T1D offcial...rants, raves, and nonsense

So, now that I have covered the diagnosis...where are we now? We are truckin'. One foot in front of the other (well, besides Kaycie, who broke her foot jumping off the back deck last week...she's not truckin'...she is hobblin'...but she is testing the strength of her hot pink cast as she doesn't miss a beat in chasing the boys through the house). 

To start...I have learned a lot, my whole family has...about the truths and misconceptions of Type 1 Diabetes (T1D), so I will lay that part out there first. First, there is nothing we or he did to create this disease in him...it wasn't too much sugar, it wasn't a lack of anything. Type 1 and Type 2 diabetes are far from comprable. Type 1 diabetes is an autoimmune disease. Autoimmune disease is often genetic. Autoimmune disease doesn't always present in the same way from person to person. Type 1 diabetes, also known as Juvinile Diabetes, is most often discovered is kids (usually older than Eli), but it can happen on adults as well. One family member may have one autoimmune disease and the next a different one. Matt has Graves Disease (thyroid, and while I had my thyroid removed as well, it was not due to an autoimmune disease). Auto immune dieseases, while typically genetic, do not always present themselves in every person that carries the gene...They need a trigger...basically a perfect storm. In Eli's case, he had a "just a virus" virus 3 weeks before diagnosis. He had a 105 fever that subsided in a day or 2. I never even took him to the doctor. The doctors believe that whatever that was, was his trigger. It triggered his immune system to fight and kill the insulin producing beta cells in his pancreas. 

The autoimmune aspect is what has always been I the back of my head. Praise God for a doctor who informed me when LJ was in the nicu, that autoimmune diseases often find a back door into the body. If we had waited any longer...even days, his body would have been in shock, and he would have been very ill.

Now, those beta cells don't die off completely immediately. Once on insulin, they may decide to spit out its remaining insulin stores for years. It is funny enough called the honeymoon period. I may dose one meal today and be good. Tomorrow I may dose the exact same meal, and his numbers go bonkers. We don't know what his body will decide to spit out at any given time. Therefore, we go from massive highs to super lows, depending on the day. It means that right now, Eli is getting finger pricks 10-12 times a day, every 2ish hours at night because he tends to fluctuate, and he is getting at minimum injections 6 times a day and up to 8, depending on his levels. 

I count every carb that goes into his body...every gram of food has to be accounted for. Meal times start well before it's time to eat with weighing food, adding carbs, looking at labels, and checking premeal blood sugar. We finish up by deciding what he has actually eaten and an injection. Many days it becomes a "swag" or scientific wind ass guess.

Eli can eat whatever he wants. He does not have to be on a low carb diet. Kids need carbs to grow. He simply needs help processing them. Some carbs make his body happier than others. For example pizza...we have sworn off pizza for the time being. However, a 30 carb banana is good. He doesn't have to pass up dessert at a birthday party. He just has to have insulin to process the foods that you and I process naturally.

Eli is doing his own finger pricks already. He needs help getting the blood to the meter after the finger prick, but every day we are learning. He gets up in the morning and says, "Mommy, check me!" Yesterday he woke from a nap telling me he needed some chocolate milk. It was odd for him because he only ever gets it when he is low. I asked how he felt, and he told me, "yucky." Sure enough, I checked him and he was at 68, which is pretty low for him. He is figuring this out!

We are getting some paperwork done to get a Diabetes Alert Dog when the time is right (we don't want 4 dogs, but we have 2 that are old and struggling a bit, and the waiting list averages 4 years, unless of course, we can shell out about 20k now). That will happen in time. 

We are part of a study that tests family members for auto antibodies that can predict type 1 in family members. We have all had our bloodwork done and patiently waiting on results. 

My biggest issue is the lack of understanding, the stigma, the comes with the diagnosis...please...don't send me diet plans that will "cure" this monster. Don't insinuate that we did something wrong or that we could have prevented this. (Yes, I have gotten multipl
e of those types of messages, most from who shoiud know better). There is a lot of headway being made in type 1 diabetes research, and my faithful prayer is that one day Eli's burden will be lessened. Eating fewer cookies isn't the solution.

So, to answer one more recouring question...what happens if he gets too high or too low...well, too low and they can pass out, have seizures, if no one is there to give an emergency medication...coma, and eventually death. If too high, they can develop Diabetic Keto Acidosis (DKA). This is what many newly diagnosed children present with...illness, vomiting, ketones, and again, if not treated, death. Too far in either direction is not good. These things can happen quickly, amd so far Eli doesn't show severe symptoms when he is ha ing them. Our goal is to maintain the happy medium. 

2 weeks later and finally getting back to this....

Eli is doing well, and mama is getting used to the night time wake ups, sort of. Eli has his first appointment with the actual doctor today, and his long term numbers were given a head nod, we were once again told that "we are a good pancreas", and we were approved for a continuous glucose monitor, which is a little pod that will be attached to his skin 24/7, that reads his glucose numbers every 5 minutes and sends it to our phones, even if we are not with him. He may be one of the few 2 year olds you see with his own cell phone. It will help track trends, if he is rapidly rising or falling, and will alert us if he isn't in a good range. This will allow us a little more freedom from the pokes, it will allow us to leave him in Sunday school for an hour while still being able to constantly be monitoring his numbers.

That said, I believe Matt saw the mama bear fire coming out of my ears today at our appointment also. My pants caught on fire , and I couldn't stay in my seat. This mama doesn't bow down to a doctor just because they have an "MD" after their name. Sorry docs out there...I am probably your worst nightmare.

We decided from the get go, given that we are a dog family, that we would one day get a DAD, or a diabetes alert dog. You read story after story of these dogs being such a huge help and blessing to alerting when their owner is high or low, even before the technology does. I have inquired to a few places, and typically the cost ranges from 20-25k for a trained dog. It is a blessing to have an organization locally that trains dogs and gives them to clients, no cost. I used to have them come speak to my students when I was a teacher, never thinking I would ever need one of my own. 

Anyway, most of these organizations don't require doctor approval. This one organization does since they are a 503c (? Or 509 or 8675301?), and they want to make sure all their dogs will go to loving, needed homes. Today, I brought in the paper that needs the doctor signature, my last step in the process...I have done the legwork to get everything else done already. The doctor REFUSED TO SIGN THE PAPER! 

When I nicely asked her why, she said, "With all the technology out there now, it won't make MY job any easier for YOU to have a dog." Yes, she did. As if HER job was the biggest concern.

In my head, I asked her if she had ever been awake all night waiting to see if her child would go to high or too low. If she had ever been terrified that her child would go to bed at night and simply just not wake up in the morning. If she had to carry an entire backpack of supplies with her every time she walked out of her house...needles, syringes, insulin, glucogon, alcohol wipes, a notebook to do the math, worksheets to track the numbers. The reality of it is...no. Her answer was no, without even asking.

So, what I did say instead...I referred back to Kaycie as I went from sitting to standing. She had no idea mama bear was coming. I told her, "So my 3 year old was diagnosed with severe hearing loss amongst other things as an infant. I am no stranger to independent research. When she was diagnosed every doctor we spoke to had opinions...teach her sign language, absolutely don't introduce sign language, do hearing aids, don't do hearing aids and let her figure it out, get early intervention involved, don't get them involved, seek out private therapy, don't seek out private therapy. Send her to a publoc preschool, dont do that. At the end of the day, we did ALL of these things for her. We put as many tools in her toolbox that we could find. We found the best of the best for her, we followed the process, and guess what...she went from a significantly struggling infant to an almost 4 year old that has well surpassed her peers. Some things we discovered we were ok without. Some of those tools that doctors said she didn't need...she thrives on those. So I don't expect or need your opinion on whether a service dog would be beneficial to my son. We plan on putting all of the tools we can in his toolbox to help him survive, and we don't need your signature." Boom. Her response was, "Yeah, good points, but I won't sign." No need for you lady. It won't help us, but maybe she will think about it again when the next person asks. In the meantime, we will be getting a monitor in the next few weeks, I have a friend who will teach me the ropes, and we are calling a new doctor. I usually love Children's Healthcare of Atlanta doctors, but I also don't mess with ones who only do things for their own ease and comfort. You don't care about my child. You care about filtering me in and out as fast as you can and sending me some obsurd bills. No worries folks...I'm on it.

I'm sort of looking forward to walking into that hospital one day with our service dog, and waiting for them to tell us we can't be their patient anymore...no worries folks...I always have my plan in place. 

In the meantime, Eli doesn't leave my side, we are so blessed that he has taken this all in stride, and I apologize if I seem bitter. If you look back a few many blogs to when Kaycie was a baby, I believe I got lit with the same sort of fire. Don't tell me no. 

At the end of the day...we are fighting. Eli is no worse for wear, LJ and Kaycie are adjusting amazingly well...and we will keep going with joy and maybe a little sarcasm mixed in!

He is rockin' his new shirt!

An Unexpected Beginning...again.

It's been awhile...almost 10 months. I had decided to stop this blogging things and just live life. However, our journey has been a roller coaster, I have gotten alot of questions, and I have always felt like getting it all out there is cathartic to me if no one else....so here we go! There may be multiple installments, as I write a lot :)

On May 24th (3 weeks and 2 days ago), I took Eli to the doctor. Over the previous few weeks, I had noticed his increasing thirst, and then I kept thinking he was getting skinny...not growth spurt skinny, just skinny. And he eats non-stop. The day before I had called our pediatrician and inquired about if I should be concerned...I was pretty much told that it is a phase, don't stress it. After I pushed a little, they agreed for us to come in the next day for a checkup. 

I will back up here and add...Matt has an autoimmune disease (Graves Disease), and I have always had in the back of my head the warning that one of LJ's NICU doctors gave me. He said that autoimmune diseases are often hereditary, but that they don't always present in the same way. Type 1 is also autoimmune. 

On the way to the appointment, I got behind an accident and was worried about being late. No joke, I almost called the office right then to cancel...I mean, we had a full day ahead of us after the appointment, and in the back of my head I kept asking myself if this was a waste of time. Needless to say, I made it to the appointment, three little turkeys in tow, and they got us right back. They checked his weight...down 4 lbs since his last check 6 weeks prior (for a 28 lb kid, that is significant). They didn't waste any time in checking Eli's blood sugar...I mean, this was supposed to be a quick in and out "peace of mind" visit. Instead the nurse did the first prick, and the meter just said "hi". Me, I figured it was an error. She tested again. "Hi". And one more time just to make sure. "Hi". I finally said, "So what does that mean?" I have no experience with glucose meters, so to me, it meant absolutely nothing. The nurse responded by saying, "Well, the doctor will be right in," as she scuttled out the door. A few minutes later doc came in, tested again with the same result, and that's when he looked at me very seriously, and said, "I don't mean to concern you, but..." At that point everything became a fog. He started telling me about how the "Hi" means that his blood sugar is beyond what the meter measures. It measures up to 600 and anything over 180 is too high. He was telling me to get to the Children's Hospital, that he was calling to expidite us, and not to go home, but to make some phone calls on the way to arrange for someone to pick up the other kids and for Matt to meet me there. The last thing I remember him saying with pitty and sadness in his eyes is, "I hope I am wrong..."

We got to CHOA, where my mom met me to take LJ and Kaycie, and we were whisked back to a room immediately and blood was being drawn, IV's were being started, and I was still in a fog. At this point I knew. I knew. Dammit, I knew. They kept asking if he had been sick recently. That's when I remembered he had a virus the first week of May (I only remember because I missed my last day of Bible Study because he had spiked a 105 fever that left as quickly as it came). They kept reporting blood test numbers, and all I remember sayin is "Does this mean my son has diabetes?!"  They informed me that may have been the trigger that set off this whole disaster. And here I was just thinking I was being a cautious overbearing mother. Even as we sat in the ER, Eli was becoming more agitated, it was like a fast downhill slide. By the time Matt walked in from work, he was being admitted. We were being told that we were lucky we took him in so soon, before he got deathly ill. We were being told our lives will be changed but we can "manage" it. We were handed an entire backpack of information, and on top of that all of a sudden learning how to do finger pricks, draw needles, give injections, check ketones, administer emergency glucogon, count carbs, learning carb ratios, correction formulas, what numbers to call when things get to high or low, what number to call to report our numbers each day, what foods help, what foods can cause issues, you can feed him like normal, but if you feed him like normal it won't always work in your favor, pumps, continuous glucose monitors...oh, and it will be like having a newborn all over again, among other things.

At the end of night one, my head was spinning. Eli was miserable at this point, and we had no idea how to care for this kid that we have raised for 2.5 years. I still feel raw. 

Of, course we are home now, and figuring out things more each day, but he and I are exhausted. I keep thinking...they said it was like a newborn, sure. We wake every 2 hours and battle the highs with insulin and the lows with 2 a.m. juice and candy parties, which subsequently give him a sugar rush. Which, half the time end up in a high number that we have to adjust yet again. Where newborn days had an eventual end, it is sinking in that we will be doing this for the rest of his life, or mine. The. Rest. Of. Our. Lives. We will be fighting this stupid disease. 

In my head, I had to keep reminding myself that God is faithful, but I have battled anger, I won't lie. I have questioned...God! We have been given 67 Nicu days between the 2 boys, hearing loss battles and all of the repercussions of that, and now this?! One thing gets better and a new hurdle comes in to play. I try to put on a tough exterior and play the game, but I am tired now! I keep having to remind myself that we are tough...we are in this together, and I know so many families have bigger battles to fight than we do. I will keep praying, I will keep asking God for help, and we will keep on truckin'.

In the ER right after diagnosis

Later the first night after he got some fluids in him.

They finally let him eat! He has been chowing down for 3 weeks!