Fred In My Head 2017

Yesterday we had a day at SeaWorld!  It was fun but very hot.  We were able to see the shows but Abby got a little over heated which is harder to deal with at the park but we got her into the penguin exibit and she cooled down.  It was a little scary and had us a little worried but once she was cooled down it was good.  Makes me glad that we live in a cooler climate and had me wondering if we will be able to do other outside attractions while we are down here.  SeaWorld is about 2 and a half hours from Jacksonville so we were traveling back between 8 and 10:30 at night but the traffic was still crazy.  We had planned on going somewhere each weekend since we get free tickets but between the heat and the traffic I am not sure that I will want to do that without Jerry.  I am a little worried about Abby going into adrenal crisis from the heat.  Everywhere down here has air conditioning so we may just have to do indoor activities. Today we did an indo...

We had a full day today with lots of new experiences!  Abby had her audiology appt this morning and then we were free for the day! The hearing test was to establish a baseline before treatment begins.    We met the cast of the musical Annie and they sang a few songs for us and Abby got her photo taken with them.  They were visiting the Children's medical center where Abby had her test.   We took the kids to the ocean which was a first for both of them and hung out at the beach for a while.  Abby had fun gathering sea shells.  We drove around Jacksonville and went exploring a little bit...found a chocolatier and bought some amazing sugar free chocolate and also found a popcorn store that sells all different flavours of popcorn.  We must have sampled 10+  kinds before Abby chose her favorite..   Salt and Vinegar!  We make this at home all the time so it's good to know that she can have her favorite anytime! The ...

This morning we had planned on going to the Jacksonville Zoo but ended up at a birthday party instead !  Today was Reed's 6th birthday.  Reed is the RMH (Ronald McDonald House) dog !  He comes to visit often and today was his birthday.  We had cake and ice cream and lots of puppy love!  We also went to the Jacksonville Farmers Market and had the best cantaloupe and mangos I have ever tasted!  Fresh produce at great prices had me wanting to fill my trunk and start canning!  Lol   We also went to check out the YMCA.  They have an amazing facility that we have access to while we are staying at the RMH.  It is only a year old and is right on the river so while you are working out you have a great inspirational view.  They have classes that we can take and a track so Abby can still do her hour walk each day but can be in the air conditioning instead of out in the heat.  She has a hard time regulating her temperature due to...

So today we had to be at the proton center bright and early at 8am.  We have almost gotten used to the time change but it still seemed early.  We met with our nurse Amy, our social worker Heather and our team down here.  Our Doctor is Dr. Rotonda and he is a fellow Canadian from Montreal!  We also met Abby's child life specialist, Mimi, who took her on a tour while we talked to Dr Rotonda.  Once all the paperwork was signed they took Abby to make her mask that they use to keep her still during her treatment.  They need a few days to get everything ready for her first treatment which will happen on August 3.  She has a total of 30 treatments over 6 weeks.  Once we finished everything at the proton center  we picked up our rental car and headed to Walmart to pick up some food for Abby.  The Ronald McDonald house here is amazing and has supper prepared by volunteers each night.  The food is delicious but there are lots of carbs and su...

We have arrived in Jacksonville and the heat and humidity is everything we were warned it would be. The flight was scheduled to leave Calgary at 6am so we were told to be at the airport at 3am.   Jerry worked Friday and didn't want to drive at 2am so we left Rocky at 10pm Friday night and got to the airport at 12:30 Saturday morning.   We waited at the airport until 4am when the airline check in opened and in line again because the customs/immigration booth didn't open until 4:30.  Next time we check beforehand to see when offices open. We were very tired as we flew out of from Calgary to Houston.   We had breakfast in Houston as we waited for a delayed flight to Jacksonville.  Abby slept a little on both very full flights, trying to master the art of sleeping on a parents shoulder.  When we walked out of the JAX airport we were hit with a wall of wet heat.  The thunderstorm that had just passed through had lowered the temperature fro...

Flights are booked !  We leave early Saturday morning.  Fly out at 6am need to be at the airport at 3am!  Arrive in Jacksonville at 4pm.  Abby is very excited to fly!  Now we can book our accommodations and start packing. Found out today that Abby's first appointment is Monday however it takes 5-10 days to do the testing to map the tumour, program the treatment and make her mask.  This means her 6 week treatment doesn't actually start till after this is all done.  Just means we will be extending our stay by another 5-10 days longer than we initially expected.  Abby is sad as this means she will miss more school than she thought. Checked the 14 day forecast for Jacksonville tonight.  Hot and humid with chance of rain every day.  Highs of 33 during the day and lows of 25 at night!  Right now at 11pm it is 26 feels like 41!  Crazy!

We are just waiting for the flight information from Alberta Health Services, but it looks like Sherri-Lynn and Abby will fly down on Saturday.  I (Jerry) will join them for a few days to meet doctors and hear the treatment plan and then come back for a bit to make sure the house has not been destroyed by those left behind.  When I go down the second time I will have a bit more time to plan and book flights but everything is a little last minute this trip. Treatment takes place at the University of Florida Jacksonville.  We will find out the schedule shortly.  Abby will receive proton radiation therapy 5 days/week for 6 weeks, and it looks like they will be down there for 7 weeks total.  The treatment is at the same time each day. Jacksonville's forecast is ranging from 30 to 36 degrees for a high everyday for the next 2 weeks, with a humidity level of 60% - 80%.  We are looking at swimming pools to hang out in to try and keep cool, especially as Abby's ...

Found out this afternoon that our funding is approved for Abby's proton radiation treatment in the US.  We will be going to Jacksonville, Florida and they told us to expect our first appointment to be on or around July 24.  It seems super quick but we have been waiting a few weeks already and it is definitely more notice than we had when we went to the Stollery!  So the funding covers Abby's treatment, her flight and the flight of one caregiver.  We are on the waiting list for the Ronald  McDonald house but will probably have to book accommodations for the first few days or weeks depending on availability at the house.  Jacksonville is a medical hub that has many patients from all over the world coming for treatment so the Ronald McDonald house is often booked.  As soon as we find out when our flights are we will start looking a place to stay.  Jerry will hopefully be coming down with us for the first week to get us settled in.  Treatment i...

Abby is so excited to be dog sitting!  A woman from my work has a little dog named Rocky that usually is at home while she is working but Abby has volunteered to play with him all day so he doesn't have to be home alone.  This is the best arrangement ever!  Rocky gets to run and play all day and Abby gets a dog to play with!  It is a win win!  Puppy love is great therapy!  Abby is doing well and we are still waiting for news about our trip south.  We should hear in the next few days but we really don't know!  Abby is doing well on her new diet.  She is still gaining a little bit each week (about half a pound) but that is way better than the 2.2 lbs/week that we were seeing earlier.  We just need to keep offering vegetables and hopefully someday she will learn to like them! Lol We will post as soon as we hear anything about our trip s outh !