T-Slim - I'm beginning to love you...

Seems crazy, but Justin has been pumping with the t:slim for two months already. I am actually starting to love it. I admit, there are a few features I do miss about the Ping, but I would say the same about the slim if Justin switched back at this point.

Just for giggles, I took some time to re-read my two day and two week review of the t:slim. Lots has changed in two months.

One thing that I am really in awe about is the customer service at Tandem. It is AWESOME!! My local rep, the reps at FFL and even when I called on the phone recently... all awesome! This is defiantly a welcomed change after the last several month trying to deal with Animas' 45min hold times and month long delays in supply orders.

Back to the Tandem CS... You may remember from my first post that Justin's t:clip broke within a few hours of us starting the slim. Well... I called and they actually replaced it. I couldn't believe it.. for real! I thought for sure, they would just apologize, but they apparently stand behind their product and that alone makes me feel good about standing behind them. In addition to that, we have not had any more issues with the t:clips. Maybe that was just a freak thing.

I also mentioned in my first post that I needed to find the quick bolus button... found it!!
Apparently there is this thing... they call it a reference guide and it has a table of contents or something?!?!?! But don't let that throw you off... it has pictures and easy steps to follow. Perfect for a girl who is anti-directions!!

Side note: I could have just asked Justin, but we won't talk about that. I'll just be proud of my accomplishment in figuring it out and ignore the fact that he was not impressed because it was old news to him.

Moving on... One of my biggest complaints about the slim has been the cartridge change. I am pleased to say that I have found a groove and its not taking me AS long... its still not something I'll be able to slam out 5 min before the bus comes, like I did with the Ping, but I've lost the urge to jab something with the fill needle during the change process. Progress, my friends, progress.

Oh, and I gave up on the Apidra. It wasn't worth chancing... all I needed was for it to crystallize in the middle of the night and Justin end up sick. Plus, switching before school starts gave me an opportunity to get use to the Humalog again.

Justin's favorite part... With each site change comes a case change.The mix-n-match case is one of Justin's favorite things about the slim. I totally get why. He says he needs a few more colors, so I'm thinking stocking suffers... IF I can hold him off that long.

As far as concerns go, this was a big one... the reverse correction. It doesn't subtract from the suggested bolus unless your BG is 69 or under. I consider this a safety issue for the younger users. Justin is 13, and understands what needs to be done. He is capable of handling it in a non-hectic summer setting, but I'm curious to see how this goes when school starts next week.
On a positive note... when Tandem submitted the Slim/G4 combo to the FDA recently, they also added this to the updated pump. They are listening to their customers and that makes me happy. Unfortunately, we know how speedy the FDA is... sooo, there's that. You can read about it on Diabetes Mine.

Charging is one of those things that I will resolve to get better about... that's all I've got. Justin is currently riding on about 65% battery(better than my phone, which is at 27%). Luckily, the battery in the slim lasts a really long time between charges and when I do remember to plug it in, it doesn't take long to get to 100%. Its the remembering that gets me, but as long as I can remember at least once a week... we are okay. Added bonus: I plugged Justin in the other day while he was on the computer and another day while we were in the car. So there are plenty of convenient charging options.

This pump is definitely growing on me and Justin loves it. I miss my remote the most, however, especially at might when I'm standing on a shelving unit, digging under the covers, in hunt of the all mighty pancreas... loft beds are not d-mom friendly.

The DOC Rocks - The School... not-so-much

“There is no exercise better for the heart than reaching down and lifting people up.” 
― John Holmes

This really is a great community. Anything from medical supplies to information... it's yours when you need it. I asked one person for a help; and not only did he help me... he recruited others to help me too. Thank you, Scott, for not only getting me the information I needed, but also giving the strength to pick myself back up and go another round.

I haven't been able to sleep much.The upcoming meeting at Justin's school had my mind in constant motion. Oh, did I mention that? Yeah, we had a meeting a few weeks ago. I've been through these meetings before, but this is a new school for Justin. We are no longer in the comfort of an elementary school. I've never volunteered here. I didn't spend years on the board. I have never built a relationship with anyone. I couldn't... I had to go back to work instead.

So this meeting(the one a few weeks ago)- it went "okay". I asked for an additional accommodation because Justin seems to be "missing" stuff. He has a shit load of stuff going on... on top of D, Justin was dx'd with absent seizures, meaning he "looses time". Granted there's medication for this, but let me tell you... I'm not sure which is worse, the medication or the seizures themselves. That's a couple of the challenges Justin faces... he has other medical dx's as well, all of which mess with the mind and impairs brain function. One alone may or may not be easily overcome, but all together... he needs a little help. Simple.as.that! I think we do pretty damn well considering.

But I digress...

Due to seizures, side effects of medication(ie: memory loss, inability to focus, loss of time etc...) I asked for communication, however the teacher wanted to go about it, of all assignments that needed to be completed at home- in order to ensure they are completed and turned in on time. This is an issue... he missing instructions.

I was there well over two hours... the teachers had to leave long before I did(apparently they have classes to teach?? I dunno!) so the excuse that day was that the teachers weren't there to "agree". I thought we were all on the same page before they left, but okay.

So I hear nothing... I give it a week and reach out the guidance counselor. I get a call back and argue my point, once again, before she reluctantly agrees. I was told I would have the updated 504 to look at by the end of that week.

Instead, I get an email with an apology. Another entire week goes by - so that following Monday I call. You see, we were suppose to have the 504 in place before conference night(which was tonight); when I called... conference night was only 3 days away.

Finally, Tuesday afternoon, Justin brings home the new plan. It reads "Justin will write the assignments in his agenda. At the end of class he will give it to the teacher to initial and if the assignments are not there... the teacher will communicate with parent". Great! Give Justin an opportunity and add in a back up plan, right?

I was okay with this and signed the new plan thinking everything was set. Only, it wasn't. Apparently, "some" of the teachers did not agree. "They don't feel it is their responsibility to communicate his assignments with me". WHY DIDN'T WE CONSULT THEM AT SOME POINT IN THE LAST THREE WEEKS??????????? Wasn't that the point of not doing it that day??? Mind you... I didn't get a call about that. I found out at the conference; the conference where we were going to "go over the new plan with the teacher". UN FUCKING BELIEVABLE!!! So essentially, that conference was a waist of my time because I now have to go to ANOTHER meeting, where the district ESE supervisor will be called in to "hash it out".

Believe me, I am not asking for a free ride here, I am not ignorant to the fact that things will get more challenging as Justin gets older. I worry every single day about my choices, but the alternative is to do nothing and let him fail, when he did not choose to have these disabilities. He did not choose to take this medication... I am the one who hands it to him every single day.

HE had no say in the matter.

I have no choice but to help him... it is my job. I will just have faith that it will all work out in the end and I will have to face the future... well, in the future.

Advocating...

ad·vo·cat·e, ad·vo·cat·ing, ad·vo·cates. 

To speak, plead, or argue in favor of.   

     

Several years ago I was in a meeting with the school principal. I made a comment, a slip of the tongue, and said something like "I have been fighting for him for a long time". She responded with "we don't like to use the word "fight". 

Yeah, I'm sure they don't.

There are very few people who know the full background of my sweet Justin. Very few people who know that when he was young we had him tested for Autism, then Aspergers and so on. There are few people who know the countless days I spent waiting in OT and speech therapy offices. I don't retell the story of the teacher the kindergarten teacher that, very loudly, announced in the hallway at drop off she felt Justin was OCD; because he was picking at dried glue. I try not to share the story about the teacher who put him in the closet. Yes, I said the closet; it happened in preschool, when Justin was only 3. 

But isn't that part of advocating? Sharing your story to let others know they are not alone. 

I have been fighting advocating for Justin for more than ten years. I'm a little worn out, but my job can not be done quite yet. I'm starting to wonder if it will ever be done. I have visions of me calling corporate bosses to tell them Justin NEEDS his snack and that he MUST be able to bring his work home to complete. They won't want me to go down there. 

To me... advocating is directly connected to fighting. I wish it felt differently, but I always seems to be fighting with someone. The school, the insurance company, the doctor that wants to treat in a way I don't feel comfortable with. I have however learned, over the years, to not back down and choose my wording wisely because it could mean the difference between getting what your child needs and them getting the bare minimum. As an advocate, I think it's sad words can cost our kids so much. 

I have learned, the older Justin gets, the harder it becomes to advocate for him. With each added diagnosis, it gets harder to word your concerns in such a way that they don't sound like a bunch of excuses. School has to be the hardest... instead of a couple teachers, we now have seven. Keeping up with seven different teachers, in addition to making them understand, kind of sucks (or in proper terms... it's unsatisfactory)? 

My most valuable lesson in all of this has come over time. Time has showed me that it has ALL been worth it. Every bout of anger, every tear, every phone call and email sent has all been worth it. I've witnessed it's worth as I have watched Justin grow. I have witnessed how far he has come in spite of those who give up because he has been blessed by those who won't. I have had the chance to watch a child grow everyday that could have easily been chalked off to a behavior problem, and almost was, when all he really needed was a different approach and someone to care enough about him.


To be honest, I had hoped to hang up my advocacy belt soon, only I know I still have a long road ahead. Not nearly as long as Justin's, but I have to lay the groundwork for him now; and that's a big load to haul. All I can do is keep truckin along and pray with all my being that what I can do will be enough. I don't have any other choice if I want Justin to have a fighting chance. Hmm, there goes that "fighting" word again.

Thank you, from the bottom of my heart, to all of those who didn't give up and have been influential, to both of us, along the way.  

     

I'LL TAKE THE DIABETES...

The constant guilt of making the wrong decision is eating at me. I don't know what to do and I want someone to make the decision for me... just to lift SOME of the guilt. SOME of the burden.

As you know(or maybe you don't), Justin was dx'd with a form of Epilepsy back in April(<-- you can read about it there). Seven months later, we are still trying to sort out the medication(<-- you can read  a little about that here).

In short...the first medication caused stomach pain and vomiting. The second one they wanted him to take I refused. Med number three was working well until we realized that Justin was still having seizures, just not as often. The increase in the meds that were, up to that point, working... proved to have negative effects when increased. Justin started complaining of abdominal pain and his mood... woah! Short tempered and cranky to put it lightly.

Last week we decreased the meds and the above mentioned improved. However, we still have that "little issue" of him still having seizures.

Anthony followed up with Justin's neurologist today and they gave him the new medication that they want Justin to start IN ADDITION TO the decreased dose of the current meds. When I got home this afternoon, I realized that it is the same medication that I refused to give him when the first meds didn't work.

This medication scares me. I don't know what to do. I don't know what is best for my son, who already said something about the 7 pills a day(5 in the morning and two at night) that he was taking when we increased the dose.

He's 10... not 80. 10 year olds should not have to take that much medication in a day and my heart broke when he cried about it.

I can honestly say that as much as I hate what diabetes puts him through... I would take Diabetes over the Epilepsy and all of its horrid medication ANYDAY.

I never thought I would be in a position where I didn't know how to care for him. Where I didn't know what was best.

I just don't know what to do and I am terrified that I will make the wrong choice. I guess because I am not the one that will suffer because of it.

Hug your little one tight. They are all stronger than they should have to be.

Update...

NaBloPoMo... day 20

I just realized that I never updated anyone about Justin's seizures... shame on me.

I went back today and read that post. The one that shared the Epilepsy diagnosis. I cried! 
I cried even more when I read the comments again. 

You guys are so awesome... but you still made me cry!

Anyway... its been about 3 1/2 months since Justin was diagnosed with Absent Seizures. Would you believe that we are JUST NOW getting the medication straightened out? We picked up our first increased prescription today.

We have been given three... he has taken two of them.

Medication #1: Zarontin- Justin was only on Zarontin for about 11(ish) days because he ended up having a severe reaction to it. What started out as "noticeable mood changes and not sleeping well"; turned into severe stomach pain and vomiting.
The day I decided to stop the medication I took him to his pediatrician... I had him checked out head to toe. Had blood work done and made sure there was nothing else to blame this on before I called the neurologist and said that's enough. That morning was the last dose he had. I watched my son double over in pain for a few more days while the medication worked its way out of his system. He didn't even want to play... not even the PlayStation. He also missed 4 days of school.

Medication #2: Lamictal XR - HELL NO!!! When the office called me about the new medication, they said we would need to come pick up a "starter kit". She said she was going to put the directions on it along with some things to look for. Okay!

Anthony drove out there. When I came home from work I started checking out this medication. I was instantly worried that it would take FIVE WEEKS to wean Justin onto it. FIVE! WEAN! FIVE?!
Wean to the point of only take half the dose every other day for the first two weeks.

I called the pharmacist.

I asked her if it takes 5 weeks to wean on... how long before he can get off in the event of another reaction. Yeah! 5 weeks.

The other issue was that it is known to cause a severe rash. As rash that could "cause hospitalization and in some cases death". I was to call at the "first sign" of any rash. There were other concerns... and in the end, my gut said not to do it.

Of course, that was on a Friday. I had to wait until Monday morning, but I called back and told them to give us something else.

Medication #3: Depakote- This is what he "usually" prescribes for this kind of seizure, but one of the side effects is rapid weight gain. The doctor didn't want me to have to deal with Justin gaining a ton of weight because of Diabetes. When I asked "how much"... he said "like 10 pounds in a month".

When it came down to it I said, "I will take my chances with the weight".

We've been on the Depakote for about two months now. We recently had to increase the dose because Justin was still having seizures. So far there has been no bad reaction and the increase seems to be working. Thank God!

As for me... I'm trying to plant that smile. I am okay if I don't talk about it. I am okay if I don't tell you the story about the mall parking lot. I am okay if I don't tell you about taking pictures(flash bulbs) over spring break . I am okay if I don't think about it at all.

Kind of in an "avoidance" stage, I guess. I have pushed it so far to the back of my mind that I forget its there until its time to take the medicine or he has a seizure.

I know it could be worse... but he is MY baby and it hurts when he is faces with these challenges.

Here's to no more surprises; and if there are... please let me coincidentally have another bottle of wine. Then again, I might need something a little stronger if anything else sneaks up on me.

Happy Wednesday

  

A SWEET RESPONSE...

“Life's challenges are not supposed to paralyze you, they're supposed to help you discover who you are". ~Bernice Johnson Reagon

The loaded questions... You know... "How are you doing?" "How is Justin doing?". Those questions.

For the most part, I answer those questions with the automatic, "fine, thank you for asking", generic kind of response. Only certain people really know that it is quite the undertaking to keep it together sometimes.

This past week has kicked my a double s...

The seizures. The seizure medication and its side effects. The wondering how I missed another major medical issue. The highest A1C Justin's had since dx. All of it. Piling up.

Anyways...

At work today I was asked... "How are you? How is Justin".

Maybe I am tired of my generic answer. Maybe I just needed to vent. Maybe I had the urge to test the sincerity of the question. Maybe a higher power knew I needed to hear the heartfelt response that I received. I don't know... maybe it was all of the above.

So, in response to the question, I answered something like this...

"He's okay I guess... I think this medication has been hard on him. There have been some noticeable changes in his mood and he has not been sleeping well. Both are possible side effects of the seizure medication. I am supposed to wait 10 days before I get his blood drawn so that they can check his "chemical balance". It's a hard call.

How are you doing? Did you get your water heater fixed?"


I have to admit that I expected the usual "I am so sorry to hear that". Instead, I got this... (I removed the details about the water heater... she got a new one in case your wondering :)


"Justin- hate to hear!!! I know it's all hard on him and you. Medicine really is trial and error and until they have it all adjusted correctly I know it can be physically and emotionally draining.
 Look up!!


I pray it all comes together quickly. When the circumstances try to over take you stop take a deep breath and reassure your self there is a light. When the pressure and uncertainty seems more than you can bear within your heart cast it on a loving God. I know that may seem trivial and twilight zone-ish do do do do...but there is a God whose ways are greater than ours. He works out every detail of our life according to his plan though through it all we don't always understand and it doesn't come as quickly as we would like at times but he still knows, he still cares, and he still has it under his control if we give it to him. Better to know than not to know. Better to be working on resolve then not.


I know you are troubled as a mother...I can't imagine! But his word says he gives peace that passes all understanding in spite of our circumstances. He is able to put a settling in our heart and a reassurance of him beyond what we can understand in logic. We all have moments of despair but when we recognize we are there he just asks us to cast it on him.


Any thing I can do...let me know!! Just need to vent...call me. May not have an answer but i can be a download for you:)"


Of course I cried. I can hold it together much better if I don't think about it - AT ALL!!


Life's challenges sure have a way of knocking you on your ass, that's for sure.


One day at a time ~ right?

Thank you to everyone who commented on my last post. Your words lifted my spirits more than you can imagine.

NOT JUST A FAST DROP...

“Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength.” ~Author unknown

You may remember a post I wrote last week about finding Justin alone at school, in a daze, walking in circles. If you missed it, you can read it here.

I mentioned that I had seen him "zombie out" before. I had always chalked it up to a low or a fast drop in blood sugar. That explanation made perfect sense to me.

Out of coincidence... Justin had a neurologist appointment two days after that "incident". It stuck with me because of the fact that I found him wondering by himself. Just in conversation... I mentioned it to Dr. G and of course, he had questions.

He decided that from a neurological standpoint that an EEG would be beneficial, but told me not to worry.

Yesterday, was the day we scheduled the EEG. Justin was a champ and did everything he was told. I was a proud mama.

During the test... the tech asked Justin to breath heavily, in and out, continuously until she told him to stop. During this time she said she would talk to him about elephants and he needed to remember the color of the elephant she was telling him about.

I sat there and watched.

A few seconds after the heavy breathing began, the tech started talking about purple elephants. Then, abruptly, about 15 seconds later the heavy breathing stopped and the lost zombie returned.

Silence filled the room for what seemed like forever. I found out it was actually ten seconds.

All of the sudden Justin Asks "how much longer".
But when she asked him "what color was the elephant"... he just said "what elephant".

As soon as the tech stood up and left the room for a minute... I just pleaded to myself. "Please... Please don't".

When we were checking out I asked how long it would be before we heard anything. I was told a couple of days. Justin and I went about the day and, by some miracle, I didn't think about it again.

Until that afternoon when Dr. G's name flashed up on the caller ID. NOT the usual office name... HIS name.

(Insert Reyna's F.F.S)

Turns out... Justin has what they call Absent Seizures.

Here's a typical scenario for a child with Absent Seizures: Frank, a 7-year-old boy, often "blanks out" anywhere from a few seconds to 20 seconds at a time. During a seizure, Frank doesn't seem to hear his teacher call his name, he usually blinks repetitively, and his eyes may roll up a bit. During shorter seizures, he just stares. Then he continues on as if nothing happened. Some days Frank has more than 50 of these spells.

I copied the above scenario from Epilepsy.com. You can click on the link to read more about Absent Seizures.


According to Dr. G... during that twenty minute test Justin had "several" of them. They (his at least) lasted about 10 seconds each.

They require medication- which we will start tomorrow.

I just cried. (I also drank a bottle of wine, but we wont discuss that).



I know that there are worse thing in the world. You don't have to tell me it could be worse. But as a mom... anything your child goes through seems like the end of the world.

I don't understand why he has to deal with any more. He has dealt with ENOUGH!

With any luck... Justin will be lucky enough to grow out of these seizures. Unlike D... we can have hope that he will.