I'm sure like many of you the signs started the same way. My little boy, at 21 months, could drink me under the table. If it was wet...he would drink it. He would steal my drink, his brother's drink, his babysitter's drink...it didn't matter. My little guy would cry and beg for drinks. Of course, the wetting soon followed. He needed to be changed more regularly and 2-3 times per night so that he didn't wake up soaking. I told myself that I would watch him just one more week to see if things improved before I took him to the doctor. Needless to say, diabetes doesn't go away.

My husband and I took our baby, Eli, to the doctor on Saturday, December 12th. The doctor spent literally two minutes with us. I explained what was going on and why I was concerned. The doctor said he was not losing weight and that he did not feel it was what I thought it was. He offered no alternative causes and said "to make you feel better we'll schedule a blood test for Monday". Sunday night Eli started vomiting. His father took him for a simple finger prick the next morning. Within two hours the results were in...a fasting blood glucose level of 600. We spent the remainder of the week at Children's Hospital in Pittsburgh (a fabulous hospital!) and were given a crash course as to how to care for our baby.

We've been home about three weeks now, but the questions are all the same...I don't get the food thing. They have us watching carbs, but also feeding certain portions of fruits, veggies, proteins, milk, etc. The schedule is hard, the injections easy (thank the Lord that he is going with the flow), the lows freak me out, the highs don't concern me as much as they probably should. The realization that this will be the rest of his life (and ours with him) is difficult. The facts are hard - that he can't yet tell me that he doesn't feel well, that we can't sleep through the night, that I'm angry at all of those parents that talk about fearing finding their kids dead in their beds in the morning (a thought that never occurred to me until I read their words) and on the list goes.

I know that there is no cure yet, but I am more than happy to have a healthy little boy while we move a step closer to its discovery. I know that there are many situations we have yet to face (ex. vacation, birthdays, school), but we are taking baby steps. I know that the risk of my other children developing diabetes is rare, but I still fear that it will happen. I know that someday he will ask me, "Why me", and that I won't ever really have an answer. I know that this "new normal" isn't yet comfortable, but that it will be.

I look forward to the support offered here and being able to learn from all of your experiences. I imagine we will begin to live more for each day as the focus is on just getting through it. Here's to my son, to finding a cure, to hope, family, support and loving life despite the diagnosis.

Views: 928

Comment by Helen Doolittle on January 3, 2010 at 9:00am
Hi Ashley, Wow, your blog really tugged at my heart! Diabetes is such an all consuming disease. I am type 1, which was just diagnosed in Aug.09. I was told about 3 years ago that I was type 2 and I just keep getting worse and the pills weren't working, so my doctor finally sent me to a Endo. I know I need to go on the pump, but it is scarey for me to think about. From what I have read, type 1 can be caused by a virus. I pray that a cure is found for this disease and I will pray for your son. It is hard enough as an adult to go through this(and menapause on top of that), but being a parent to a baby going through this, I just can't imagine. I know that he is very blessed to have parents like you that are so aware of what is going on with him and doing what you need to do. I hope to hear how he is progressing from time to time. Your positive attitude will get him through and he will enjoy a happy childhood despite this! Take care and God Bless!
Comment by Robyn on January 3, 2010 at 9:11am
I have HOPE for a cure. With parents like you, he will live a happy, healthy, wonderful life.
Hugs to you and your family....and a extra big one to your beautiful son. XO
Comment by Pauly on January 3, 2010 at 9:32am
Wow, God gave little Eli to you because he knew no one would love him like you. You are truly are his angel. We'll be all pulling for little Eli here. He sure looks like a happy little guy.. Please post again on how its going.....
Comment by Renata Pellino-Porter on January 3, 2010 at 12:34pm
The food thing right now is so you get used to portioning. It's also so they can correctly adjust his meds. It's easier when they know exactly the portions he is eating, and even though it doesn't feel like it, it's easier for you too. Once you have gone through this for a while, you will have more freedom with food choices/portions. My daughter was diagnosed at 3, it is hard. My son has gone through several diseases and now he is diabetic. When he was diagnosed, his words were "why does all this stuff keep happening to me." It quite frankly sucks. However, if you are strong and go with the flow and do your best to keep your attitude right...Eli will follow suit. It's a suck booty disease, but one he can live with and have a full life and accomplish any goal he chooses. You can do it...keep coming back and reading posts here....we are all in this together.
Renata
www.thediabeticduo.com
Comment by Gerri on January 3, 2010 at 1:20pm
Big hugs to precious Eli & his wonderful parents.

Being diagnosed T1 as an older adult, I can't begin to imagine the difficulty of managing a baby's needs. Parents of diabetic children get extra stars.

Plenty to be angry about & that's normal. Let it out! We all feel "why me?" "why my child?"

Tune out, as best you can, other people's fears & horror tales. Many uplifting stories here & support when you need it.

The food part will get far easier, I promise. Testing a lot will keep you informed how different foods effect Eli. I can't drink milk (& many people with diabetes can't) because the lactose sends me soaring. Cheese is very low carb & has minimal impact. Fruit & fruit juice is pure sugar, so I avoid them.

Take it one day at a time & please take good care of yourself while you're taking care of Eli & your other children.

Keep us posted.
Comment by Kathyann on January 3, 2010 at 1:42pm
I was diagnosed T1 3 months ago. I remember how overwhelming it all was, the carb counting, timing injections, watching for highs and lows. But 3 months later it is so much easier. And you will find that out too. It's very challenging with a child so young and I know his needs will keep changing as he goes but you will do great. I know you will.
Comment by Kathyann on January 3, 2010 at 1:43pm
meant to say grows not goes, sorry
Comment by Jessica05 on January 3, 2010 at 7:16pm
Hi, Ashley,
So sorry to hear of your son's diagnosis. It is so very hard in the beginning. My daughter was diagnosed at 15 months and I remember my husband and I being so overwhelmed, scared and grieved. There is a grieving process that's very normal...I still grieve at times three years later. Having a child diagnosed so young is a mixed blessing...it's hard for them to tell you when they're low, but you will soon learn the signs. Having a routine of when you check, and a routine for exercise, etc. helps. I've found my daughter accepts Diabetes easier and can't remember life before it, which is a blessing in one way.
People also told me their diabetic horror stories when Elisabeth was diagnosed and it was very upsetting. I had to realize that they were also grieving but that just because it happened to them didn't mean it had to happen to us.
Continue to take those baby steps and know that you will soon be counting carbs like a pro...one day your little fellow will also be telling you the carb content of his food! Please read our story and feel free to send us any questions. We're happy to help if we can. Know that it's going to get better day by day and it will soon become part of your life and routine.
Take care!
Jessica
Comment by Cary Brown on January 4, 2010 at 12:50am
Hi ashley. Your post gave me the chills. My boy was only dx. 1 yr ago and he was 6 then. I can't imagine how hard it must be for you....keep a positive outlook - he is going to be ok - you will be overwhelmed, but it soon becomes just part of your daily routine.

I know everyday is hard, but believe me, it does get easier. THe lows freak me out too and we too have only faced a few of the daily activities. I ask why all the time as well, but I am also thankful it is nothing worse and he can go on as a healthy child as long as he takes care of himself. JOey is on a carb diet too, maybe we can share some meal and snack ideas!! Joey was drinking 1 gal of milk every two days prior to his dx. - now he is lucky to get 1 cup a day - be careful with the milk - it has a lot of surger. That was hard for me to steer from at first, but he gets plenty of dairy from cheese and yogurt I think (he is growing like he does!!)

Each day is a learning experience. I just joined this group and have already received much support and good advice. Keep your heads up - it is going to be OK.

keep your head up and give your little trooper a hug.
Comment by Maria Moyer on January 4, 2010 at 3:06pm
Ashley,

I felt like I was reading a post about myself and my daughter. My daughter was diagnosed September 23, 2009, she turned 2 on November 16. When I called her pediatrician they basically blew me off, to the point that I felt like I was overreacting, so I switched doctors...and the rest is history (we goto Children's Hospital in Pittsburgh as well!). I want you to keep your head up but I know that it's not always possible. As soon as Gabby was diagnosed I went into "crisis" mode, her dad and my mom were both with me, but they both broke down, so I was there to stay strong. I stayed in the hospital with her the whole time and when we were discharged I immediately started getting organized, making a binder for both sets of her grandparents (they watch her while I work and they were all able to attend the education classes at the hospital), getting involved in groups, reasearching, advocating, etc. Then I went to a wedding in Denver at the end of November, I had already committed to being a bridesmaid and it was a good college friend. When I came back from that trip, I was a disaster. It has taken me until about now to "get back on the horse" so to speak and feel back to normal. It was as though I just went along and did everything, but after I got a break from the sticks and pricks and blood and counting...I digressed and began mourning and became angry and I think felt everything that everyone else felt at first...plus I had a couple months of pent up emotions. My point of telling that story is, sometimes it will feel hopeless and sometimes it will feel like you can find the cure yourself, but as long as you have and continue to seek love and support, we will ALWAYS have hope! Please feel free to contact me anytime!

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