Birthday Weekend Re-Cap (with still more to come)

What would a birthday be without a 3 a.m. BG reading of 501? Or... a day full of running and playing and treating lows with delicious home aide Evans Orchard apple cider... Or... being so exhausted that you can't treat nighttime lows... Or TURNING TWO YEARS OLD and suddenly REFUSING every attempt to treat a nighttime low... "NO!" to skittles "NO!" to juice "NO!" to cake icing... Thank goodness for one lonely pack of Cars "gummies" which ended up being the ONLY thing this stubborn TWO YEAR OLD would allow us to put in his mouth.

But... This weekend hasn't been ALL about "D."

Friday (Saul's actual "birth" day) was spent playing with Trippy. He got an awesome new "Thomas-piano-book" from the Neely's which he LOVES.... and better than the book was the wrapping paper it came in... "DUMP CAR" wrapping paper. He has carried it around all weekend.

Maw-maw braved stormy weather and eventually made it down Friday afternoon. We spent the evening celebrating Saul's bday going "out to eat." Saul managed to shove in 91 carbs (thanks in large part to a 45 carb chocolate chip cookie) and survive the experience. Following the carb overload... and in one of my favorite moments of the bday weekend - we took Solly to Target to "pick out" his bday gift from Aunt Chris & Uncle Joe. I wish we'd videoed (how many times do I say this?) or attempted to document the experience... SOMETHING to capture the moment.... moments.... HOURS... it took him to pick something out. LOL. This kid is so much like Sebulsky it's not funny. He pondered. He carried around certain toys. He tried things out. He REFUSED to decide quickly... He reminded me so much of Jeff I wanted to scream. "Methodical." Then (just like his Dad) once he FINALLY FINALLY FINALLY decided (on a set of Matchbox Cars which included a dozer and a "dump car") he hasn't let them out of his sight or hands since (fully satisfied with the ultimate decision). Saul also scored with a Cars book (that includes a set of cars) and a new Umizoomi video (Thanks again Aunt Chris & Uncle Joe!). We topped the evening off by going to Half-Priced books to load up on some new reading material which made EH a very, very happy girl.

Madison and Wynne came over Saturday morning and we loaded up and headed out to spend the day at Evans Orchard. What a day! I think we're all still recovering from the excitement. Check out pics here. We picked apples from the orchard, we picked pumpkins from the patch. We ran, slid, jumped, climbed, rode, hid, walked, ate (apple cider donuts... yum) took lots of pics and made lots and lots of great memories. We even ran into some old friends and got to enjoy their company.

I'd like to say we came home and "crashed" but how could these kids rest when they had the "hugest... funnest... bestest ever birthday box!!!" to open from Grandma and Pap. Dinosaurs! Trucks! Legos! More Dinosaurs! Seriously.... will I ever. ever. ever. get them to go to bed ever again? So many new- cool-awesome-"perfectly selected presents" to play with!!! Leave it to Grandma to always send lots of love & fun! We miss you Grandma and Pap!!

Tonight we are supposed to go to Gattitown for a "family diabetes evening" with vendors, information and lots of free stuff. I'm hoping a family nap will give us the energy we need to round out this non-stop, fun-filled birthday weekend.

Thanks to all our family and friends who have "celebrated" from a-far, who have sent "special birthday wishes" and thought about our "sweet boy" on his special day. I hope he knows how much he's loved.

PS. ignore all the typos and terrible grammar... I've got what can only be called a "too-much-two-year-old-partying-headache-hangover"

September 27, 2010

September 27, 2010

It’s 1:25 a.m. 4 hours before I have to get up and go to the hospital for a C-section. I’m absolutely terrified. I am a nervous wreck. I’m afraid I’m going to throw up or pass out on the operating table. I got sick last Thursday. I’ve been on a Z-pac since then. I got bronchitis and have had a terrible cold/headache/flu.

Dr. Onan is doing the surgery. I’m scared. She’s using steri-strips instead of glue- like Dr. Fuson used.

Fears-

I have so many fears. What if something bad happens- blood clot, pneumonia, unable to move, trouble breastfeeding.

Fears-

What if the baby is sick, deformed, what if something is wrong with him? What if something happens to him? What if he stops breathing?

Fears-

Post-partum depression, anxiety, what if we don’t bond?

Fears-

What if something happens to Harper on the way to the hospital?

 

I keep telling myself… you’ve waited for this, waited for him. You’re doing this for Harper. She needs a brother a baby brother. Harper needs a sibling.

Brooke is doing this 3 times. O’nan did this 3 times. You can do this. You did it once before.

This is something good. Something wonderful. You're having a baby.

Enjoy this moment- enjoy him. This will be the last time you’re pregnant. This is your last birth. This is the last baby you will breastfeed.

You have so many people praying for you. Praying for this baby. Saul. Prayed for. He’s not here and he’s already getting prayers.

I wish I could quit work to raise kids.

I wish I could take more time off to be with this baby.

Go to sleep. Don’t be afraid. It will be okay. You will be okay. He will be okay.

*I copied this exactly as I wrote it 2 years ago in a journal the night before my scheduled C-section. All the fears and anxieties were worth it. What an amazing 2 year's it's been. Happy Birthday little buddy. Mommy loves you.

Diabetes Art Day (just a little late)

Hey guys. So things like showering, napping and changing "yanked out infusion sets" has taken priority these past few days... which means I'm late blogging about Diabetes Art Day. We did not submit art this go around, however I do plan to submit something for February 4th. Check out the incredible and inspiring art that was created here. Also check out diabetes blogger and Art Therapist Lee Ann Thill and her blog "The Butter Compartment" (which happens to be where we store our insulin as well...lol).

Oh... and in conclusion to my previous post.... it's itchy. and annoying. and weird. and sometimes painful but more frustrating than anything.

BTW.

umm....

somebody has a big birthday tomorrow.

and...

umm....

somebody else is in denial about it.

and...

umm...

that somebody in denial is currently planning a very special day for that very special somebody and yes... it does include a "dump car" cake.

Just one of the "D's"

So... I can't believe it's taken nearly 8 months for me to do this... or that it took Sebulsky 3 attempts to insert the CGM.

Either way... I've got two sites going... I don't have a pump with saline - just tegaderm covering the site where the needle is inserted. I'm only "wearing" the inserted cannula for the CGM site and have tegaderm covering it.

I won't lie... even with lidocaine (numbing cream) prior... The CGM insertion did not feel great. I wouldn't say it was painful... But I certainly felt it (and felt it, and felt it.... Lol.... Sorry Sebulsky 3rd times a charm). It remains uncomfortable- again... I wouldn't say it "hurts" but is def. present and annoying. After just 3 hours of wearing and an hour of cardio the site has started to itch and I find myself wanting to scratch at it. The pump site insertion felt like a like "prick" basically like a finger stick in the stomach. It does't hurt... its more psychological than anything... just the thought of wearing a tiny steel needle in your belly all the time is kinda weird. I was cautious at first with bending and stretching... I wonder if a cannula has a little more give and feels a little better? Maybe I'll ask Medtronic to send me a few different insertion sets to sample. Lol.

I wish we'd video'd Saul's reaction this morning. I asked him if I could wear his pump and he stared at me with a look of disdain and said "nooooooooooooo" shaking his tiny little head. Then he yelled "pump car mine." Lol. I guess I should be happy about this. That boy loves his "pump car!"

Stay tuned for more updates!

Blue Skittles

Sometimes I forget the fear of that horrifying seziure, ignore the potential choking hazard, refuse to think about the dental damage and find myself entertained by treating the second low of the night at 2:30 a.m.

Well on second thought....

So I woke up this morning refreshed, rejuvenated and ready to roll. Despite the recent inconsistency in blood sugar levels, inability to make contact with UK for pump adjustments AND coming to the realization last night at 10:30 pm THAT $&$*@^& we only have 2 reservoirs left?!?... 2 left?!?...what do we do?!? what do we do?!? what do we do?!? only 2 left!?!?,................Saul slept like a champ and (according to MySentry and 3 BG checks) kept constant, stable "in-range" numbers throughout the entire night.

I celebrated the occasion with an updated FB status.

On top of successful numbers and sleep.... a frantic text to Jennifer (our wonderful-faithful Medtronic nurse) late last night was returned with the response "Fed-Ex'ing you first thing tomorrow morning." This definitely helped ease my mind and allowed me to sleep more soundly. 

I was actually thinking about buying a lottery ticket after phoning Medtronic this morning. I called in regards to Saul's delayed shipment of medical supplies.  When they told me "don't worry... we're shipping you some emergency supplies till your insurance authorizes our reques I allowed myself to let out another huge sigh of relief.

In between calls and texts Saul kept fussing and twice brought me packs of his emergency skittles. Glancing at the MySentry screen and seeing a SG reading of 141 AND being told to wait 2 hours after eating before doing a BG check- I rationalized his behavior as "sneaky" and "just wanting a little candy."

So we ran. We played. We had fun. At 10 I declared time for a morning snack. I sit down to check him and he's 36. 36!!!!! To date that’s the lowest number I've seen on a meter reading. *sigh* forget that lotto ticket. He presented no symptoms. His request for skittles had been an hour before reading. He apparently "felt" himself going low- I ignored his request the result is he plummeted.

A year from now - I pray - we never see numbers so low- because his DAD will catch them as I hadn't... and for the record his CGM was reading 115 (two arrows down) at the time of his BG check.

It's been the second time here recently I've misread his attempt to communicate with me.Last night after putting him to bed we listened to him cry for at least half an hour. His pre-bed BG check was spot on. MySentry reading 150. I peeked in once.We told ourselves he was mad because we hadn't given in to him wanting to take a drink to bed.

I finally caved. Walked in to find he had pulled out his insertion set (which had just been changed) and was bleeding... the tiny steel needle jabbing him repeatedly on his thigh. That poor boy had laid there in the dark crying the whole time. I said Saul... "why didn't you call for Mommy!" "Why didn't you yell pump!" (that’s what he usually yells when his pump falls out or he hears a CGM alert. He just kept saying "ouchie" "ouchie." It. broke. my. heart. However watching Harper jump into "I'll save you nurse status" late at night is quite amusing....anything to avoid sleep- although last night I think she really was concerned. 

We continue to battle highs and lows and attempt to curb Saul's desire to "graze" I seriously considered getting locks on our accordion folding doors yesterday to prevent him for getting into the pantry. I am trying to get to a point where there are no visible signs of food. Lord help us when he's able to actually open the fridge door.

Yesterday though sad- I had to laugh - when he came to me wanting something to eat and I said... lets go play cars...the look on his face was priceless... kinda a mix between "what the?"and "woman you gotta be kidding me.... get me a snack already."

The irony is... as I try harder and harder to cook low-carb healthy meals...I find myself desperately attempting to shove as many carbs as possible down my throat... when the kids aren't looking. I think I might have actually experienced some carb withdrawal symptoms a few days ago. Which speaking of I'm gonna go ahead and end this now so I can cram down a bag of sugar free cookies while the boys are napping.

Hey... whatever it takes to survive right?

I'll leave you with some adorable pics of the sweetest boy I know (I took these pics 5 min before his 36 BG reading) as you can see... he is not presenting hypoglycemic symptoms at the time... especially for a BG reading of 36.  This my friends is not a good sign and why I will soon be asking for your help in acquiring a DAD.

ahh.... the best of times, the worst of times....

I flat out said... I'm not posting again till I have something not-depressing, not-tear jerking, not-disheartening, not completely overwhelming to talk about. You might have noticed... it's been several days.

And though days are sometimes tough and nights have turned me us into sleep deprived zombies (who too often turn on each other in an effort to... please... just...let... ME... get... the... sleep... tonight....) we've also spent the in-between times... the in-okay-range- times making contacts across the U.S. with some incredible folks and some amazing families who are helping to normalize these "difficult times" and making me feel far less isolated and alone. We've also been showered with cards and dinosaurs (Thanks Aunt Vicky and Uncle Bob) special visits, the coolest T-Rex washcloth (Thanks Aunt Christy.... it's currently the ONLY way of getting Saul into the tub) an hour of respite care (Thank you Willians... this truly was priceless), and lots and lots of texts, messages, emails and phone calls. I never. ever. ever. take any of these gifts for granted. The comments, the kind words, the prayers... friends from back home who I've not seen in years who've reached out... I sometimes become so overwhelmed and entangled in love that I close my eyes and attempt to take it all in- try to remember- savor- relish the outpouring of kindness and generosity.

Saul's BG's have been anything but stable since the seizure episode and reducing his insulin intake. Because we've got him running high and are attempting to find patterns in the data it's made for some interesting "hulk-out" moments... the most recent occuring yesterday at the Palomar Panera in Lex. My apologies to all other patrons- while we were quaranteened in the corner by the door- away from everyone else- I could understand your frustration with the random objects sporadically thrown, the occasional roars and growls, and that one outburst of laughter (sometimes laughter is the best medicine).

Luckily we were able to attend our first American Diabetes Association "Family Day"which was held at the Life Adventure Center in Versailles. The kids had a great time running around and making nature crafts and I enjoyed meeting people and being in the company of other T1 Moms and Dads. I cracked up as I went through line getting food and was given the carb count on the cookies.... It was wonderful getting to see Jennifer (our Medtronic nurse) and meet a young lady from Win-city with T1 who works at our local indoor pool. I had so many "moments" yesterday... from over hearing one mother (of a child who appeared to be 6-7) talk to a vendor about insulin pumps "It's just.... I'm the only person who watches him and how will I teach someone else to do it? I mean... my mother occasionally watches him but when she hasn't done it for awhile... well... she often forgets and I have to teach her all over again... I'm just worried about the pump.... it's so much to learn and then teach someone else." I lowered my head and quietly nodded in agreement... I know exactly what she's talking about. The little 6 year old boy (who happened to be the next youngest after Saul) got too hot and went too low while participating in the "Nature Craft" at the garden... watching him down juice boxes and granola bars while his mother held him in her arms gently running her fingers through his hair gave me chills. There was a Dad who came over to "talk pumps" while I was bolusing Saul... I chuckle now as I look back on our discussion and liken it to two people talking cars "well the Ford actually..." "yeah but a Chevy can...."

Saul of course was a huge hit at Family Day- I mean... it's hard not to fall in love with a little dude running around in overalls pump dangling out of his back pocket. They took lots of pictures of him- and even videoed "us" with our "diabetes story." I'll be sure to link you all to any ADA pics and videos... lol... I sent Mom a text saying something like "Saul is making his debut appearnce."

So many families thought Harper was our T1 child... when I'd say... "No he is" and point to Saul they ALL on cue would tilt their head and let out a huge sigh... then say "I'm so sorry.... I can't imagine what you're going through."

I'd like to think that the outpouring of prayers is what allowed us all to have the best night of sleep we've had in days.... so great that both Jeff and I slept through a number of alarms set to check BG's. Luckily MySentry had him running in the high 200s all night (a far cry from the 300 and 400 hundreds as of late).

I've got lots more to tell you... talk about some upcoming fundraisers for Saul's DAD (diabetic alert dog)... tell you some hilarious Harper stories... but right now I've gotta get off here and figure out what to do about the fact that
1. I lost Saul's lancing device yesterday at the garden.
2. I gave away Saul's other lancing device (you know... his back up).
I'm currently counting out exactly how many lancets we have with the free-bee and guesstimate how long thats gonna last us today.

I'll leave you with a link to Jeff's photos. Check them out if you haven't seen them on FB already... theres some good ones!

Saul making friends and making folks smile

In for the long run.

I'm not a runner- never have been (even though I've often fooled myself with short stints of pretending).

Last night while attempting to get a few hours of shut eye between BG checks I kept thinking about myself (and eventually Saul) doing the "diabetes distance."

That's the thing about chronic illnesses... you're in for the long run. Stamina, endurance and strength are what it takes when you're competing against auto-immune disorders like diabetes.

If I were a runner I definitely would never chose distance running. In my mind, short and fast seem like a much better option. I'm not saying a disease like cancer would be better but at least with these types of illnesses you know what the goal is- you fight hard, give it your all, try and beat it with as much power and speed as you can.

I've never been good at sticking with things. I'm more of a firecracker (explode onto the scene) then fizzle pretty quick. I'm great with "big ideas" good with "short term projects" but typically lose interest in things that take time and real effort ("time" being the key factor).

I pride myself as a "dabbler" I like to sample, try and experience everything but never really gain expertise in any one area. I would never use the adjective "stamina" as a descriptor for myself. I guess that’s why I changed my major 6 times as an undergraduate... why in my lifetime I've pretended to "be" so many different things.

Last night however, I realized that diabetes is changing me... taking me from the short to the long run. I can't fizzle out. I need to maintain. I need to keep pace. I need to go the distance. I need to do this for myself but also as modeling for Saul. I will soon pass the baton to him and while I'll run beside him for quite a while he will quickly develop his own stride and learn how to keep pace himself.

If you're a betting person... I'd tell ya to throw down a few $$ on Saul. No doubt this kid is gonna come in 1st place. He's got crowd filled stadiums cheering him on.

Coming Soon! "DIE PANCREAS DIE!"

Starring: Saul's good for nothing, lazy pancreas

A couple short clips have been provided for your viewing pleasure. 

Hey- if you like action- it'll be right up your alley.



Oh... an update on Saul?

Well apparently his lazy, good for nothing pancreas is approaching the end of his life- which is the explanation for last week's diabetes drama. Saul is coming out of what's called "the honeymoon period." Since diagnosis his pancreas has sporadically "worked" on and off... Though my definition of work and "his" definition of "work" vary greatly. Dr. K likened the analogy to a lawn mower reaching the end of the summer season- as it gets down to the last little bit of gas... it kinda sputters and sputs. That's what Saul's pancreas started doing last week. "Sputtering and sputting" out insulin at random times for no reason- this coupled with the insulin I was giving him (because you... know... I've been doing MY job PANCREAS...) was causing those hypo episodes. Hopefully... fingers crossed (with bow and arrow, shot gun, giant bolder, and missile’s ready) pancreas will just go ahead and kick the bucket... I mean... I don't wanna take him out... but after last week (and my stint of target shooting on Saturday) I'm pretty sure I've got the upper hand.

Don't worry! Don't worry! I'm just trash talking...

Oh. and no pancreas was hurt in the making of this movie.