Addie Update

Day 42

Hotel Morning 10

Our Visit To Seattle Children’s Hospital

Today was our appointment at Seattle Children’s Hospital for Addison. I shared earlier in A Whirlwind how my sister noticed that Addison had one leg more swollen than the other. 

This picture doesn't show too well...but a little...for those of you who are curious. 

So today was our much awaited appointment. We stayed at a hotel in Issaquah last night so we were up in the area this morning. Which all turned out for the better, turns out that a very dear friend was spending her last night in Issaquah and we had the chance to visit for a little while before our daily commitments called us back to life. 

This morning, Toby(my husband) and I dropped the boys off with my aunt so she could watch them for us while we went to the appointment. I was not sure how we were going to handle it all and knew it would be better if the boys were not with us. They know some already about our concerns and Easton was pretty worried and a little stressed yesterday and this morning knowing that she had her appointment today. They are kids and should not have to worry too much about their sister’s well being. They need to know exactly what they do…that we are a little concerned, she is a happy and loving sister that we need to love on as much as we can because she is growing up so fast already!

A the hospital, we checked in, filled out paper work and were called back with the nurse where she took measurements and started to explain how the counselors would be coming in to go over some background information. They did just this and it makes me want to create my family tree. They asked questions like, “How did my paternal grandpa die?” Maybe I would know this if he died while I was alive. Chatting with my mom on the way home from Seattle, he died from a poor heart. This interview also helped to remind me once again of how fortunate we are…I have over 100 cousins on one side of my family and over 25 on the other…none of my cousins have any diseases or illnesses that are of huge concern. What a healthy family! 

So back to the appointment. They went over all of our genetic history as the doctor walked in and was filled in and helped us go over the rest of the questions. 

He then jumped in and started explaining what he saw and he ruled out a few things for us but also stated that he agreed that one side of her body was definitely different than the other. Was it that one side wasn’t growing as fast or was the other swollen. We all agreed that it did look like the one side was swollen. She has what they call isolated hemihypertrophy which simply means…larger on one side. They have found in the past that children with this are at a higher risk of developing a wilma tumor --- which is a tumor in the kidney or hepatoblastoma which is a tumor in the liver. His findings and recommendations were to continue to get an ultrasound once every three to four months until the age of eight. The protocol for this situation also calls for a blood test once every three months and an abdominal exam once ever six months. The doctor as friendly and considerate as he was kept saying how it is going to be a hassle and really taking an attitude that we were going to be upset and irritated that he was recommending us to take her in every three to four months for then next eight years. My thoughts are…we are blessed to have the technology to be able to take her in and have these tests ran. To hopefully never have a tumor develop but if one does we will be given the chance to catch it right away and then have it removed. We are blessed that a tumor has not developed and that we could all go home knowing that she is a happy and healthy baby girl! 

I turned to my husband on the way out and said how thankful I am that we do not have permanent name tags on our necks and pray for strength, patience and understanding for those who do. 

So for now, we will schedule the next ultrasound and blood draw, we will pray that a tumor never develops and we will pray for all the other children and parents that are patients at Children’s Hospital that they can all return home healthy!