Diabetes.