Wednesday, November 24, 2010

Thankful...

March 8, 2010 the storm of type one diabetes came blowing in to my world and knocked me on my butt.  There have been times over the past eight and a half months that I thought that storm was going to swallow me whole.  As I have watched my little girl have to deal with so much stuff her little mind and body should not have to go through, I have grieved.  I have grieved the loss of her perfect health and who she used to be, I have grieved the old carefree world that used to exist inside of our home.  I have also learned that in the darkness there are so many blessings.  Today I want to focus on those blessings. 

In the 1920s Dr. Fredrick Banting discovered insulin.  Insulin is what keeps my baby alive and well.  This is a blessing beyond words.  When I get to Heaven he is one of the first people I am going to look for and thank for all he did while he walked this earth.

The nurses in the ER at Legacy and the bear they gave Bekah were another incredible blessing.  They had amazing bedside manner and epitomized what it is to be a care taker.  They helped us transition from the numbness that ensued with the doctors words to the reality of taking and ambulance to the PICU in Portland.

The PICU nurse that we had was in my book a saint.  I'm pretty sure she was an angel in disguise.  I can't say enough good about her and the blessing that she was and continues to be in our lives as I think of her often when I go in to check Bekah's BG in the middle of the night and thank God for giving her the wisdom to keep our baby alive.

My sisters have stepped up in more ways than I can count.  They have been my rock.  We are all three closer now than we have eve been.  They have always been blessings in my life but I think I could make an endless list now of the many ways they have blessed me in the past 8 months.

There was another darkness that happened in the midst of the darkness we went though at Bekah's dx.  Our church basically turned their backs on us.  We asked for help and none came.  I had Bekah in the hospital, my husband with vertigo so bad he had to be taken out in a wheelchair, the ambulance at my son's school because he had chest pains etc.  Once home from the hospital I asked a team to come in a pray over our house (I had been a part of the prayer team for years) and no one came.  The blessing in that was that God showed me in those moments that although people will fail you time and time again that He NEVER will.  He was my strength and my peace and the only reason I stayed sane through it all.

My friend Bonnie and her daughter E reached out from day one.  E was dx with T1 at the age of 14 months and is now 7.  Bonnie has been through it all  and has been such a great encourager and friend through the rough winds.  She is a huge blessing in my life!  E has helped Bekah feel "normal" and be ok with D.  She has been a great friend to Bekah and the girls have so much fun together. 


About a month after Bekah's dx I found the DOC.  So many of you have brought me up and helped me navigate through the storm.  you have encouraged and loved on me and that is one of the biggest and best blessings that have come from D. 

In August, we discovered what pumping insulin was like.  It has given Bekah more freedom to be a kid and enjoy things that other kids enjoy still giving her glycemic control and in many cases better than shots ever did.  I love that it comes in pink and love the remote feature. Animas Corp you are another blessing that we have found along our journey!

Have I told you that Bekah has an amazing teacher?  She does.  Mrs. M is one of the biggest blessings that I have come across.  She takes care of my little girl as if she were her own.  She communicates very well with me either by texting or calling me with numbers that are concerning and she seems to just know when a few more carbs are needed to keep Bekah's BG up.  She is a direct answer to prayer.  (she also prays for her students)

The secretary at the school helps with Bekah as well and is a very kind carinf person that does a great job.
 That is a blessing!

Bekah's endo team is also an amazing blessing!  They never talk down to us and are there to encourage and help us do our best at taking care of our daughter.  The CDE that we see is also a T1 and just a lovely person.  She is kind and full of positive energy.  I always leave feel great about how Bekah and I are doing at taking care of D when we leave her office.  Miss H you are a blessing in our lives as well!

I could go on but I will stop there for now.  D has changed us, our family is tighter and we don't take things for granted that we used to.  I am thankful for the many things that God has brought into our lives and blessed us with as a result of fairing the storm of D. 




Tuesday, November 23, 2010

Alexis wants to know...

My fellow D-mom blogger, Alexis had a few questions a few weeks ago (sorry I'm a bit slow at getting to these things, trying to spend less time on the computer is good in many ways but I do get behind with my blogging)


For informative purposes: Rebekah "Bekah" age 7 Type 1 since March 8, 2010

When did you guys start pumping? August 2010 (she rocks the animas ping in pink with a pink and purple camo skin) We also use the pink straight in insets. 

What do you use to change sites? Whats your "process"?  Bekah pulls off the old site (sometimes she needs an alcohol wipe to help) while I get the cartridge ready, she places a new site (no cream etc) while I prime the tubing etc,  we plug in and prime the cannula then she gets to pick a prize (I keep a box of silly bandz, sugar free gum, chap stick, nail polish etc.)


How often do you check ketones? 2 or more 300+ BG readings or illness
 

When do you do an unscheduled site change? 2 or more 300+ BG readings or if it gets pulled off

Whats your childs target? 120 during the day and 150 at night


What was your childs last A1C? 6.8


What kind of strips do you use? One touch

Which do you prefer? we only used the TRUE system before One Touch and it did have some advantages in that it sort of wicked the blood up better and we had less errors but I love that with One touch I can keep glucometers everywhere becuase the minis are so easy to come by and we get samples for free at the endos office

What kind of Peanut Butter do you use? My hubby and kids are JIF creamy only fans I can't get away with buying anything else for them but I prefer Almond butter for myself

Do you allow juice when not low? I am phasing it out a little.  It is the one food that I said I wouldn't take away from Bekah when she was dx because she has always been a juice lover .  I have found lots of carb free options that are taking the place of juice like sugar Free Hawaiian Punch and recently I found a juice box at Costco that is both fruit and veggie that she loves (Fruitables) I don't use these to treat low BG but they are portioned at 15 carbs

Do you still check your child at night? Yep at 12AM and 3AM

What is your rule on sweets? I figure sweets are something that she will have to deal with her whole life and I don't want to make them taboo, causing her to think she has to sneak etc so we do treats in moderation.  I put a Hershey's kiss in her lunch everyday.  I would do that if she didn't have D.  I want her to realize that sweets are ok and try to keep her from binging on holidays because she has felt deprived of sweets. 

Regular pasta or whole wheat? We use whole wheat

What about veggies and fruits? My kids could live on fruit.  I am trying to get some good habits to stick so we have a sticker chart and the kids get a sticker for every three servings of veggies they eat.  I keep a veggie tray out for snacking and try to serve at least 1-2 veggies with dinner each night. 

White bread or whole wheat? We do both and go back and forth (I only eat wheat but my hubby will only eat white) the kids always have the choice of which kind they want.

Do you use glucose tabs? yes but not often

What do you use to treat lows? Starbursts, smarties, jelly beans, juice (JJ 15 carb boxes), glocose tabs on occasion

What does your child use to hold their pump/cgm?  We have a zipps, a tummietote and a too sweet pouch (a girl's gotta be able to mix and match with the outfit of the day)

Now for some great pics of my hero:





 





Wednesday, November 17, 2010

Control

I thought it would have happened sooner and we have seen bits of this over the past 9 months,but it's in full swing now- Bekah is exerting her need for control.  As a mom this is bitter sweet.  I love that she is finding her voice and putting her foot down.  I love that some spunk is surfacing and because she has a disease that requires fight and some days a hecka lot of it, I love seeing the fight in her coming out. I do however hate the reason that all of this has come to be and hate that she has to deal with the "stuff" that goes along with D. 

Bekah is not being naughty, it's really just normal kid antics but for her is a bit out of the norm.  She doesn't usually rock the boat or question authority and is quiet and dosile most of the time.  What has she been doing, you ask.  It's things like insisting on fruit leather only (and only one at that) for breakfast every morning for the last two weeks.  If I try to sneak in a granola bar she puts it back or make her eggs, she wont eat them (she knows what has carbs and what doesn't).  At first I worried about her BG going low at school but then I made sure her basals were good by letting her sleep extremely late one Saturday morning and if she gets hungry there are cheese sticks in the fridge in her classroom.  Bekah chooses not to eat carbs for an afternoon snack because she doesn't want to do another BG check.  Some nights she sneaks off to bed with out checking her BG first (I just go in an hour later when I know she is sleeping and get the number I need).  She sits with a pouty face in front of her meter in the morning for a loooong time before she will check (I just ignore her).  She hides her meter as it is counting down to the BG number so "it's a surprise".  Bekah locked Jason out in the garage "as a joke" the other night.  She will say no some times when I ask her to do something. Like I said, totally normal kid stuff but knowing her as I do, I know this is not her normal self.  I do believe that D has changed her as much or more than it has changed me so this may be her new normal. Under the need to control, still lies my sweet, kind little girl so I haven't totally lost her but, she is changing. 

I love psychology and watching human behavior and understand that this is not a time to "fight" with my daughter nor are these behaviors that really need to change that much.  As she exerts her need for control she will find who she is.  My best guess (I'm not a psychologist) is that she is searching to find her self in the midst of D and is not ok with D being in control.  If that is the case then I'm just going to sit back and cheer her on.  I have been letting her do more and more self care on her own.  She loves doing the site changes (the insertion part at least) and writing down her numbers and carb counts for lunch on her daily care sheet.  I let her punch in the numbers on her meter when ever she wants to.  It is difficult for me to release the control because by being in control I have a false sense of security and feel like I have the upper hand on D.  I know how it kicks my arse sometimes and I don't ever want her to feel like that.  I am her mommy and I need to take care of her. 

Bekah is older than most of her classmates because with a late July birthday and extremely shy personality, I felt like she would fare better if we waited until she turned six to put her in kindergarten.  It was the best decision ever.  I feel like now, in some ways Bekah is many years ahead maturity wise.   Even though I have seen Bekah do it, I can't wrap my mind around any of the kids in her class giving themselves shots or being keenly aware of carbohydrates in what they are eating.  It's just not normal six and seven year old stuff. 

I wrote this post for a few of reasons, one- it's where we are right now, two- I needed to vent here so I can work through the emotions this brings up with out it impacting my daughter, three- a newly dx family might come across this and realize that the behaviors (their child's need for control) are normal. 

Monday, November 15, 2010

test strip miracle

I am so thankful that God's mercies are new every morning!  After my woeful post yesterday, my husband decided that we needed (namely I needed) to get out of the house.  He knows me well and knew it had to be a family outing to get me to go anywhere in my state of mind.  We decided to hit our local mall for some window shopping.  We walked, dreamed, people watched and played (our mall has a great play area for the kids).  We didn't buy anything.  It was nice just hanging out as a family.  Having a teenager and a toddler makes family outings a challenge.  What will entertain the toddler is not going to keep the teenager engaged and visa versa.  We even got to see Santa.  (It's not even Thanksgiving and yes indeed Santa was at the mall) For the first time in her life Bekah actually talked to him.  She was amazed that he would know that she wanted monkey pjs (good guess Santa). 

We had been plugging along all weekend with BG checks and I figured if I needed to pull out the strips from my stashes (the ones JDRF sent as a sample with a different meter etc) then I would, but I was not going to stress and keep count of exactly how many strips were left.    We use the onetouch ultra strips and they come in pkgs of 25.  I had opened the last bottle on Friday.  I was praying all weekend that God would stretch those strips out to last until Monday when I could pick up more from our endo (our insurance won't pay for more until the 20th).  I did the midnight check last night and when I opened the bottle of strips I almost fell on the floor.  It was FULL! Like the fullest I have ever seen a bottle of strips.  I didn't count but it looked like there were 30 strips crammed in that little bottle.  At 10 checks a day we should have been at -5.   God is so good! 

This morning I traveled through the woods and over the river to our endo's office and I was able to get 6 sample bottles of 10 strips each.  As I was walking back to my car it hit me that I didn't need to keep 50 (2 full bottles) stashed at school, I could just keep 10 in each location (the classroom and office) and that would suffice.  (Giving me 30 more strips for home) My swelly brain is slow sometimes. Thanks so much for the kind comments and offers to help.  If after reading this, God still has it on your heart to help, send me a PM on FB.  I never want to be a taker and I know how precious each and every test strip is.  I also know that if God calls us to help each other then I need to swallow my pride and allow others to help us because the tables will turn and I will get the chance some day to be the helper and the giver. 

This experience reminded me of one of my favorite Bible stories.  From the Message version of 1 Kings 17

"7-9 Eventually the brook dried up because of the drought. Then God spoke to him: "Get up and go to Zarephath in Sidon and live there. I've instructed a woman who lives there, a widow, to feed you."
 10-11 So he got up and went to Zarephath. As he came to the entrance of the village he met a woman, a widow, gathering firewood. He asked her, "Please, would you bring me a little water in a jug? I need a drink." As she went to get it, he called out, "And while you're at it, would you bring me something to eat?"
 12 She said, "I swear, as surely as your God lives, I don't have so much as a biscuit. I have a handful of flour in a jar and a little oil in a bottle; you found me scratching together just enough firewood to make a last meal for my son and me. After we eat it, we'll die."
 13-14 Elijah said to her, "Don't worry about a thing. Go ahead and do what you've said. But first make a small biscuit for me and bring it back here. Then go ahead and make a meal from what's left for you and your son. This is the word of the God of Israel: 'The jar of flour will not run out and the bottle of oil will not become empty before God sends rain on the land and ends this drought.'"
 15-16 And she went right off and did it, did just as Elijah asked. And it turned out as he said—daily food for her and her family. The jar of meal didn't run out and the bottle of oil didn't become empty: God's promise fulfilled to the letter, exactly as Elijah had delivered it"

Sunday, November 14, 2010

WDD

Today is World Diabetes Day.  I had every intention of attending the Circle in the Square in Portland but today I find myself in the funk of all funks.  I could seriously barely drag my body out of bed.  I don't know really where it came from a bunch of stuff piled up at once I guess. 

We lost our biggest client last month, having been dealing with church hurt, trying to figure out how to parent a teenager, an almost teenager and a very strong willed almost two year old not to mention a child with D, family issues (extended family) etc.  Then on Friday I opened the last bottle of 25 test strips.  I searched everywhere for more.  This could not be right!  I checked and double checked my calendar and we were 8 to 10 days away from the insurance company allowing us more.  I called the endo's office for a prior auth for more to get us by, called the pharmacy to see if it had gone through, called back the endo's office,then the pharmacy again.  I finally got a call at 4:30 saying that 300 is the limit, we can't get even a prior auth for more.  I have 25 test strips to get me through 8 days and have to decided between buying more test strips and putting gas in my car or paying a bill (yes we live that tight).  Luckily the medical assistant told me that if we could make it to Monday that she would have some for me at the front desk.  Bekah had 3 lows at school on Friday.  3 lows = 6 test strips, we had already checked 2xs that day so now we are down to 22 to last 2.5 days.  I know we will have what we need, I do have about 10 strips that came from JDRF in the backpack with a different meter. (I also have a few that I keep to check my BG because I had gestational D with David and if it comes back as T2 I want to catch it early) It's just stressful and I really didn't need more stress right now.  I have a hard time with insurance companies dictating how many times a day I should test my daughter's BG.  I do what is necessary to keep her safe and healthy.  I used extra strips for basal testing and they should allow for this.  I am usually able to keep depression, which I struggle with off and on, at bay but today it's rearing it's ugly head and my joy has been zapped.  I cried myself to sleep last night and have no energy to do anything.  I will force a walk in (sporting my blue JDRF walk shirt of course). 

Happy World Diabetes Day! 

Friday, November 12, 2010

Basal testing

I must apologize for my absence this past week or so especially for D blog day.  I have been trying to keep up with all of your blogs.  I have honestly been trying to spend less time on the computer.  As a mom I feel like I owe to my kids to tell them to do as I do not just as I say.  I am a computer addict and I want to set a healthier example to my kids.   D blog day, I just really had nothing of value to add.  You all articulated so well my heart and the six or sixteen things I want people to know about diabetes.

A couple of weeks ago, I decided it was time to do some basal testing.  It had been about 8 weeks at that point since Bekah had started pumping and I felt like I could now add more basal rates into the mix.  Both times I was able to get about a 12 hr stretch in.  For those of you not in the D world, a basal rate is the continuous drip of insulin that the pump delivers.  Bekah's pump has a basal rate setting on it and allows for up to 12 different basal rates based on her insulin needs at the time.  Ideally the basal rate should keep her blood sugar steady with out any food or extra insulin needed.  To do a basal test I don't allow her any carbohydrates for a set amount of time.  Fasting during a basal test provides the most accurate results, but I don't feel like it's a good idea to make a 7 yr old fast plus it feels mean.  I bought her a bunch of sugar free jello so she felt like she was getting a treat and was hopefully able to focus on that instead of feeling like a lab rat.   

Once I got past the idea that I was using my daughter as a "science experiment", I was fascinated by the information that I got.  The test we did overnight, amazed me at how steady she stayed.  Over 12 hrs, checking BG levels every 2, we got all numbers in the 130s.  We started at 6:15 PM and went through 6:15 AM the next morning.  She had no food so this was very accurate and made me feel good knowing at night she was holding steady. 

The next one I did began in the early morning (over lapping the night test) and went through mid afternoon.  We started around 4:00 AM.  Again blood sugar numbers held steady until 8 AM when we got a 40 point jump.  I did this test on a Saturday and let her sleep in as long as she wanted so that I could go as long as possible with no food in her system.  I think she got up around 9:30.  The next move in BG level was at about 1:30 when she dropped down below 100. 

I still need to test the late afternoon early evening rate.  I wanted to wait for the changes I made to settle before doing another test.  I will probable do it this weekend. 

For inquiring minds Bekah's BG rates are as follows:
12:00 AM .175
7:00 AM .200
1:00 PM .150
5:00 PM .175

Since Bekah started on the pump, I have gotten a few "wow she must have it really bad if she has to have a pump" and "shots weren't working for her?".  It's not that shots weren't working and there is no such thing as having  T1 diabetes really bad.  It is what it is, kind of like being pregnant.  You either are or you aren't.  I found this great article today that backs up why we chose pump therapy for Bekah. It is a personal decision for each PWD in how they choose to manage D.  Sometimes finances play a big roll in this decision, I am so thankful that although we are a family of humble means, that my children have great insurance that covers the pump and supplies for Bekah.   

Thursday, November 4, 2010

100

So for my 100th post I thought I'd do something fun!  I went through all of the 367 comments on my blog and decided to send the top three commenters a gift.  You, my friends, have encouraged me and held me up in some pretty dark times.  Your comments mean the world to me.  Just knowing you take the time to read my crazy posts as I attempt to be a pseudo-pancreas means a lot. Thanks so much for the love (in no particular order): Barbara, Bad Pancreas, K2, Bowie Chaser, virtual, Johnrayy, e, MW Dela Vega, Wordz of Life, my sweet girl, David and Jackie, Leighann, Loraine, Philothea, Tracy 1918, Tracy crazy pancreas, April Ann, Laura, Lora, Karen, Jen, Danielle, Pam, Penny, Cindy, Joanne, Donna, AJ's Mommy, Reyna, Sarah, Miranda, Amanda, Connie, Misty, Meri, Nicole, Jessica, Hallie, Heidi (D-tales), Denise, Rachel, Heather and Wendy.

The winners are: with 34 comments- the Portuguese Princess herself Reyna of Beta Buddies, with 36 comments- the gluten free "candy heart" of Wendy from Candy Hearts, and with 46 comments- the amazing Meri of Our Diabetic Life.

Email me your address at timm.heidi@gmail.com so I can get your gifts in the mail.

Oh I almost forgot, your gifts will be a box of my favorite fall treat.  (I believe it comes in decaf if you are that kind of girl)  It's a little bit of the NW sent with love to you!  

Wednesday, November 3, 2010

Bekah's meme

We were never tagged when this meme was going around but I saved the questions just in case one day Bekah felt like answering them.  My girl is a woman of few words especially if questions are directed at her.  She sort of answered a few of the questions last night, mostly she "doesn't know."  It is very honest and Bekah style so I decided to post it today. 



What is your name?  Rebekah

How old are you? seven


When were you diagnosed with diabetes? I don't know

Do you remember what happened when you were diagnosed or how you felt? I felt tired and really thirsty

Do finger pokes or shots [or site insertions/infusion set changes] hurt?  sometimes

What is a high number?  200 or above


What is a low number? 70 or lower

What does low blood sugar feel like?  hungry and shaky

What’s your favorite way to treat a low?  candy


How do you feel when your blood sugar level is high? I can't tell

What’s the best thing about having diabetes?  I don't know

What’s the worst thing about having diabetes?  I don't know


Do you worry much about diabetes? no


If one of your friends were diagnosed with diabetes, what would you say to that friend? I don't know

What’s your favorite food? Mac-n-cheese


What’s your favorite snack? Cheese and crackers


What’s your favorite low-carb food? turkey peperoni

Do you know what a blog is? no


Do you know that I blog about diabetes? yes


Do you care? no

Why do you think I blog about diabetes? I don't know

What’s your biggest wish?  I don't know

Who’s your best friend? J (a boy from her class)

What do you like about him/her/them? I don't know (I said "is he nice?" she answered yes)

What’s your favorite thing to do? Color

Do you have a hero? no (I don't know)

What do you want to be when you grow up? I don't know


Who’s your favorite person in the whole wide world? Shoulder shrug


Are you afraid of anything? yes, worms(shudder)


Fill in the blank. (Your name) is___________. There is no right or wrong answer. (I couldn't get her to answer this one)

Monday, November 1, 2010

Proud D-mom moment

My little gal is camera shy and wouldn't let me get a photo.  Bekah did her very first site change on her own!!  Ok I did the technical stuff like filling the cartridge and priming the tube and cannula but she unwrapped the new inset, uncoiled the tubing, removed the adhesive and needle covers, needed a little help cocking it back and BAM! she placed it right in her leg.  Then she burst with pride, "I did it! Mom, I did it all by my self!"  Oh yeah my little gal rocks!  What a great team we make!  Start to finish including removing the old site was 10 minutes!  (remember my old days, just a couple of months ago, of it taking an hour or more to change a site)  Yes, I am one proud D-mama tonight!

A brother's love

I purposely didn't take any pictures of Bekah in the hospital when she was dx with T1D.  I didn't want to remember what she looked like, sick and frail.  My oldest son took a picture on his phone of her and tonight he found it and uploaded it on facebook

 The caption he wrote under it got me...


"What dose it take to break ones heart sometimes I thought a girl would break mine more than anyone and that's so true... I just never thought it would be my sister"