Friday, October 30, 2009

David and I were looking back at some pictures of last month, some of the fair we took the kids to the week before Alyssa's diagnosis. This picture struck me -
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Just looking back I can't believe how THIN she looks.

She's gained all 7 lbs. back now in the past month and looks very healthy now.

Tomorrow is Halloween. I've already broken the news that she will only get to choose a frew pieces of candy to keep, the rest we'll give away and she can get a toy or money for it. We'll see how this goes!!!

Thursday, October 22, 2009

A birthday party

So I didn't even think about this at the time, but now that's upon us, I know realize that I cannot leave Alyssa even for a birthday party! With her starting this new school, she has 2 little friends that she talks about constantly, Mia and Makaila (like my name but only it sounds like you're saying it with a southern accent!) Makaila's 6th birthday party is this Saturday and Alyssa of course wants to go. So we'll go, and I'll stay and make sure she gets the insulin she needs and make sure she doesn't go low while jumping on the bouncing castle they're planning to have as well.

Diabetes makes things so much more difficult. Ugh.

How I took for granted being able to take the kids to a birthday party, have them run around, eat cake and not even think twice about it. I mean, who does?

A mom of a Diabetic. That's who.

Wednesday, October 14, 2009

Getting adjusted

Alyssa started her new school on Monday and it was rough the first day - she cried, and was very nervous. Yesterday was a little bit better, and today was a LOT better. I'm so glad. In fact, today she had an early day and got to have lunch at school! She thought that was pretty cool. The nurses at the school have been amazing too, they've called me all 3 days, giving me her blood sugar numbers and checking with me on insulin. If they keep this communication up (which I'm sure they will) I think I'll feel very good about it all. I'm actually not nearly as anxious as I thought I would be! Partly because Alyssa is honeymooning right now so her blood glucose numbers have been great (mostly low 100's) so I don't feel like I have much to worry about.

Tomorrow we go to the Diabetes Clinic for another visit. I hope we can be on an insulin pen by next month (so no more needles and syringes!) and if Alyssa's A1C (a test that gives you a picture of your average blood glucose control for the past 2 to 3 months) numbers are good (I think they have to be 7 and below) an insulin pump very soon.

Saturday, October 10, 2009

Honeymooning?

It may be too soon to say but I think we might be in the beginnings of the honeymoon phase. For those who don't know about the honeymoon phase in Diabetes, here's an explanation:

At first diagnosis, many people experience what is known as “the honeymoon phase.” The honeymoon or remission phase occurs after blood glucose levels have been brought under control and is characterized by a decrease in insulin doses. The length of a honeymoon period is variable (days, weeks, months, and rarely—years), and not everyone has one. As a general rule, the younger the patient at diagnosis, the shorter the “honeymoon.”

They say it can last anywhere from 2 weeks to 2 years. Alyssa's blood sugars have been the most stable in the past 2 days then they've been since she got diagnosed. It doesn't mean we do less blood sugar checks, and it doesn't mean that she doesn't get insulin anymore - just considerably less!

Oh another note, Alyssa starts her first day at her NEW school on Monday. She's nervous but I'm sure she'll do great. Now I just wonder how I'M going to do with her being away from me and me not being there to care and watch her!

Tuesday, October 6, 2009

New school

So we finally (after almost 3 weeks being out) are getting Alyssa back in school! She will start at Brouillet Elementary we're hoping next week. It all depends on how fast we can get everything set up. I filled out all her enrollment paperwork (who would have thought my daughter would have TWO first days of kindergarten?) and tomorrow we're meeting with the nurse to discuss Alyssa's health plan. With Alyssa going only half days it shouldn't be such a big deal, but every other Wednesday she'll go in the mornings and stay for lunch.

Alyssa will be the only one in the entire school (and it's not a small school) that is a Diabetic. It helps to know that the administrative staff is very nice there, the nurse is wonderful, and all will know (and certainly love) my daughter. Therefore there will be many eyes on her during the day. Still, it will be hard sending her off into someone else's care when the day comes.

Sunday, October 4, 2009

A scary low.

Today we were at my parents' house like we are most Sundays. Sunday afternoons are really the only time I get to "relax" a bit with the help of my parents and take a quick nap. Especially lately. Well, while I napped, my dad took Alyssa outside to pick a pumpkin and play a bit. He rushed inside after some time with Alyssa in his arms and yelled at us to get up. He laid Alyssa on the ground. Alyssa was pale white - no color to her at all. She usually has rosy cheeks and beautifully pink lips, but not then. My dad said she told him she was hungry, he said to her ok let's go get something to eat... well, she started walking immediately to the house and so he followed her, and then she stopped and said, "I'm too tired to walk Papa." He had to scoop her up in his arms and hurried inside to us.

I took her blood sugar immediately - 51. TOO LOW. Scary low.

We fed her 23 carbs immediately with some Craisins. Almost too tired to chew but she did - and as soon as she was eating, she started gaining her color back. 15 minutes later I checked her blood sugar again - it had shot up to 104. Good. I let her continue to eat, checked her sugar after a half an hour - 285. I decided to give her some insulin to bring her down to a safer number. Well, apparently that didn't do much of a trick because before dinner she was 385. Too high.

Too high. Too low. Diabetes is a juggling act.

On another note, I recently made friends online with another mom with a Diabetic child. I read her blog and saw this youtube video posted and made my a mom of yet another Diabetic child. Check it out - it really sums it up.

Saturday, October 3, 2009

5 going on 25

This morning my 5 year old daughter told me, "Mom, I want to do my own finger prick. I'm a big girl and big girls do their own finger pricks." I cocked the pen, she took it, pricked her own finger, I helped get the test strip into her meter, she sucked up the blood with the meter and read me her blood sugar number!

And then after lunch today she tells me she wants to do her own insulin shot. I nervously say, "Really? Ok..." I'm not going to discourage her but wow. I put the proper amount of insulin into the syringe, pinch the back of her arm for her, and she takes the needle, sticks it into her arm, gives the insulin and pulls it out and exclaims, "I did it!"

She's 5. She's flippin' amazing!!!

And another note, here's my cuties watching Saturday morning cartoons cuddled together in one of our recliners. Christian likes to wear the least amount of clothes possible at ALL times. :)

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How God Selects the Mother of a Diabetic Child

I found this poem when googling Diabetes information. I'm keeping it close to my heart.


How God Selects the Mother of a Diabetic Child by Erma Bombeck Modified a great deal by another mom of a diabetic child.

Some women become mothers by accident, most by choice, a few by social pressures and a couple by habit. Did you ever wonder how mothers of children with diabetes are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

"Armstrong, Beth, son. Patron Saint Matthew."
"Forrest, Marjorie, daughter, Patron Saint Cecilia."
"Rutledge, Carrie, twins. Patron Saint Gerard. He's used to profanity."

Finally, He passes a name to an angel and smiles, "Give her a child with diabetes." The angel is curious. "Why this one, God? She's so happy.""Exactly", smiles God. "Could I give a child with diabetes to a mother who does not know laughter?"

"She has the patience?" the Angel agrees."

Once the shock wears off, she'll handle it. I watched her today. She is strong. You see, the child I am going to give her will require great care. It's not going to be easy."

"But, Lord, could this make her stop believing?"God smiles. "No. This one is perfect. She has a strong faith in me." God nods. "Yes, this is the woman whom I will bless with this child. I will be at her side every minute of every day of her life because she is doing my work."

New Hurdle

Now our hurdle is figuring out where Alyssa will go to school.

She was attending Pioneer Valley Elementary for a week and a half before checking into the hospital. Now we can no longer send her there since they only have a nurse on site 2 times a week. We made an appointment for yesterday to speak to the principal on what our options were.

When we got there, the receptionist stood up and started talking to us. She told us they "basically couldn't do anything until Alyssa is self-managing and that we should make this our priority." My husband looked like he was fuming. He didn't say a word to her. I replied, "My daughter is 5, she's still a baby and I'm NOT going to make her prick her own finger, figure out her blood sugar, eat, then decide on how many units of insulin to give herself and then give her own shot." The receptionist then asked how our first weekend at home went and I said, "As well as can be expected." She then said, "It could be worse, she could have MS."

Stupid comment. Stupid, stupid, stupid.

When people say to us "it could be worse", "she could have this" it makes us feel like their taking away from what we ARE dealing with and what we ARE feeling. Some people just don't get it.
Anyways. The meeting with the principal went fine, but he said too they can't have a nurse on site more than 2 times a week. That won't work just for the simple reason that even if she WAS self-managing, if her blood sugar gets too low she could suffer a seizure or pass out and would need her glucagon pen (basically a sugar rush in a syringe) and NO ONE would be able to give it to her.

We need a nurse there with Alyssa at the school, ALL THE TIME.

There is one option within our school district, a place called Camas Prairie. But they only offer full day kindergarten. Before this diagnosis we would have loved that, but now that we're just learning how to live with Diabetes, it's not something we want.

We then go to Bethel (our current district), their district office and get them to sign a release of attendance from their district so we can go to Puyallup - the next district. We then drive down to Puyallup's District Office and put in an application for transfer. The Puyallup school that DOES have a nurse there 5 days a week is called Brouillet and it's only 5 minutes away. The only thing I'm not crazy about is that the only opening is in the afternoon class, and she wouldn't have bus transportation anymore, but all things we can deal with.

Now we just have to wait and see if we get approved. I hope we find out soon as my daughter will be missing at least 2 if not 3 weeks of kindergarten! Hopefully not more.

Besides all the school stuff, things are getting more organized here at home. And MAN do you need to be organized and on the ball when you have Diabetes.

Last night was a little scary. When we woke up at 2 am to do Alyssa's safety check (we have to test her blood sugar and make sure it's not too low or too high every night) her blood sugar was at 81. A good number for most people, but scary close to the "too low" of 70. I called the Diabetes Center (thank God for them) and asked them what I should do. They said to check again in an hour. So we went back to sleep for 45 minutes, woke up again at 3 am and checked, up to 100. Good. We could sleep.

I wanted to thank everyone for their prayers and support. We've really learned who cares about us, REALLY cares about us through this whole situation and nothing has meant more.

September 21, 2009 - The day our lives changed forever

People have been asking - how did you find out? How did you know something was wrong? Well, as emotional as I am now, and the place I am in currently I thought there is no way I want to talk about this over and over again, but for the past - almost week now I've talked to anyone who will listen. Somehow as painful as it is, it helps to get it out. To tell people how this happened, to tell people how we discovered that our beautiful daughter has Type 1 Diabetes.
I had been noticing over the past month or so that Alyssa been drinking a lot of fluids and using the bathroom a lot because of it. Well the week before her diagnosis it only got worse, to the point of my daughter having accidents (which isn't like her) and not even being able to go an hour or so without having to guzzle liquids several times and run to the bathroom hoping to make it. I knew something was wrong, something was off. I had some people tell me that she's probably just growing, not a big deal, but something in my heart didn't feel right about it. On Sunday, we went to church and she saw her Sunday school teachers whom she hadn't seen much over the summer because they take the summer off from teaching. They know Alyssa quite well and commented on how thin she looked. I knew she had grown taller and thinner (like her daddy) but I thought maybe I should weigh her. Sunday night, September 20, I made Alyssa get on the scale and there it was - 42 lbs. Down from the 49 lbs. she was in July. Taller and thinner, yes, but taller and LOSING weight? Something was very wrong.

I researched it online - over and over again DIABETES kept popping up. I thought no, no, no.... this can't be it. Alyssa is perfectly healthy - never complaining of anything BESIDES being thirsty and having to go potty often. Diabetes isn't it, it's SOMETHING else.

Monday, September 21 - I went to work very early in the morning - 6 am, and was home by 8 am to get Alyssa read to get on the bus. 8:10 - I remember I needed to call the doctor and make an appointment. Did so - appointment was at 1:15 pm. Got Alyssa on the bus, went to the gym to teach a Zumba class, came home, showered and since it was David's day off, he made me and the kids lunch. Got Alyssa off the bus, ate lunch and told David to watch Christian and that Alyssa and I would be back after her appointment.

I had no idea we wouldn't be back for the next 5 days.

I arrived at the pediatrician's office and of course, Alyssa immediately needed to use the bathroom. The nursing assistant said to take a urine sample, so we did. We then saw Alyssa's pediatrician, Dr. Davies. He looked over his charts and saw she had lost a couple of pounds even from her check up in March for her 5 year old visit. I told him the startling news of it being more - a 7 lb. loss, more than he thought. He then looked at me with sad eyes and asked me what I thought it might be - as if we were looking at each other thinking "diabetes" but neither one of us wanting to say it. I finally said it and he didn't say anything, just looked at me. He said it was either that or PICA, where kids find comfort in eating or drinking things all the time, like their bodies are missing something so they make up for it in other ways. He told me he wanted to run a blood test and urine test the next morning, Tuesday morning. I told him how we had already given Alyssa's urine and he said, "Let me take a quick peak at it."

Alyssa had to go to the bathroom again.

Dr. Davies came back in and told me we couldn't wait - sugars were spilling into her urine and we needed to get to the ER at Mary Bridge Children's Hospital immediately. I had him call David and explain everything to him. Dr. Davies told me to go and that he'd call ahead and have us get in immediately.

I cried the whole way there. Alyssa just kept asking if she had to get a flu shot. It made me cry more - a flu shot was the least of our worries. I called my parents, my parents, my husband, my son and my father in law were all on their way too.

I got to the ER, got checked in and while waiting for the doctor, I put my hands on my baby and prayed for her. That God would watch over her, take care of her, heal her.

The doctors came in, explained everything. My family arrived. My daughter gets an IV, doesn't even cry and exclaims, "That didn't even hurt!" The doctors think she looks so good, is acting so "normal" how high can her blood sugar be?

The answer: HIGH. Normal blood sugar: 70-150. My daughter's? 780.

The doctors told me if I had waited another day or 2, she could have been in a coma.
We immediately get fluids going on in her, insulin going. We're moved up to the PICU (Pediatric Intensive Care Unit) where she would stay until they could get her blood sugar down to a normal level by keeping her on fluids and insulin constantly.

Once we get into the PICU, my parents leave - it's late and they need to care for Christian for us while we're in the hospital with Lissy. My father in law stays with me, Alyssa and David. We're bombarded by nurses and doctors. All the while Alyssa is chatting away with them as she receives a 2nd IV to which she doesn't cry either. She talks with them constantly. They ask, "Have you ever been in the hospital before, Alyssa?" to which she replies (and they tell me they've never gotten an answer like this before), "Yes, when my mother had me." My girl is so special.

Alyssa continues to need to go to the bathroom several times an hour. I thought all this time she was peeing so much because she was drinking so much. Turns out, she was drinking so much because her body was losing everything through urine - including calories hence the weight loss. She just passed it all and had been for awhile.

As things got settled in, 11 pm came and it was time to settle in and get some rest. "Rest." Alyssa got maybe a couple of hours - the nurses had to check her blood sugars every hour. "Rest" - against my husband's will, I made him go home hoping ONE of us would get some sleep where he slept maybe 2 hour and had nightmares through it all. "Rest" - I started replaying everything over in my head...

On the way to the pediatrician's office that morning, before everything had been discovered, Alyssa said something to me that haunts me now.
"Mom, I have to tell you something."
"What Alyssa?"
"Sometimes at night when I was up and I told you I had to go to the bathroom, I was actually sneaking and taking drinks from the sink."

Here I was trying to cut off my daughter's liquids at night. She would get up several times before I went to bed even and tell me she was going to the bathroom. Frustrated I would tell her to hurry and do it so she could go back to sleep. Here she was HIDING the fact she was drinking. I told her not to drink. And it's what she needed. And she felt like she had to hide it from me.

David and I thought about all the nights she would get up and do the same thing - go to the bathroom all the time, we thought she was stalling. We became frustrated with her.
When she wet her pants, I got frustrated with her, telling her she should have told me she had to go sooner.

I know it's not my fault - I didn't know she had Diabetes. I know that somewhere inside but I can't shake the feeling that I hurt my daughter, I let her down. She NEEDED to drink at night, she COULDN'T HELP having those accidents. My God - what had I done?

We stayed in the PICU until Tuesday night and she was moved to the Medical Unit and then the next day to observation where we stayed until we left for home, Friday, September 25.

I'll write more about those days in the hospital later, but for now it took all the emotions that I have to write this.

I'm mad. I'm soooooooo mad. I'm so sad more than anything. I don't want anyones encouragment right now because I'm a very happy person, and Alyssa is a very happy girl. I know we'll learn to live and cope. But right now I'm grieving. And I need to grieve and to know that everyone around us understands that we just need to do that. We need to work our way through these emotions.

Oh and why is this blog named doctorAlyssa? Because one nurse said to my daughter, "You're so beautiful, are you going to be a model when you grow up?" and to that my daughter said, "I don't want to be a model, I want to be a Doctor!" Maybe she will, maybe she won't. Maybe she'll be the one to help find the cure for this disease.

One thing still hasn't changed and will never change: God is still the same God He was a week ago. A week ago when I didn't know my daughter had Diabetes.