Today I am more thankful than ever for my friends, family and church family. Last Sunday we sold our Diabetic Alert Dog bracelets between worship and Bible class. Tonight we held a fundraising meal at church. We had incredible responses to both efforts. All told, we made $2,692 at both events combined. That is amazing! Besides monetary donations, we had several people donate desserts and others who helped clean up after the meal. I was exhausted by then, and so relieved that they were willing and able to wash dishes (my absolute least favorite chore).

Here's one of the cakes that was donated.

Also, our friends who already have a DAD came by to see us at dinner. Their presence really cemeted how wonderful a DAD can be. It opened up a lot of questions about the dog and allowed me to do some educating. Also, the DAD alerted on both my kids!! MH was low and EJ was high. That in itself was awesome.

I really don't have enough words to express our thanks for all the generosity and love we have been shown as we start this journey.

Today has been a truly amazing day. We sold lots of bracelets and have several people in other states who want us to ship them some!

My fantastic friends Heather and Leah are helping me plan a Scrapbook Crop to raise money. The date for that is June 22-23.

Another incredible friend, Susan, helped secure us a venue and a date for our benefit variety show. May 26 at the ACU Recital Hall.

And we had one very nice donation.

What a fabulous support network we have!

Love to all
Am

Last night was a good example of why we need a Diabetic Alert Dog. MH had 6 lows between 4pm and 2 am. When I finally got her up to 139 at midnight and felt comfortable going to sleep, Ethan started going low (90 at midnight and 72 at 2am). Needless to say we are very tired this morning. We are looking forward to having a DAD to help keep a nose on our kiddos.

We are having a mini fundraiser by selling these bracelets.

They are $2 apeice and say "Until there's a cure, there's a dog."

Selling these will be another step toward paying for our dog.

MH’s Story

We had been trucking along for about 4 years with T1D a constant presence in our home. Ethan was doing pretty well, although every day is a challenge with him. Once in a while we checked the girl’s blood sugars for our own peace of mind, but also so they would have some inkling of what Ethan did daily. In February of 2009, when MH was 7, our lives turned over again.

MH had been moody and grumpy and complaining of a headache for several days. She is usually outgoing and bubbly and involved in everything. On Monday, she and I were in a family martial arts class during her first really bad moment. I was in with the adults and she was in with the kids. One of the instructors came and got me out of my class because she was sick. She was shaking and crying, and complaining that her head hurt and that she was sick at her stomach. I asked her if she wanted to home, and she said that since class was almost over, I should go ahead and finish my class. One of the other moms was waiting for class to get out so she offered to sit with MH until my class was done. So I gave MH some Tylenol and some water and went back to class for the last 15 minutes or so. After class, the other mom said that MH had almost gone to sleep but never really stopped crying. I did get pretty worried at that point because it is not like her to keep on crying. So I asked her if she needed to go to the walk-in clinic. She said “maybe.” As it happened, the clinic was closed so we went home. She took her shower, drank more water, and then went right to bed. I was worried because when she gets strep, she goes down really hard. I thought that was maybe the problem, but she didn’t have any fever. The next morning, Tuesday, she was feeling better and wanted to go to school. So I gave her another Tylenol and sent her. After lunch, she called feeling really bad so Jeff picked her up and took her home. When he got home he called me at work to tell me what was going on with her. I asked him to check her blood sugar to put my mind at ease. Jeff checked himself and all three kids to make it more like our normal periodic checks. Jeff was 104 (normal adult BG is 80-120). Nana's was 119. Ethan was running pretty high at 440, but Jeff gave him some insulin from his pump and he was good to go... then he checked Mary Hannah. Her blood glucose was 494! Jeff’s initial reaction was the desire for denial. Mine too. He called me at work and I headed home so we could make a decision about what to do (call the pediatrician, the endo, or go on to the ER). We decided to go on to the ER to make sure we weren’t headed into DKA.  Thankfully, she was not in DKA. She did have some ketones, but all the other blood work looked ok. Then we had to tell her.

MH and Lucky Bear. Lucky got a shot and a bandaid too.

Of course, having grown up with Ethan’s T1, she knew a lot about it. We and the doctor told her that she had diabetes like Ethan. She took it really well.  First, she asked the doctor “Are you sure? Do you need to run any more tests?” He assured her that there was nothing else that would make her BG so high. Her next question came along with the expected anger and tears “Why me? Ethan already has it. Why should 2 kids in one family have it?” My heart melted a bit then when I had to say “I don’t know baby. You are right. It’s not fair.” We had some discussion and some hugs and tears, but she rallied us all with her next big question: “So, when do I get my pump? And can I get the cordless kind?” Wow. What a kid.

She was not admitted to the hospital that night (nor has she ever been). The ER docs, who knew us, felt like we could take better care of her at home. We had the supplies we needed and the know how. We didn’t know how much insulin a seven year old would need, so we decided on giving her the same amount as Ethan, knowing it would not be enough, but would be better than nothing.

Wednesday, we called the Endo in OKC and headed up to Oklahoma for a visit we had hoped never to make. MH was a real trooper through several days worth of ordeal. She got right on board with checking her own sugar and even giving her own shots. I am so proud of her. Naturally we had rants, long talks, and tears on the long drive, but overall it was pretty smooth.

Now for a truly amazing part of the story: MH wanted to go back to school on Thursday! She did want us to come and talk to her class about Diabetes with her. So we had an amazing discussion with her class. They asked really well thought out and sensible questions. When we were done talking, three or four of the girls, jumped up, embraced MH and told her that they would always love her and stand beside her through everything. Those are some amazing friends. They have all held true to their word. MH’s best friend, E, also learned how to count carbs, give shots, and operate MHs insulin pump. I honestly couldn’t have wished for a better friendship for my girl.

Ethan’s Diagnosis Story

Ethan was diagnosed at 18 months old. The week leading up to his diagnosis was spent hauling him back and forth to the doctor. I was 29 weeks pregnant with our third child and was completely exhausted. Ethan hadn’t been sleeping more than an hour or two at a time. Mostly he would only sleep if I sat in the rocking chair and held him. I believe we actually saw the doctor three times and went to the lab twice. He did have strep and some kind of viral infection. The last time (EVER) that we went to the lab was on Thursday afternoon. We didn’t hear anything new on Friday, so we kept on treating Ethan’s symptoms which at this point included a low grade fever, runny nose, sore throat, extreme thirst, overwhelming urination, and vomiting. He also had quit saying anything except “water,” “bed,” and “momma,” he lost the ability to walk or even stand, and he quit drinking from a cup. On Saturday, December 18, my parents came to celebrate Christmas with us early since they were going to California after Christmas and I was not stable enough for travel. Ethan perked up a bit on Saturday when we opened presents. He actually tried to make a basket in his new basketball goal and ate a little chicken.

Sunday was going to be a very busy day. We had church, then a Christmas open house at our house after lunch. Ethan was REALLY sick, so mom stayed home with him while we all went on to church. Before church, we talked to a friend who was an ER doctor and asked him to come by and see Ethan after worship. He came in, took one look at Ethan, who by this time was turning blue on his hands, feet and face, threw him in the car and took him to the hospital. Husband Jeff went along with him. I stayed home because of the open house and tried to get everything ready without worrying. A little while later a neighbor stopped in. Jeff called her from the hospital to come and get me. He had called me, but I was vacuuming and didn’t hear the phone. She told me that they were admitting him and that I needed to get down to the hospital ASAP. So leaving MH with Nana and Poppa, I hurried over to the ER. When I got there, Dr. Jeff (our friend) told me that Ethan had Type 1 Diabetes and that the LifeFlight helicopter was on the way to pick him up and take him to OU Children’s Medical center in Oklahoma City. We stayed at the ER until the flight crew took him. We went home and packed an overnight bag, (really just overnight) and drove almost 2 hours to the hospital. On the way I made a few calls to friends and relatives. I had to get a sitter for MH (3 years old). Nana and Poppa waited for the sitter, handled the open house, then drove to the Hospital also. When we got to the PICU we found Ethan completely unconscious, unresponsive, with an oxygen mask, lots of heart leads, a blood pressure cuff and a couple of IVs. We still really had no clue what we were in for. Our doctor came in and told us a very little bit about T1. Ethan was in Diabetic Ketoacidosis, he wasn’t getting enough oxygen, and his BG was 697. The doctor said he thought we had caught it in time, but he wasn’t sure.

Overnight we stood by his bed, held his tiny little hands and cried. We could not believe that we had let him get so sick. Finally, one of the nurses was able to find me a rocking chair to sit in, but it was not much better than standing. (Remember, 30 weeks pregnant now). During the night, one of my “chosen sisters” came with a ‘rescue’ bag of food, crossword puzzle books, pencils, etc. But mostly, she dropped everything, cancelled her clients for 2 days, and came to be with us. (T – you are the sister of my heart). We stayed in the ICU for almost 3 days. (Remember that overnight bag I had? I was really reeking by this point). Toward the end of the second day, Ethan started to wake up. Dr. C was excited, but warned us that due to many complications, Ethan might have brain damage. However, not long after that Ethan started pulling at his IVs and opened his eyes. He looked around and said “Momma? Da da? I go outside.” You would not believe how loud all the nurses cheered when he spoke! It was such a relief.

 After we moved out of the PICU and into a regular room, I finally sat down. It was good that Ethan was well enough to go to a regular room, because by that time I was in labor. I had to leave him and go to labor and delivery where the doctors we able to stop my labor. The next morning I got to go back to Ethan’s room, and our education began. Ethan was getting back to his old self, and we spent 3 very intensive days with a variety of CDEs and doctors learning how to take care of our boy.

We were sent home on Christmas Eve. I got the best Christmas gift EVER. My son was alive and was going to be ok.

P. S. Remember that lab in the 1^st paragraph? They had decided that their results from Ethan’s blood work were ‘anomalous’ and so they sent them to another lab in another city late Friday for a recheck. They didn’t call us, they didn’t call the doctor who had specifically ordered a glucose test and a full blood panel to check for diabetes. In short they screwed us royally. They actually never called the doctor. They sent over a report that was improperly filed with some other lab reports. Our doctor didn’t even find it until after we called her Monday morning to tell her we were at Children’s. Hmm. I never paid that lab either. Nor do I ever intend to.

D.A.D.s for Kids

We have decided to make a change in our lives. With two T1 diabetics in the house, we have to be always on our toes (and their fingertips). Like many other T1 families, we spend many hours worrying, and lose many hours of sleep over T1. So for a little peace of mind and hopefully less worry, we have decided to get a Diabetic Alert Dog (DAD). We have a friend in town who got her DAD in February and has found it to be a wonderful experience.

This is Perseus, our friend's DAD.

We are going to be getting our dog from Warren Retrievers / Guardian Angel Service Dogs. DADs are able to smell the changes in blood sugar and can alert a diabetic to a high or low even before it registers on the glucometer. As MH and EJ’s sugars are all over the place, I’m sure that whatever dog we get will be working hard all the time. For more info on DADs, visit

www.warrenretrievers.com and www.guardianangelservicedogs.org.

To donate to our DAD please contact us or Warren Retrievers.

I am going to try to keep updates here about fundraising and where we are in the process. Also follow us on facebook D.A.D.s for Kids.

Taste Trust

After Mary Hannah was born, I began to understand more about God’s parental relationship with me. I am as dependent on Him as an infant is on her parents. I nursed Mary Hannah for about three months, and then I moved her onto formula. Later, as Mary Hannah moved into eating regular, solid foods, I became able to grasp a true wonder. I have fed her hundreds of times, but there was a moment of true understanding one day in the kitchen.

            As is typical with people there were some foods Mary Hannah liked, and some that she did not like. As I was shoveling oatmeal and peaches into her little mouth as quickly as I could, she repeatedly opened her mouth for the spoon. This is not astounding as she was very hungry. But I offered her something new, peas. She willingly opened and closed her mouth and took a big bite of peas. Then as a horrible look spread over her face, she spat them out and shook her head. I wiped her mouth to get those awful peas away, took up the bowl and spoon, and I was surprised when she opened her mouth again. Why? Because she trusted me. In her own little way she demonstrated that she had utter faith that I would not give her something that was bad for her. She opened her mouth because she trusted that I wouldn’t fill her mouth with sand or poison. Even though I had fed her peas which she clearly did not like, she still opened her mouth for me like a little baby bird, secure in the knowledge that I would not feed her something bad.

            This sudden revelation struck me – This is how God wants me to trust Him. He puts good things on my plate, my husband and children, for me to enjoy. When I open my mouth, he feeds me with the foods I am ready for. He puts people in my life to spoon feed me knowledge and lead me to be spiritually filled. He satisfies me with joy and comfort. I eat up his goodness; “my cup overflows” (Psalm 23:5).

            Does this mean that I enjoy every single bite that God has put on my plate? No. I do not like Type 1 Diabetes. I do not like that Sarah only had 14 years to taste her own life and to flavor mine. I do not like measuring every bite of food that my children eat and then medicating them for it. I do not like looking at candy as both medicine and poison. I do not like worrying about their blood sugars. I find poking them with needles, insulin pumps, and glucose monitors distasteful. I chew on worry every time they are ill, wondering if they will need hospitalization. I detest wondering every night if they will wake up in the morning.

            BUT – I open my mouth anyway. I drink and eat of what God gives me daily because I trust in Him. I may not like my daily meals of good and bad dishes, but I can examine each taste of sour bitterness for a burst of sweetness on my tongue. I taste laughter from my children’s jokes; I taste their salty, sweaty tears. I gorge on the purity of their embraces in the aftertaste of their coppery blood. I delight in their sugary, sweet kisses on my face; I taste their tangy bitterness at Type 1 Diabetes. I drink in their successes, their imaginations, and their music; I find their defeats distasteful. And I would not trade the richest most exotic fruit for the multitude of flavors that they bring into my life. How we appreciate the sweetness when bitterness is also present.

            My daughter taught me how to trust God. I may not always like what he serves me, though certainly, I begin to see how a cup of bitterness may complement this banquet that is my life. If I only taste good things, how can I learn to appreciate them? “One who is full loathes honey, but to one who is hungry everything bitter is sweet” (Prov 27:7). I am reminded to hunger after God and trust that he will fill me with good fruits. Like Mary Hannah, I continue opening my mouth to take in whatever food God gives to me.