Anyone want some?

me neither, after I saw my husband on fire, I declined. Truthfully after I read the package I declined.

Is he tough enough-- am I ?

Sat. April 17, 2010. Ridder Arena -Minneapolis. Bailey has been playing with a group of Litchfield kids in Showcase Hockey this spring. The games are set up in the Twin Cities and surrounding cities. We get both our games on Sat., to make it one travel day....most of the teams are from the area and play one game on Sat and one on Sunday.
This is the rink on the U of M campus where the women Gophers hockey team plays.
With the exception of last year, he has played spring hockey since he was 6...in fact the first year he played Showcase, they had a game set up at Ridder Arena. So six years later he is back on Gopher ice. When he was 6, of course he thought it was so cool...now that he is 12, I guess the coolness of it has worn off and he wished he was playing at Mariucci Arena instead, because that is where the men play. :)

The arena was big, but Bailey's game was not big. They lost 0-4, in a very frustrating loss. The game got a little out of hand towards the end, lots of checking and pushing.

With the team only playing together once a week, it's always tough to come together and play as a team. The team is a mixture of peewee age kids, half the team will be 2nd year peewee's next year (which will be Bailey) and half played squirts this last season, and will be peewee's in the fall, so they have never been able to check yet. It's a learning expereience for them yet...it's been hard to blend those kids into a team...but that hasn't stopped Bailey from giving it his all.

Bailey has had plenty of body aches because of his effort. The first weekend he couln't even move the next morning, his whole body was sore. In subsequent weeks, it has been specific things....mainly his ankle, his elbow, shoulders, knees, and now his jaw. I think after a week of rest it all feels better, but then he's back at it again on Saturdays and reinjures stuff. This week is has been his ankle and his jaw that are pretty sore still. Hockey is definately for the tough. Is this how he is to be toughened up?? This mom has to look away still, when he gets checked and usually end up being shocked and saying something like OH MY GOSH--AHHHH> I think I need to be toughened up along the way as well.

BAILEY IS #11

soon to be pumper

We went to the pump prep class back on March 11, and Hannah was able to leave there wearing an insulin pump. It was just as a trial, so she knew what it felt like to wear this 24/7.
She disliked the insertion part, where the nurse showed us how to put in the catheter, she held still and it was over in a second. It was placed in her upper butt area. That is connected to tubing, which is connected to the pump and eventually the insulin. She wore this for 3 days, but wasn't getting any insulin through it yet.

As the idea of getting the pump for her was brought up over the last few months, she was againest it. She didn't want nothing to do with it. Her doctor has suggested we look into it for better insulin control and to help lower her A1C level. So we have been. After she had the pump on, which I thought would deter her more into not wanting it, I think she changed her mind and even kinda liked it, plus the thought of less shots in a day is becoming understandable to her now that she knows what the pump is all about.

We should be recieving her pump in the mail by Friday, along with all the supplies we need for it. The next available class to start on the pump is not until May 6. That is what has seemingly been the longest process in this, is getting into a class that is not full already. So May 6 is when we will go to the Diabetes clinic in St Paul and get started on this thing they call pumping. She then gets a follow up 2 weeks later. I'm hoping this is the best thing for her, so that she can maintain an active and normal life.





The pump



The infusion set

JDRF Walk for a Cure

We experienced out first juvenile diabetes walk at the Mall of America on Saturday February 27. It was not something I ever pictured myself being a part of, but since Hannah was diagnosed with type 1 diabetes, about 15 months ago, it just felt natural to be a part of everything I can to help find a cure. Really, diabetes is a huge part of our life now. Hannah has had to be one strong girl, and sometimes this whole thing has been really hard for her, for us. She has accepted what needs to be done, but that doesn't mean she likes it. In fact the word diabetes or talking about diabetes in relationship to her makes her scared, she tries to avoid the attention.

The Walk for a Cure, brought out something in her I haven't seen yet, and I think she didn't feel so alone, she felt like she belonged. After having to get up so early for the walk, she was a bit crabby, but as soon as we got to the mall, she was happy, bright and bubbly, and had lots of energy. Through all the excitement and energy though, it caused her blood sugar to drop and then suddenly she didn't feel so well. We did what we needed to do and got her back on track. I think she enjoyed the day especially the part where grandma and grandpa took her to Build a Bear and grandma Nancy took her to American Girl.

Our team, "Hannah's Hopeful Hearts" were proud to raise about $2300 for JDRF. There were about 20,000 people at the mall on walk day and it felt amazing to be surrounded by so many hoping one day that a cure can be found. Alot of families and teams had t-shirts to identify their loved one with diabetes. One set of shirts made me laugh a bit, it said, I'd rather kiss a pig, than take insulin shots for the rest of my life. I dont think we'll go down those lines, but we hope to plan on designing a shirt for next years walk.

All in all the morning was fun, but mostly it just made me so thankful for JDRF and all the dedicated people who hope a cure will be found. I pray that God's will be done with or without a cure, we will move forward. We will put our focus and praise to Him who created Hannah and on all the blessings He has given to us. Instead of focusing on Hannah as a diabetic, I will not let this define her life, we will put all our trust in God that He will love and take care of her..... as Hannah, living with diabetes, a child of God.

On March 11 we will take the next step in getting Hannah on the insulin pump, as we attend the pump prep class. I really believe this will be good for Hannah although Hannah doesn't see it yet. To her right now it's just another focus on her diabetes, more changes, and different hurts and anxieties. I hope it goes well.


Team Hannah's Hopeful Hearts 2010

Year 1 with diabetes--2010 Walk for a Cure support slideshow

turn volume on, music on blog is also for slideshow.

Bailey 12th Birthday--- Steve's 35th Birthday

Bailey got new hockey gloves for his birthday-- Jan 29


We went out to eat at Space Aliens...


Supposed to be "12 fingers" ever since he was 3 we had him hold up fingers and take a picture, now that he doesn't have enough fingers we improvise, probably should have held up the one on his right hand and the 2 on the left, oh well backwards works too. He's also not so proud to hold up fingers anymore anyway. :)


Bailey and dad


His birthday ice cream


Snow storm on Steve's birthday-- Feb 8


birthday/super bowl cake-- yup 35 candles on there for Steve


Bailey with the birthday/super bowl cake--Feb 7


Bailey and dad


Blowing out the candles!! they got em all.

a year has passed

Hannah had her 1 year diabetes check up on Jan 14. Hard to believe we've been on this journey for a full year, and yet when I look back, it was one long year. There have been many struggles, it really has changed us. I'm not sure how things would be today without diabetes in our life, but it is what it is, and we can't change it, for now. Hannah has accepted the fact that this is a part of her life, but not without continued frustration. There is not a day that goes by that she is not angry, frustrated, and physically hurting. I want her to grow to be physically strong, but this really has set her back. She has alot of emotions to work through everyday, and that part I don't think she is handling very well. She has had alot thrown at her at age 7 and 8. I have difficult days in dealing with this and understanding, I can only imagine how she is feeling. God allowed this in our lives because we CAN handle it, to bring us closer to Him, by laying it all in his hands, and we will be stronger because of it. I hope one day Hannah will not be afraid of diabetes and can focus her energy not not being angry, and be of support to others with diabetes. We also pray and hope that one day everything will be fine, and a cure will be found.

Hannah had some blood drawn at her appt. for some yearly lab work. That also was not fun for her, but she held still and was reassured that it's ok to cry......so she did!!!
Everything came back normal, besides her A1C level is elevated which we knew from the finger poke. We still don't have her blood sugars under good control, which is where the insulin pump comes in. It will give her smaller, more precise doses of insulin 24/7, which should help her A1C come down. We will get going on that very soon.

She continues to have tummy aches off and on pretty regularly, so we took a few steps in that direction to determine the cause. Her labs on celiac disease came back negativ, which they did last year so I didn't think that was the cause-- had a very low number (0.5), which in this case I believe the lower the better. Celiac is very closely related with diabetes, and I hope we never have to deal with more eating control, counting carbs is plenty. Thyroid and cholestrol levels were also normal. Kidney function is not tested for, until further down the road. In the attempt to solve another issue we believe we also found the cause of her tummy aches.

Over the past year Hannah has had burning while peeing, and most recently itchiness. It comes and goes and we've been to her family doctor three times with this issue. She was never examined, had her urine tested twice, once it was told to me she had a bladder infection, and when it reoccured a few weeks later, her urine was fine. It was suggested then that she was most likely constipated and needed more fiber along with some Miralax. We tried that for a few weeks and I guess I didnt think that was the problem, so I didnt keep up. The next time I brought it up, was at her 8 yr old check up and I was told to keep the area dry ( use powder if needed), and can always bring her in to check a urine-- once again she was never looked at. In between those visits, I had her endocrinologist look at her last April and she thought maybe yeast, and to use destin and monostat creams. We've been doing that for about 8 months...with no real longterm results, and when I brought it back up to her endo doctor a few weeks ago, she looked and still thought maybe yeast, but decided to refer us, after I said the cream wasn't helping long term and this has been going on a year.

So off we go to Minneapolis to the pediatric gynocologist the next week. We were referred to Children's Specialty Clinic's, Dr Rachel Miller, who upon examining Hannah informed me that she has a condition called lichen sclerosus, which is a chronic skin condition, causing itchiness, lesions, and scarring. (if urine hits the affected area can also cause burning) and if not treated, can cause significant scarring not to mention how uncomfortable that is. We got some steroid cream to apply daily, twice a day at first. It will come and go, and it's something we'll have to keep an eye on until puberty, maybe her entire life. Her immune system is the most likely cause. She also informed me that yeast takes more high levels of the hormone estrogen and in a girl her age, is very uncommon to have much of. Hannah seems to be taking the news well and doesn't seem to mind we have another thing to take care of, she just wants it to not burn and itch. They also took an x-ray of her tummy while we were there, because along with this condition, it can bring about constipation. So we think we have her tummy aches figured out through the xray, as proof. We are trying more fiber and Miralax again. She is not good at drinking much at a time, so the Miralax seems to be going to waste, but she is getting some, she bearly drinks 4 oz at a meal time, and that may even be playing into the constipation, not enough fluids, but I can't force her to drink, so we keep trying.

We are excited aboutour first JDRF walk for a cure coming up on Feb 27. It will be a good time surrounded by those hoping for a cure someday.