I wanted to give everyone an idea of how things work at the clinic. You check in and they quickly get you into a numbered room that is about 10' by 8' wide with a bed, many machines, and two seats. Since Everett's treatment calls for him being monitored by ECG for the entire time, he cannot move more than a 6' radius for approximately 3 hours (now you all know why we're so proud of him). He is simply amazing for a 2.5 year old. He will sit quietly in his chair and play with a toy, color, or watch TV. One of the nurses asks him to dance every morning and he obliges. He can get down and move a little bit but he never tries to get away or throws a fit. I really don't know how he does it. I get very anxious when our time is almost up.
Everett is on a bunch of medications now and trying to keep track of the dosing schedule requires a calendar.
- Tretinoin (ATRA, which requires mixing with soybean oil for oral dosing)
- Sulfamethoxazole (Bactrim)
- Ondansetron (Zofran)
- Clotrimazole (For what we believe to be ringworm)
Here's another one with all his wires and tubes attached:
It seems like each week grows a little harder on all of us. Leaving becomes more and more difficult and Avery wasn't happy at all with us on Sunday but we will get through.
Love you all!
This week has been particularly tough for mommy. I miss daddy and Everett like crazy and wish we could all be together. I can rationalize in my head that this is just something we have to do and it will all be over soon, but my heart breaks that Everett and Avery have to be apart for weeks at a time and that our family is faced with this ongoing struggle. I look at Everett, and he is so brave and so strong ALL the time. I know that we have to be brave and strong too. Sometimes it's just a little harder than others. Avery and I are at home waiting for you guys to get back. We love you!
ReplyDeleteMommy
Hang in there Val and John! He is absolutely adorable! One good thing that comes out of all of this is that it brings family and friends closer than ever. Please let me know if you need anything, including advice. We are all in this together and I definitely understand the frustrations that come along. You and John seem to be handling this amazingly well and your love for each other and your family shows in all your posts. Thoughts with you always! Victoria Sallade
ReplyDeleteSo so proud of Everett! He is an amazing little guy!!! My heart also breaks that he and Avery have to be apart so much, but they probably won't really remember this when they are older. It will just be a "blip" on their life timeline :) Also, the time will fly by - before you know it. David has been away almost a year, and I'm amazed that the year is already almost over. Sending hugs to all!!! Love you guys!
ReplyDeleteEverett is pretty awesome! I know my 2.5 yr old would not sit like that. Thoughts and prayers sent.
ReplyDeleteEverett, everyday I pray for you.You been such a strong little man ,taking treatments like a pro.and not moving much during them.I'm so very proud of you!! You are doing this like a champ!! LOts of Love Aunt Angie
ReplyDeleteVal,
ReplyDeleteI can't imagine how your heart must break when you have to separate your family to do what you need to do. Your boys are so beautiful and they are a reflection of you and John. We are all praying for each of you to get through this difficult time and please know that we are here to do whatever we can. Right now, it seems like prayers are all we can do. We love you - Aunt Debbie