Tuesday, April 9, 2013

A Piece of Pop...

Today was a very special day for Gavin and me.  That sounds funny to say, being that he's suffering terribly with some type of allergy or cold virus that has attacked his eyes.  And even worse when I tell you that I dragged him to the dentist.  So maybe I'll get those updates over with first before I get to the good stuff.  The really, really good stuff.

I brought him to the hospital today for a scheduled dental visit.  I was so, so happy to get in to see one of their dentists.  I have nothing against our pediatric dentist around here - but I always had this feeling in the pit of my stomach that maybe they were missing something.  Gavin is rather defensive to people going into his mouth and he has an easy gag reflex.  The young hygienests and even a couple of the dentists we've seen at the pediatric dentist we go to seemed to "give up" too quickly.  One of the dentists, upon stopping the exam when Gavin started to freak, told me that it's no big deal.  "He's young."  I wasn't okay with that and really wanted a dentist at DuPont, the hospital where he sees everyone for everything, to see him.  After dealing with insurance hoops and other forms of begging, I was able to score an appointment.  The visit went great.  Well, if you don't count the part where he gagged and projectile vomited his breakfast all over like a fountain.  But great if you DO count the ninja moves and cat like reflexes of the hygienest and I as we caught it all.  Honestly - not a drop made it to his outfit or the dental chair.  I still have no idea how in the hell that happened.  I was the assistant (which is why there's no photo proof of this visit like there usually is) and held Gavin's hands, hips, legs and...at times, head.  He did great - he really did.  But the most important thing is - his teeth looked great.  He had a wonderful cleaning, flossing and fluoride treatment before he saw the dentist.  Now... I will allow myself to brag.  The dentist examined Gavin and said, "You take very good care of his teeth!  He looks great."

I have never felt so relieved.

One of the reasons I was so scared is because for about a month Gavin acted like I was torturing him when I brushed his teeth.  Especially on the left side.  Torturing him.  He's better now, but I was half expecting them to tell me there was a serious issue back there.  When you have a child who can't tell you when something hurts him - or tell you anything at all - it makes you very paranoid sometimes.  The dentist told me that Gavin may have six year old molars erupting.  She explained that some kids are very sensitive and can feel the tooth emerging long before we see any evidence.  It shows up in extra drooling (check) and sometimes low grade fevers (that might explain the last couple random fevers!).  I should watch for one of his front teeth to become loose first - which could be soon - and then watch for the molar.  So relieved.

After the appointment, we stopped next door to bother Gavin's eye doctors.  I was hoping someone could just peek at his very red, mucous filled eyes to make sure they were ok.  The doctor also wasn't sure if he was dealing with allergies or a cold - but advised me to use specific eye drops to make him more comfortable.  They agreed to see him if his eyes get worse over the next few days.

But the best part of our hospital visit?

Gavin and I brought my Father's wheelchair with us to donate to the wheelchair clinic.  When I saw it sitting at my parent's house a few months ago - my Mom and I agreed that donating it to "Gavin's hospital" was the only thing to do with it.  My Dad was always so generous and helpful and would do anything to help anyone in need.  And he and Gavin really had a special bond.  Leaving his chair there today was like leaving a piece of him.  It made me so happy.
Denise, who practically runs the wheelchair clinic and has become such a good friend of ours, told us how it would help.  She said that some of the Muscular Dystrophy patients end up needing steroids as they get older - which makes them bigger than they really are.  My Dad's adult sized chair would be perfect for a kid like this.  Actually, it would be perfect for the parents.  Most of these kids are in very heavy (very expensive) power chairs.  If one of the parents wanted to take a quick trip it would be so hard to handle the power chair, especially if they didn't have a wheelchair van or ramp.  Once insurance covers a wheelchair - they won't cover a second just for "convenience."  And chairs - even basic ones like my Dad's - are so expensive.  My Dad's chair is very light and perfect for a parent to lift in and out of their car or van.  My Mom is thrilled - and so are we - and so was Denise.

Denise also gave me a CD of photos from our professional photo shoot at the hospital!  They chose Gavin and me for a "Patient Story" to go on the hospital website.  Here are some of the shots!

First they got shots with Denise "fixing" Gavin's chair in the shop.  Denise is known (to us) as the "McGyver" of all special needs equipment.  If you walked in with a paper clip, a bra strap and an umbrella handle - she'll fashion a walker.  Or something like that.  She's amazing.  And, as you'll see, Gavin loves her...
Then they asked me to join them...
And here, Gavin and I are pretending that we're hanging out in the waiting area for our appointment.  This wasn't a stretch, acting wise, as Gavin and I love our alone time when we are in waiting rooms.
Finally, they asked me to pretend I was walking into the clinic.  This freaked me out.  Where should I look?  How should I pretend to walk?  Am I looking natural?  Arrgh!  Luckily, Gavin saved the day and did his best "cruise director" impression.

This way to the lido deck, ladies...


  1. I am so so glad you guys had this day together just before everything went down. Fabulous memories for you that you'll need to hold on to. Thinking of you, Ed and Brian - and Super G!! - nonstop. xoxo, Eileen

  2. Such amazing picture! We love Dupont! We are there quite often. We love Denise..she is amazing! I love the name Gavin, as.that is my sons name as well! The love you have for.Gavin is so easy to see in these beautiful pictures!

  3. I just learned of your story tonight. I am truly sorry for your loss. You have such poise, love, thoughtfulness, care, thanksgiving, strength, etc while going through what is a parent's worse nightmare. The gift you are giving other families of organ donation is remarkable. I am so thankful that you were able to capture these fun and sweet pictures in the last few days of your son's life. Even then you were teaching him to give back to the hospital that has given you so much. As a parent of two healthy children (thank you, God) I say bless you for giving us all the reminder (through your heartfelt pictures of Gavin in his last moments) that life is sometimes much shorter than WE plan and we must let our children know and FEEL that we truly love them while they are on this earth with us and beyond. My thoughts and prayers are with you and your family. May Gavin rest.

  4. As I read this entry, I had an emotional overload as I knew this was coming close to Gavin's passing. Kate and Ed you are the best parents any child could ever be blessed with. I must thank you for the tremendous amount of sharing you have done and the help you have given to so many of your followers. God bless and love...Joanne Doyle Kuzborski from Avon, MA

  5. That picture of him in his superman shirt and you smiling at each other...with all that love in your eyes...I didn't realize it was taken right before it all happened. The way you two were looking at each other... that's true love.


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