pumping anniversary

May 6..it's been a full year that Hannah has been on the insulin pump. I remember all the classes we had to attend before we could even start. Hannah was so nervous to do something different. We were all a little scared of the unknown. We knew, however, that this was the next step for her, and it will improve things. It was a pretty drastic change and more information to pack into our brains. The pump has made our lives with diabetes easier (if there is an easier), and for Hannah her health has directly been affected by it's benefits.
She doesn't need to get injections with a syringe anymore, which was often times inconvienient, hurt and caused stress each time, it was more often than not inaccurate, therefore affecting her blood sugars, therefore affecting her mood.
We did the best we could for her, and her A1C was holding pretty steady at about 8.1-8.6%, which indicates a 3 month average of blood sugars in the high 200's. Not good.
The pump allowed her A1C to come down to an amazing 6.6% , which is a 3 month average blood sugar in about the 170's.

Here is the chart that breaks down hgb A1C. As you can see she is now in the goal range. As you look at the chart you can see how far we have come...at diagnosis she was at 10.8%, which means the 3 months prior to diagnosis her blood sugars were mostly in the 300's and higher, and since we were not doing anything to treat that, that was happening on a daily basis. On December 3, 2008, her blood sugar was 560. We have come a long way.



The pump has been able to give her more precise dosing. It doses to the 10th of a unit where as with injections, we were doing a full unit or a half....it was our only option. Even drawing up insulin to the half of a unit was a task in itself.

So her blood sugars are showing improvement, her moods have been better, and we get through this together and with more of a smile.

Every 2-3 days she gets her infusion site changed. It's the area where the pump connects to her body. Insulin is delivered to her just under the skin where a cannula is placed ("her site"). It's similar in design to a IV cathater, where a needle is inserted and then pulled out and left in place under her skin is a small cannula. This has been the worst of having the insulin pump, it's doing an IV prep every 3 days. Hannah has struggled with this the most. We have a process that we go through and it takes about 45min - 1 hr to change her site. Technically it should take less than 10 minutes. Right from the beginning , when we were at the pump start class, the infusion set choosen for her was the "Silhoette", because she is so thin. It goes in at a 45 degree angle just under the skin, and they put numbing cream on her so it didn't hurt so much. We have stuck with the numbing cream since it makes it easier on her. Most kids can get by with the "quick sets" and that goes in at a 90 degree angle, which is straight down and in and goes in with a push of a button-- ie: quick. Hannah's sites we have to manually insert. You need to have a little more fatty areas with the quick sets so that the cannula doesn't kink and not allow insulin in. Medtronic has just come out with a NEW "quick set" called the "Mio" and it has a shorter needle and cannula. Sometime this summer we are gonna try this one out. Hannah again, is not for change. Being that it's a quick set I think it's another thing that will make these site changes easier for us as parents and hurt less for Hannah. Also Steve has not yet done a site change in the entire year. That means I have done approximetly 150 site changes over the last year. I just started to teach Steve, but Hannah gets all worked up when I'm around and wants me to do it.
He just did his first one today, while I went to workout and it went just fine, and if we get going with the new Mio's this summer hopefully it will be easier and quicker for the summer, and even in a few years Hannah will be doing her own sites.

Also coming up, we will be walking in the JDRF 5K Walk to Cure Diabetes in Neenah WI on May 21st. Any support would be appreciated....donations can be made online: www.walk.jdrf.org, under team Hannah's Hopeful Hearts--(Hannah Emery) or checks can be mailed to us. Every walker, every step, every dollar brings JDRF closer to a cure.

Easter time--Jesus is Risen, He is Risen indeed!!

Just a few pictures from Easter. We didn't have much planned this year. Kids sang a song in church with sunday school, and I had to work at the hotel at 4pm that night.






The sun was bothering Hannah's eyes, no matter where we went.......SO....


...to get a good picture of her she had to be under a tree.


Easter eggs

wild boy turned couch potato

Our dog Lou, (AKC name "Bailey's Captian Lou"), turned 9 years old on April 23. According to Hannah's recent independant research on dog breeds, she discovered Golden's live 10-12 years, and she wasn't too happy that Lou is now 9 already.
Our fluffy, energetic wild boy has traded in those times, for naps on the couch all day.





He does still gets bursts of energy, but are mostly short lived. He loves to wrestle with Steve in the livingroom, and instead of long walks on the path in town, he now enjoys the quick jaunts to the local coffee shop with Steve. The jingle of his collar and leash still gets him all riled up.
He will tear around the yard like the wild boy he used to be, but it only lasts a few short minutes now before he needs a rest and a drink. He will still retrieve a ball or frisbee, but only a few times and then he just stands and looks. Escaping out of the backyard used to be his goal, but not anymore. If he does spot free range of Dassel, he now just ventures across the street to visit the neighbors, instead of his escapades trying to figure out how to get to Cokato ( 6 miles away!!!)and then looking at us like--see ya later. One time he landed in the dog pound, because he got out without his collar on, we all learned a expensive lesson. He loves to lounge in the sun, as long as it's not too hot and spends most of the summer outside on the back step, sleeping the day away. Winter is not his favorite season.....snow up to his back is hard to get through.



Spring is definatly not my favorite season when he comes in all muddy.

His fur is pretty white now, and has been turning white over the last several years. He is our version of a white golden :)
He has truly been a wonderful first dog for our family and we enjoy him in our lives (most of the time)

The dignity and grace of our canine friends are amazing to me.
We humans have so much to learn from them,
Such an uneven exchange...such a small price they demand from us.
A little food and water, a little attention
and a corner in which to sleep.
In return, we get volumes of unconditional love,
patience, understanding, and loyalty.
If only the human race could unlock their secrets.
(author unknown)

Pictures of Lou on his birthday.

He's pretending to be an old man ( ha ha)

the wrong time

Diabetes threw us another curve ball, and everytime something happens, it's when I least expect it to, or don't want it to. It's not a good time, I yell. I think my somewhat of a medical training has kept me on top of this diabetes stuff. Yes I can get very overwhelmed, but then I realize it's not that bad, I can handle this, and mostly we do take care of each situation with some sort of ease in the midst of some sort of caos.

It starts out like this...

This last Saturday morning was a rare morning where we didn't have a thing going on, so we slept in a bit. I only made it to about 7:30am, since I went to bed fairly early Friday night out of bordem. Shortly after everyone was up. Hannah tested her blood sugar like she does every morning right away. She was a solid 166 at 8:11am. It's a little higher than what she normally wakes up at, but all in all it's pretty good for her. We have been trying really hard to get her doses to keep her in the range of 90-140, and her morning numbers usually are the best and are within range recently. I didn't think much of the 166 on Sat. morning, she can be up or down at any given time. She ate breakfast, and had what she normally does. Just before noon, she jumped to 318. I thought that was odd, and automaticlly jump to conculsions and try to figure out why.....or at least any obvious why's. Sometimes we are just at a loss to why. So I made sure we bolused for her breakfast, and checked her pump. I forgot to check her site and just thought she ate more or something. I was determined to get her back in range, because today was her dance performance. We had a few hours to get it back in range and also get her ready for dance. I had alot on my mind to make sure we got her ready on time, and now added getting her blood sugar levels down, without getting her too low. Didn't want her not feeling well before dancing.

Tested her a few hours after lunch, and she was 350, so her blood sugar went up and not down, it shoulda clued me into something, but I decided to just give her a correction bolus-- no food, and see what she was in an hour or so. Still not thinking to check her site. It still had a day left and was supposed to be changed Sunday night. She tested once more before going into the auditorium for her dance and she was 326-- pretty much no change after a correction. So now it's within 1/2 hour before she goes on stage and I took her into a restroom and finally it hit me hard to check her site....why didn't I think to do this 4 hours ago? and of course it was slightly red, and looked to be pulling out. I knew the insulin was not getting through by the way it looked. So with so little time before she was to dance, we disconnected her pump, ( just left the site in) and I gave her an injection before I sent her off to dance. It's always "a little " stressful to get into these situations at the worst times. Why now!!
So we winged it and she danced awesome and seemed to be feeling ok.

Afterwards we went out to eat at Buffalo Wild Wings, and I had her test as soon as we got there, and she was down to 76. Not terrible, but a little low, we like her to be about 80 at the lowest, ideal is 90-120. So I let her eat a "snack" as we waited a bit to be seated. I always carry fruit snacks or candy for lows. I musta mis judged the insulin injection vs. exercise (dance), it's a fine line sometimes and when I couldn't use the pump to get specific, it's hard with an injection to give her what she actually needs, minus the exercise.
So she got a little low, but it was good to get her out of the 300's too. Just seemed like I couldn't win on this day.

She still was feeling good ( except starving) and we ate supper, finally, which meant another injection for food. I didnt' want to over do the insulin again, but I did give her a snack, which should have brought her up some, so I figured her meal as best as I could, knowing I still wasn't gonna be as precise as her pump woulda been.

We get home, knowing we had to do a site change. She took her old site off like she has done many times before, as I was preparing her pump and next site stuff.
All of a sudden she yells that she needs a paper towel that it's really bleeding. ( where she took her old site off). She can't really see well since her sites go on her butt, but she could see a stream of blood and got nervous. I came with a kleenex, and held pressure on it, but by the time I could get there blood was running down to her pants and on the chair she was by and on her hands.

This has never happened.

We've had 2 sites stop working because of a small amount of blood blocking the cannula, we have a few sites come out before their time, but never has she pulled off a site to have blood come pouring out.

As I held a kleenex on her butt, Hannah was getting increasinly worried that it wouldn't stop bleeding...ever. Seriously, in her 9 year old mind, she thought there was a possibility that it wouldn't stop bleeding. I guess it could happen, but I know blood clots and in time it would stop. As I took the kleenex off to check after a few short minutes of pressure, the blood literally poured out more.
I thought what is happening did she cut herself, it seemed that way anyway.

I suggested she go lay down, so got her to the futon, reluctingly she laid down, and I told her to trust me. I assured her I wouldn't let off the pressure, and I needed her to calm down to decrease her blood pressure, and maybe that would make it stop bleeding. She trusted me and took some deep breaths and tried to be calm, yet kept asking me, what if it doesn't stop? I kept saying, it will stop.

I think at this time we both took a deep breath.

I checked again under the kleenex, and it looked to be stopping or slowing down. I think having her lay down helped too. She had a big bruise from this ordeal, but we got the bleeding to stop. Now we still had to put in a new site, so we numbed up the other side of her butt, and she relaxed more. I had her test once more, as it was now after 8pm, and she was back up to 311. So either she ate too much at BWW, which she did eat alot, or I didn't give her enough insulin-- thinking I didn't want to overdo it again.
Once again diabetes won and I felt defeated.

We did get the new site in and pump reattached after it being off for a record of 5 1/2 hours. That will throw her basil off some being that she got no insulin for that time, except my 2 injections. She did havea bedtime snack and we bolused for that, and I then had to do the midnight check. Got up at 12:30am and checked and she was still 303. Good grief. She got a correction-- and that is a task in itself checking her on the top bunk of her bed, and then trying to dig out her pump while she is half asleep, and trying to stay focused myself as to what buttons to push.
I tested her blood sugar again at 3:30am--- and FINALLY I beat this -- 123-- what a glorious number. Happy Birthday to me!! and back to bed.

She was 113 this morning and was much better all day today. The kids and I went to a movie this afternoon and I even figured out the movie theatre popcorn pretty good this time too. She ate alot !!!

So anyway we are back on track again, but these things always, ALWAYS come at the wrong times. I am thankful for all the good days too. We get many of those as well.

brightest room ever

I painted Hannah's room over spring break the end of March. She wanted the colors orange and lime green. Oh my, I thought....but..... it does look pretty cool and I think after 1/2 hour or more of looking at different shades of orange and lime green, we did a pretty good job on color choice. Looking at those little colors, it's hard to picture what it will actually look like in a room, especially that bright of colors. It took me all week to get her room painted and put back together.

BEFORE:

walls were a deep purple and a minty green color-- it was her "Hannah Montana" room :) she has graduated from Hannah Montana I guess




pink ceiling to a gray ceiling



AFTER:

still want to get some new curtains to replace the bright pink one, and possibly a small rug for her floor to match the orange-green theme. It makes it one of the brightest rooms ever.

Now the Light Has Gone Away-- a hymn of memory

My dear grandma Anita, was called to be with her Lord and Savior on April 23rd, 2005...It's been 6 years already.
My grandma used to sing the hymn "Now the Light Has Gone Away" to my sister and I as a bedtime prayer when she babysat us, in German nonetheless. She even took the time to teach us the german words. I miss her and treasure these simplest of memories. I do recall the german words she so loveinly taught me all those years ago and when I hear this hymn it instantly brings me back to when I was little and my grandma's love.


Couple of videos I found with the song.



Now the light has gone away

Author: Frances Ridley Havergal

Now the light has gone away;
Father, listen while I pray,
Asking Thee to watch and keep
And to send me quiet sleep.

Jesus, Savior, wash away
All that has been wrong today;
Help me every day to be
Good and gentle, more like Thee.

Let my near and dear ones be
Always near and dear to Thee.
Oh, bring me and all I love
To Thy happy home above.

Now my evening praise I give;
Thou didst die that I might live.
All my blessings come from The;
Oh, how good Thou art to me!

Thou, my best and kindest Friend,
Thou wilt love me to the end.
Let me love Thee more and more,
Always better than before.

It only seems fair

If Hannah has to have type 1 diabetes, then so does her dolls. We ordered this cute handmade insulin pump and pump pack for her "American Girl" dolls. It was a sad day when Hannah told me "Olivia and Kit" have diabetes too. We were devistated. We decided that since the pump has been such a help for Hannah's diabetes management, that a pump would certainly make things easier for Olivia and Kit. Hannah thinks it's pretty cool and it only seems fair and another way Hannah can cope.