Wednesday, November 2, 2011

More Donations!

My heart can't thank those enough who have donated money to Laila for JDRF, it's amazing the generosity people have provided. More so than the money, the kind words fill my heart with love. Here are 2 more notes I received with donations, each one as special as the last.

Laila, Aunty Brandi is so proud of you! You are going to be the one to make a difference in your life nad most definitely someone else's. Your selflessness is God's light shining through you. Go get that cure!xoxoxo Love always, Aunty Brandi

Dear Laila, Please accept this towards your goal to help Diabetes Research. I pray for you all the time and I am so thrilled to see how well you constantly overcome the challenges you face. Please know you are surrounded by lots of people who love you and think you are AWESOME! Love you sweetie (From Ashley Krupnik)

Thanks to everyone's amazing support, Laila has already DOUBLED her original goal of $50, exceeding her newest goal of $100 for diabetes research!! We have decided to try and double that goal, setting our sights high at $200! In my eyes, Laila can do anything she sets her mind to, this included. Keep the donations coming, every dollar, hug, kind thought and prayer is appreciated.

Tuesday, November 1, 2011

November

November is Diabetes Awareness Month, and as a mother of a Type 1 diabetic, I hope people take time to educate themselves and spread the word! Every day I pray for a cure, and thank God for the health of my children. 


Laila just recently passed her 1 year anniversary of her diagnosis, and looking back, it seems like it's been a lifetime. We have come so far, yet we have a lifetime ahead of us. Each and every day is a learning experience, trials and tribulations will come and go, but diabetes will always be there. Always.


We have decided to help raise money for JDRF (Juvenile Diabetes Research Foundation) since we most likely won't be doing the diabetes walk this year. Laila and I figured a good starting goal would be $50, it's attainable, so she won't be disappointed if we don't meet it, yet it's sizable enough to feel like we truly tried and made an effort to donate. Instead of walking door-to-door, Laila has started dipping pretzels and selling them for $2.00 a dozen, donating half to JDRF and using the other half only to purchase more supplies. The response has already been overwhelming, and I've never been more proud of her! I have opened a paypal account for Laila for those who wish to donate that live out of state, and it has proved to be a great decision. The kind words and support of others are nothing short of amazing, and I can't thank them enough. I must admit, this one is my favorite:


Hi Joli & Laila,
I hope you are both having a fantastic week!


Last night, I saw the post from Joli about your goal of raising $50 for diabetes. I think this is an amazing thing you are doing, Laila. You are a very strong young lady. Diabetes runs in my family and I also had it during my pregnancy. It would mean the world to me if we could find a cure for it. We need more people like you! :)


Always know that you are a very strong gal and that you can do anything you want to do. Keep positive people in your life! And, always have a smile on your face because in the end, everything is going to be okay! You inspire me so I know that you have and will inspire others! :)


I know you wanted to raise $50. I have donated $33 via PayPal so you can reach your goal. GREAT JOB! Every little bit counts and know that you are making a difference! Go Get Em!


Your friend,
Heather :)


I'm pleased to report Laila has already met her initial goal, and has since decided to double her goal to $100!! We will be raising money for the entire month of November and Laila will personally take all of her donations down to the local American Diabetes Association office to give her offering to them. I look forward to being there with her.


Diabetes is not who Laila is, it doesn't define her or her dreams. It will not keep her from doing anything she wants to do, it will not create walls so high she cannot climb, or rivers so deep she cannot cross. With perseverance, anything is possible, and that little girl is full of it. And I couldn't be more proud.

Thursday, September 22, 2011

1 month pumping, 1 year diabetic

This month is very important to me, and to our family. It's hard to believe that just one month ago Laila received her Medtronic Insulin Pump in the mail, and one year ago she was diagnosed with diabetes. September is a very emotionally charged month for me, I can only imagine how Laila feels.

One year ago, Laila was thin, frail, and sick as can be. Spending 4 days at the hospital, I had no idea the changes that were in store for our family. Seeing my precious daughter in the pediatric intensive care unit broke my heart, shattered it into a million tiny pieces. I thought for sure life would never go on, it would never be the same, and our family was forever ruined. Her bright smile and perseverance has proven me wrong from day one, and she will never know how thankful and proud I am to have her as my daughter. We have made it this far, and we will continue to thrive, as long as we have each other.

Laila's Endocrinologist, Dr. Touger, has much more faith in me than I do. She has been pressing the pump issue to me for months, and this past month I finally agreed. I'm not sure if I was more nervous for Laila, or for myself. Diabetes is more than a 24/7 job, it consumes your life. Every breath I take, worry burdens my heart. I do more than just care for my daughter, I live through her.

Now that we are officially pumping, we headed in for our quarterly checkup. I am pleased to report Laila's A1C was 8.5, only up .2 since her last visit. I was told this is common when switching brands or insulin, or means of administration. Her average sugars are much lower than before, which is what we're aiming for. When we first started using the pump, finding placement was difficult, but we agreed her arms are best. Today, Dr. Touger pointed out Laila's arms look "full", which means we need to find alternative placement for her sites. We're going to try her stomach again, and the top of her butt. I know she's nervous, but she will be just fine.

I took a few photos of her today, and it's so hard to believe how much she's grown since last year. She's gained well over 10 pounds since her diagnosis, and a few inches, too.

Check out that pump in her back pocket!
She looks so grown up these days!
Waiting at the doctor's office!
Filling out the paperwork.
Milestones in our lives may have changed, but the love has not. We are so lucky to have each other, life wouldn't be the same if we didn't. Laila is incredibly strong, and her strength is admirable. So much at times, I wonder where she gets it. I'm proud to be her mom, I hope she's just as proud to be mine.

Friday, September 9, 2011

We Are Pumping!!

I do realize it has been 3 months since our last post, but a lot has been going on and things tend to get a bit hectic around here. But without further ado, I would like to take this opportunity to announce: "We Are Pumping!!" 


Sweet, sweet Laila finally decided it was time to make the switch. Lucky for her, the hospital was able to fit her in for pump training the week before school started. I'll admit, I may have actually been more nervous about it than she was, and I'm still not convinced it's the best thing for her. The moment I met her pump trainer, Allison, I was completely turned off. Her attitude gave me a sour taste in my mouth and it hasn't changed one bit. After a nearly 2 hour session, I went home with a stack of paperwork, a pump full of saline, and not a clue what to do next. Before I get to carried away, let me just start from the beginning and why I'm still so unsure.


Allison was late to our appointment, grouchy, and in a hurry. After walking me through the entire setup of our new Medtronic Insulin Pump, she took it from me to double check the numbers I entered. I expressed my feelings about the orders she had me enter, they are different than Laila's original orders, and I was concerned her sugars would be much higher than necessary. Allison explained she would have to just try it and if Laila's sugars are high, I would have to send them in, let them be reviewed, and wait for an answer. After learning this may take a week, I was even more disgruntled. When the time came to apply the mio to Laila's skin, Allison made me watch as she tried not once, not twice, but three times to attach the mio to Laila's stomach. After 3 failed attempts, I calmly let her know if she didn't remove her hands, we were leaving. She agreed to place the cannula on Laila's arm. Plenty of tears later, we left and went home to talk about our feelings. In the car ride home, Laila begged me to not take her to see Allison again, but just 3 days later, we had another appointment. 


With saline in the pump, we used it as though it were full of insulin, but continued her shots. Laila was so excited, thrilled with the idea of a more "normal" life- the opportunity to share in birthday parties, the ability to participate in playdates, the freedom that comes with a pump- that during her first week when she vomited and tested positive for Ketones, she was crushed. So was I. I read every website, pamphlet, handbook I could get my hands on, there was no reason it wasn't working. I called the hospital multiple times and Allison scolded me over and over, insisting I wasn't doing it correctly. After answering a series of questions, I finally was able to speak with someone from the Endocrinology staff, not just our pump adviser. Troubleshooting confirmed Laila is just too skinny to apply the pump to her stomach, and we replaced it on her arm. After a few more tries, we found a place that works perfectly.


I am happy to report Laila is doing amazing. When her pump arrived, so did a new meter. Lucky for us, the strips and lancets from her old meter work with the new meter, and it is not synced with her pump. Each time she checks her sugar, it beams it directly to her pump and beeps to let us know if she's out of her acceptable range. The wizard built into her pump is beyond amazing. It keeps track of her active insulin, each dose we give her, her most recent sugar readings and carbohydrate counts. 


Training the school nurse, family, and friends seems to prove to be one of the most difficult parts of this whole ordeal. Everyone learns differently, and explaining the process over and over can get confusing. Laila, however, seems to have it down better than anyone else. Nothing surprising about that statement, she's handing her diabetes very well. 


Though it was a little sketchy at first, I am beginning to believe this is truly the best thing for her. I will never know what she's going through, what her highs and lows feel like, and the pain she feels each time we have to change her site. What I do know is I will stop at nothing to protect her, heal her, and keep her close. 


I apologize for the delay in between posts, and I promise to have Laila posting again really soon. She misses her readers, and her fans.


All our love.

Thursday, June 23, 2011

Endo Visit

This is a post straight from the mom of a diabetic. There are days I literally can't take it anymore, and on those days, Laila sure finds ways to push my buttons. Today is one of those days.

I'm not quite sure what got into me when I scheduled today's Endocrinology Appointment at 9:00am. At the time, it must have sounded good. At 7:00am when I was forcing myself into the shower, it didn't sound nearly as fun. The drive to the hospital for her visit is nearly an hour, and that's on a good day with little traffic. I had to get myself, my husband, and three children up, dressed, fed, and out the door by 8:00am? Ha, not going to happen. Lucky for me, I had a friend coming over to drop my middle daughter, Kenadi, off at school. That left 4 of us to wrangle out the door, and by God, somehow, we made it on time.

The drive there was uneventful, but as soon as we set foot inside those doors, the devil's spawn let loose. Every visit is the same, the same staff, the same procedure, the same office...the same attitude problem. During the past week I made mention to Laila she would have to stand on a scale to be weighed, stand against a wall to have her height measured, and let them attach a blood-pressure cuff to her arm to check her vitals. She seemed fine with everything up until it was time to perform, then the flood gates opened to let loose the screams and tears. Embarrassing doesn't even begin to cover it. Having your diabetic child scream like you're removing an appendage when you're checking her sugar-something she does numerous times a day- is a little unsettling. My poor husband literally had to pick her up and stand her on the scale all the while she was screaming.

Once the check-in process was over and we met with the doctor, she snapped back to reality and into her normal sweet self. We discussed a pump, and how desperate she is to try one. It would be such a relief to only have to give her a "poke" once every 3 days, versus the 6-8 times a day she's receiving them now. We agreed to set up an appointment for a week from tomorrow to meet with a nurse and doctor, they intend to really get things moving for her. We don't have a set pump in mind, but they do, and they have chosen one they think will work best with her activities and lifestyle. As we were packing our things to leave, she said the two words every child-and adult-dreads hearing: blood work. Even better, the lab was just around the corner.

I sent my husband with Laila to the lab to get things started while I made our appointments for followup. By the time I made it down there, they finished the urine collection and were about to start the actual blood draw. Let me tell you what, I would have rather sand papered a wild cat's rear end than hold her still for that blood work! She kicked, screamed, cried, and clenched her arms shut so tight it took two of us to hold her down. I can't believe it! I apologized profusely, as any mother would, and walked out with a read face and a hand full of tissue.

I tried explaining to Laila in order to use an insulin pump she's going to have a needle put in her skin, about that size, once every 3 days. She didn't care. I told her she was a big girl, she said she wasn't. I promised her everything under the sun, she told me she didn't want me. She wanted daddy. My heart was broken, but my job was complete. Another trip to the Endo-check.

Tuesday, June 14, 2011

Swimming!

Sunday afternoon our family ventured down to Tucson. It's only an hour and a half away, but it was a nice change of scenery and a fun little getaway for all of us. I was nervous, to say the least, about traveling with Laila, but I knew we had each other to lean on. We triple checked her supply list and agreed we were more than prepared, and off we went.
Laila was thrilled to find our hotel had a pool, and surprised to see I brought floaties for her to use so she could swim all by herself! We had lunch in the car on the way there, but life with diabetes is forever a guessing game. She typically eats the same things when we have fast food, but there's always a variable in there-what snacks she had earlier in the day will affect how much she eats, her eyes can be bigger than her stomach! I knew exercise would bring her sugar down, but I also knew I couldn't send her to the pool low, so after getting dressed I had her check her sugar. Here's Laila to tell you all about it!

This is just me in my little bikini!
I was going to the pool with my mommy and my little brother.


I was getting my supplies together to check my sugar before I went into the cold water.

I was cleaning my finger so I can poke it. Then I can wipe it and then I can put it on my meter.

I was wiping it and then I squeezed it to put it on my purple meter.

I'm putting my blood on my meter so I can check my sugar before I go into the cold pool.
I check my sugar because if I'm low or high I'll feel shaky.

I'm pouting because my sugar was 59.
I was too low to go to the pool so I had to get some ice in a cup
and then put my apple juice in it and then drink it with a straw.
Then I shared my straw with my sister.

Oh I was in a floaty so I could go swimming!
The water was really deep so I could not try swimming without the floaty.

I was swimming away from my mommy! I had a lot of fun!
After all the swimming I had a good night's sleep. Thank you for reading my blog!

Love,
Laila Bug.

Wednesday, June 8, 2011

Diabetes Bracelet

When Laila was first diagnosed, the hospital gave her this really obnoxious looking necklace to wear stating "I HAVE DIABETES CHECK MY SUGAR BEFORE TREATING ME". I understand the usefulness of it, however, it was cheap. And tacky. Cheap and tacky don't mesh well with a 5 year old diva, so we had to change that. Lucky for me, she's not such a prima dona that I had to order the expensive bracelet that costs an arm and a leg, though for what it's worth, I'd pay any amount of money. Knowing she has identification on at all times for her diabetes is going to help me rest easier at night and make my days a lot less stressful. Knowing the case of an accident or separation, her diabetes will be identified before anyone treats her or gives her anything to eat or drink is a huge weight lifted off my shoulders. As a mother, I want to protect her from everything, all the time, even if I'm not with her. This is a step in the right direciton, it might not seem like I'm protecting her from much by buying her these little bracelets, but these bracelets could save her life one day.

Laila's package arrived in the mail, and she was very excited to open it! We ordered two colors, pink and purple, her favorites. Even though they're a size small, they're so loose on her slender little arms. Really brings me back to reality sometimes how small and fragile she still is. Fragile, maybe, but beautiful. And mine.


Laila's here to tell you a bit about her new bracelets! She's very excited, she even asked we take a few pictures!

<><> <><> <><>
This is my hot pink bracelet! It says DIABETIC on it. Can you see it?

See me taking a nap? I was really tired because I went to cheer today after lunch.
I had a great lunch. I had McDonalds!

I wear my purple and pink bracelets every single day.
Even at night in bed and in the shower.

See my purple and hot pink bracelets?
My purple one says DIABETIC and my hot pink one says DIABETIC.


These are my bracelets. They tell you that I have diabetes.
These are so you know that you have to check my sugar before you feed me
or give me any medicine.

Thank you for reading my blog!

Love, Laila Bug