Busy Times

Our summer will be coming to an end very soon.  Owen is all registered for Medical homebound school.  His friends are all back to school Monday morning.  Kam starts her senior year on the 2nd of August.  I am even planning on jumping back into higher education myself.  We are enjoying the last days of lazy summer days.  It all went by too quickly but we didn't waste a second of it.  

We have been squeezing in doctor, dental and orthodontist appointments.  Logi had molluscum that just won't go away after months and months.  Our ped tried beetlejuice and it seems to be doing the trick.  He has super sensitive skin and blistered on his armpit but after a week, it's all healed up and didn't bother him too much.  Has anyone else had success with beetlejuice?

 This is our typical summer day.  I have been using clicklist with Frys to order all my groceries online and then having them load them up in my car when I arrive at my assigned time.  It is the BEST time and money saver ever!  The kids always love to go along to "grocery shop" and usually hit me up for some kind of fast food since it's a rarity around here.  Logi surprised me when he asked for a "hamburger" the other day.  My toddler is probably in the majority and just doesn't eat a whole lot, so when Logi asks for a burger, Logi gets a burger.

 Owen has thick, wavy hair and it's growing like crazy with these steroids.  He has been going to cubscouts lately and all his friends have the "comb over."  Owen has been begging me for a "comb over" style so that's what he got.  He loves it!!  It'll grow on me.

 We had terrible luck on Thursday.  I got a speeding ticket for going 10mph over on my way to Phoenix Children's for cardiology.  We had a 9am appointment, finally finished his echo at 10:30 and by 11:30 we still hadn't seen a doctor or NP.  We finally left.  Dr Z wasn't in anyway, so now we will just head back Monday morning for clinic.  We rushed to get home, packed and to the airport to find our flight was delayed by hours!  We didn't get into San Jose until 11pm.  The rental car place said they gave our car away.. "sorry, but you'll have to pay today's rate and all we have is an SUV."  After about 15 minutes of nonsense.. I got my SUV for my original rate.  We didn't get to our hotel until after midnight.  What a day.  Glad this little travel buddy can laugh it off with me.

 We have been trying to schedule Neuropsych testing for over a year now and I'm so glad we finally got it done. Owen said it was super challenging... "I LOVE a good challenge!"  He had the best time.  She will score him and may call us back in August when we are there for biopsy to come in and do a little more if needed.  We should have a full report in the next 4-5 weeks with a written report for Owen's school.  This information will be valuable when we are working on his IEP and come up with a plan to get him caught up in school.  With a history of hypoxia (low O2 saturations for his first 5 1/2 years with high flow oxygen at times), hours spent on bypass, ecmo and cardiac arrest..  we want to make sure we aren't missing anything.

We finished with testing a little early and had a little time to visit friends at the hospital.  Owen loves to turn every corner in the hospital and see a doctor, nurse, iv tech, or family that he wants to chat with.  We got to say good luck to Cam Harris as he was wheeled off to get his new heart!!  We visited Debbie in the CVICU as she is post op from her heart transplant.  We found out another little girl around the same age got her transplant a few days before Debbie.  We still have a few friends waiting for hearts and we got news of a couple heart friends that have passed away.  Sebastian has been gone for a whole year and I will never forget him or being there on his final day... we may have ate pickles and apples for him   My heart is so sad for all these families and while we celebrate the new life that our friends (and we) were gifted with... we grieve for the donor families.

We are so blessed by each and every experience along this journey.  The people we meet, the heartache, the celebrations, the fear... it's life changing.. for the better.