Our Sweet Shamae...

Of course me the master procrastinator would wait all day to finally sit down and write this post in memory of our sweet friend Shamae. This isn't a post I want to be writing. Somehow I feel like if I actually write it, it will be true that she's gone and I don't want her to be gone.

On May 21st 2009 Alivia was dx with type 1 and I was lost, There was so much traning on how to keep our 2 year old daughter alive during our hospital stay but it was all medical, there was no lesson on how to keep living a "normal" life. I had so many question, I wanted to know how everyone else organized their supplies, I wanted to know how long it would take before I wouldn't have to hold down my daughter both of in tears because she needed a shot of insulin, I wanted to know how to make a freaking batch of cookies when the recipe called for 2 cups of sugar and the bag only showed carbs for a teaspoon, I needed someone who had done this before. Someone that could hold my hand and walk me through my rough patches. Someone that could tell me everything would be ok when I messed up and missed an insulin dose or miscalculated the carbs in dinner.

One night I needed a break from the hospital, Tony sat with her and for the 1st time in 4 days and I went home to shower and to walk around safeway of course looking at the nutrition facts for every single thing I picked up, I cried that entire shopping trip. I came home and for some reason decided to see what information I could find online. I don't remember exactly what I typed into google but up popped a blog "Welcome to our crazy happy life!". I started reading and I couldn't believe it, her daughters story sounded so much like mine. I left her a quick comment and headed back to the hospital. When we were finally reseased and I got a chance to turn back on my computer I couldn't believe it, not only had she reached out to me she brought along her army of other d-mommas.

 

And there you all were, all because of Shamae!

 

 

 

 

I instantly felt welcomed into their special sisterhood, a sisterhood I never would of found if not for Shamae! We were all so close, if we weren't blogging we were calling and chatting, texting, even planning meet ups when we knew we'd be passing through someone's home town or if it was Sunday night we were have one of our late night group chats. Those nights were the best, I loved Sunday nights! Sadly our Sunday night chats will never be the same, they can't be when such an amazing person is missing from it.

 

I honestly don't know how to end this post, I don't want it to be the end.

 

Shame,

 THANK YOU!!!! You were such a great friend! I know 100% that I would not be the person I am today if you wouldn't of reached out to me 4 years ago and pulled me into your circle of other amazing d-mommas!!!!

Love you!!!

 

 

Feet...

Most peoples feet fall asleep when sitting for a period of time so when Anthony started complaining of it back in kindergarten (2009) I pretty much blew it off, but put it in the back of my mind. I did however bring it up at his 6 year well child visit at the end of the school year (2010). Dr and I both just though it was poor circulation and being that he was born with a heart defect it makes that a more common occurrence. Dr thought it would stop over the summer with the warmer weather and the increased activity... it didn't. I'd look out in the yard and see him sitting in the grass, shoes and socks off and him banging his feet on the ground trying to wake them up. Time passed and his feet falling asleep just became part of our normal. 

He started 1st grade and circle time on the rug was replaced with more time spent at his desk and he stopped complaining about it, it would still happen at home but it was now completely normal to catch him on the floor slapping and punching his poor little feet, I'd usually sit down next to him and help him rub them until they returned to normal. Our insurance only covers well child visits every 2 years after 6 so his next one wasn't until he turned 8 and I still didn't think poor circulation was cause enough for a sick visit. 

Then during 2nd grade (2011) it started happening EVERY SINGLE DAY! Each day after school he'd use the restroom and come hopping out with both feet asleep remove his socks and start beating them. I'm sure there has been days for all of us when we've spent more than our fair share on the potty and I don't know about you but my feet don't fall asleep and they surely don't during any regular trip! 

As cold and flu season rolled around his pediatrician sent me a notice that it was time for his asthma follow up visit, weird! His asthma has been almost non-existent for years and I've never gotten a notice before so I took it as a sign to make the appt anyways and hopefully run the feet problem by her again. She was stumped, all nerve testing came back normal and his feet were pink and warm to the touch, clearly not poor circulation. She started questioning him about other parts of the body, any pain? I was surprised to hear that his back hurts a lot especially during gym, he's never mentioned it to me before! A light bulb went off for the Dr... she asked to see his back and sure enough she found what she was looking for...a small dimple, a very common sign of Spina bifida occulta.She sent us for x-ray which confirmed her suspicions. 

This dx is pretty common and is considered harmless and is simply a variant of normal vertebral (bone) anatomy, it usually causes no problems that require anything to be done, however numbness in the feet with this dx is not as common and usually only happens when the spinal cord is involved. Tethered spinal cord-"The lower end of the cord has an abnormal attachment to surrounding structures. The spinal cord gets stretched and damaged". We were then passed on to the children's hospital for an MRI... which came back completely NORMAL! 

 Our Dr consulted with the pediatric neurosurgeon and she wanted to see him, she's had several cases with normal MRIs where the children still benefited from the tethered cord surgery and all their symptoms were relieved. She's pretty popular I guess because she was booked 6 months out!!! Our time has finally come, our appt is in a few weeks and while surgery (if even needed) isn't ideal I'm hopeful that she has some answers.

I expected more from you Glucagon...

June 29th I was awoken at 2:30am by Alivia climbing into my bed. I didn't think much of it, she ends up in our bed about once a week. Next thing I knew I heard something that sounded like someone pouring something, still half asleep I wondered if she spilled a cup of water...then I noticed my back felt wet a warm, I rolled to see her throwing up again and again and again. I woke up my husband and he changed the bedding and started the laundry while Liv and I took a quick shower. I set her up on the couch and did a quick sugar and ketone check, 96 and trace ketones. Hubby make a quick trip for some 7up and she was able to keep it all down, I thought for sure it was something she ate.

A few hours later she requested breakfast, still a little worried about her tummy but knowing she needed insulin for the ketones I gave her some toast and a banana and only after she kept it down for a while and her blood sugar started rising I bolused her for it. She said she felt good and was up playing and acting normal. Lunch time rolled around and she wanted to eat what everyone else was eating and she did, bolused her for all of it after she was done eating and she was off and running.

An hour and a half later she climbed into my bed and fell asleep...this was very odd for her, she stopped taking naps years ago. Quick sugar check showed her at 57 with over 2 units active insulin still working to bring her sugar down even more, 4oz of 7up sipped slowly, tummy ache and she wanted to lay on the couch and watch iCarly. On her way down the hallway she started throwing up again, I ran to the kitchen to get her "bucket" and she continued to walk down the hallway and into the living room all while still throwing up, leaving a trail behind her. PANIC was starting to set in, I called my husband who just left for work asking for him to return home. I was alone with 6 kids, puke all over my floors which Addy kept trying to get! And a child whose sugar was dropping QUICKLY!!! I hung up with him (he came, cleaned up the mess and left again) and called our endo clinic, I LOVE our team but I HATE the way they take their calls. You call the main number and before you hear any options you have to listen to this message that takes forever! (Or so it feels while you're panicking!!!) "Blah blah blah, we follow the Portland schools, if they are closed so are we, if they have 2 hour late start we will open at 10am, blah blah blah, our fax number is blah blah blah, for scheduling press one, diabetes management press two", I press 2," if your child is newly dx or sick press one", I press 1, "you have reached the priority line please leave your name, number, childs date of birth and 1-3 days of blood sugar number" I try my best to hold back the tears as I leave the details requested and letting them know it is urgent! While on the phone I was collecting the little red box and a few insulin syringes.

A few minutes pass since I left the message, I mix up the Glucagon, I draw up 5 units, my phone rings and she tells me to do exactly what I had just done and to remove her pump, I gave the shot while she's still on the phone. She tells he that it takes a little longer to take effect and to recheck in 20 minutes, if she's not above 80 repeat, if she's still not above 80 come straight to the emergency room.

20 minutes pass and I recheck...59! Crap!!! Why aren't you working Glucagon!!! Another 5 units given, timer set for another 20 minutes.

Recheck after only 15 minutes showed 115, thank you Glucagon! Glad you could make it!!

Timer went off 5 minutes later, recheck showed she'd dropped to 81. By this time she had no IOB and no reason to drop any more. I thought for sure Glucagon was still working and she'd start heading up soon!

Called the clinic again to give them an update and to request a new Rx for zofran, the pharmacy we use is 30 minutes away and does not have a drive through, I wanted it sent to our local pharmacy just down the street that does have a drive though but does not accept our insurance. $75 is a small price to pay to get it now and not have to drag all 6 kids (1 very sick and weak) through Target. The Rx is sent and she advises me to call before I load everyone up.

I call and am told they do not have it in stock but can order it, ummm I need it NOW! She tells me she will call around to the other Walgreen's and see who has it in stock. She calls back letting me know that the closest place is in the same town as the pharmacy we normally use 30 minutes away! Ugh, if i have to drive all the way out there i might as well save my $75 and run into Target, I tell them to never mind. I call Target and ask them to fill the Rx already on hand, I ask if they keep it in stock and told YES! Do they double check? NO! They tell me to give them 45 minutes and it will be ready.

I'm supposed to have the extra kids overnight so I swing by their house to grab their bag on the way to Target. Alivia has been in and out of it on the short ride to their house so I check her...55! Seriously Glucagon you could of stayed a bit longer!!! I grabbed a 20oz Sprite out of their fridge and passed it to her and placed the "bucket" on her lap, hopeful that even if she did throw up some of the sugar would be absorbed. I called the extra kids Mom on the way to the hospital and had her to meet me along my path to get her kids from me.

The closest hospital is 20 minutes from us but they know NOTHING about children with diabetes, we went there at Dx and they had her transferred to a children's hospital. I chose to skip the middle man and go straight for the children's hospital 45 minutes away, our endo team was there and I felt she would be best cared for there. The drive was stressful, she kept falling asleep and I was worried she might not wake up when we got there and yet I didn't want to pull over... I just wanted to get there. As we pull up to the ER parking I notice that Alivia didn't have shoes!!! How was i supposed to carry Addison and my 60 pound 4 year old?!?! One of the lot attendants came to my rescue and carried Addison for me so I could carry Liv :) We checked in just as the hubby showed up from work and they put us in a room right away. Blood sugar was up to 180 (thank you 20oz soda!) but she still had ketones. Our endo wanted her pump back on but no correction. They loaded her up on the Zofran I hadn't been able to get my hands on all day. The nurse brought her a drink and some jello, if she kept it down she could avoid the IV, if not they'd start one. The snack stayed down and a few hours later she reached the 300's! Tiny correction ordered and they sent us on our way with actual Zofran, not just a slip of paper that said we could have it if anyone ever chose to keep it in stock!! On our way home we stopped by the Target pharmacy to pick up the original Rx that had been waiting for us only to find out they couldn't find the Rx and they didn't have it in stock anyways!!!!!!

They next few days were vomit free but she still had ketones for days and was completely unable to get any insulin other than her basal with out going low for almost a week! But all is back to normal, thank goodness!!!

I'm thankful that we made it this long with out this happening but at the same time I think I had the wrong idea about Glucagon this entire time, I always thought the mini dose was as magical as the half dose she would get in a emergency. But as I learned I shouldn't rely on it in cases like this, I shouldn't expect for it to work quickly and keep her stable... and zofran will always remain in my diabetes cabinet not as a Rx sitting at the pharmacy waiting for me to need it!

Look whoo turned ONE!!!

(Opening gifts at her 1st birthday party)

Can you believe it's been a whole year since baby Addison joined our family?!?!

It feels like just yesterday when we were all sitting around tossing around possible names for Baby "A"

Well it's been an awesome year, she fits perfectly into our family! She is very laid back and doesn't mind waiting a few minutes for her meal while we measure out Alivia's food or treat a low.

She is incredibly fascinated by that little black bag that holds the meter, poker and bottle of test strips. That bag must be kept zipped at all times! She loves to pull the cap off the poker, slobber on the meter and hide bottles of test strips under the stove.

She also LOVES LOVES LOVES wrapping her little fingers around Sissys tubing and giving it a good YANK!

She's also been a great sleeper (unless she's teething!) The girls share a room and she's totally unaware of us sneaking into their room at night, she doesn't even budge when the meter beeps or the pump alarms.

She's also learning at a young age that it's completely "normal" for her Momma to occasionally check her blood sugar, sometimes she scoots over to me while I'm checking Sissy and gives me her hand :)

We're still not in the clear yet with her kidney issues, we just went in for her follow up ultrasound and Dr visit and the kidney is still swollen. It did not go away on it's own like we had hoped for but at this time it's not causing her any problems and it may never cause a problem. Surgery however will be required if it starts acting up.

She's still not walking or crawling yet. I know she knows how to crawl but chooses not to and has very little interest in walking. BUT she does do this super cute butt scoot!

 In a way I'm sad that my last and final baby is growing so quickly, I'll never again be the mother of an infant and yet at the same time I'm a little excited for the next stage of motherhood, raising my children. I'm super excited to be able to just hop in the car with out having to leave my bum hanging out of the backseat in the pouring rain to buckle carseats :)

Everythings changing...

And by everything I mean E.V.E.R.Y.T.H.I.N.G!!!

When we were discharged from the hospital 2 years ago Alivia was on a set insulin dose due to the NPH but when we switched over she was at a 1:15 ratio, for you non-d peeps that means for every 15 carbs she eats i would have to inject her with 1 unit of insulin. They warned us that as she grew her insulin needs would greatly increase...but they never did! Up until a few weeks ago she was still on a 1:15 ratio even though she's grown quite a few inches and gained about 25+ pounds! Of course her "Honeymoon Period" was a huge exception but that didn't last long at all! And sure there were times when we'd start to see a pattern of higher numbers and we'd bump it up a tad only to be greeted with constant lows, and so we changed it back to her "normal" ratio. Same thing with the Lantus and now her basal rates, we started her on an insulin pump over a year ago we spent only a few days tweaking her basal rate and what do you know it was the same rate of .250, 24 hours a day 7 days a week and has stayed that way every day since!

Even her ISF (insulin sensitivity factor) has stayed the EXACT same since day one! 1:200, once again for you non-d peeps :)  1 unit of insulin lowers her blood sugar 200 points, for example blood sugar of 400 would require 1.5 units of insulin to bring her blood sugar back into her target range.

It was pretty smooth sailing, hardly any lows under 60 and only highs due to Mommy mess-ups and bad sites, and she hasn't had ketones since dx. Life went on and diabetes sorta faded into the background.

Fast forward 2 years to present day and then go back 3-4 weeks and we've got highs after highs after highs! Corrections are only working half ass and as soon as she eats she sky rockets AGAIN! Frustrated beyond belief I changed her site 10 times in 5 days, I opened 2 new bottles of insulin, it HAD to be one of those 2 things we've never had it any other way! After 5 very long and frustrating days had passed I finally gave in and started making changes, changes and more changes. Just 3 days later we were finally seeing numbers starting with a 1!!! We finally landed with an insulin to carb ratio of 1:10, basal rates of .500u/hour and an ISF of 1:150. All was right with the world and her numbers were "in range" every single time. Whew, that was rough but we all made it through alive and well (except for that A1c which will be sky high I'm sure!) End of story or so I thought...

Only a week after the return of the "in-range" numbers she was crashing hard and fast all the time. Lows only an hour after meals, corrections during the night bringing her into the 40's and 50's, and lows for no good reason! I very quickly pulled back hard on everything thinking she was just going through a growth spurt and now it's over. Everything was promptly returned back to "normal" and so did her numbers...for 4 days!

The last 2 weeks have been a nightmare! Everything only works for a few days before needing to be increased, a few days later decreased again, then increased, then...well you get the picture! I never know what number will pop up when I poke her little finger. She over reacts to every little thing and I never know if it's because she's high, low or just 4 going on 16!

In a way I feel like we're back at the starting line only the beginning of the last race was all down hill and this time it's up hill! I know so many of you have been going though this from the beginning but for us this is all new and very frustrating!

I do not like change! Or diabetes!

Two years ago...

 Two years ago today I woke up next to my baby who'd been sick all week.

Two years ago today I noticed today was different.

Two years ago today I told my husband "somethings really wrong, she's breathing funny".

Two years ago today I called the nurse and demanded my daughter be seen, NOW!

Two years ago I buckled my baby into her carseat and handed her a cup of 7up and a puke bucket.

Two years ago today I fought back the tears as I drove, I was scared she was going to die.

Two years ago today I placed my baby on the scale and notice she's lost a LOT of weight.

Two years ago today the Dr. suggested we spend a few hours at the hospital pushing a few bags of fluid.

Two years ago today I watched as my baby lay in the hospital bed unresponsive as they started an IV and took blood.

Two years ago today the nurse came in gave me a hug and said "I'm sorry but she has type1 diabetes".

Two years ago today I waited until she left the before I cried.

Two years ago today the nurse returned, "your daughter is very sick, we can not care for her here. We'll move you down to the emergency room where they can watch her better until the transport team transports you to a children's hospital".

Two years ago today I walked next to the gurney as they pushed her to the emergency room, everyone we passed had a look of sympathy on their face as if somehow they knew how close to death my baby was.

Two years ago today a nurse came in and started my baby's first ever insulin drip.

Two years ago today the pediatrician came in and told me my baby was in DKA and how life threatening that really was.

Two years ago today I called my husband and told him to get here as soon as possible.

Two years ago today a critical care transport team showed up to get my baby.

Two years ago today I watched them load my baby into the back of pastel blue ambulance with angels on the side.

Two years ago today we arrived at the children's hospital and went straight up to the Pediatric ICU.

Two years ago today I stood and watched in disbelief as they placed an IV in my baby's neck.

Two years ago today I held my baby tight and thanked God for her life.


Two years ago today my baby's life was saved!

Winner!!!

 We have a winner...

First I'd like to thank my pal Dana over at Custom 3D Bands for this weeks awesome prize! If you're not this weeks winner please hop over and order some bands!

47 Comments...

And the winner is lucky number 39!!!

Julie L... you have 48 hours to contact me a AjsMommy82@gmail.com to claim your prize!

Now pop on over to the Candy Hearts Blog for this weeks Sugar Bolus!