Our Latest longest journey. . . . .

I have always been confident that my mothering has been more than adequate to protect and nurture my children. I mean, I started with breastfeeding from day 1, am home with them, give them lots of opportunities to explore their surroundings, offer nutritious foods to help their bodies grow, read, play and all together love them . . . I would say that most parents do this . . . and yet - there are still situations and challenges that are completely out of our control. We've had lots of these little challenges along the way . . . Needless to say we love our girls and cannot imagine a world without them!

For the past several months we have battled eating and weight gain with our Willow. She has remained thin, and sometimes skeletal looking. We have tried lots of ways to get her to eat - and still remain on a somewhat healthy diet. So by late June early July when she was finishing most of her meals and eating well (with Willow standards) we were sure she was finally hitting that growth spurt to catch up with her height. 75% for height and 5% for weight at her 7 year old check up in march - weighing in at 40#.

But even with all the catch up in eating we were not seeing the catch up in weight - in fact it seemed that she was getting skinnier and skinnier - sort of like that Steven King book - Thinner . . .only we had not encountered any gypsies that I can remember! So on a trip home from Charlotte, NC after visiting with great friends - Willow asked to stop 7 times to go to the bathroom. Mark was getting irritated in his "get home mode" and I was beginning to get worried. Not only did she have to pee - she was pouring urine - I mean peeing for 10-20 seconds and LOTS!!!, Then she would get back in the car and say I am sooooo thirsty. Mark had banned her drinking - and she would look at me from the back seat and say - " Im sorry mommy - but I am so thirsty - and I need to pee again . . ." Almost with tears in her eyes. So we stopped at rest stops, gas stations, Mc Donalds, Baskin Robbins and on the roadside twice. In my heart I knew this was not right. The final sign for me was that night about 2 am when she came into my room and said "mommy - Ava came in my room and peed on me" In my sleep-deprived stupor I said, "What? No honey Ava is asleep in her bed - and I believe she is dry." So I got up went and checked Ava and she was dry (YAY Ava) and then realized that my 7 year old was soaking wet having had an accident. She was MORTIFIED when she realized that she was the one who had peed. I calmed her down, changed the sheets and got her settled back to bed and knew then that i needed to check her blood sugar. (I remembered the signs - when Mark got sick - 14 years earlier) So I went back to bed - asked mark to leave out all his supplies in the morning and then told him to roll over and go back to sleep. I don't think he heard me at all - but I got up with him and asked him again to show me how to usehis meter and that I wanted to just check her blood sugar levels. I was probably over-reacting . . . but please let me just check her. It will make me feel so much better.

^^^Let me tangent for a second . . . my parents moved to WV (from Charlotte) in early July. My mom had been living with us since March and had become our sort of live-in babysitter . . . She has been saying to me for weeks that Willow just looks so thin and is so irritable lately. She also noted for a few weeks that on certain days Willow was just going to the bathroom sooo much and drinking all the time. But that was all. ^^^

So Tuesday morning, July 22nd, when Willow woke up I said to her - " honey, I need to check your blood sugar . . . I'm concerned with all the peeing you are doing lately" Sleepy-eyed - she was reluctant and I almost had to hold her down to let me poke her finger. After some coaxing and pleading - she let me prick her finger - which showed a reading of close to 300. This was fasting - no food for over 8 hours. For those of you who are unfamiliar with blood sugars - fasting blood sugars should be somewhere between 80 and 100. At first when I saw her reading I thought - ok lets try tomorrow morning and see what it is and take an average . . . but then my mind and heart kicked in and I knew we needed to get her to her pediatrician immediately. I called and they could see us in 20 minutes. So thankfully my mom just happened to have gotten the day off - she came over and took Ava and Haleigh. Then Willow and I got dressed and began our long journey for an exhaustive day . . . which turned into the rest of her life.
We got to the pediatricians office to which I had explained to Willow - they will need to take lots of tests I am sure. " DO they need to take blood, can I get the numbing cream?" When Dr. Jones walked in - I asked her what we needed to do first. She said - that she wanted to get some urine and that we would probably need to be admitted to the hospital to run all the tests - but that she was certain that she could go ahead and diagnose Willow with TYPE 1 DIABETES. Although I saw all the signs and I pretty much knew what they would say - when the words came out of her mouth - I was shocked and in disbelief. How could this be? I had her tested in March at her 7 year checkup - it all came back normal. I checked then bc of her lack of weight gain. If it was negative then -how could it be positive now? But I pulled my best poker face and had to be strong for Willow - we were about to begin a very long journey! Willow started crying immediately - I don't want to go to the hospital, no I wont go you cannot make me . . ." It was all i could do to watch her cry and not tear up my self. I held her and said it will be ok - mommy and daddy will stay all night with you . . . you are not alone in this. How scary it must have been. She then looked up at me and said - do I really have diabetes, like daddy? I really almost lost it then. She understood . . . she knew what was ahead.
The dr. left the room to check her urine and returned to tell us that it was spilling sugars at over 2000. She said it did not show any ketones in her urine but they needed to do a fasting glucose, an HbA1c and some other labs. It was now almost 10:00 am and Willow was starving - but they needed her to wait longer before they would let her eat. As we walked to the car to go home and pack bags for the hospital, Dr Jones called and told us that there were no beds available at the hospital and that we were going to try to do all this on an outpatient basis. Whew . . . I was relieved not to be going to the hospital . . . but then we were directed to go inside and do the labs in the outpatient services. There was over an hour wait . . . but somehow - they squeezed us in. Maybe it was the sullen look of desperation on Willow;s and my faces or maybe it was the fact that I explained that all her labs were fasting and she had not eaten in over 12 hours now. We got the numbing cream and waited our turn for labs. In the back of my head - I was sure that all the tests would reveal that this was all just a big mistake, there is no diabetes, sorry for the alarm . . . you can go home now.

After the labs we went home . . . and waited for the results . . . I made my famous Waffles (for Willow - doused in syrup! - I figured her last sugary supper . . .) Around 2:00 in the afternoon Dr. Jones called with the results - her HbA1c was over 14% and she had a definitive diagnosis of Type 1 Diabetes - we needed to go immediately to the Endocrinology Clinic at Womens and Childrens to get a prescription for insulin and some brief education to begin our regimen today!
We got there and found out that the Pediatric Endocrinologist for all of southern WV retired earlier that month. They have 2 nurses and a PA but no attending doctor. That made us all a bit nervous. But we listened, and paid attention and tried to take it all in. Willow was so brave and strong and I think realized the enormity of it all.

Later that week Mark called and told his sister (who also has Type 1 diabetes) and she got us in to see the Pediatric Endocrinology Specialists at Duke University. So the following Thursday we got in our minivan and headed to NC to see this wonderful doctor! Dr. Benjamin! For a week we followed the directions from our current clinic and were testing her blood sugars 8-10 times a day (sometimes more) Were injecting 4 shots daily of humalog and Lantus Insulin. We got lots of comments from well-meaning friends and family that we were lucky to already know so much . . . but each shot and each finger prick didn't make our situation any easier for me . . . I can only imagine for Willow. Once at Duke we were informed and relieved to find out that we were doing a REALLY GREAT JOB with Willow - in just 1 week her HbA1c was down to 12% (still at the top of the chart - but coming down well!!) There was still this bit of hope in me that this was not going to be forever . . . We were told that we had been doing everything right and they only tweaked our regimen a bit. What a relief!

Fast forward 4 weeks . . . tomorrow Willow will have had Type 1 Diabetes for almost 1 month! I have been writing this post for about 2 weeks now. And still I get emotional thinking about it. We are currently in a stage called "honeymoon". What that means - at least what I understand from the literature is that for many months prior to diagnosis her little body and pancreas were working soooo hard and fighting a losing battle until finally it gave out . . . that is when she was diagnosed . . .So we began insulin and her pancreas was able to take a break - medicine was doing it all . . . finally after a couple of weeks her pancreas begins to work some and shoot out as much insulin as it can, whatever it can find in reserve and it will do it spontaneously. During this time we are needing very little outside insulin. She is maintaining very good blood sugars and has an occasional high in the 200 range but more often, lows - in the 45, 50 and 60 range. These are scary to see and an overwhelming feeling of helplessness. But on the up side during a low - Willow gets some juice, a regular soda, cookies and other kid-friendly foods! She really likes that! Again . . . I am irrationally hopeful that her diabetic state will not return. Even though - everything I have read, heard and know tells me that this is only a short phase . . . maybe 2-3 weeks - up to a year or so. So we trudge on, checking her BS each morning, before breakfast, snack, lunch, snack and dinner and before bed and again in the middle of the night as well as any other time she says - I feel funny, tired, dizzy, hungry . . . We give 4 shots daily with meals and before bed. So now we have not only medicine for her we supply her life line . . .
We thank God for the many blessings . . . family, friend and the fact that this is not a debilitating condition, but is manageable . . . as we pray for easier manageability, less shots, less complications and strength to handle each step . . .