Resurface

I took a break.  I didn't realize that it had been that long of a break.  January.  But it was.  I started to feel to public so decided to hide for awhile.  But decided it was time to resurface.  I began a graduate program in January.  Hence the break too.  I will be working on my Master's degree in Anthropology.

So, last night, was biggest drama in awhile in dealing with diabetes.  I gave my daughter her long acting insulin and wrote it down.  Then my husband gave my daughter her long acting insulin and then realized...a big...woops.  After many phone calls to the doctor, a missed soccer game, some yelling, some snacks, and a vigil kept all night long in front of the television and on rotation to her room to check her and give her more food, she is doing okay.  The extra insulin is still in her until dinner time today, but so far she is okay today.  I was upset, then worried, and now tired.  So, in all practicum, I write.

went for a walk

we went for a walk today and some neighbor friend's caught up with us. They had seen us walking by and came to join us. Our kids walked together as us moms, chatted. one child in a stroller and three running ahead.

when we left the house, my sweetie was 191. I brought smarties and cheerios, just in case. we walked the long way so that they could pick flowers and help neighbors receive their newspapers that were sitting in driveways.

As we came up the last street on the way back to our house, we spotted another friend home, working in their driveway. He also is our diabetic friend that runs a group for diabetics. (God's plan). we chatted for awhile, while the kids played on his front lawn. Then it was about time to leave.

It had been almost an hour since we had left home. As we were starting to head off, my little sweetie, laid down on the sidewalk. As they do this for fun on the walk too, I wasn't overly alarmed. But decided it was time to check her again. I yell back at our neighbor. "64!"

I grabbed the smarties that I always carry, just in case, and opened some up for her. Our neighbor asked if I wanted a juice box. Of course all of the kids did, diabetic and non diabetics! So he graciously brought four juice boxes back. She began to drink one and finish her smarties. My son wanted smarties too.

we then checked her again and the meter said 287. Our neighbor said, "that can't be right?" He had never seen numbers go up that high so fast before. He suggested retesting her. He ran in the house and grabbed some alcohol wipes for me to clean her finger and try again. 106. that was better. We gathered all of our stuff, including the plant that he gave us, and headed back home.

I was thankful that we have a friend that knows all about diabetes right down the street from us. Not every neighborhood is equipped with lifelines! and I was reminded to always clean her fingers when checking her. False readings could be dangerous.

and our other friend was educated at the same time.

almost a year

It has been almost a year now, since our sweetie in the middle of the picture there, was diagnosed with type 1 diabetes. juvenile diabetes. a permanent condition. insulin dependent. an autoimmune disease.

This time last year, our little 3 year old was slowing down. she would often lay down on the floor and rest during play time. She was starting to wet her bed again, even though she had potty trained for quite awhile. She had a lot of trouble peddling her bike on walks. She was beginning to feel light when I carried her. She was getting quieter and quieter.

One day, a friend came over and during my friend's visit, our sweetie ran to tell me that she needed to go to the bathroom three different times and each time had an accident. I told our friend that our sweetie had been having trouble making it to the toilet lately. I thought it was strange but didn't know why. We agreed it would be good for the doctor to check her out. I thought maybe it could be a bladder infection. I had never experienced a bladder infection, but that seemed to make sense.

Valentine's night, I was calling around trying to find a babysitter for my other kids so that I could take our sweetie to her doctor's appointment the next morning. It was to no avail. Unfortunately our nice date night was full of concern as to how I was going to get our daughter to the doctor the next day.

That next morning, after changing our sweetie's bed sheets again, and noticing a rash, my teenage daughter offered to stay home from school that morning so that I could take our sweetie to her appointment. I was relieved.

I felt like a mom that was being proactive and going to find out why our daughter was having so many accidents. I read in a magazine that when anything is out of the ordinary in a child's behaviors, seeking a doctor first, is wise. I thought, whatever the problem, we will start with the medical profession, if its behavioral, we will deal with that next...

and the rest is history.

the doctor took a urine sample, just to be thorough.

She walked in carrying the paperwork and said that she ran the sample just to be thorough but didn't expect to find anything.

Then she looked again.

Her glucose levels were over 600.

She left the room.

Her nurse came in a blood meter, that now I am too familiar with. At the time I was yet, so so innocent.

What's going on? I innocently asked. innocently asked. so innocently asked.

the doctor is calling the endocrynologist.

what's that? I asked.

the diabetes specialist.

what's diabetes? I asked.

the doctor will come back and talk with you, soon.

Basically, in the next 30 minutes, my daughter was not the same daughter I packed into the car that morning on the way to the doctor's office. She no longer had a bladder infection that could be treated with antibiotics and returned to normal. She was now a daughter with an incurable autoimmune disease that had to be rushed by ambulance to faraway hospital and admitted for the next few days and I was to stay in cell phone contact with the doctor the entire drive to make sure my daughter didn't....pass out?, die?,....I don't know. I never asked.

so here we are today. Almost a year later. I still fight tears typing this horrible scene from the doctor's office that I never wanted to be part of.

But here we are. almost one year later.

my heart goes out to all of you knowing all to well what I am writing about.

overtime and mix ups

I was just praying for relief the other day. It's one thing to not have enough money, but then to have a diabetic child, and no sleep, and a husband working so much overtime, and not enough food in our cupboard, and Christmas around the corner...If only God could lift one burden. If we weren't so sleep deprived and so busy and not enough income and worrying about our daughter's wellbeing...we pray and pray.

God has sustained us this far.

My husband had atleast 20 hours overtime on this coming paycheck. He works full days and then returns to work after the kids are in bed and comes home sometime after midnite and starts all over again at 7 in the morning.

Last night he called me on the way home at midnight and tried to talk to me just to stay awake.

We went through an In n out by ourselves the other night to try to steal away for a few minutes and when we pulled up to the drive through window, I looked over and he had fallen asleep next to me.

we are worn out.

the other night I took my doctor's suggestion and place a simple rubber band around our sweetie's lantus bottle. I had never mixed them up before but she advised just in case. She even offered to give me a complimentary rubber band.

I put on one that evening, to appease the doctor. In case she came later to inspect my refrigerator where we keep her medicine.

that night, in a chaotic bedtime, I confused the bottles and gave our sweetie way too much novolog. I realized as soon as I did it. Thinking that "wait, that wasn't right?!" I quick grabbed my husband and we calculated how many carbs to give her to make up the difference. We watched her for two hours, checking her every 10 minutes and feeding her every 15 minutes. we ended the two hours at 101. I then gave her some milk and put her to bed.

I called the doctor for advice on giving the lantus that I did not. She said to wait a few hours and make sure she was okay then give it if she went high. several hours later, she did. so we gave her the lantus. The doctor advised not to giver her a correction shot to be safe.

so by 3 am, she was up and really high. over 450. an hour later she was vomiting in my room. we then called the doctor and asked "what do we do now?!"

The doctor advised to correct her now and check for ketones. prepare for a hospital visit if necessary.

thank goodness, no ketones. and she settled down on her sleeping bag at the foot of our bed.

we slept a bit, that night.

I went to the pharmacy the next day and asked to pick up the order that the doctor had sent in for a blood ketone meter. the "helpful" worker said that the order hadn't been put in, come back in a few days.

This was my breaking point. I was thinking, "I NEED this!, we were up all night trying to catch urine in a cup to test her. Her life depends on this meter! you have no idea what we have been through and that this is for a precious little four year old!!!"

I was wearing large sunglasses that hid my tears.

I walked out to my car with much heavier shoes. I thought, "imagine if diabetes were to go away, and we wouldn't need all of this paraphenalia anymore? imagine if we didn't have to worry anymore and she would just be okay?"

I now know why people fight for a cure and walk to raise money to find a cure. It COULD save a life, HER life, MANY lives.

It is such a daily disease that can easily go wrong.

doctor visit

we went to the pediatrician today. she had a fever on monday and slept all afternoon yesterday. then she developed a rash. her numbers have been high for several days and I was worried. Our pediatrician thoroughly checked her out. she determined that she has a virus that will eventually go away. her rash is due to a new bar of soap that I had put in the bathroom. and her numbers needed to be adjusted. She had me call our endocrynologist from her office. she was concerned that he glucose was too high in her urine. but when I checked her with her meter I knew she was high already. she was 313. so our endo made some adjustments to her ratios and long acting lantus to bring her down.

I came home relieved. I was worried she was going backwards. she had lost two pounds in the last two weeks.

fellow mothers of diabetic children were discussing the misconception that people have that someday we will have our child's diabetes under control. I have had this comment said to me several times. "Soon you will have her diabetes under control, right, and life will go back to normal?" "and you can sleep more? not worry as much? she can eat what she wants? "

Her life will always be managed. Right now at the very little age of four, we have the huge responsibility of balancing her scale daily, hourly, to try to keep her in the best health that we can. It will always be like this, just handed over to her at some point. but we will still worry.

If anyone feels so gracious as to help with a donation. we need another bracelet for her! The one that I finally purchased, broke. argh! so there is the first item on her christmas list. next item, a lalaloopsy doll!

just an update...

so the other night, we went in to check her again and found out that she was 78. she was sound asleep and sweaty and when I lifted her hand to check her, she was shaky. I was able to get her to drink some apple juice from a straw in a cup balanced next to her, snuggled in bed still.

she then came back up to 111. I then tried to get her to drink some milk to get her back up a bit higher for the rest of the night, but only succeeded in getting her to drink about a third of a cup. she did make it through the night at about 160.

we are starting to see lows again due to the adjustments that were made....

we are completing testing for her right now for her speech services. she hasn't been progressing as her brother is, so we are looking at any other areas that she may need support in too. so far, the vocabulary assessment determined that she has the vocabulary of a ten year old. hmmm.

"slow to speak, yet quick to listen" that was the first thing that came to mind.

so we shall see what is to come...

I was inspired by a woman that I recently read about that shares her story about her twins that were in the NICU at birth and how now she encourages others.

Then I thought about how many stories I am able to tell.

We have had preemie twins, a daughter in a body cast due to a broken femur bone, and now a little one with type 1 diabetes.. I think I am going to start working on a book telling our story of those three incidents to encourage others that face medical challenges with their children. If we survived three, then others can survive one or more too!

c'est tout pour maintenant...as I used to say

many things to come