Leave no stone unturned

They past few weeks have just been jam packed full of appointments and meetings. We spent three days in Boston last week and our usual Wednesday visit this week, and we are really no closer to knowing what to do with Kai’s chemo.

Last week:

Tuesday– we met with ORL to check on Kai’s breathing and swallowing. The doctor was wonderful. Very informative and gentle with Kai. They did a quick scope in his nose and down his throat. We found that Kai’s adenoids are enlarged which is causing his loud breathing/snorting/ snoring. The adenoids are blocking 80% of Kai’s breathing through his nose! The doc explained that sometimes enlarged adenoids can be cause by dry winter air so he would like to wait a month or two and see if there is any improvement. If there is no improvement Kai will likely end up having his adenoids removed. I do not like the idea of another surgery, but 80% blockage is pretty scary as well.

The good news is that the doc said his larynx is functioning normally. It is opening and closing appropriately but may not be closing completely tight which could explain the choking on clear liquids. He ordered a swallow study to be done next week. After all of that we headed off to chemo. We decided to still keep Kai off of the vincristine. I have defiantly seen some improvement since being off the vincristine. Hopefully his improvement will continue and we can stay on this protocol as planned.

Wednesday– back to Children’s Hospital Boston for more meetings and more tests. We met with OT bright and early at 8 am. It went well. The therapist was great and Kai did pretty well. The therapist was happy with the OT services we are getting at home through EI, as am I. She had a few new suggestions but nothing  much different than what we already do. It was a good visit until the end where Kai vomited on me :/ I guess that’s what I get from brining him to OT the morning after chemo. Poor kid.

Next up was his 3 month audiology screening, which went exactly how it always does. His hearing seems fine when they test with the probe in his ear but his behavioral listening was poor. This does not mean he is not hearing, he may just not be that interested in the test. They are still hoping to do and ABR hearing test next time he has a surgery, which hey may be coming up soon if he needs his adenoids removed…

Later that afternoon we went over to Perkins for another field vision test with Dr. Mayer. She was again amazing, but by this time Kai was pretty fatigued and had had it with all the testing. He did very poorly and showed a lot of change in his vision. I suspected he was having loss, but he tested even worse than I was expecting. The Dr said that yes she believes there has been vision loss since she first met him 5 weeks ago, but that he was also testing even worse do to circumstance. Amazingly she agreed to see him again in a few weeks, before receiving chemo, to see if we an get a better read. she s an extremely hard appointment to get so I am so thankful she has been able to squeeze us in again. This test is a very big deal for us and will probably be the determining factor to see if we switch protocols or not.

Thursday– Kai participated in a pediatrics lab at the New England Collage of Optomtry where our good friend Joe is studying. Joe helps us sort through all of Kai’s optic reports every month and has been a wealth of knowledge through this whole process. I was glad to be able to brig Kai in so the students could see a child with true vision problems. Kai did really well. It was a fun experience and thankful Ashley came with us to help me with Kai. The students were very good with Kai and I hope they learned something by seeing a real life case like his.

That was the last of our appointments last week. After all of that Ashley and i packed  up and heading to the cape for a girls weekend. Kai spent the weekend with Gigi. This is the first time I have been away from him overnight! Everything went well. Grandma survived and Ashley and I had a nice relaxing weekend! It was a great little break and I swear Kai did get bigger in those two days! He looked like such a big boy to me when I saw him Sunday night!

This week we headed into Boston on our regular Wednesday but it was another appointment packed day. This time we met with PT and neurology before heading over to the clinic for chemo. It was a long day but it went pretty smoothly. Again this week Kai received only the carboplatin and not the vincrstine. I have to say, almost 6 weeks off the vincrstine now, Kai is doing so much better. Many of the problems that were coming up seems to be slowly fading. He is certainly happier and more content. The carboplatin makes him tired for a few days and he is still a bit nauseous but he is not nearly as whiny and irritable! We have not used any pain meds in over a month! I even think his vision is improving a bit.

I feel a bit crazy sometimes for making such a big deal about these worsening symptoms, that seem to start getting better as soon as I mention them.  Thankfully our team is very understanding and supportive and are happy to look into anything that may help Kai. Leave no stone unturned!

Kai is a tricky one and I’m not the only one who can’t quite figure him out! 20120406-075419.jpg 20120406-075431.jpg 20120406-075448.jpg

4 thoughts on “Leave no stone unturned

  1. Kerri, I am soooooo happy you got a weekend away w/Ashley!!! You really deserve it, must have felt strange & wonderful all at the same time!! And I’m sure Gramma was incredibly thrilled to get a whole weekend w/Kai 🙂

  2. Wow! What an incredible and tireless advocate you continue to be for Kai! I think your philosophy of leaving no stone unturned is a good one, although exhausting, I’m sure. (so glad you had a couple days off for yourself, very important!) Thank you for continuing to keep us informed… Hope he keeps getting better. As always, sending good thoughts…

  3. So glad to hear you had a nice little getaway, especially with all the appointments and news recently. As always, I am so glad little Kai has you to be such an incredible advocate and support. I’m thinking of you guys always and sending all my best thoughts for better news everyday.

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