8 tomorrow!

Maddison will be 8 years old tomorrow!! What happened to the chubby baby I never wanted to put down? The little girl that zoomed around the house right by my side, giggling and enlightening every minute of my day? I'm the mom that never wanted her babies to be toddlers. Then I loved the toddlers so much I didn't want to send them to school.I could have had many more kids for the shear enjoyment of watching them play and learn all day. I could never have enough time with my little girls!

Maddison has become an amazingly resilient and caring person. She is remarkably generous and giving to her sister. Always. She always comments on feeling bad for others disabilities or short comings in life. She is very understanding, even when she is disappointed you will hear her saying "That's okay." But... she is a little monster when she isn't ready to come in from playing outside or leave her friends house! She is stubborn (like me!) and will always try to persuade you into her way or the highway. Gotta love kids! Maddison never complains about feeling sick when you know she feels horrible. (unless she is trying to stay home from school!) She told me the other day that she doesn't belong at school....she belongs "outside" all day. She is very optimistic, easy-going, and relaxed. Wow, she is alot like me! (I wish I had her optimism!)

Maddison is so excited for her birthday party on Sunday. We are having the owner of "Fallen Feathers Bird Rescue" (where she volunteers) come and do a kids presentation about native birds from Arizona. She will bring some feathered friends and talk about her organization's purpose and all that good stuff. I am sure some of the kids won't be too interested, but birds (why birds?!) are Maddison's passion. It was a perfect party plan just for her liking! Of course the kids will swim, play games and all that other party stuff.

We are having family over for her birthday dinner on Saturday evening. I think it is very important to separate and enjoy our family with our own "family birthday dinner night" so we actually have time to spend together without a million party kids running around. I am looking forward to a relaxed and wild weekend. I am hoping to forget my weeks frustrations by the company of family and friends. Maddison is still set on a temporary 150% basal increase but her numbers have been in range finally thanks to a few other ratio changes.

I just got a call from the school nurse, for the FIRST TIME at school since starting two weeks ago Maddison was in range at recess! She was 90....happy it is Friday, and going in for IEP "testing" What a relief! I am praying that she doesn't start lows now that she is recovering from her cold! Please not on her birthday weekend! I guess if the lows happen this weekend she gets extra birthday cake!

No Endo visit!!

On Tuesday afternoon Maddison's Endo office called to see if we received our COBRA policy number yet, and needed to know if we showed any eligibility for her appointment scheduled today. I explained that although I paid the initial $1400 (!!!!!!) we haven't yet received any notification of "eligibility." First, let me say I understand nothing in life is "free." I understand a Physician's office is a business first these days and they cannot allow every sad story to influence their receivables. (after all I have to deny my own patients every day too!) BUT, when I explained our hardship I honestly thought they would waive the required up front payment. After all, we have two with Diabetes in our house and I was certain they would trust that we had no choice but to maintain our insurance coverage through the evil COBRA.

Not so. I never even got a response from the office manager. It probably isn't a good idea for me to see (or hear) Maddison's A1c right now anyway after a month of pure hell chasing highs. I would probably have a nervous break down in the office and go postal. So, Maddison missed her appointment today because we honestly did not have the money to cover the office visit since payday isn't until Friday. Oh, and don't forget the HUGE check I was forced to write out to COBRA that demolished my money tree! I will probably remember writing that check for the rest of my life. Being forced into paying outrageous premiums because two of us have Diabetes is a very emotional thing. But I guess everything that is Diabetes related is emotional to me isn't it? As I was writing that check I thought, geez! How wrong is health care in America? Yet, I realized I am lucky to have the insurance coverage at all. What if I didn't have any insurance for me or Maddison when we were diagnosed? We would NEVER in our lifetime be financially able to maintain a higher standard of caring for our disease without good insurance. We HAD good insurance and the expense was still tremendous! State health care funding will not pay for insulin pumps. If we were doomed to state health insurance we would never be given the option to pump or not. The insulin pump is classified as "not medically necessary" because you know, injecting yourself 10 times a day without precise pump amounts is considered managing just fine. What a bunch of crap!

Then there were the emotions that wanted to tear up the damn check and scream like a child. Why? Why is our life so complicated now with medical expenses? My husband wanted to pursue a better career elsewhere and it is going to cost us $4,200 over the next 3 months to get there? Well let me mention something else that just is flat out wrong. When you take your new job you aren't necessarily sure what benefit elections are available. Well, we just found out what the new job elections are. From 3 care levels to choose we now will be paying $20 more per month for insurance and we are stuck with DME craziness. DME is Durable Medical Equipment. DME is also the account I work at my PT job. So, I am well versed on what this craziness means for us with a new policy that starts in 90 days.....DME coverage is also what is needed for pump supplies. Our new plan will pay 80% and will max at $700 per year....HOLY SHIT PEOPLE! YOU HAVE GOT TO BE KIDDING ME! ONE MONTH of supplies max's out that $700 "benefit"!!!!

Let's do the math......at $700 per shipment (every 3 months for us both combined) the pump "sets" will pay $560 from insurance. We pay the other 20%.......Then there is the "Reservoirs" that hold the insulin inside the pump and are disposable every 3 days as well. We are billed $300 (every 3 months for us both)insurance pays $240.00 and we pay the remainder. Looks like we already maxed out that $700 benefit limit for DME in the first damn shipment! We still have 3 shipments for the year that we will have to pay for. Out of our own pocket. Thanks for the $700 you srewed up insurance plan! Is this a better career move for our family? Not really. So, although Josh will make more money at his new job, we won't see alot of it because we again are FORCED into covering remaining medical expenses for a lame insurance plan that D.C.S. (DOESN'T COVER SHIT!!)That's another $250 per month we will now have to front on top of all our other medical expenses. I can think of alot more things to do with $250 a month than jabbing myself in the ass with a huge pump site needle! Funny that I just said that, now every time I change my pump site I will see the "ch-ching" of dollar signs and think of what I would rather do with that money every month!

Financial assistance? Um, no. We make about $20,000 more than allowed for financial assistance. Hmmmm. Maybe I should quit my part time job! Maybe then they would help us with the $4000 a year for medical expenses. Probably not a good idea to quit my job right now. At least I am starting to see this as comical. Insurance is a funny thing isn't it?

She never ceases to amaze me

Maddison went to school today after a decent night with less coughing. Temp basal remains at 150% and she did fairly well as far as blood sugars all night. Today she hit 320 at her 930am before recess check! OUCH! She pretty much remained in the 300's all day despite corrections. By the time I came home from work to pick her up from school I decided on doubling up on the correction amounts. She finally hit 160 a few hours later. Exactly why I prefer to deal with her Diabetes myself!

Maddison didn't complain all day about her hacking cough. She didn't complain about being sky high although I know she must have felt terrible. She has had the look of "high" since last week. She just looks worn out, though she will never admit that. She always amazes me. She came home from school and had her usual quick dose of Animal Planet to relax, then she was on her way (in the 380's!!) outside where she is the happiest, even in 107 degree weather! She is amazingly resiliant to running high all day.

Maddison happily zoomed around the yard on the lookout for birds in need of being "rescued." For those of you that don't know Maddison personally, she is passionate about our wild bird population here in AZ. SHe has "rescued" many Quails, Doves and Sparrows throughout the spring when they are readily hatching and leaving their nests. The birds actually seem to find her when they need someone to help them, it is actually kind of bizarre. Maddison even began volunteering at the bird rescue where we take the injured or young birds that she finds. She wants to spend every waking moment outside, looking out for helpless creatures. Lizards, bugs, lost pets. If Maddison is around, they find her.

I realized today I need to take lessons from my soon to be 8 year old. I need to live life the way she does each and every day. She takes her minor setbacks and chooses to surpass her feelings by finding time to do what she loves best. She heads outside and returns a much happier person. I can honestly say I never, ever take time for me. If I do, I sit here online and read up on Diabetes or speak with other parents fighting Diabetes. It has just gotten to be too much. I need to get away. I need to get my life back which includes other interests than curing and managing this disease. Too much time is spent trying to 'cope' with the hard days, not enough time is spent just setting them behind me.

I should thank my Maddison for being the amazing girl she is. She may feel sick, sad, high, disappointed, scared, overwhelmed, angry or tired but she always overcomes it quickly by doing what she loves most. I think from today forward I will promise to take time out for me. 10 minutes a day. 30 minutes a day......I have to in order to gain back my positive outlook that seems to have vanished many months ago. I'm headed down a bitter path right now and that isn't who I am. So, as usual Maddison has reminded me today of the importance in stopping to smell the roses, every single day. Or in her case I guess, taking time to visit with the birdies!

Poor girl

Maddison stayed home from school today with a terrible sore throat, hacking cough and slight fever. She is just miserable. I was hoping she wouldn't get sick the first few weeks back to school! She started out last night and woke up this morning with good blood sugar. She slept in until 11am coughing the entire time. Then her blood sugar hit the 350's and has steadily stayed there despite increased basal rates for her illness. She has some minor ketones, lets hope it stays minor. Poor dear. Being high and sick just isn't fair.

She is now crying miserably because I wont let her play with her friends. She insists she feels fine, but my rule is if you stay home from school you dont play with your friends. I started this rule as a way to get her to stop playing sick in 1st grade. She would play deathly ill for the few hours she stayed home from school, then she popped right up around noon and played happily all day. Boy was she a crying mess by the time she realized staying home from school meant no friends after school! So, it works well..... but then I have to listen to her pity party and crying miserably. Poor girl.

Tomorrow I will send her to school (if there isn't the fever) and I am sure the school nurse will be calling me about her cough. I had the same hacking cough for 3 weeks. I felt fine besides the sore abs from coughing my ovaries out and headache that it caused. I think tomorrow Maddison will feel better too. She is to begin testing and has a meeting with the guidance counselor as well. Thursday we already have early release, and Maddison has her yearly Endo appointment that morning so she wont even be in school again that day. I am cringing to think what Maddison's a1c will come back at. I will probably have a mental breakdown when I hear the result. Her last A1c in April was 6.8% (they want kids around 7-8%) and I had high hopes for the same range. There is no way it is still that good with summer craziness and school highs. 6.8% is very good for a child her age, but moms always want better. It is never good enough. So, I am spending time brain washing myself into believeing I have done the best I can lately. Wish us luck!

Days 3 and 4....I don't want to do this anymore!

Day 3 and 4 for Maddison at school has been great. No more crying or complaining. I am happy she has decided to make the best of her day as I suggested. Today she even left the house happily, smiles and silliness just as I know my Maddison.

Despite how happy and releaved that makes me, this blog is quickly going to turn angry, so this is my warning. If you are tired of hearing me complain, this isn't the blog to read. Maddison still ran high all morning on days 3 and 4. I adjusted a morning basal starting today and was eager and waiting to hear of a much better result from the school nurse this morning. Not so. Let me explain why.

Before my 6am walk Maddison was sleeping at a great 101. Breakfast is at 7am and she is 103. Good basal rate! Um, no. 5 minutes after starting to eat her breakfast she said she feels low. She is 53 and was already dosed with her 3.9 units for food that hasn't made it in her tummy yet. So, after her 8c of glucose tabs to stop the low and her breakfast now eaten, she says she is dropping fast. So, 8 more carbs. Always trust her feelings. Normally I would give more insulin for some of the carbs it took to get her in range because the food will eventually catch up, and then she will be too high later. I chose not to today and really thought I made the right decision considering the circumstances. She left the house at 158 an hour later. Good decision I thought!

9:30am time to call the nurse for the new morning adjustment result. 320. Great job mom! You ***cked up Maddison's morning! I guess I should have dosed the carbs back that treated the low! I knew breakfast would catch up! But, for today I made a bad decision. Now I sit here at work feeling entirely horrible that Maddison is feeling crappy at school. I wanted TODAY to be the day that I saw progress on morning numbers. Not tomorrow or next week. I'm so done with back to school adjusting. I really, really don't want to do this anymore! I am so frustrated beyond belief. And you know what is worse? Every single kid and parent with Diabetes goes through this all the time! Especially for back to school! THIS is Diabetes. Us moms have all been chatting online about our back to school craziness. It makes me so angry that our kids have to go through this! You have to manage changes for Summer, for vacations, holidays, growing, sickness...or just because the damn moon is tilted to the left......Why does it have to be so constantly changing? Why can't we just take our frickin' insulin and have it work the same every time? Why can't it just work the same for every time of the day and every food we eat?

I'm sorry, but today I just feel like I can't do this anymore! I'm tired of being frustrated. I'm tired of three "good" days that give me pure happiness only to be kicked down by 5 days of hitting the 200's somewhere. I'm tired of being tired. Despite my best efforts and constant diligence things still aren't right! I am tired of having to wake up every two hours at night to make sure my child is safe. I'm tired of foods that cause crazy numbers when my 7yr old just wants to eat some damn ice cream like everybody else. I'm tired of poking her little scarred fingers 15times a day. I'm tired of inflicting lows by trying to defeat the highs. I'm tired of worrying. I'm tired of stabbing a huge needle into her tiny body every three days to keep her alive. I'm tired of it all! Can I just have one "good" month of numbers for Maddison? One straight month?! With one month I could recover from my anger and actually feel good about managing this disease again, I really would. Can't we just get a break?

Honestly, as I re-read what I just typed I realize I don't really feel as frustrated as it sounds in the written word. You know why? Because somehow you get used to this type of frustration every day. It is actually "normal" feelings in my life now, a part of this Diabetes game. It is entirely frustrating, but it is also something we have learned to "cope" with. Some times like at this moment it comes raging out, and then we move on. Because we have to.

Too easy? It never lasts.....

Well today was day 2 of back to school. Yesterday I mentioned it seemed "too easy" that Maddison didn't fight going, and her numbers were decent all day. Apparently I was right, "too easy" didn't last! Ahhhhhh!

Maddison cried before bed. She expressed her "I hate school" feelings until she finally fell asleep in tears. Yes, she was higher most of the night again too because her emotions ran wild. She woke up the same way. She looked horrible. What a sad scowl on her face. She whined and cried the entire hour getting ready for school. Not only about school of course, but she also let it be known that her shoes were too tight, her new shirt was itchy and too long, her milk tasted funny and she hates her hair, LOL. It wasn't funny at the time, but wow! She was mad at anything she could think of! Poor Hannah had to listen to it before school. I just let Maddison vent and I tried my best to sympathize and listen. I do understand, but I also know she likes to play me. Kids always give the greatest wrath to moms don't they? That is what we do. We harbor their fears and let them vent so they can move on. I emailed her teacher with a warning, and she replied that Maddison seems fine. I know she is, but I also know she really does despise being in a classroom all day. She is just like me when I was her age. Once we get her tested to determine where the learning issues lie we can better her attitude towards learning. It will be a long hard road, but we will get there. I'm just happy that we are FINALLY moving forward to separate fluctuating blood sugar issues from learning issues. Today she was 210-260's all day until she came home! What the heck??!! That can't be good for feeling your best! I guess it is a sad fact that we have both learning issues and Diabetes issues. As if Diabetes wasn't hard enough to manage. I can handle the Diabetes, but I am not any type of teacher. I have no idea what to do with learning issues!

Now Maddison is happily playing with her neighborhood buddy. They are like two peas in a pod. They like all the same things. They get along great. I wish at school Maddison was the happy Maddison that I know best. At home she is herself. She is full of happiness and excited over the little things. She is confident and proud, and it shows. Our next step is getting the "real" Maddison to class every day!

First day in 2nd grade

Maddison couldn't sleep last night as I am sure most kids can't the day before school starts. I sure remember the sleepless night of anticipation before school starts. I'm thinking she actually was very nervous because she ran high all night. She was stuck in the 250's even with corrections at 9pm, 11:30pm and 2:30am. I was so relieved when she woke up at a nice 97 to start her first day.

She wasn't too happy about going to school today, but she didn't complain either. She was a great 123 at morning recess but remained much higher after morning snack even until lunch at 12:30. No lows, so that is a plus I guess. Now we wait a few days and see if she levels out or needs adjustments. She came home looking awfully tired and HOT. 107 today in AZ as a matter of fact. What a yucky temp to return to school with!

Hannah being in 7th grade this year is just happy as can be. I can't believe she is in 7th grade! Sheesh, they aren't kidding when they say time flies the older you get! Now Hannah and Maddison are grumpy and worn out from their day. They are starting to nag at each other and drive me crazy. It is obvious they are releasing todays chaos on each other. I sat in the front office about 20 minutes today watching the dismissal chaos unfold as I waited for Maddison. Man, I dont know how teachers do it those first few weeks!

So I am very optimistic about this school year. Our nurse has covered every new teacher and every concern I have had in years past. It was hard not to call and check in on Maddison's numbers all day, but I didn't call or even send a quick email! I was so proud of myself for resisting the nagging of "needing to know" where Maddison's blood sugar was. I survived the day without stressing out, and Maddison made it through the day without visiting the nurse with a million excuses to get out of class. Hooray! Now to see what the remainder of the week brings. It couldn't be this easy could it?

Maddison is tested for her IEP on Thursday and she asked me the other day when she would be. She was eager to "be allowed more time for tests" so that made me feel proud. She is a very smart girl, and she understands why we are seeking an IEP, and she completely agrees. I guess her first day in 2nd grade was a huge success, I hope I can say the same when the year is complete.