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.