Breathing Again

Next week Tommy will go for his growth stim test and I've been nervous about the test since we found out he needs it. In the last week I have begun planning activities to lead up to next week - happy things for us to talk about when he's in the hospital. I've pre-bought a few toys, downloaded some new apps on the ipad and tomorrow we are getting some books at the library. Tomorrow and Monday he'll hang out with his friend London. I'm trying to think about everything. I have already planned a trip to toys r us on Tuesday after I tell him he has to go to the hospital for the test. 

The test itself is stressful because he's never had these drugs, its an IV - etc. His diabetes complicates the test as well. I know he'll need to have his pump site changed the day before so we know it's working perfectly, there will be checks during the test to makes sure his blood sugar doesn't drop too low and he can't eat anything before the test which means if there is a middle of the night low the test is cancelled. 

So.... I have all of these thoughts running through my head and then Allison pees through a pull-up for the second time in a week. She has been asking for water more often, not eating too much and of course my mind goes right to diabetes. Last Valentines Day we received a letter telling us she has none of the auto antibodies to predict diabetes but that letter gave me no comfort this week. Tonight I figured for piece of mind I would test her blood sugar before bed. She was happy to get her blood sugar checked after Tommy and it killed me that she did it with a big smile on her face. Who would think one number could mean so much. As it turns out my worries were not needed - her blood sugar was 110 - not bad for 2 hours after a meal.  I started to breath again but only for a moment when Tommy said  when seeing the number flashing on the meter "it won't get sent to her pump (the blood sugar number) because she doesn't have diabetes - I do - sorry Allison". He was sorry she didn't have it and I was thinking how happy I was - but my happiness turned to guilt because he still does. 

Translation - today was a crappy day with a good turn out that made me feel crappy. Diabetes won this battle but I'll be back on my game tomorrow. Just like Tommy and Tom get good and bad days with their numbers I get good and bad days on how I deal with them. I'm happy the good days out number the bad by a LOT for all of us. Tomorrow will be better :)

Choices

Before our children are born we make decisions for them, what will their name be, where will they be born, what's the best baby items for them. The 9 month preparation for this little baby can be overwhelming. Some of these choices that we needed to make for Tommy were simple - his dad is Thomas, his dad's dad was Thomas, etc - name picked! Many choices fell into place quickly. It wasn't till after his birth did the hard choices came into play. Within a month of him being born we needed to decide that moving to prescription formula, no matter the cost, would be necessary. Even harder was the decision to start him on medication for his reflux - he was so tiny and only a month old on medication- it was a hard choice but we knew he needed to grow and this medication would help keep his "fancy" formula down. 

Not surprisingly more decisions would come in the future as we flash forward to today. After he was diagnosed one of the hardest choices was switching to an insulin pump. Although we wouldn't be wearing it we needed to decide what was best for him and we are so happy that he agreed and looking back we wish we had made that choice earlier. 

Recently we have been faced with a new choice that I have thought about, stressed about, and prayed over since making the decision. In the past year we have learned that Tommy hasn't grown. He has always been small for his age, a concern of his endocrinologist since she met him but we've always taken a wait and see attitude because he was still growing. When he stopped growing blood work was done to check his growth hormone - it was very low. Again, we decided to wait and see what would happen over the next 3 months. Another height measurement and no change - more blood work and still low levels. So our next decision was to schedule a growth stimulation test to see how much growth hormone is actually being released. The steps we would need to follow would be the growth stim test, an MRI to make sure there wasn't a tumor on his brain, and then daily shots of growth hormone to help him grow. 

I knew if we did one step we had to be able to follow through with the rest or what would be the point. 

When Tommy was having headaches and needed to go to the hospital I immediately thought maybe it is a tumor!  It was a fear of his other endocrinologist which is why he had an MRI. I have never been so scared. As the doctor and I sat there waiting for Tommy to be finished with the test and come out of anesthesia I felt like I was in a fog. We were both relieved when nothing abnormal was found. At our next doctor's appointment we scheduled his stimulation test. 

The hardest part of the test is the location - Tommy will need to be admitted to the hospital for the test and have an IV - both things that frighten Tommy more than anything else - it stirs up too many bad memories. The test is scheduled for July 3rd and I still haven't told him about it. I haven't found the right words to instill confidence that this visit will be different then the last time he stayed at Valley. The truth is the end result of this visit is the same - with low levels of growth hormone he will need daily shots to give him the growth hormone he'll need. So after explaining that he needs to go to the hospital I will need to explain he'll need daily shots till he's 16 or 17 - these discussions sadden me because I know it will be hard to understand that he'll need shots even though he has an insulin pump. He will have to learn about a whole new health condition when what he should be learning is how to hit a ball and how to swim.  He wouldn't be happy about these decisions now but when he's 30 and 6 foot tall he'll hopefully look back and be happy with the choice. 

I think about this choice every day and just pray he takes this in the same way he's taken all the speed bumps he's faced in life - he just goes with the flow. I teach my students that the benefit of a test must outweigh the risk and I know that the overall benefit will outweigh the risk. I can't help but think at some point it will all be too much for him. We will take the rough days just as we do now, a huge hug and humor. His good days outnumber the bad by a landslide so that is the good thought that helps me make the hard choices. 

Everyone's Wish

I want to share a conversation between Tommy and I at bedtime tonight.
Tommy "My pinkie hurts from testing my blood"
Me "Sorry to hear that we will let that finger rest for a while"
Tommy "I wish I didn't have to test my blood"
Me "Me too buddy"
Tommy"I wish I wasn't born with this. I wish I didn't have diabetes"
Me "Everyone wishes that and there are some really smart people working on a cure"
Tommy "Smarter then you?"
Me "Yes smarter then mommy"
He smiled and rolled over in his bed.
I share this because we have a conversation like this for at least 2 to 3 nights after his quarterly doctor's appointments so I expect it now. After some appointments he cries and just says he doesn't know why. It is truly the worst feeling for a parent to not have the ability to take his hurt away. Days like this make me wish I knew every scientists phone number and could call them and tell them all to stop what they are doing to find a cure. I know they are closer now then when he was diagnosed, which is good news but its not here yet. People are quick to say how lucky it is that there is insulin and how "manageable" the disease is. I have to point out that insulin is NOT a cure its just keeping him alive till there is one. And as far a management...it's not like taking care of your teeth - you brush maybe 2 or three times a day and floss, go to the dentist and hope for the best. It's a 24 hour a day management - you are thinking and acting for a vital organ that no longer works. As I type this I'm waiting for his blood sugar to come up from 75 just to check again at 3 to make sure it doesn't drop again.
Tomorrow will be 2 years since Tommy was diagnosed. The day meets me with mixed emotions this year because of his doctor's appointment for non diabetes things saved for another blog when I can wrap my head around it. But as far as his A1c it was good and his numbers looked good too so no changes. I have continued my tradition that I started last year - I have signed up for the JDRF walk on Oct 13th. Our team will be back trying to do what we can to help find a cure. I hope our team grows even larger this year. I can't tell you the pride tommy felt this year (as did Tom and I) seeing everyone in their team shirt. We are so lucky to have such loving friends and family and so many businesses to donate.
There is not a day that goes by that I don't wish for a cure...I think that's everyone's wish.

Happy Easter? This picture was taken only a day before he was diagnosed. As you can see in his face he's cranky - and it has nothing to do with the bunny ears on his head. I think of this picture often when his blood sugar is high - I see this look now and know it's going to be a high number.

Tommy was diagnosed on April 25th but 2 years ago that was the Monday after Easter so each Easter since then has been a mixed emotion day for me. I can't help but think about that Easter 2 years ago. I decided to change my mindset this year. You see I've carried around a good amount of guilt about that weekend for the past 2 years.

Easter morning after going through his basket Tommy wanted to eat a piece of candy the Easter bunny had left that he had wanted to eat every time he had seen it in the store - I know exactly what it looked like  - it was Sponge Bob candy that looked like a hamburger...anyway...I had let him have a piece before breakfast because it was Easter after all. Then I made his favorite breakfast - pancakes, syrup and chocolate milk. We ate and got dressed for Church. This was enough time for the perfect storm of sugar and carbs to erupt into a little boy that was unrecognizable to me. When we got to church he cried because he didn't want to be there, he needed to go to the bathroom and on the way back he yelled at me. He was SO angry - yelling at me  - telling him I shouldn't make him go to church - that he was mad at me and he wouldn't stay! Now to many parents that sounds like a run of the mill temper tantrum but Tommy wasn't that kind of kid and he had an anger I had never seen before. I actually said to him that I didn't know what happened because he wasn't acting like himself. We went to my sister's house - a place he loves to go and all he did was lay down and cry. I chalked it up to a long weekend.

So with all that I knew and have learned about diabetes I know I did not cause his diabetes but I have carried around guilt for the past 2 years for the way he felt that Easter - I cooked the food - I gave him chocolate milk - I let him have candy. No one wants their child to be hurt or in pain and to know that what I gave him made him feel so badly makes me so sad.

This Easter as we sat in church I decided to leave my guilt there. I'm not even sure what gave me that freedom to let go of that feeling that has hanged around for so long. Allison was playing with her new dress-up jewelry, Tommy kept looking at his Teenage Mutant Ninja Turtle watch and Brady was busy throwing goldfish at the woman next to me - an average Sunday at church. I know that we are doing well, Tommy is doing well and that's all I can ask for. I can't feel bad for 1 day 2 years ago for the choice of breakfast food. Happy Easter? This year, yes, a Happy Easter!

Karma

I haven't had time to blog in well....YEARS! But today pushed me to the computer. I believe in karma - I do think that what we put out in the world we do get back. I try to keep that in mind - I try to help those that need it - I try to smile because I know a smile goes a long way - I offer a kind word when I think someone needs it - we are big on the please and thank yous in our house - I try to instill the importance of helping others. And today karma has paid me back in the most wonderful way.
I am typically a positive person, I look at things with humor but some days it's hard to keep that frame of mind. This past week was especially hard - Tommy being in the hospital and waiting for word on his MRI scared the hell out of me - it brought me back to the day he was diagnosed. He looked so little and scared in the hospital bed. I was holding him when he was waking up from anaesthesia and once he was awake I didn't want to put him down. I wanted to be able to take it all away. Not getting much sleep between keeping his blood sugars in the normal range and just replaying the weekend in my head left me feeling overwhelmed...it was a rough week. Then today I opened my computer and got the most amazing email. In the fall I had a had a student that during the semester found out she had cancer. I worked with her in handing in school assignments around the tests she needed to have done and tried to email her to check in on her when she wasn't able to attend class. Since class has ended she has popped in my head a few times because I had wondered how she was doing. She was so committed to finish the the semester and do well in the class - I was amazed by her. So today I received an email from her and this was a small part of it:

"I want you to know how very much I appreciate your compassion and everything else you did to help me during my most vulnerable moments. I'll never forget you and wish you  every success in both your personal and professional life. .It's my belief that God puts people like you in specific professions/positions for a reason.  You probably will never know what your reaching out to me through your last email meant to me, but you literally saved my life! Thank you!"

This completely blew me away. Talk about good timing! I am going to print and frame this email to remind me that there are everyday angels everywhere. I may have been hers in a time she needed it but today she was mine. She's about to start her second round of chemo and she thought to take a few minutes and email me. And although not having sleep is rough it can't even remotely compare to what she's going through. Her email lets me know that Tommy is going to make it through this and all that he goes through - he is stronger then I give him credit for - and I will be there with a smile and a hug when he needs it. Her strength and positive attitude has lifted me and that overwhelming feeling is gone. Don't you love karma?

Never Brag

As I sit in the hotel in Hershey I am reminded of something I always learned from having babies: you never brag when they sleep through the night  because it will backfire on you. It happened with each of my kids, I would be so excited they slept I would tell the world and that same night they would be up. So you would think I would learn. Apparently bragging about a sleeping baby holds true for good blood sugar control as well. As I packed for our yearly trip to Hershey I worried about guessing how many carbs each meal would be. Dining out is difficult with three kids as it is but during the ciaos you also need to estimate how many carbs Tommy has eaten and hope for the best. So the days leading up to our trip caused me some stress. Tom is really good with estimating because he's had lots of experience but I'm new at the guessing game. So I thought ahead, I packed a measured out breakfast for each day so we would know that one meal would be accurate and we'd start the day on a good foot. Saturday went perfectly ...all good blood sugars...I was was so happy. By Sunday at lunch with more perfect numbers there were high fives exchanged. We had this! We were awesome! Dinner was going to be easy because Tommy wanted the same thing as the night before. I was so happy when he said that because I had written down everything from the prior night...yippy! Then they brought out the ice cream...now I know what you're thinking ...the boy has diabetes what are you giving him ice cream for. At home we have sugar free ice cream but it was his birthday and we wanted to be able to sing. So back to the ice cream - it looked like there was more than the night before so we adjusted his insulin accordingly. His pre bed number was on the boarder between giving him a 5 carb and 10 carb snack and we opted for the 10 because we didn't want him to go low and after all we have been right the whole weekend. Well we were WRONG! As per my diabetes mom contract I set my alarm for 3 am to check him just to make sure things are good and I found out what bragging got us. His blood sugar was 343 and his ketones were .9. Ugh. Ok what do you do...well 2 things bring down ketones and that is drinking and insulin. I had Tommy consume 50 carbs and drink lots of his juice. I gave him his insulin and now I sit and wait for all of that to go to work. It's peaceful to watch all the kids asleep, wonder what they're dreaming about, hoping in a few hours when they're up they will be kind to their very sleepy mom. I'm glad we are going home today. The kids miss their regular routine and I miss my kitchen scale and all my nutrition labels. I've learned two things on this trip: my daughter is old enough to go alone on a ride and you should never brag about good blood sugar!

Everyday Angels

I believe people are brought into your life at the exact moment you need to meet them. This became very clear to me the day we brought Tommy home from the hospital after his diagnosis. I wanted him to feel like himself, I wanted him to know he wasn't "sick" so when I needed to get some things for him from shop rite I offered for him to come along. He was so excited to get out and shop rite with Mom is always one of his favorite outings. So we made our way through the aisles finding his favorite things but now sugar free. He was happy he could still have chocolate milk and ice cream - things he thought he'd never have again. We even found a sugar free "juice" (also known as crystal light) that he might like. Our everyday angel appeared when we were checking out. Tommy being Tommy was chatting with the man ringing up the order telling him he was going to get sticker when we were leaving etc. Tommy started to play with his hospital bracelet that I had forgotten to cut off when we got home and just said casually to the man, "I have diabetes". The man's response "me too!" then he asked "do you check your blood sugar?" Tommy told him I checked it and told him he was at "Valley" (which is what he called the hospital) and that he was getting some new juice to drink. The man still ringing up the food talked to him like it was nothing - like all kids he meets have diabetes and I kept bagging and just listened. When I was paying the bill the man told Tommy his daughter has diabetes and she got it when she was 4 too. Tommy said "cool!" and he and I both smiled. I wasn't happy that his daughter had diabetes but I was so happy that he shared that with us. Tommy talked about the man the whole ride home. That he had diabetes like his Dad and his daughter had it like him. He wondered if she went to Valley too. It was the first thing he told Tom when we got home. What was the chance of that man being at the check out lane I picked on that day - I guess he was meant to be our angel that day. It let Tommy know he wasn't alone, not the only 4 year old with diabetes and it let me know Tom and I weren't alone, there was other parents out there going through the same we were.

Just recently I found another everyday angel. At the walk-a-ton for the JDRF I told Tom how much I liked one of the team's t-shirts they had made for their walkers. The back said "I walk for ________" and each person wrote in who they were walking for. We happened to be walking behind the parents'. I kept looking at the shirts "I walk for my daughter" and it was both sad and uplifting to me. I was sad because I realized there were so many parents, like us, with a young child dealing with this and I feel for all of those children. I was also encouraged because we weren't alone and if they could do it so could we. I started talking to the mom toward the end of the walk and found out she too had 3 kids but her middle child was the one who has diabetes and all her kids were about the same age as mine. The little girl was diagnosed when she was 11 months and now is almost 2. She showed Tommy her pump and he was amazed she had one and was even more shocked that she was little like Allison. Tommy made his way to the bounce house and I exchanged information with the mom. Every meal since Tommy came home from the hospital I felt like I was the only in the world juggling this chaos and it is comfort that there is another mom in the same boat as me. On the bad days I think about that mom and her bubbly personality - taking things in stride and I take a deep breath and do the same. At a walk with thousands of people and I meet the mom who is in a sense, me....what are the odds?

Of course my 3 everyday angels who are a consistent source of love and happiness are happily sleeping upstairs.