Pink Life Support

My time has been consumed by a tiny little girl and her tiny pink pump. YES! We switched from MDI (multiple daily injections of insulin) to an insulin pump a Minimed from Medtronic and yes she got to pick the color :) I don't think she would have allowed it any other way.

Now I had mixed feeling about using an insulin pump, and sometimes I still feel that way, but I can tell already that we have chosen the best method for her. She's able to have a little more freedom and not so many bombs of insulin. Or as the pump starter nurse here said "think of it as bullets of insulin instead of grenades". Which means before we would give her a big shot of insulin which tends to sit under the skin and all be absorbed at once which caused Little Miss to have very high blood sugar levels caused from the food she consumed then low's from the big dose of insulin. Now she is able to have the same insulin but with more of a drip affect so her body absorbs it over time rather then all at once. I have noticed a big difference in just the 2 short weeks it has been and while she doesn't' LOVE getting her "sticker" aka catheter or infusion set inserted(every 3 days) it certainly is nice to be able to just push a couple buttons and not have to poke her little body with a needle 5 times a day.

infusion set allows insulin to drip in via a tiny catheter - also allows tubing to be unplugged for water sport aka bath's ;)

And on top of all those good things we also have a live log right there on the pump so we can look at how much and when her last dose was, no more guessing, HEY don't JUDGE, we are insulin giving robots and it's hard to remember when your going through the motions on little sleep....do you remember how many breaths you took at 8:08am?! Didn't think soooooooo :) so now we know we aren't missing things and if I panic I can double check.

Now with all that greatness does come some bad news....mostly I can live with it cause let's face it, DIABETES SUCKS AND I WOULDN'T WISH IT ON MY WORST ENEMY.....MAYBE JOSEPH KONY ;)So the  bad news: well, there's no long acting insulin so if the pump has a kink in the tube or something happens, tough cookies, we are on high alert when there is high blood sugars(which are still happening, we have fine tuning to do) and my daughter is connected to a machine, all be it pink and small but it is still a reminder that insulin is keeping her alive and it isn't a cure but a way to manage her disease which in the past would have caused her a slow painful death! Boy am I glad for technology. We still have to check her blood sugar FREQUENTLY and at NIGHT (There is no true rest for me/us) and Finding a place for the pump to hang out comfortably on her little body is a challenge....hence another reason I am MIA, working on a great affordable juvenile diabetes pump pouch. I always find a necessary reason to sew even in the dark cloud that is diabetes. It's in my blood like a disease ;)


So there you have it! I am missing from blog land and or my friends and family recently due to a tiny pink life saving machine!!! Which I am utterly thrilled to have in my home each and every day!

Making Diabetes Comfortable

We have our insulin pump start fast approaching and to prepare Ava we have been having her wear the pump around to get used to it. The only problem we have encountered is bed time. She has NO desire to wear it to bed and I don't blame it's a little bulky for a little one and she sleeps like a tornado always laying on her front back and sides the one night we tried it I went in after she fell asleep to find it on the floor. Now mind you it will be tethered to her which in my mind causes a bigger issue! Having to replace an infusion set when the darn thing gets thrown across the room ;) so I brain stormed some ideas with her a pocket in her jammies....NOPE, a stuffed animal....NOPE and pocket on her pillow....NOPE a comfy soft waist band to help reduce the bulk....MAYBE plus she can wear it under dress's and what not so really whats the loss?! Nothing! We will keep trying till it works for her but she is pretty pleased with her Yoga band pump holder :D It was super basic so I documented how I did it. Just in case anyone else out there needs one and has a talented friend or mommy to make it!

Yoga Band Pump Pouch Tutorial

Supplies: 16 inches of knit fabric
Velcro the softer the better some can be really stiff I happened to have some cheap quieter softer stuff

Sewing machine and what-nots - Insulin Pump or measurements will help too - if not Ava's is about 2x3 and about 1 inch wide (it's a junior size)

Cut fabric 16 inches by waist measurement plus 3 for Ava it was 16x23" (20+3)

1: Fold fabric in half so it's 8x waist and sew/serge long edge (my sewn edge was the 23 inch measurement)

2: Turn it right side out so now you have a long tube about 8x W (waist)

3: pres seam open or to one side if you serged it

4: fold with seam on the inside of the fold Serge or zig zag stitch the short edges shut - now it should measure about 4x W

Serged short edges

5: place pump in side long folded fabric and mark along the sides from top to bottom to create a pocket so the pump won't slide around the whole waist band

Pins mark where seam is going for pocket

Leave enough room on sides to accommodate pump width

6: Sew the top layers together minus the area you marked for the pump

7: sew from top to bottom where you marked for the pump pocket - mine isn't directly in the middle as I assume she will wear it to the side slightly but anything works it will end up being a tube really ;)

8: attach velcro to the back making sure soft faces in, scratchy out, I did an additional soft strip to make up for clothing and what not being on or off

9: sew velcro to pocket area to hold in pump leave room for tubing to stick out I did about 4 inches on a 6 inch gap.

PS She actually wants to wear it....so far!

DONE! Sorry if it 's hard to follow trying to zip through this to make it to the new story time hour :D Please email me if you have questions :D

Todler Messenger bag turned over night bag

so cute! my pic is a little washed out - no time to edit!

My intention was for Ava to have a small bag she could fill with diabetic supplies, snack and toys. Usually she carries around a used grocery bag ;/ which is fine, she's all re-use, re-duce but she's beginning to look like a little old bag lady these days and quite frankly she needs to be responsible for her diabetic supplies sometimes too! I am SICK of her handing me stuff to carry ALL day! I feel like a bag lady too ;) so I searched the net and came across a super cute bag http://tiptoetango.com/2012/01/16/messenger-bag-tutorial/#comment-522

I should have re-thought the dimensions(for my lil' toddler) but I didn't even question it till I held up the outer sewn pieces to her so now it's an over night bag instead. Which will be great for us when we bum our way into daddy's work things next week in Portland ;) So now this one is finished and I think I will be moving on to the one in my One Yard Wonders book ;p oy!

There is a couple things I didn't do to save time, obviously I didn't quilt the outer layers.....I did however heat and bond my felt and fabric together so it wouldn't shift.

I also didn't do any interior biz :) I did plan on it being reversible but didn't sandwich the handle right :O oops!

Thirdly this WASN'T a time saver by any means!!! I decided to make my own ruffle (I didn't want to have to shower, get Ava ready, prepare a snack and go to the fabric store just for trim, but the ruffle is what really made me decide on this bag....WARNING do get ready, get child ready, prepare a  snack, go to the fabric store  and skip making your own! tee hee! It still needs a button she has her heart set on a heart :) IF you do decide to make your own mine was made very similar to this...http://tiptoetango.com/2011/12/28/ruffle-napkin-tutorial/ I did 2" cuts for the ruffle....I know I just said don't do it but I love these napkins!

This WHOLE bag was made from bit's and pieces of fabric and felt I already had, so this could potentially be a great STASH buster project. Oh and my strap is about 9x33 which is way too long for her but great for what it is now, an Over Night Bag***

the interior of the flap

BIG Thanks to Tip Toe Tango for the adorable inspiration!  http://tiptoetango.com/

Ava's Army 2012

So we had a lot of fun on our last minute JDRF walk to cure diabetes. But you would not imagine some of the team size's just ONE kid can have at these things. I couldn't help but feel a little down about how I hadn't decided sooner that this is about Ava and NOT me! So Andy and I talked about it and we decided next year we are going to go all out. Reason 1: to make this a good experience for Ava and 2: at four years old I think she will be able to appreciate everyone's love and support! So be prepared for BATTLE we are going to do all we can to raise money and help battle diabetes. We plan to do this by creating...."Ava's Army" it will involve some sort of camo(which if anyone knows,that is a huge sacrifice for me;) and we can't call it "Ava's Army" with out a lot of people so please SHOW YOUR SUPPORT and be "prepared for battle" and join our team....I will keep everyone updated as to when we register for next year so you can sign up!!

It's not bout me...

I decided at the very last minute that the family(just the 4 of us) would go to Portland for the JDRF Walk to Cure Diabetes on Sunday(October 2nd 2011)I did not feel like celebrating diabetes at the moment(it's been a tough year)....however I decided to register Ava as a walker because this is about her not me and about awareness, research and a sense of belonging. Ava may never see a cure but I hope that someday no other parent has to live with this disease in their home.

We called about 6 weeks before the event to get into our Dr while we were there and they had to put us on a cancellation list. Well it all worked out they called us Friday (yes the day before we left) to let us know they had an appointment on Monday at 10! Sign me up! So glad we decided to make the trip.

The walk was fun, cold as usual and a rained at the very end. Ava and Logan had a blast we didn't meet anyone new nor did we get the chance for her to make any friends(she is only 3 after all:) but I would say it was a success....as for next year we have BIG plans....Ava's Army get ready for battle!

The "Honeymoon"

So there we were finally figuring out Ava's diet and insulin getting into a routine and starting to see consistent blood sugar levels. When for no reason we can figure out her blood sugar starts dropping dramatically overnight. so we call our Dr and they advise us to change her lantus dose (this is her long acting insulin that she gets at night) to the morning to help the drop at night. We did this for a couple of days with NO improvement. Ava was waking up with BS in the 50's or even 40's, luckily she was waking up. I was terrified at night taking her blood sugar at 10 pm (our normal routine) then waiting and taking it again to see if it was going up or down. In the cases where it was dropping we were having to get her up and get her some apple juice to get her BS up again. So we call the Dr again and for the next week or so we start to cut back her insulin to the point of giving her one shot a day. Now from what I understand the honeymoon period it greatly welcomed, but in our case we wanted it to GO AWAY....our daughter was constantly fighting low blood sugar (hypoglycemia) I was not sleeping, fearing she wasn't going to wake up. We spent 2 weeks with out any insulin which really was devastating to the progress we had made. We were so new at giving shots and finally got in to a routine that Ava was OK with so I knew when it was over (however long that would be) that we would have to start over again! We also happened to have our first REAL Dr's appointment in Portland at Legacy Emanuel Children's Hospital in Portland(yes we travel to Portland for Ava's care as there is no pediatric diabetes specialist near where we live). So all seemed to be going well her A1C levels seemed to be improving and again we were so lost we weren't sure what to ask :( This wasn't the honeymoon period that we had hoped for. There was a lot of grief that we had gone through and a part of us had some false hope maybe it was a fluke and there was something else going on NOT DIABETES. But we had done our research and knew better then that. This none insulin lifestyle only lasted 2 weeks and as quick as it came, it left. Ava was spiking up into the 3 and 400's almost over night. Dr Snyder was surprised at how quickly the honeymoon came and went. We were relieved and prepared to start over. We were advised to call every day to adjust her insulin. So far we have been having a lot of inconsistent BS levels and Dr Snyder said that basically it is as if she is newly diagnosed(boy does it feel like it) The good news is we haven't been below 100 but we have seen 435 which prompted and emergency call an a quick fix. I am lucky to say that Ava responds well to insulin(as I am sure most diabetics do) and now that we have been back on for a a few days she seems to be getting better at accepting the fact that this is her life.

ICU and Beyond

Because of Ava's age we were admitted straight to ICU. It is a scary place to be but once again Ava was able to be the shining light(people came by our room just to see her smile!). We were all terrified, my son was left at my in laws. Our new puppy was home alone and we had no clue about diabetes. So here we are not knowing anything not even what to ask while our daughter is being hooked up to all sorts of tubes and monitors and still NO FOOD. They told us if her BS(blood sugar) is lowered to quickly it can cause brain hemorrhaging! Scary. Luckily she hadn't eaten and when they were about to start the insulin drip her BS level's had already started to drop. So she was given an unknown (to us) amount of insulin and monitored all night long. Andy(the hubby) and I had very little sleep we cried a lot and grieved the loss of our daughters "normal" life. We still had no answers and were told we could be in the hospital for about a week! Ava reacted great to the insulin shots and was fed breakfast the next morning and later that day we were moved up to the pediatric floor. We got to see Logan(our son) that afternoon and he seemed to be ok with all that was happening at this point. We spent all of Memorial weekend in a small hospital room learning the basic care of our daughter, diet, blood monitoring and insulin. We were told we wouldn't leave till all our questions were answered and we were able to care for her at all times. Andy and I picked it all up quickly (we were terrified, but had to do it for Ava) there were a lot of ups and downs as there always is with a newly diagnosed child and for Ava to be so young is considered fairly rare. By Sunday afternoon were were ready to go home after a hefty bill at the pharmacy we had more diabetic supplies then we could have ever imagined and some (emergency insulin) we will hopefully NEVER have to use.
We packed up our little girl her amazing pile of gifts, balloons and bears and took her home. It was good to be home but none the less terrifying. We were ready to get on with our new life and get this under control. It wasn't easy, still isn't and we continued to struggle again once we entered the "honeymoon" period....

How we found out Ava was truly Sweet

It was April 2010 the day of her 2nd Birthday Party that I started to notice something wasn't right with Ava. She doubled over at the window in her sweet Minnie Mouse birthday outfit complaining of tummy pain. I hugged her tight and asked if she was OK, she sat for a moment pondered the question and said "Ava OK". We seemed to get by with bizarre occasional tummy pains and headaches for 2 more weeks(chopping a lot of it up to potty training and to her new sleep schedule). About mid May we noticed some excessive bed wetting, and more sleeping. It started to really bother me that she wasn't being her spunky, sassy self. At this point I started to wonder if it was a food allergy or growth spurt. 10 more days go by, my mom (my mom is our day care provider,luckily!) and I are really bothered by her behavior, excessive thirst, lack of appetite, lethargy, soaking through her diaper,sheets and PJ's at night that I decide to take her in thinking it was a food allergy or perhaps something to do with potty training? May 27th 2010 I decide to stay home with her for the day as she wasn't appearing to feel well at all and her appointment was that afternoon. By noon of that day she had drank a GALLON of fluid(no joke!) and begging for more. I was anxious to get her in and started to Google all of these bizarre happenings and came across the symptoms of toddler diabetes and wouldn't you know she had EVERY one of them. I was taken a back and tried to forget about it and see what her pediatrician had to say. We get there explain what's been happening to the nurse and with out a breath she decides to test her blood sugar and sure enough it was 440 (and that was with out food for about 4 hours) We were sent straight to the hospital and that is where our journey began.