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.