Monday, June 4, 2018

Do T1 parents of 2 T1 kids still blog? Is there a more interactive form of online support?

Okay, so I dropped off the blog radar for a while, but not off the T1 scene. I was busy taking care of my two T1s. Additionally, I have about 9000 members and a still growing online community I co-founded called POKED as a Facebook community. Parents of Kid Enduring Diabetes. A place for parents to go to read, share, hide, open up, and most of all support one another it is a closed group and you can find us on Facebook.
 I needed a support group. I didn't think I did ;) I was a bit old school. I thought doctors will/should become your number one resource when your kid gets diagnosed with type 1 diabetes because suggested upkeep for pediatrics is a visit every three months, but even while an appointment every three months seem like ‘really’ that often? Sometimes it can feel like an eternity. But...Where can you go to learn from others parenting T1 kiddos experiences? 24/7 you will find folks from around the world awake and willing to help and share online. An online community. a judgement free group of folks who have been there and get it. Yes, there are T1 Trolls – seeming parents (??) who disagree or steer you in crazy ways like: cinnamon will cure your child (it won’t if you were curious), Oils, vitamins and fad diets will come up, and often get shut down just as quickly (even though. If any of these ideas trigger your curiosity – consult your doctor. Never stop your kids’ insulin regiment for any reason. For now (cue eye’s welling up) there is no cure.  I know, it sucks, and it is okay to admit that, deal with it… keep up with care and continue to hope, pray, fundraise, sing, dance… whatever you do to bring us towards that cure.

So you understand that doctors alone can’t and won’t cut it. How about friends and family. In a perfect world with unicorns and rainbows, they will be tremendous support… and I am an optimistic person, but believe me when I say, unless you are going through it, this one is tough reality to really understand unless you live it. Invite your family along for learning sessions, and close friends too. You will want and need back up even if you think you have this on your own. When my son was 4, I waited 3 whole years to trust even the grandparents to keep him safe under their care overnight. Extreme? Probably… but I needed to know what I was doing and be able to explain it in a way that allowed others to care for my child in a way that made me comfortable knowing they would be safe. Plus, changes will always occur, and non-parents of T1 (NPoT1) will say, ‘but you said_________ last time’ and they are right, changes happen, daily, hourly and sometimes by the minute in how to care for a T1. So pace yourself, we are in this for the long haul (if our kids choose to keep us in their lives that long) –  other POKED, they will get you, bond almost instantly and understand changes, because they experience it too. 

And get yourself (and possibly your kiddo, if necessary) a family therapist who can help navigate the tricky waters of parenting kiddos if you are lucky enough to have a (T1) specialist in your area don’t miss this chance. I am not saying you need one today, but if you do, or your kid does, know you are not alone, we all need help in parenting (why don’t kids come with manuals?!) and not burning out from managing T1 is something you and your child will endure. Sorry, but even without T1s life gets complicated and teens melt. T1 just puts them on a flaming course to navigate safely, and it can and will be done. most even make it through without many battle wounds. Especially those who knew it was coming, and were prepared.

Refresh//Recap...and then there were two... (2013)

How it all began - Diagnosis
Our story:
Kid #1 – he was 4 and a very even-keeled kid. He was potty trained at 18 months old. (I’d like to take credit for that but it was self-taught with the right tools provided) and was happy in his preschool. At the end of the school year the kids were passing around a virus, a nasty cough that seemed to present as a croup like cough in my kid, who often got a croup-y cough. We took him to the Dr. who prescribed an inhaler. Not unusual. That weekend, gramma and grandpa came out for a visit with their motorhome and we went for a little adventure. We packed a few snacks, a few drinks and headed off to an exciting outdoor trek a few hours away. Jared had a snack, a coughing fit, an inhaler dose, then fell asleep. I should mention, at 4, he didn’t nap anymore. While sleeping, he wet himself. Now under any other circumstances if I told you, or anyone, or published that my kid had an accident I would be a horrible parent. In this case, you are probably thinking ‘phewph that was us too’. When he woke, he was more concerned with being thirsty than being wet. We passed him a water bottle and faster than a frat boy on hazing day, he downed that water bottle and asked for another. I knew something wasn’t right. I thought the inhaler was causing this madness and called the Dr. asked for an appointment and when she asked why, I told the nurse that I was taking my kid off the inhaler. She said ‘you don’t need an appointment to take your kid off medicine that’s your choice’ I assured her, something was wrong and he needed to be seen. They couldn’t see him for a few days, ironically until the last day of school. 

Fast-forward to the last day of school: kids are decorating their own frosting on cookies and enjoying juice as a treat. Why not, right?! My Kid clung to my leg feeling lethargic all the way to the Dr. that afternoon. When we arrived he needed to go to the bathroom, I asked for a urine cup, they laughed and asked why. I said, I checked google and I wanted him to have a urine test to be sure. They obliged. The doctor came in and saw us. He said the strange behavior isn’t so strange for a kid leveling up to Kindergarten. ‘Don’t worry’ he said. He walked out to check on the test I had asked for. Moments later he walked in with a different tone. He said “Call your husband, and a friend. Your friend to take your daughter (who I also had in tow) and your husband to meet you at the hospital. Your child has Diabetes.” As I recall it, I looked him in the eye, and replied “you said he was scared to go to school!”

I am not sure how the rest happened, I just remember who took my daughter, and being in the hospital. My husband did meet me there. The ER was waiting. I guess that sugar cookie had made our sons blood glucose (BG) 700. I didn’t actually know this, but, it shouldn’t be over 150 for 2 hours after a meal as a non-diabetic. We were well past that point. We also found out he didn’t have Ketones (which we also later found out was an incredibly lucky thing.) They weighed him, and we asked to weigh him again. At his Dr. apt a week ago when he got the inhaler, he was 6 pounds more. For a 4 year old – that is like serious poundage. It hit us both that in his bath, we noticed his ribs and thought it was strange but it was an after-thought/realization. We also blamed ourselves, how did we miss it, how did we not catch it sooner. They assured us we were lucky that we caught it super early. His diagnosis story could have been very different. We spent the next 3 days being taught how our life would change, and then we were set free to replicate this new life in the wild.

Kid #2- kid #1 is now 10 years old, and kid #2 is 8. This story is about kid #2 but starts out with a strange happenstance of kid#1 ending up in the urgent care due to falling off a trampoline and (ultimately) spraining his finger (yes T1 kids get hurt like normal kids too.) I was walking in the door from work when my son told me he needed to go. It was dinner time, and I knew the waiting room would only get busier and busier. I grabbed 3 protein bars and his sister (kid #2) and we left. While waiting for his x-ray, she started complaining about not feeling well. It is now 8pm and I am feeling like a horrible parent and call my husband in for back up – tell him to stay with my son (bring him dinner) and I would take my daughter home and feed her dinner and try and get her to feel better. We got home, she plunked herself on the couch and said ‘I have never felt like this before, I feel so strange, I don’t feel sick, but I don’t feel well. Help me. I am so thirsty.’ I handed her, her brothers G2 from his soccer game that was out on the counter, she opened her throat like a baby bird and in one single gulp that whole double sized bottle was gone. She asked for more. I told her to quit joking around. She was confused at my statement. I said, you know what extreme thirst and feeling sick means. She said “Diabetes?!?!” I said “Could be! So when your brother gets home we are checking your blood sugar” Moments later with a splint on his finger (which was far less attractive than the lego one I had made him last sprain) I asked for his poker and meter, we needed to test his sister. He looked so confused. He is a good kid and wouldn’t wish this on anyone (even his little sister) We poked, and she was 380. Oh Sh*t. We knew a hospital trip was in our future.

(Side script: when she was 4 and my husband was on a business trip, she ate a donut at a birthday party and wet her bed, I freaked out and called the endo – I checked her bg that night and she was 180, the endo said, don’t freak out, if you are really panicked, take an at home A1C test and see what the averages are. No one really studies what healthy normal kids bg’s are post donuts and birthday cake. So the next day I got a 2 pack of A1C’s and that night I used the first, her result was 4.2. She was fine. Relief. The night of the finger sprain and G2, when I tested her, she was 7.4. Oh Sh*t.)
We were armed with 2 numbers indicating the inevitable. 380 BG and 7.4 A1C. We tested her for ketones and that was clear – phewph! She wasn’t in danger. So we asked her if she wanted to sleep with us that night to keep a close eye on her without letting her know what was going on. We packed our bags for the morning and headed in to the ER. Things should have gone smoothly right? Well, when we got there her bg was 149. 1 number below the protocol for admission. I asked my husband to grab her anything from the coffee shop we shall not name, and voila – her bg within minutes was back up to 300. Then, it took… hours. After 3 more hours of waiting, my husband asked if there was a diagnosis, or were we on a path to finding one. He looked at us with uncertainty and said ‘we are on a path to finding a diagnosis’ my husband said… does the path fork? Or is there really only one outcome? My daughter who was working on being a better self-advocator who was quite shy shouted out ‘Do I have diabetes or what?’ Good for her I thought, she had said what we were all thinking. He looked at us all and said “Yes.”

Just like with our son, we were sent to the diabetes education floor and we were about to embark on a journey with our kid #2 on one we didn’t sign up for. She was a trooper. She did everything they asked, she was brave and strong and actually said ‘This explains a lot, I wasn’t feeling like myself and now I know why’ to be honest, I think she was a bit jealous at all the attention her brother got and the pity from some older relatives. I hated the pity. My kids aren’t victims.
The next morning at rounds, they called me and my husband out to rounds. They introduced us as the ones who diagnosed our daughter. They said without us, she would not have been diagnosed until possibly she would have arrived with later staged diabetes due to us being told to ignore our data which could have led to DKA (Diabetic Keto Acidosis) if let go long enough. I believe they later looked at their protocol for variance over 1 number and looking at bigger pictures during admissions. (like a1c etc). My daughter had been observing her brother for so many years she asked if after 2 days she could go home instead of staying for all three. They trusted us – and we were all happy to go home.

...and then there were 2.

Wednesday, June 6, 2012

Hard knocks advice - when siblings say "it's not fair" (Both sides)

I will share some hard knocks advice I got from my dad shortly after my son was diagnosed and I struggled with the same thing (my kids are 2 years apart). Here goes.... "life is not fair" " life is especially not fair for diabetics, so get used to it" *note, he is in the medical profession and is a very loving, but a straight shooting talker, it came from a good place and was a hard pill to swallow for me too (came with a few tears at the time). So.. how did I translate this with motherly love to my kids?? I told my son(T1) that sadly diabetes means life won't always seem fair, or quite frankly be fair... that there are what some may see as perks for him (sweet treats, eat when you are hungry or low and a bit of perceived extra attention (medical or not, like it or not) even though they get to eat whenever they want, they won't understand what it is to be inside your body,and you just need to keep strong and do what is right for you. and to my daughter (younger sister) we had a talk that it might seem like her bro (T1) gets more treats and in her mind more attention, but it comes with a responsibility - he gets shots, when he sees her eating and wants to eat it too, he has to poke and had to get shots (at the time, now he boluses, which seem far less troubling to her as a little sis, and in her mind, that we should consider renegotiating just how fair things are ;)) If she had to trade a sweet treat for a shot, would she? Now to put things further into perspective, 4 years later (last endo visit) they are both older, T1 is seeming pretty second nature to our family, sure he complains about always having to carry his case around, and check before he eats, but the true perspective came when she had to come to his endo appt, (i had no choice) what she saw was a side of her bro that she did not know... he was comfortable at the hospital, knew his way around, smiled at the familiar faces and was not phased, and all seemed great, the doctor knew him well when she walked in (After all, he has been going every 3 months for 5 years now) then she said, "time again" my son's eyes welled up, and my daughter had no idea why this 'secret code' made bro so sad... he needed blood draws again, he cried and acted out and really got frustrated he gave his straight talk to the dr when she said to calm down, it was only one draw, then he corrected her and said, ' one... a year, for the rest of his life!'... his sis then realized that there was a whole lot more to this than she saw or knew... that diabetes does suck, and the perks, or what seem to be perks, are well deserved and what seems to suck for the T1 does. This is life... not always fair, but lots to be thankful for and walk proudly in your own shoes, because when the grass seems greener elsewhere, consider watering your own, and growing your own flowers to see the beauty in what you have been blessed with.

Thursday, May 10, 2012

How G-D selects the mother of a child with Diabetes - By Erma Bombeck

HOW GOD SELECTS THE MOTHER OF A CHILD WITH DIABETES by Erma Bombeck Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. Did you ever wonder how mothers of children with diabetes are chosen? Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger. “Armstrong, Beth, son. Patron Saint Matthew.” “Forrest, Marjorie, daughter. Patron Saint Cecilia.” “Rutledge, Carrie, twins. Patron Saint Gerard. He’s used to profanity.” Finally, He passes a name to an angel and smiles, “Give her a child with diabetes.” The angel is curious. “Why this one, God? She’s so happy.” “Exactly”, smiles God. “Could I give a child with diabetes to a mother who does not know laughter? That would be cruel.” “But has she the patience?” asks the angel. “I don’t want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she’ll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I am going to give her has her own world. She has to make it live in her world and that’s not going to be easy.” “But Lord, I don’t think she even believes in you.” God smiles. “No matter. I can fix that. This one is perfect. She has just enough selfishness.” The angel gasps. “Selfishness? Is that a virtue?” God nods. “If she cannot separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with less than perfect.” “She does not realize it yet, but she is to be envied. I will permit her to see clearly the things I see…ignorance, cruelty, prejudice…and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side.” “And what about her patron saint?” asks the angel, his pen poised in mid air. God smiles. “A mirror will suffice.” ~By Erma Bombeck

Wednesday, March 3, 2010

A night like tonight...

Things have been busy, but somehow managable on the diabetes front and so, we live.. day to day, moment to moment, like my son and so many other diabetics and parents of t1 kids.. we do what we do each day and night.

tonight, I remember why I used to be scared of diabetes... because tonight after watching a show to stay up the extra 3o minutes to be able to check my son at a reasonable time to know if I could go to bed early rather than be on BG call all night... I checked him, like I always do... most of the time he is in range, sometimes needs a bit of a correction.. not gonna lie, sometimes a bit low.. like other nites, tonights low was not alarming, but oddly his reaction when I tried to wake him was... he was barely lucid... he was able to drink the carbs (thankfully - no glucagon needed).. but kept doing some other really illogical movements and his speech was totally not english, or understandable for that matter... that scared me...

I am going to check him again soon (after 15 minutes) but I had to blog from my quiet house while everyone else sleeps, because that moment like others in the past reminded me of how scary diabetes can be.. and how the nights were so scary for so long... and I don't think I took the other quiet nights for granted.. but I did forget how scary it can be.. that if I had fallen asleep or 'did not feel like getting up' (Hasn't happened but I can see how it could) to check on my little boy... it could have been very different for the rest of our lives..

It is a disease that is totally manageable, but totally unpredicatable...kind of an oxymoron (or ironic) ...

Kiss your babes tonight for me, and I am sending out good vibes and love and support to those who like me, have a night where... it could have all changed, but didn't.. and the kids are none worse for the wear.. but the parents roll over and curl under the blankets like children and try and find comfort... and love... and strength, until they wake up and check thier sleeping children again, or see thier smiling shining faces in the morning.

Wednesday, January 6, 2010

Do we really expect more from the media??

It is sad that a young 30 year old woman has died, Casey Johnson and socialite and heiress to the Johnson and Johnson , she was diabetic and may have died of diabetic related causes as she was not known for taking the best care of her diabetes in years leading up to her death. (according to hospital reports and media reports) Ironically she had co-written a book with her parents about parenting a diabetic child. Donations in her honor are being made to JDRF, which is very generous and nice of the family. My thoughts are with them.

The media is always brilliant.. After she died, and stated she was a diabetic, they said they found insulin syringes in her home at the time of death.

I have two words for them " no kidding !!!!"

It will be interesting to see how the media spins this and what it does to further the confusion the world has about T1.. lets hope the media gets this one right'!

A microscope into our children...

I have said since shortly after Jared's diagnosis that we have the (unchosen) opportunity to have a microscope into our child.. we know what birthday cake really does ;) we can see how stress effects children, when they are growing, when they may be 'truly' scared to the core...

Yesterday was first day back at school after winter break for my kids, most kids started on monday. Sunday night Jared had trouble falling asleep... not only because he was nervous, but recently he has had an ongoing cough (going on 6 weeks) that was diagnosed as 'nocternal asthma induced by winter' so his cough does keep him up at night, but ... not much more than any other night in the past 6 weeks... his bg's started running high just before midnite... after two high readings, we decided to check for ketones (which yes, we are supposed to always do, and we usually do, but sometimes, if we know it was icecream, or a birthday party treat... we forgo it) Just after midnite, he had trace.

To comment here and say that Jared is in great control from what the dr's say.. he checks 8 or so times a day, always covers for what he eats if not before eating, but during if he does forget.. and has an A1C that the dr's are happy with being at 7 and previously in the 6 range... but WHY.. why do the dang ketone pop up ?? and out of know where it seems?

When you get trace at midnite, there is not much to do.. we continue to check him and give the regular insulin as usual... and of course, by morning - Large ketones... doubled the insulin and they were gone pretty quick, but so was the first day of school.

When it was all over, Jared said ' I hope I can sleep tonight, because tomorrow is MY first day AGAIN....' We talked about nerves and why he might be scared... and oh my.. did he really get himself so worked up and stressed over the first day back after such a wonderful break that he had ketones? (they were there and gone really fast this time)

This reminds me that sometimes maybe I need to ask even MORE questions before I rely on the 'microscope' and find out how to overcome what we can before we need to deal with the diabetic side effects of stress, and emotions...

I will still never forget when Jared was 5 (2 years ago) and over the holidays he heard 2 people he loved (not his mom and dad) fighting and yelling at eachother.. from the other room, he yelled "stop arguing - you are so loud.. I can't play" .. I went in to make sure he was okay, his voice was trembling at the top of his vocal chords from yelling.. and sure enough... that emotion had stacked up his BG to 400!!!

There is so much about T1 we can't control, but so many other things that if we stop and think, we can contribute to making it easier...

In 2010, I want to not jut be on top of Diabetes care, but on top of managing (both) my kids feelings, emotions and fears... and make it a great, happy and healthy success!

Everyday, I learn more and more from my kids :) and for that I am greatful!

Thursday, November 12, 2009

Checking in...

It has been a while, things are good, and generally quiet on the homefront, so I have been feeling busy with work and home. In fact I have been working hard to creat an educational non profit diabetic foundation providing information for newly diagnosed families and services and outreach programs for everyone... More to come on this.

Today was a good check in with Endo.. Labs day for the poor guy, he gets so upset, considering all he goes through in a day, I don't tell him to toughen up, I just cradle him in my arms and kiss his cheeck while they draw blood. It is over.. a quick lunch as a treat and back to school he goes. We did have a decent A1C which is good.. a 7.1.. they seem happy with that... and so I will be too.

The odd thing was after all that (diabetes care/dicussions) when we went for lunch.. for the first time (for me) I forgot to check his blood sugar... he had only taken a bite, but oddly.. for a second, I had the elated feeling like he didn't have diabetes.. odd I know... and I have not had this thought any time other than in my fantasies... but we checked and on with lunch we went... but odd. Humm.. .something for me to think about, how I let it go for a second... not that we ever can, but for that second.. it felt nice... I hope someday he gets to remember what it is like to not have to check before he eats, and not feel low after school and go to bed when he is tired, not lay there feeling the odd intuative things he feels about his body and the glucose and insulin rushing through it.

Happy World Diabetes day to all.. .we are off to celebrate it at a outreach program I helped out with for all kids to hang out at a kids museum with their families and sponsored food...a chance for them to still while bolusing and checking before they eat.. to feel ... normal... or atleast like most of the other kids in the room. No one looking.. wondering... what kind of cell phone needs blood drops??? (thank you vampire fetishes and electronic minds for that one)

Happy day, lets celebrate our friends and family who deal with this everyday!

Tuesday, September 1, 2009

First day of school!

So far so good. I write this part way through the day, and I am here, back at my desk (which is unbelievable in itself!) My son had loved his past school.. and still, he "needed" me there for the first week as he acclimated and settled in. This year, I had him and my daughter both going to a new public school and she started Kindergarten today. I was nervous about how I was going to juggle this...

I am happy to say, as per most 'non diabetic' (I was tempted to say 'normal' non-diabetic families) I had to spend most of my time settling my daughter in. I floated around the school per their request for the first 4 hours of the day, but Jared's numbers were fantastic, he ate, he played, he learned... I left) Well my daughter did need me at lunch to sit with her (and the team at the school had my sons' bolusing covered- so I did not need to be at his table as predicted) and holy cow.. I think we have success! I am an optimist, I am sooooo happy with the school and don't see any problems occurring. So a few hiccups, like the transferring of the diabetic kit (BG tester/Omnipod remote) from lunch to recess and back to to the class, but overall - a HUGE success!!!

I could not be happier....

I am thrilled with the principal and the teacher and so proud of my kids for hanging in there, and trusting us to find them a safe school.

Thursday, August 27, 2009

Past Letter to the parents of my childs class

I recently found the letter I sent to the nurse at her request (from the private school) to send to the parent's of my son's kindergarden class, it may be helpful for others to utilize in some way or repurpose. (for example, Jared won't likely need me there at lunch each day anymore and someone else can now verifiy his carbs so I don't HAVE to be there as often as I did two years ago when the kids were asking why Jared's mom got to visit the class so often ;)

Dear parents of (my child's teachers) classroom,

We are writing to inform you that one of your children’s’ peers (Jared) has type 1 diabetes, it is a condition that affects his ability to absorb glucose (sugar) and turn it into energy.

So during the day, he does a few medical checks to make sure that he is in a healthy range and can study and play like the rest of the children. Treatment and maintenance involve finger pokes (in the classroom) and also some injections ‘medicine’ (occur outside the classroom), also he may have additional snacks during the day as a part of his treatment.

Jared needs for you and other people around him to know that he has diabetes. However, he should not be and does not want to be treated differently. Things we want you to be familiar with about diabetes are in this letter. Usually his diabetes is under good control, but he may have problems if his blood sugar gets too low or too high. To keep that from happening, we work with the doctors and teachers and have to do certain things.

It may help you to understand those things better if we tell you about diabetes. Please know that diabetes is not contagious. When a person eats a meal, the food is broken down into different substances, is absorbed, and enters the bloodstream. One of these substances is glucose, a sugar. The body cannot function without glucose. In turn, the body cannot use glucose without insulin which is produced by the pancreas. Jared’s pancreas, like that of other people with diabetes, doesn't produce insulin, so he has to take insulin shots every day. It's mainly insulin, exercise, food and stress that cause his blood sugar to go up or down. Sometimes he may have a low blood sugar or a hypoglycemic reaction.

Jared usually knows when his sugar is getting low, but sometimes he may not, so he counts on teachers and parents to recognize the signs.
glassy stare

If the low blood sugar persists too long, Jared may seem sleepy and withdrawn. If any of these symptoms occur, the teachers give him a sweetened drink, milk or orange juice to drink or something from his "Low blood sugar food stash in his locker." Food is used as his medicine in this case. Like any child, he may resist, but if you notice this behavior; please be firm and make sure he eats something with sugar. 15 minutes later he should be fine… if not however we (His parents) may get called to come in and check on him ~ Your children may notice “Jared’s mom comes to visit the class at lunch each day” This is to help with his care and treatment and is necessary at this point until he is older and can help with his own treatment.

We are writing not because this affects you or your child directly in any way, but we do ask that you save the packaging for snacks that may be brought for your child’s birthday celebration at school so we can correctly dose his insulin for his snack, so he can fit in with the rest of the kids in this situation. Also we realize since the glucose testing or ‘finger pokes’ happen in the class room your child may (or may not) ask questions. Hence this letter informing you of what is going on.
If you ever find Jared unconscious, anytime, and you cannot awake him, call 911 immediately.
We appreciate you taking the time to read this. If you or your kids have any questions, we are happy to explain further.

(Jared’s Parents)

The final countdown to school...

Well, we have had meeting one with the school nurse and today will be meeting two.. with the nurse (who is not at the school often as she has 6 schools and over 2000 students) and the principal, teachers, counsellor and volunteer aid.

Jared is quite nervous to be making a change of schools period. For those who have not read back posts, Jared had been in private school for the past 2 years as he was diagnosed with Type 1 mere weeks before kindergarten started and the public school was not able to commit (yes, I know it is illegal) to his safety. (Jared himself commented as he walked out the door after his first meeting with the school nurse at the time saying " does my new school not like kids with diabetes?!?!?" (this crushes me to even remember that day). Regardless, we were not prepared to test their lack of readiness to prove a point that no child should be left behind! We took out a loan and sent him to a private school where the teachers all volunteered on weekends to go to the hospital to take classes on diabetes and treating children and administering injections (Which otherwise is illegal in public school in the state.

All that being said, a new school is always hard, a new school with a history (as much or as little as he remembers from two years ago) is hard for both of us. Since then, with the principal change and a new school nurse, we are willing to give this school a good chance. My daughter is also starting Kindergarten there and so they will have eachother at lunches and recess if need be (they are buddies - for the most part ;)

The hard part for me is that they want me to be concise with directions, which is somewhat easy.. there is routine for the most part.. it is the results of those routines which (As most of you know) vary. And if you don't get specific, and you are dealing with a kid... things can yoyo from bad to worse or low to high, or vice versa.

Today, when I meet the teacher, I hope she wants specifics, all these forms are SO non specific, and general... And when you are dealing with a school that has not had a diabetic child there in 20 years, general does not seem to apply! Experience makes things general, lack of .. in my humble opinion requires specifics.

So cross your fingers for us, and hope that the teacher who was 'assigned' my son is interested and wants to know more, and ... I am an optimist (most of the time ;) in time, she will know the specifics and be able to wrap herself around the specifics, until they become generality... or routine. This should be a great year, with new learnings for all!

Thursday, August 13, 2009

Back on the horse!

The Endo went well, His A1C did not change... reports back show he is growing like crazy and he just needed more insulin... we have made some adjustments, and I will monitor him closely (As usual) while the new settings kick in ... First night after settings on the pump/pod change are always stressful, but what I did notice and was reminded of was that he feeds off of me, and if I relax, he relaxes..

And although the endo had trouble with the reports, we both agreed to follow up with Omnipod to let them know that the new download method with the new remote has lost some of its valuable features, and we want to encourage them to bring it back! Hopefully hearing it from parents and medical professionals will encourage them to do this sooner than later!

We are back on the horse, and ready for school, and ready for a new day! Hopefully one that wakes up in range! ;)

Wednesday, August 12, 2009

I feel defeated!

Tomorrow we go to the Endo.. and usually I don't dread the appt, but tomorrow I do. for a few reasons.

1. I have my daughter coming with us - she is the little sister and can get board and irritable and distracting way to easily... and I have to plan to keep her busy and focus at the same time.. not to mention keeping Jared happy busy and not just 'hungry' because he is bored which always tend to happen with our pre lunch appts.

2. I switched to the new Omnipod remote and it now does not download 3 day reports with each individual day, it lists data.(90 days of it). and I am (apparently an old dog and not quite getting this new trick) I am not used to reading this format and feel that it was not 'warning' me (even thought I kind of knew) that he had been running high(ish) for a while. (I am not blaming the technology, I just realized that i used the old technology as a crutch and I can't shake the feeling)

3. I waited until the last second to send his reports to the Endo and am likely overwhelming her with my attempts to get her the important stuff .. which is not a good feeling.. and I hope she gets what she needs..

4. I am expecting a high A1C, and that for some reason makes me feel defeated..

I think I am dreading knowing that I have been letting him be a kid instead of completely obsessing, which I still do, but on a scaled back fashion... I am still feeding him right, and making the best choices possible, but somehow, was okay with overlooking that even though we were doing this, he was running high.. I did not seek help from the Endo immediately... I made a small tweak to his basal rates, but it did not help enough.. so I decided to wait to let the endo do the rest of the tweaking.

I think I am just venting... sorry, ahh I feel better already. Wish us luck!

Wednesday, July 15, 2009

I could not be prouder!!!

I am so excited that my son's book is going to be published internationally to help newly diagnosed kids... Who says being little .. makes you too little to make a difference?? They are wrong!

Jared has written a book (with help from me and his gramma) and has been illustrated by his dad (and his sisters input ;) and based off of his own illustration ideas... His dream and wish was for every newly diagnosed child to have a copy of this book before they leave the hospital when they are newly diagnosed.

Yes, there are books out there, but we think his is different, and now the European market agreed. It sounds like every newly diagnosed child in Switzerland (atleast) will get this book before they go home.

The interesting part is it may be published in Europe before the states... I hope we can get this here in the States as well and in Canada.

I am so proud, I can't even finish writing this now... More details to come... and Yes, I will send a link to the website for the book soon :)

Wednesday, June 24, 2009

Nick Jonas is a good kid!!

Youngest Jonas brother visits White House, Congress to press for funding of diabetes research

WASHINGTON - The youngest Jonas brother spent Tuesday lobbying Washington's power brokers on behalf of diabetes research - starting with the big guy, President Barack Obama.
Clad in a white oxford shirt with no tie, and a grey blazer with the sleeves pushed up, 16-year-old Nick Jonas stopped by the White House for a photo with the president and children who are living with diabetes.

It was his second time at the White House this year. He and brothers Joe and Kevin hung out there with Obama's daughters, Malia and Sasha, on the night of Obama's inauguration.
After the White House, Jonas headed off to Capitol Hill for a private meeting at the office of Senator Frank Lautenberg (D-N.J.) The teen idol and the senator made small talk about music while photographers snapped their pictures.

Roughly a dozen Capitol Hill interns waited quietly across the hall from Lautenberg's office for a glimpse of Jonas - no loud outbursts or attempts to sneak around security.
"I know some people can become star-struck and lose sight of what they're here for, but if Nick Jonas makes juvenile diabetes a cause that people are more aware of, it's worth it," said Ashley Woolos, an American University student and intern in the office of Representative Richard Neal (D-Mass.) "A younger face might bring younger fans and the fact that juvenile diabetes is not just an older persons' disease."

Nick Jonas publicly revealed that he has Type 1 diabetes while performing at a Diabetes Research Institute fundraiser in 2007. He is scheduled to testify on Wednesday before a Senate Homeland Security and Government Affairs Committee hearing on federal funding for diabetes research. Other witnesses include boxer Sugar Ray Leonard and actress Mary Tyler Moore.
The Jonas Bothers created the Change for the Children Foundation, which donates money to charities benefiting children who are disadvantaged or ill. They released their fourth CD, "Lines, Vines, and Trying Times," last week.

Tuesday, June 23, 2009

your age and your childs BG should never match!

Tonight, before I climbed into bed with my husband after a relatively busy day with the kids and tons of work I had to do today.. I decided to give my son an extra BG check... before bed, he had been so active I was sure he was going to drop... and I snuck him a piece of good dark chocolate, since he never even asks for dessert.. it only had 3 carbs (A good find at Trader Joe's in the little tins) In fact, even though his BG was in range, I gave it to him for free... (Pods and pumps make small calculations really easy) but I had a hunch... I thought we could overcome the problem with this...

I gave him the before my bed check an hour before normal because I was tired, and his BG matched my age... That is WAY too low a number! It made me feel young.. and not in a good way.. that by no means could a number that low be good.. it was too low, too young... stop thinking I thought to myself and run and get him some quick glucose/ protein.

Thankfully, he was able to drink with a straw and was conscious... cups, and that low, don't usually work out too well in the middle of the nite.. although I have to say.. I can't say he has EVER been that low at night :( But he has had one time where he was too low to repond to anything but the glucose gel which was a nightmare too... (Yuck)

Well it scared me.. and so here I am ... he has since recovered, BG's are normal and I will try and go to bed soon.. but that fear kinda runs around in my body and mind for a while... not taking any intuition/instictual messages for granted.. no matter how tired I think I am. But still, freaks me right out!

Thank you for being here, for listening when the house is sleeping and my mind is racing.

Wednesday, June 17, 2009

it's coming...

The anniversary date of Jared's diagnosis... 2 years will be on June 20th... although our log books start on the 22nd of June when we were to start logging the rest of Jared's Carbs and blood sugars for life (or until a cure)... to me, both dates are important.

We have come a long way... A really long way. Jared was only on injections for 6 months and as a hungry (Smart) boy who started avoiding carbs = avoiding shots... we needed another solution... Stage left - the Omnipod. For which we are thankful, 18 months of basal rates and easy eating. (Although I have to say that now - 2 years later - Jared does not fret to take an injection is his lower back/ upper butt if the pod fails or he needs some extra insulin.. but 10 injections a day was enough to make us all want to avoid carbs, although he never knew I felt the same way ;) But with the pod, it automated our 'log book' system... it does it all, which was a nice change too. (although I miss the part where Jared got a sheet full of different expression faces and stuck them in his log book to let us know how he was feeling) But I am okay to move on. Each day brings change in so many ways.

We have battled ketones, we have had late night scares, (day time scares), we have been really mad at Diabetes, and we have ultimately embraced this disease (for now) so we can move on. Each day is a new one, one that we try and forget, but are constantly reminded...

We fought with public school 4 days after diagnosis (2 month before kindergarten was about to start) to make sure he was safe. he wasn't. We went to private school for the past 2 years and have gotten more independant in his care and we are venturing back to public with a new principal and district nurse (Who won't be around much) and we are feeling okay... we are moving forward as he must. (although we have not yet finished paying the bills for it).

Jared has come so far... he is a big part of the book that has been written, it is all him, he is an inspiration and has a passion in him to help others who are scared. He was scared, we all were scared.. but we are lucky. Lucky for each day.

I hope Jared's book gets published and that he can have some impact in helping other newly diagnosed kids, or kids who just feel alone and need to know they are not.

I am feeling unsure and anxious about this upcoming day.. because I don't know what to do with it!?!? I have heard some let the child choose how they want to spend the day and be in control of as much of the day as possible to remind them they can have control in thier live, and they have done amazingly well over the past year, others celebrate another year of dealing, and others let is pass quietly. I am not sure what I want to do... perhaps I will leave it up to Jared.

It is coming.. 2 years that mark a huge adjustment in our lives, one that has changed it forever.

Sunday, June 7, 2009

Everyone has their own fight!

I have become a bit more 'sensitive' and although I have always considered myself compassionate, I would say, since Jareds diagnosis (do you capitalize that 'D' in Diagnosis to notate its impact? .. hummm...something to think about??) I have become even more so. I realize this at odd times, often catching myself, not feeling sad for only my son, but for all the people all over the world who live with Diabetes. This morning I did a walk for a cure. Not Diabetes, but Breast Cancer awareness. My first 5k and I did it because a dear friend, whose mother in law is a survivor who walks each year, and I wanted to support her.

(note: Since Jareds diagnosis of Diabetes, for the past 2 years (June 20th will be 2 years to the day) I have thought of doing the JDRF walk, and wished I just did it... I found excuses, including Jared telling us he did not want to, and not encouraging him to try (don't judge please... there are somethings not easy for everyone) I never really knew why... I care about the cure, I care about the fundraising... but until today, I did not understand what it is really about.

Today after the walk, the survivors had a parade/walk... and I cried. I felt a great energy the whole walk, I got teary eyes as the cheer leaders on the sidelines cheered us on, I got emotional when I saw the effort that those affected put into their team costumes or personalizing their shirts (including the little girl with the pigtails who could not be more than 6 years old whose shirt read (' In memory of my MOM' and it was decorated by her with flowers and hearts and all things little girls know how to draw best), and at the end, when I saw the whole group of amazing, strong women who faught for their health and for their life... I cried.

Everyone has a fight. We fight each day for another healthy one. Others fight against other illnesses.

Today reinforced to me that these walks are so important, because of who they touch... everyone who is there. Especially those who have had to fight the hardest to be there.

I know that in that sea of people.. no one, no one... NO ONE felt alone. We were united and for some reason, I know that I not only was blessed with getting energy from these amazing people today, but hopefully I was able to give just a bit of energy too.

All this aside, I know what my real fear was about the walk for our cause.. and I now have year to overcome it. I don't want to cry in front of my son, and let him know how much this affects me. He knows we all are frusterated with irratic blood sugars that are out of control, and the fact that we wish that no one had to have diabetes EVER, but he (to the best of my knowledge) does not know that this disease makes me cry sometimes.

and you know what else I learned... it is okay to cry.. because we are not alone, there are so many around you to send you strength without even knowing it and those tears dry pretty fast. Not for any reason other than... we have SO much to be happy about, and so much to be thankful for... for each day, everyone has their own fight!

Thursday, May 28, 2009

What do you want out of it?

So Jared, his grandmother and I have been working on a book about diabetes for a while now, we have gotten to the point where we are trying to get it published and 'out there'... He must have over heard a conversation between my mom and I and 'what we want out of this book' now that it is finished... so my son on his way to school today said.. "Oh, i have to start thinking about what we want out of this book." I asked him what he meant... he replied with " you know.. the price..." " the the people in Hollywood are maniacs" I asked him what the meant by that and why are they maniacs?? .. he replied " Well their price is high.. they make so much money, and they are maniacs because they spend it on themselves.. instead of research to find cures!"

Well, I know what Jared wants out of this...

The interesting thing is.. that we do not often 'talk' about the cure.. we focus on today and each day dealing with what we have and being the healthiest we can be today. but last week, at night, as my son slept and I snuck in to check his BG.. I looked at him sleeping.. and I wished for a cure... a really loud (in my soul) cry for a cure... I want him to just sleep and us to just sleep and eat and play and live.. without diabetes.

So wish us luck with our book... We are hoping to get it sponsored so every new diagnosed child will get a copy. We have yet to find another book out there like it.

Do you have a great book that your kids love/ed when first diagnosed? Did you appreciate free books when your child was diagnosed, or did you go out and buy a book or go to the library? Were books helpful for your child during this hard time?

Sunday, May 10, 2009

A happy mothers day to you all

I can't remember which blogger it was, but I recall some mom out there who had ketones and vomitting child out there each year (it may have been valentines day) but in either case, I hope you all get the day you want, and a child who goes to sleep with less fear than when there are ketones.

I think of this story, because... We had a great day... my first breakfast in bed... playing in the yard in the sun, and even a 2 hour boat ride for kicks... we all had a blast. Odd thing was... Jared turned to me on the boat and said.. I guess I am 300... I asked if we should test and then kept looking foward and smiling with the wind on his face as he held and waved the rope from the front of the boat as though he was steering a horse.. with an excited 'heya,heya...woo hoo'. I reveled in his joy in that moment and having has checked him an hour earlier and he was at 190 I was skeptical and thought... we will be back in one hour, waiting one more hour will be fine... He was having such a good time, I just wanted him to be the kid who was having the best mothers day ever!

he was 420 a hour later.. HOLY self reliable CGM brain in a 6 year old. His pod got itchy, and sure enough he scratched it / pulled it/ poked it off... and has not been getting any insulin for about 4 hours.. including his lunch bolus...

I thought... ketones? should we check? we should because if we don't, they could be there, then I would feel guilty.. I would rather just check and say 'phewph' good night. He again called it... he saw the strip as he peed on it change color... he knew the moderate color.. he said moderate, then said..'the one before large, and after small' He is such a good kid, who knows so much about a disease that should not be! but is :(

Extra insulin and off to bed for him... Happy mothers day mom...

p.s His card to me was a poem, and he said 'Mom,I love you and thank you for feeding me and giving me good food. I love you.' For most moms, this may have seemed odd, but for me.. I know, he is saying thank you for keeping me healthy and alive with diabetes. After all to a diabetic kid, food is medicine.

Happy mothers day to all you moms who are up too many nights, probably cry a few silent tears and laugh and love your children ... And care for them so tenderly.. they know it, even if they seem to little to show it.. but when they can... boy you know it is all so hopeful...and everything is so clear!