There are many times that having a kid with Ds looks exactly the same as having a kid without Ds. We play, we work on milestones (more deliberately, more frequently), we eat, we snuggle, we tickle, we take away phones, paper, straws, and forks at restaurants, we console when he is sad, we giggle when he is angry, and we rejoice when he is happy. We work hard to make him happy. Most of our lives consist of these things. They are very normal and very typical components of raising a kid.
There are other times that having a kid with Ds is a challenge. Yesterday and today had their challenges. Every year, Johnny will have blood tests to check his thyroid and for any indications of him developing leukemia. Thyroid issues run rampant in people with Ds and leukemia is found in the "Ds population" at an alarming rate of 1 in 100. It is very scary to me. I don't like risk factors anymore so I try not to look at that ratio too much.
Yesterday, at our one year appointment, we did the first blood draw for these tests. Anyone that says having a kid with Ds is easy, can come with us to one of these appointments. Anyone that tells me that having a kid with Ds isn't hard, can help me hold Johnny down next time. Anyone that thinks that kids with Ds are always happy, can look at his screaming face while they find a vein that will work and take the necessary vials for testing. It is a challenge. It is really hard and I hate doing it. I completely feel that it is necessary and well warranted. I am completely grateful for medicine and all the detection that takes place to help us treat any issues he may have, but it breaks my heart to be brave for my son as he gets this blood draw (or any of his extra treatment so far). There is only so long a mom can put on a smile, whisper sweet things, and fight back tears. It's torture.
Then we have the waiting game to hear the results. I was constantly checking my phone today, wondering if the call had come, eagerly answering every number. Dr. Bel called us with the results herself (at 5:15 on a Friday evening...our pedi rocks) and let us know what they found. The lead and leukemia results were fine (praise, praise, praise). As far as the thyroid issues go, they test 5 different things, and one of those was elevated. For TSH, in kids Johnny's age, they look for a number between 4 & 5, his was a 6 point something. I am not sure what the standard deviation is for kids his age, but it is enough to warrant extra testing. So we add new specialist to our list, we will be seeing a pediatric endocrinologist through Texas Children's Hospital soon (praise that we live in Houston and that all of these specialists have systems that talk to one another).
It is challenging to deal with all of this. Sometimes my head feels like it will explode with keeping track of all of the doctors, appointments, and medical needs that he has. But honestly, he is so easy in everything else in his life, that he really makes up for it. It makes my heart hurt to see how much he puts up with medically, but his pure, good smile shines through as soon as his initial cry is over. I am glad that we have him and I am glad he has us. We stay strong for our son and know that he (and his siblings) are worth the fight.