my life is like a theme park... Let me take you on this weeks roller coaster ride...

Well for starters.. Monday was Columbus day, so Josh & Julian didn't have school, nor work. Ashley and Addison came over today, so we can show them how to use the dexcom! This was perfect timing, being that today was the day Julian was due for his new one to be put on, so I decided we'd do them together, in hopes of giving Addi some comfort if she felt scared. The visit went great, and Addi was such a big girl getting her dexcom on for the very first time! Bless her heart, she was so excited to have it, and was so proud to show it to everyone.

Tuesday, Ju had school. At this new school, the teacher doesn't communicate with me like at the old school. Some days I don't hear from her at all.. which is a good and bad thing. Good- because I cant play scenarios in my head, if I'm not being told his BG constantly. Bad, because maybe I should be playing those scenarios. Well on this day, I was in carpool, and hadn't heard from his teacher all day long. As I sat in line,  was telling my mom how I worry less and blah blah, yet on days I don't hear from the teacher, I get anxious waiting for him to walk out the door and be walked to my car bc I can tell from that first glance if he's HIGH or LOW. As we are sitting there talking, Julian is next to walk out, and the moment I lay my eyes on him, I know it... he is VERY LOW. He gets in the car and the lady is helping him buckle, and he begin to cry. His eyes have that funny look, and I hand him his meter. I ask her whats he crying about, and she replies that she doesn't know but if I pull up, she'll run inside to ask mrs. kim(his teacher). As she runs in, Julian is checking his BG, 60mg/dl. UGH.. no wonder. When she comes back out she tells me he was flipping out over a sticker... I show her his meter, and explain that these out of character swings are red flags, and good reason to always check his BG. Granted, his Dex hadn't yet alarmed(it can lag a little) but it read 109 with two down arrows. that too is a red flag! :(
We had lunch with daddy shortly after, and which gave my boo the protein he needed. Then we came home to prep for his first baseball game that night! wooohoo!

  

I can not even begin to explain how proud I was of Julian tonight! and his team! they ROCKED IT! THey are soooo good for their age, and sooo freakin precious!

 

 

Wednesday- Julian headed off to school. I wasn't to concerned as I usually am the day after baseball, because to my surprise he wasn't running low like he typically does.(but hey I wasn't complaining, since he wasn't running high either!) Then that day at school his teacher texted that his dex alarmed at 65- so she gave him cookies. at the 15 min post check, she had him check his BG and it read 345. I was like damn, no way he's 345- its the day after teeball.. so I told her to insure he cleaned his finger before checking, otherwise the cookie crumbs would give a false HIGH. sure enough, as I loaded Jai in the car to go up to the school, I got the call saying he was 220. much better. he was probably a little low( around 90 if I had to guess) prior to eating the cookies. Dexcom is sometimes a little off. But good deal, he got to finish his day at school. That night, he stinkin dexcom came off early! DANG IT! we only get 4 of these a month, and they're suppose to stay on for 7 days. yet, this one lasted 3 friggen days!! ugh! So of course that means a no go for school tomorrow, and he'll return Friday, since Josh is heading to school for Donuts with dad & a field trip with him. His next dex will be put on next Monday.

 

Thursday- Well I fought highs all night last night and since Julian's dex is off today, he is playing hookie. Good thing we let him play hookie, he has since thrown u his breakfast and has Large ketones. WTF! his bg's haven't been out of whack.. im not getting it! SO I start praying to god he's not getting a virus! I start trouble shooting..

*insulin-- is good.

*no bubbles in tubing

--so next is pull the pump site off and change it out. AAA-HAA.. there's the issue. his CANNULA was completely bent. I assume I didn't catch it as soon as I would typically, bc he didn't run high like he normally does when his cannula is bent. I am also assuming he didn't run high, because of all the exercise he has been doing lately. So today we will battle vomiting, and ketones. :(

 

are you seeing the tend. Hope you enjoyed the free admission to our life, and the complimentary roller coaster Blood sugar ride! :)

Dragon. Drag-in-my-feet-tonight.

I am incredible, unexplainably, utterly, exhausted. My entire body feels like it needs to go into hibernation in order to recuperate from this roller coaster week. Unfortunately, that is not realistic, and life goes on. But I think after all the support you all have shown, and the amount of love, and concern you all have expressed for Julian, I OWE it to YOU to stay away to write this blog post. You all deserve to know about his day at his new school! It's no secret I was a nervous wreck this morning, despite how good our unexpected, encounter/chaotic meeting was yesterday. Going into school today, right as we walked in the front doors, the director asked us to go into the office. At this point I handed her Julian's 121 form, as well as his registration form. She then went on to tell me, they had searched for my number yesterday, before realizing they didn't have it! Turned out they were hoping to contact me, to tell me they'd rather Julian start on Thursday, however since we were already there... We would just go about the day. Mrs. Linda(the director) took over Mrs. Kim(Julian's new teacher) 's classroom, while we took a walk and went into a separate room to talk, per her request. * ...I was relieved she wanted to have another talk today.* The talk was simply to get the gist of things out on the table, and in writing( I already had everything written which saved us a lot of time) and were able to discuss scenarios and such. After I went to tell Julian bye, and Jai and I went about our day. I wasn't so sure about heading home.. I wanted to stay real close incase I was needed. In which case, Jai and I drove down two blocks to Front Beach, to visit one of our favorite parks! :) we played for a long while, until Jai just plan pooped out on me. This is usually his nap time, and poor baby was completely off schedule. I put him back in the car and we went for a drive around. This is when I got a strange number calling my phone...
Ring a ding ding, .. usually I don't answer calls that aren't logged into my contact book, yet I had a gut feeling it was the ADA. Sure thing! I've come to learn, that the only reason Julian's school cant be held for the discrimination they exerted towards my type 1 diabetic 5 year old, is ONLY because they carry a church/religious name. Evidently, Churches don't have to exactly follow the law, and only have to follow up with the health department code, in order to be able to open to the public. A church can tell a T1D they are not welcome to Sunday service. The preacher can stand on the alter and band a T1(or anyone in that matter) from ever stepping foot in the sanctuary again, and yet never break the LAW. Is it discrimination?? ABSOLUTELY. Why don't many people know this? Well, they don't know it because MOST churches are ran by CHRISTIANS. Non-judgmental, loving, Christians, that want to do the work of GOD. They are sinners, and recognize they are not perfect, so they accept murders, prostitutes..etc. it doesn't matter! They take them in to show them the good of our amazing GOD. To show them someone LOVES THEM. TO give them hope, FAITH, and the love of Jesus! That is what makes this story so compelling. As a Baptist, I know never in my time at any church, regardless to the religion, ever heard of a church turning someone away, let alone kicking them out to the curb.  Infact many times I've served the homeless a meal, at our church. We gave them shelter, and used that time to give the love of the lord. Give them the word of Jesus. And exercised being humble Christians. These homeless people many times would appear in our serves weeks following "Housing the homeless". They began a relationship with God, and housing the homeless, was a springboard to the foundation of their relationship with God. Had we shut our doors in their face? Discriminated against them, because of where they are in life... what they had done in life to end up homeless? etc. Then we would have NOT done the work of God. We would have gave them the impression, why bother with God, if those are suppose to be Gods people?
I am babbling, but trying to make my point very clear. Churches have the option to take in who they want, care for who they want, love who they want, and have the option to act as they want. And as Gods children, I believe our God would want us to act accordingly in his house. The landmark/establishment that represents him, should be the best example of God's work in our lives, the lives of sinners, yet Christians. I believe this preschool has represented that church very poorly. I believe with all my heart, that pastor knows nothing about any of this, and would be very disappointed that his doors are open to all kinds, coming from ALL walks of life. Yet, a innocent little 5 year old boy, who has a condition that requires a little extra attention. A condition that has taken over a huge part of his every day life, and has caused him to have to understand things a child shouldn't have to understand. Feel things a child should never have to feel. And be brave. Strong. all awhile. A child that meant no harm to anyone, Just wanted to be in school with his friends. This innocent child had those same church doors closed in his face forever. I believe our father in heaven too, is disappointed in those board members for the way they treated us, and how they represented him, and they will have to answer to that some day. & THAT gives me peace. No there is not a single thing I can do besides put pressure on them, and hope they change their ways within their selves.

After a long talk with this very nice Attorney, I got a text from Julian's teacher stating everyone had a cupcake, besides him. Again I feel upset, at the thought of my child watching others eat a cupcake. I made sure to tell her in the future he is to also have that, and I will gladly come give insulin. But other than that Julian did great! At carpool, I was car #5 in line, and I was anxiously waiting to see my sweet baby boy cut the corner to walk to my car. Finally he did, being walked with Mrs. Linda. Linda was holding a clip board,  and when she got to the car she handed me a waiver. I thought I would faint, but I was very pleased to see it was my instructions typed on a medical wavier saying these are the directions I gave them, and they have my permission to follow all and administer both INSULIN and GLUCAGON! Come to find out, not only does the direct have T1's in her family, and His teachers niece was diagnosed a year ago at age 2, but ALSO a member of the church board that works with the preschool is a retired diabetes nurse. HUGE relief! I know they will do great, but as of now they are not giving him insulin, I am still coming up to administer it, but its still good to know that they are willing and are just waiting for my call.
Julian was super excited about playing with playdoh and making a new friend named, Luke!
:) that's all folks!Thank you all so very much for the support!!!!

discrimination

I feel the need to note what has happened. I want all well informed of how this has unfolded.

Last Thursday, Julian's blood sugars were running a little higher, it was to be expected since I(mom) overslept and woke up 10 minutes before the time we usually are walking out of the door. He eat dry cereal for breakfast, and was treated in the school parking lot. Normally by the time we are in the school parking lot, Julian has had IOB(insulin on board) for an entire hour. On this day, Julian was at school for nearly a hour when his teacher recommended me to come up and check him out/administer insulin. When I got there they were out on the play ground playing, and the teachers were sitting alone on the bench. I sat with them to let Julian enjoy a smidgen more of his day, before making him come home. We're talking and I mentioned that I wish they could administer at minimal one unit of insulin on the rare occasion he may need it during school hours. They went on to explain to me that they could administer medication(which I knew) yet, my gears are turning and I remember both years they informed me that they administer epi pens, and to this point they have agreed to use Julian's glucagon... soooo.. I was curious as to what exactly did the law state, and how was accepted and could fall through the cracks and what couldn't. Debbie, the director told me she'd be glad to talk to the Health department to find out exactly why they do things that way and would get me answers to cure my curiosity.
the following day, Friday, Julian ran LOW at school. He had tee ball the night before and he trends lower after so much running and playing. His teacher was great about keeping me informed as to how he was doing. At one point he was at 51 and I hurried over to insure he would be okay.. when there his teacher handed me a paper from the director Debbie. Julian was not happy about leaving and was crying, with his face buried in my belly. His brother was crying as well, because I had interrupted his nap to run to the school for Julian! So the letter was tossed in the school bag and I was going to address it when we were home. Half way home the kids calmed down, and I pulled off at a gas station to read it, because I knew it had to be about my questions the day before. This is where I was told the school would not give ANY medication, besides the EPI pen. The reasons the EPI pen was an exception as because it was for life saving device, that is pre-measured, and because 911 would be called if ever it was administered. Well this made me question, should Julian's Glucagon been included in this form? They did infact, two years in a row, agree to administering it. It has been sent to school with Julian daily. So again I am very curious, and call the director. I ask her about this, and was taken back that she is now claiming she never was informed of his glucagon, and she indeed never said she'd do such a thing for Julian. WEll. that conversation for sake of time, will be summed up as heated, and no very  productive. I called Julian's last year teacher that was also present when the director was taught how to administer Glucagon, amazingly she can recall. Amazingly, his this year teacher can recall, and after a discussion on Saturday, where she reassured me that there must have been a misunderstanding, and that they could administer Glucagon. She also informed me that Debbie(the director) put a note on julians hook, calling for a meeting Tuesday after school. But to def. send Julian to school Monday.
Josh brought Julian to school Monday, and Jai & myself went to pick him up later that day. As far as I know that day went as normal as any day prior. At pick up, Julian's teacher, Susan, met me in the hall and told me that I should "come prepared" for the meeting yesterday. Those words haunted me until we got home, when I then texted her to find out what exactly she meant by that. I asked if I should look for Julian a new school? or what. She replied that she believed everything would be painless, and just to bring printed out papers to help my case.
Last night I went to bed with chest pains- the anxiety was overwhelming, and the thought of it all was sickening.
Today Josh again, brought Julian to school... and also met Jai and I at pick up. Joshua played with boy boys in the courtyard, while I went in to meet the teacher, director, and over ministry leader. I still had chest pains all day. Sitting down, I was given two options. TO sign their wavier, stating they had gone back on their word, and would not indeed give Julian any medication, even in the event of an emergency need(hypoglycemic episode). OR pull him out and get my money refunded. Neither of these was what I wanted. I tried to explain, and question why could they give an EPI pen, yet not a Glucagon Pen? IF their rules in their own handbook said no medicine, HOW and WHY is EPI pen an exception? WELL because its an EMERGENCY. BE its pre measured. Because they call 911 after its administered. I tried to tell them Glucagon was the same exact way, but each and every time I even said the word" EPI pen". i was asked, " does you child need an epi pen? if not then we do not have to discuss it with you." (keep in mind the Friday prior today, i was given a hand written letter stating they would indeed administer epi pen) Hold my tounge became to much to bare, and I made sure to express my disappointment in the people who are supposedly," Doing gods work". I came out roaring like a tiger, with a dagger in her heart. Josh knew by my face things had gone terribly wrong, and by the time I sat in my car i'd lost it. I couldn't even begin to explain to him the conversation, or lack of conversation. I told him no one would believe me, so go in to see their attitude for himself.... So he did, while I stayed in the car, RECALLING ADA.
Before this school year started I PRAYED and PRAYED for this school to some how some way have an opening. After much prayer and not hearing anything I nearly gave up. I was on their waiting list alone with another schools but my heart really was aimed to this one. One day out of the blue the director called me, telling me she was in prayer that morning when God came to her and told her to open a 3rd preK4 class. I was the first person she thought to call, despite the fact we were 5th on their list. IT WAS AN ANSWERED PRAYER. so why now is all this happening? WHY did god make this opportunity... just for it to be torn away?
As I sat there on the phone, sobbing in heartache for my child, I watch all these other parents playing in the courtyard, loading their children in their seats, kids showing off their work that they are oh so proud of. And I feel envy. I feel anger. I want to interrupt them and just make my statement clear. YOU PARENTS ARE SO LUCKY TO NOT HAVE THESE WORRIES. THESE PROBLEMS. THESE FEARS. YOU TAKE YOUR CHILDS HEALTH FOR GRANITE! These parents have to fear their child getting rejection for bullies. Other bratty kids at school. NOT BY THE ENTIRE SCHOOL BOARD. For a chronic disease that he did not ask for.  ITs mind boggling that im in this situation. I can hardly catch my breath with these horrid chest pains, when I feel even more heartache. I turn to see Josh walking out of the building, standing tall in his uniform, with a box. A box of all my sons artwork from this year. His extra pair of clothes that was kept at school. and any and everything with his name on it. Like he'd be fired from a job, and had packed up his desk. Yet, it was my 5 year old who was kicked to the curb. As if my child's life isn't hard enough being poked, stuck, shot up with insulin, contacting staph from his sites, wearing 2 devices constantly, the awful feelings of lows and highs all around the clock daily, but now I have to figure out a way to make this right for him, despite all my efforts so far, I feel I failed him in a way. ADA has a lawyer working on our case, and I can not wait for him to call my phone. I can not wait to know our legal rights, because no matter what it takes, I will make this right. If there isn't a law to protect my son, or others like him, I will find out what needs to be done to put one in place. IF there is a law protecting him, the school with be sued. THIS will not happen to my child again. This WILL not happen to ANY special needs child again. THIS IS WRONG.
WITH a strong hug, in the arms of my uniformed hero, I pull it together, because we are a team. and WE will get through this. I began to drive off when I pulled over a block in my route. I had a very strong feeling to go visit the other preschool, the one I was on the waiting list for( my 2nd pick). Their school day had just ended as well. I strolled up with two cranky, hungry children, and makeup running down my face, as the tears were still flowing. Standing at their glass door looking nothing shy of a homeless girl, the director opens her doors to us. I try my best to not let my voice break as I hold back tears to explain it all. The director remembers me from my call this past summer. She immediately hugs me, and tells me Julian is accepted with out me saying a single word more. she then hugged Julian and told him she loved him.
Their were two teachers who had openings in their classes, and we went to meet them. when LINDA, the new director walked into the room with the teachers her first question was, " Does either of you know anything about diabetes?" Kim, ( one teacher replied) "well I do, my 3 year old niece is a type 1 diabetic." I again lost my composure. Was this not the work of GOD? She began to cry as I cried... I tried to explain as much as I could and tried to express my gratitude, but im sure no words can begin to explain.
The director assigned Julian to her classroom. Julian loved it there. The director also told me we wont have to pay this months tuition, its on her. & Julian can start tomorrow, and we can just pay her the other money when we get the refund from the previous school. I am still a nervous wreck about starting new at another school. Nervous this teacher wont keep in contact like the old one did, etc. But Im praying really hard about it, and doing my best to keep positive.

Julian knows nothing about why he isn't at his old school. He was told their was a leak in the roof, and the toilets are broken, so NONE of the kids are going back to that school this year. :( This new school is not a fix. It is a band aid, a blessing.  The fix will be preventing this from ever happening again, which leaves me where I am...
Not to patiently waiting with my phone glued to my side. waiting on the ADA to return my call

Messages

I've fallen upon year two, of the same seasonal debate.. Preschool or No preschool. It all began to take it's toll on me shortly after Jai's birthday. Julian's little friend that was due back to  Puerto Rico,  ended up staying to attend school here in the states. This didn't make my decision any easier, as Julian already ask daily to go to school, doesn't matter if it's summer, or fall.. a week day or weekend. It was a little late to start this search, and inquire but I thought i'd give it a go anyhow.
Our starting point was his school from last year, that didn't quite work out. I called and called and called and had not got a response in over a week. Then I decided I'd text Julian's teacher from the year before... She texted back right way and told me she would do her best to get in touch with the director and let me know if there was any openings. Later that night, we made a run to walmart as a family... while standing in line, I heard a voice behind me. A very familiar voice, so I jolted around, to see who else? but Mrs. Tiffany(julians last year teacher) I had not seen her since Julian's cut short, month of preschool the previous year. What a delight to see her and be able to talk to her in person, and have Julian see her! This tipped the iceberg and had Julian more excited for "school". He hugged and loved on her and told her how he missed her, and about his friend Brian who was attending school. Finally the director got back to me, with news that was not in my favor. I was happily added as number 5 on a waiting list! :( Things weren't looking to bright for Julian, so I began to investigate other preschools. We loaded up to go visit some schools, after I priced around and narrowed the search to a handful. Our first stop was looking promising to Julian, but not so much myself. Something rubbed me wrong, and after Julian ran to their bathroom after being shortly introduced, I knew it was time to go, and felt maybe this wasn't in our best interest. Julian was throwing up, due to ketones.* we just started pumping the day before.. * I began to pintrest, ask around, and dig deeper into homeschooling Julian, as in the state of Mississippi, children aren't required to attend public school until 1st grade.(insane.. I know.. I thought so too) But this seemed to be our best option. All the other schools either had weird snack rules, were out of our price range, or was in huge classes*montessori teaching*. & I was fearful of my T1 being lost in the crowd.
two weeks into our daily 'schooling' and I found myself completely flustered, and at the point of wanting to break crayons(haha). We both HATED the 'schooling' times of the day. In-between visiting that school, & beginning my homeschooling trial- it was another walmart run when I ran into a familiar face in the diaper/wipe isle. I could not put my finger on where I knew this lady from, but I knew her some somewhere, and I wasn't about to interrupt her yanking around and yelling at the kids in the buggy to ask her. I went about my business avoiding her, when it dawned on me.. SHE WAS THE HEAD TEACHER AND DIRECTOR of the school we visited. Wow, I felt so relieved I didn't put Julian there, judging by how she was acting towards what I assume were her grandchildren. If that school wasn't already checked off my list, it now was.. so back to homeschooling, if you want to call it that. Despite how much I tried to make it fun, interesting.... Julian would still rebel. He didn't want ME teaching him, he wants to go to school. His little crummy fingernails, nails dirty from outside play, and beading sweat, he sat at the end of our driveway . I asked him what was wrong( I was feeling ample amount of mommy guilt) he told me he was waiting for the buss to come and get him. He didn't want to learn from home, he wanted to go to school with Brian and Mrs.Tiffany. I cried. I want to give my sugarbaby, a normal life. I wanted to make this work. This is when the message came to me. " Wait." " stay still" " be patient" . I stressed, prayed. cried. I knew Brians first day of school was approaching and the would unleash a whole new level of sadness in Julian's heart.
Friday before the start of school for Brian(8/12) I missed a call from the contact in my phone 'juschool'. I brought the phone in the living room with Josh to listen to the voicemail. Before pressing play, I was covered in Goosebumps and told him, this is the answer to my prayers. Sure enough.. the voicemail said..
" Hi Jonnilin. This is Mrs.Trenchard! God came to me this morning during prayer. We are combining our 3 year olds to one classroom, to have a third 4yrold room. This is the first time we have ever done such a thing, and despite you being 5th on the waiting list, it was you I had to call first to tell. If you have already found a school for Julian, we are happy for him. But if not, we'd be most glad to have him back with us. Our tuition did go up, but I will tell you more about that when you call me back. Looking forward to hearing from you."
Again. I cried. I was obedient to God, I waited, and sure enough it worked out. He made it happen, out of no where. I've never been more confident, I KNOW Julian belongs at this school. It was God's work that even made it possible this school year. So why am I so paralyzed in fear? Well, his tuition went up more then our budget allows. I know God knew this too, when he was working on this, so I should just trust him and go forward. But being the insane planner, budget following Nazi I am, I feel as if I am setting us up if I enroll him not knowing how I will afford it monthly. more hours of contemplation, and trying to plan and getting nowhere. I heard another message clearly from God. again "be still, and know I am God" " Trust me".
So despite my feelings being uneasy about the whole thing, Julian is starting school! His teacher will be Mrs. Susan, and we will be meeting with her soon during our at home visit.

This is God's plan. He has plans for the best of our interest. Be brave like Peter, and get out of the boat Jonnilin, trust in GOD! & the clear messages he has given you!

shedding some light, for you all.

We have made the decision to go back to pumping, to better help with managing his diabetes. He use to get staph with his pump sites, so we made a change from medal insets- over to plastic. We are very hopeful this will make all the difference! I tried to video a little to give you all an idea of what site changes look like. We do these changes every 3 days... and also change his DEXcom every 7 days.

 

 

Get supply all out & ready...

 

Filling with new insulin!

here is our new inset.

inset is in...

load new insulin into pump...and prime..

connect pump to inset.