Jayden's first soccer game of the season.............GOAL x6

  Saturday was Jayden's first soccer game and he has turned into quite the soccer player all of a sudden.  I am still amazed he scored 6 goals today.  He was so proud and so were we.  I can't believe how a few months since the last season and some practicing have made such a difference.  I remember watching him last season, which was his first time playing on a team and trying to get him to make contact with the ball and not run around in circles on the outskirts, lol.  He was everywhere, except where the ball was.  He did have a kick that is still remembered by his coach at the time where he made it from one end of the field into the goal on the other end.  He was pretty proud of that one : )  So here's to a great soccer season and thankfully not such a hot one.  We are lucky that all of his games are at 8:30am so that will be nice and we can walk from the house, even better!  Not even diabetes will stop our little soccer player, GO JAYDEN!

 Mr serious soccer player

 Jayden getting instruction from coach Michelle

 He definitely has a kickers leg

 Working his dribbling skills, look at the determination on his face : )

 This was right after a goal, trying to be cool about it but giving a 2 thumbs up to us : )

Running to the goal

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Trial day #1 at school, FAIL!

     Well, today was the first day that neither my mom or myself went up to the school to help with Jayden's checks.  The health assistant asked to let her try on her own but that she would most likely be calling me when he came down.  I said ok, let's give it a run and see how you do seeing as my confidence was building with her understanding of how to handle Jayden and his pump.

     10am check, she checks his sugar, calls me, he's in the 300's so she double checks that she enters both his sugar and snack so that he can go back and eat it in class.  Ok, good so far.  11:45am comes, no call, but I thought maybe his sugar was fine, she felt good and was going to call me after lunch.  It's always bad to assume anything!  I get a call after lunch.  "Jayden was not sent down to check his sugar before lunch and I lost track of time, what do I do now?"  Um, what???  I find out that his teacher was responsible for giving math tests to the kindergartners so there was a substitute in his class, not trained to deal with him but she was right there if needed, so she forgot as she was stressed with trying to teach 5 & 6 year olds how to bubble in their answers.  The health assistant just didn't pay attention.  UGH!!!!!  I remained calm as losing it with her would have made her come unglued and undone all the training that I have worked so hard to do for the past 3 weeks.  I wanted to yell and scream, trust me but I didn't and I told her I was going to contact the principle and guidance counselor to find better solutions.  I am still waiting to train at least 2 backups and for my copy with all signatures of the 504 plan I put into place.  Deep breathes, deep breaths.........................

     Ok, so we just did a site change this morning, most likely his sugar was on the lower to normal range so we should be ok and he will be picked up in a few short hours and we will test again then so no worries, WRONG! 

     The health assistant forgot to give him back his log paper for me to know his numbers, so she went to find them now at recess and sees his teacher sitting at a table with a box of cupcakes and juice and was getting kids gathered to give out.  They usually do this at recess.  It seems every kids birthday is the beginning of school as this is the 2nd cupcake party they have had.  If I brought some on 8/29 for Jayden's birthday that would have made 3 in 3 weeks!  I was not even going to go there so I didn't and now I feel like the crappy mom that didn't celebrate her sons birthday in school but I also don't want my diabetic child eating all that crap! But if he sees it I can't say no.

     When the teacher saw her coming, she then panicked and said please take him to call his mom and see what to enter and if he can have it.  She did and I told her what to do and it was ok.  The health assistant thought she saw him about to be excluded but upon talking to his teacher that was not the case.  She had just sat down after having them do testing outside too and was asking the kids who wanted one and who didn't.  She had not got to Jayden yet and that would have sounded alarm bells for her to have a call into me.  Now of course his teacher is going to talk to the health assistant since they are not on the same page, ugh! 

     I work hard to avoid stress and complications yet somehow it finds me and drives me insane.  Now I have to meet with the principle, guidance counselor, health assistant and teacher to get this all sorted out again. Also, figure out who the back-ups are going to be and train them.  Living with diabetes 24/7 is a royal pain in the ass!  I hate it so much and wish I could get rid of it.  It's supposed to get easier and in some ways it does but in many others it just gets more complicated.  I HATE IT!

1 Corinthians 10:13 starting with verse 12

"So if you think you are standing firm, be careful that you dont fall! No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can stand up under it."


What does not kill me, makes me stronger.-Friedrich Nietzsche,


German philosopher (1844 - 1900)

     I have a bracelet that says this and it helps remind me that these things will only make me stronger!  I will use these experiences to educate others and help other families avoid the struggles that I have endured and what no one should have to go through!  I will become an advocate for my son and so many others who are more commonly becoming diagnosed everyday.  It's sad that this disease is on the rise, yet so many know so little about it.

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The Highs..............The Lows

It has been a crazy, hectic week.  At least we were able to get away to Clearwater Beach for the weekend.  It's always nice to spend some time at the beach.  The boys love it.  
 Jayden enjoying the sunshine

 Building sandcastles

 Jonah was enjoying the sand a little too much.

Me and the boys in the water

I always take Jayden's pump off at the beach for awhile and check his sugar regularly.  Sand in pump= bad news.  He comes up to me and says he's hungry so I check him and he's 36.  WHAT?!  That's the lowest number we have ever seen and of course he's not symptomatic at all.  Just hungry but still playing in the sand as if nothing was happening.  Wow, this is nuts!  So give him a juice box and re-check in 15 min and he's up over 100, whew!  Of course he throws a 36 at dinner time again.  Two in one day, that's too stressful!  Then I imagine if he was on his pump, his number would have been lower.  It scares me a little.  I wish he could recognize his symptoms better.  I'm hoping now that he's 5 he was start to recognize them more.

We found an awesome park, Largo Central Park right next to out hotel.  Orlando, you need one of these here!  It's the best park I have ever taken the kids too.  And it won awards too.  It had this cool train you could ride on the weekends that went all around this big park.
 This is the train that you ride through the park.  The boys loved it.

 They had a tunnel it went through.

 A bridge it crossed over
The boys being loving : )

 Jonah my big climber

There's the innocent look, who me?

Jayden had so much fun climbing on everything

We also went to see Fort De Soto which was small but pretty cool.  It's nice to show the kids history here in Florida since we have so much here.  Jayden loves St Augustine and keeps asking to go back so I guess we need to make that trip again soon.
 The boys next to one of the canons

 Another canon

 Jaden in the canon : )

 Help, get me outta here, lol

 Fort De Soto

Precious!

It was a great weekend with the family and our friends.  I love spending time like this to relax and unwind and have fun.  Now off to help the health assistant with Jayden's lunchtime sugar check. Yes it's week 3 at school and we are still going there daily.  Ugh, I hope I can trust she will get it soon and he will be ok and safe.  DIABETES SUCKS!

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Isn't this supposed to get easier?

Well, we are almost through the first 2 weeks of school.  Today was the first day I dropped Jayden off at the curb to watch him walk up the walkway like a big boy.  That was tough but he does have to grow up and I have to let go just a little and trust he will be ok.  I really would be ok with it if he was not diabetic.  That just makes life so much more complicated.  It's so difficult to always wonder if your child is ok when he's not physically in your eyesight and to trust strangers to keep him safe and alive. 

Things have improved at school but I'm still skeptical about the school health assistant.  It seems like she understands the process to a certain degree.  That of course does not make me feel great. I know, she has had a crash course in diabetes 101 in less than 2 weeks time, where we have been living with it 24/7 for the past 2 1/2 years.  If the clinic is quite and she can just focus on him, she's good.  As soon as there is other distractions, forget it!  Well, the clinic is constantly changing and kids coming in and out so if multitasking is not her strong suite, she is in trouble!

Things are being put into place, slowly but surely.  They have begun to train a backup person and still working on the second one.  I have yet to meet these people and do my training for them.  They are supposed to have someone the clinic person can call on where there is the avalanche of kids in the clinic at the same time Jayden is supposed to come in and test.  Of course there have been a few times when she calls and the person cannot come down so that defeats the purpose of a backup, hmmmm.  There has been a suggestion of having them come down at the specific times of testing, if its quite then great, off they go.  If there are tons of sick, hurt, sniffly, achy kids in there, then they stay.  It amazes me what kids come to the clinic for.  I would lose my mind working in there all day long!

Thank God we have a long weekend to try to relax.  We all need this.  It has been a difficult first 2 weeks.  Jayden goes back and forth with he likes school and he hates it!  Usually the mornings are I hate school and don't want to go so I have to be the not so happy momma to get him out the door on time.  By the time it's pick up time he says he had a good day and school is fun.  Hmph, I hope this is not everyday.

Many people don't know that diabetes is a 24/7, non-stop disease.  Everyday is a new day and a new adventure and you never know what the day will hold.  It might be a good day of wonderful numbers or it might be a day from hell where you just can't get it under control.  His site might be good or not so good or he just might pull it out and not tell anyone for hours until you pick him up and then he says something, of course resulting in very high numbers (yes he did this to me twice in pre-k).  I was less than happy as you can imagine!  I still have my positive days but some days,esp last week it breaks my heart that as his mother I can't make this better or take it away.  It's not fair to him and I get it when he says I don't want to be diabetic anymore.  I don't want you to be either!  It sucks, it's not fair but it's here to stay with our family so we make the best of it and try to help others who end up becoming part of this group and become a support system and pray for the cure someday soon!












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Jayden turns the big 5 today!

Happy Birthday Jayden!!!  Wow, I can't believe your 5.  It was at this time, 9:30pm 5 years ago that I first saw you.  I remember that day like it was yesterday.  You have grown up so much over the years and I look at you now and you are starting to look like a little man.  It's hard to see your babies grow up but it's also exciting to see the adventures ahead.

Jayden is still liking school so far.  That's a good thing.  He had a Happy Birthday hat on all day today that his teacher gave him so he felt extra special today.  It was cute.  There is a little girl, Olivia, in his class that keeps telling him she thinks he's cute, lol.  He's already being the ladies man.  I'm in trouble, lol.

Making some progress with school.  I met with the principle and guidance teacher and have put a 504 in place.  I meet with the guidance counselor again tomorrow to go over that and make sure everyone is agreeable to the terms.  They also are putting into place a backup for the school health assistant should she has tons of kids in the clinic when Jayden arrives for his check ups so that she can focus on him and get him back to class or his lunch.  I hope things get a little more stream lined so that he feels more comfortable and normal.  This by far has been the hardest part of diabetes and the adjustment for all of us has been trying to say the least.  I know it will get easier but trusting others to take care of your child the way you do it a lot to ask of parents.  I know they will call for any little things but still, bad things can happen fast, especially with a child who's not very symptomatic.  I hope as he gets older it will get a little easier.  Someday he will know and understand all that his parents have done for him to be able to be just like everyone else.

My baby boy is growing up and I can say that I am very proud of him and happy that he has a very happy and healthy life so far and I plan to make sure he continues to live life to the fullest!

Birthday at Monkey Joe's.
This is baby brother Jonah.  He was having a blast jumping everywhere!
Jayden and Brooke : )  What a cute picture.
Jayden and grandaddy!
Birthday boy.
Make a wish!
Monkey Joe came to visit the kids and sing Happy Birthday.
This was one of Jayden's gifts. 
He had a lot of fun flying the plane and it actually fly's pretty well.
Soccer time is almost here

Happy Birthday Jayden!  Mommy and Daddy love you!











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What a week!

Somehow we made it though the first week of school but what a week it was.  I just don't know how parents send their diabetic child off to school to trust them in the care of strangers.  This is WAY harder than I ever thought it was going to be.

Here are the events of the rest of the week.  Wed went ok.  Thurs was the straw that broke the camels back!  I went to help the clinic aid check my son at 10am.  I got there about 9:40am to find the clinic door locked and her nowhere to be found.  Ok, maybe she's in the bathroom right next door, although there is on in the clinic but apparently she can't use that one????  I have no idea.  Nope, 10 min later, she comes down the hallway with some office goodies I guess she was looking for.  What would have happened if my son showed up and I was not there to help with the checks and she was not there either?  Now he would have been there with 2 other kids in the hallway probably playing around and not being supervised.  Then I think, what if he was low and there waiting with two kids.  AHHHHH.  You can make yourself nuts with this.  

Later my mom came to help check him before lunch and bolus him after.  Again, she got there early and she was in the clinic. My son comes down and at this point there are 6 other kids in the room she is attending to and asks my son to have a seat and everyone has to wait their turn.  UM WHAT?  I and the other diabetic momma have made it very clear that these boys are on timed schedules and when they come in they are top priority!  What is they are low when they get there?  So after a little time, my mom asks do you just want me to check him since my child was starving.  She of course says yes please and of course he was low!  So mom takes out a juice box, gives it to him, re-checks about 15 min later and all is good.  He ate some of his lunch there but then was sent off to finish his lunch.  The time was 12:20, 1 min past his lunch time.  Later my son tells us that he was rushed out of the lunch room and had to finish in the classroom.  WHAT????  That cannot happen!  And they keep throwing away his wrappers which I specifically have been trying to keep in his lunchbox because normally he will come back to be bolused and they have to see what he has eaten or not eaten.  This is definitely not working for me!

Later that evening before bed, Jayden looks at us and say he doesn't want to be diabetic anymore.  Why don't you just rip my heart out.  I said honey I wish I could change that but God made you special and unique.  His answer to that?  I don't want to be those either.  He has already picked up on the fact that he's so different from everyone in class and just wants to be normal.  So, Friday I was on a mission and sent a novel of an email to his principle telling him about the weeks events.  In the meantime, his teacher called me and asked if we were ok and that she has picked up on things not working well and after talking she and I were on the same page and she was determined to make this right and make it work better.  What a relief and a God sent she is!  I LOVE his teacher!  She said she was going to go down and talk to the principle and let him know what we discussed and that he and I needed to meet.  Also that I should be allowed to park in the front or in the teacher parking lot since I was reprimanded by the gate keeper on Friday!  
Yes, the gate keeper, who I later found out was the couch.  Great!  My son sees him 4 times a week.  I have walked him to class everyday this week as neither one of use felt comfortable with walking by himself.  As I get out of the car and walk up, I have this older man yelling to me, come Monday morning you need to drop him at the curb.  I said ok, really whatever dude is what I wanted to say, we will work on that and off I went to his classroom.  Then when I was walking back, I stopped to talk to one of the assistants to ask if she might be willing to be a backup for my son.  She said sure as she had a diabetic parent and did testing, etc.  In our conversation, I hear the gait nazi telling another parent who stopped to drop off he was heading up to the gate, in his golf cart, to lock it since he does that promptly at 8:45 when the bell rings.  I was like SERIOUSLY who is this guy!  So I fly down the road past him and his golf cart, really wanting to show him he was number 1 but I was nice, lol.

All those events just got me angry and prompted my novel of an email to the principle.  If I have to park everyday and walk him to class, so be it!  It will be an interesting meeting but I'm optimistic.  I have the support of my husband, family, friends, his nurses at the endocrinology office and a momma angel that was referred to my from his Dr's office who has been here and done this and now is an advocate for other families.  So I'm armed and ready to fight this battle to protect my son and give him the best life he can have!

Now, it's time to get ready for his birthday party at Monkey Joe's in a few hours.  Can't believe he will be 5 on 8/29.........




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I think I have entered a realm of hell.

Today was day 2 of school and it was ok.  Jayden went off to class, no problem, I took Jonah to moms day out, then back to school for check #1.  The clinic aid still seems pretty confused and overwhelmed with everything.  Its amazing the things kids come into the clinic for, lol.  So Jayden's number before AM snack, 58.  I get the "What do I do now" look from her.  Well now we go to the protocal to get the sugar up.  He quickly downs a juice box of 15g and we wait 15 min.  Next check, 130, woohoo!  He sat and ate his sugar free jello and off to PE he went.

Lunch time he was at 90 so that was ok.  Had lunch and came back to be entered and off to enjoy the rest of his day. I went by his dr's office and vented some there too, almost in tears again. They probably tought I was nutty but oh well.  I broke down and had a good cry in the car on the way to work.  I hope this gets easier soon.

I just don't know how all of us parents do this.  It is so hard.  I wish I couldmake it go away.  I really hate diabetes!

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I'm a mother of 2 wonderful boys. My oldest who is 5 is a type 1 diabetic and was diagnosed 01/30/2009 at 2 1/2. My other son is almost 2 and has wheat and peanut allergies. So as you can see, my boys keep me on my toes. Thank goodness for my wonderful husband Jason, my family and friends who are very supportive.
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Jayden turns 5 today! Aug 29, 2011

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