Simple Gifts

I sure miss those days when my kids dressed up for Halloween as nice things ....  like pumpkins and Disney characters.  

Halloween had a sparse turnout here in the desert.  I'm beginning to think that trick-or-treating has become a thing of the past.  I could have skipped it all together, but I reminded myself that Eric is still a little kid and he is entitled to enjoy the things his sibs and cousins did when they were his age.  It really stinks to be one of the youngest cousins in the group, as Eric usually ends up trick-or-treating solo.  

I shared this picture on Facebook, but wanted to share it here too.  This is especially for my friend Stella  Julie!  (don't mind the kid in the background getting ready to attack me with his scythe!)

We enjoyed a quiet and relaxing weekend (if you consider getting up at 5:45am this morning and going on a two hour hike relaxing).  I was listening to Christmas music on my iPod (don't laugh) on my hike and when I got to the top of the mountain and sat down to rest, the song "Simple Gifts" started playing.  I closed my eyes and allowed myself to just hear and feel the words.  I felt myself relax for the first time in a long time.  The timing of the song was perfect and something I desperately needed to be reminded of.

Here is the version of the Simple Gifts that I was listening to (Alison Krauss and Yo-Yo Ma).




May you all have a week of peace and simplicity.

A special little boy is celebrating his 12th birthday this week.  More on that later.

I Finished

I finished the LA 1/2 marathon and I wasn't the last one across the finish line.  Yea!  I have to admit, I was a little worried as I was sitting on the shuttle bus that picked us up at the finish line of the race and drove us to the starting line.  It was a loooonnngg bus ride and I kept thinking .... holy crap, how far are we going to go because I have to walk back to where we started!  The first 10 miles weren't too bad.  After that, I just wanted to be done. I'm happy to announce that I raised over $1800 $1,900 for CureCMD.  Thanks to all who supported me.

And this, my friends ... is why I walked the race (love him!)

My cool medal. 

I also had the opportunity to hook up with one of Jack's former doctors who is now at Children's Hospital of Los Angeles (and who is featured heavily in the many emails I share).  I haven't seen him in over four years, so it was great to catch up with him too.  He also did the 1/2 marathon, but he ran it and finished hours ahead of me!

Between our trip to St. Louis, my mom's death and funeral and the marathon, it's been a whirlwind couple of weeks and I'm ready for some peace and calm.  Wish me luck with that, okay?

___________________________

Some pictures from last week.

Toasting my mom with a little Tullamore Dew

(good stuff!)

Me and my sibs

Have a great week. Thanks for checking in.

Thank You

I just want to again say THANK YOU to all my wonderful friends for your kind words of support; for the emails, cards, flowers, food and, mostly, for just caring.  I think it's difficult for most people to understand the power of the support I get from my Internet friends.  They don't understand the need to search for and find a camaraderie with people over the Internet -- many of whom I've never met.  They don't understand  because, for the most part, they haven't had to look beyond their workplace, their church, their neighborhood or their child's school to find people they can relate to - people they have something in common with.  The same can't be said for me.

I'm very fortunate to have extended many of my online friendships to in-real-life friendships.  Regardless of whether I've had the privilege of meeting you in person or only online - the care, support and love I feel from my Internet friends is powerful and it is real.

To all my in-real-life, non-Internet friends, many of whom have been part of my life since long before the "Internet" became a household word - you are equally as special and I am equally as grateful for your love and support.

Thank you for caring about me and my family during this difficult time and thank you for taking the time to tell me so.

Remembering

My Mom's Obituary 

Some family pictures from the past

(Circa 1967)

(Circa I haven't a clue ... 1970?)

(Circa 1975)

(2006 - yea, I know, that's a big leap in years.  All of us and our spouses)

(2009 - my parents' 50th Wedding Anniversary party)

Even though I knew this day would come, it all seems very surreal.  Next week, reality will hit hard when family comes into town and we have to get through the visitation, funeral mass and burial. 

Next week will be tough.

Thank you all so much for your love and support.  

Now She Can Rest

(Circa 2008)

For those who don't follow me on Facebook - my mom died Monday afternoon.  Sadly, I didn't make it home in time to see her.  She fought the good fight, she finished the race, she kept the faith, and now she can rest in eternal peace.

For those who are local and who knew my mom, the information regarding her services is as follows:

Rosary - Wednesday 10/20/2010   6:00pm
Whitney and Murphy Funeral Home 

Funeral Mass - Thursday 10/21/2010  9:30am
St. Mary's Basilica
231 N. 3rd Street
Phoenix, AZ

Graveside service following Mass at Holy Redeemer Cemetery
23015 N. Cave Creek Road
Phoenix, AZ

Recap

We are half way home after an eventful week in St. Louis.  This year's trip didn't go as smoothly as the last one, but all in all, not a bad visit.  To recap:

Cardiology: Echo and EKG showed no problems.  Due to Jack's low heart rate when sleeping (low 40s), they did a 24 hour holter monitor. Of course, because it was a stressful week for Jack, his heart rate didn't dip in the 40s like it typically does.  I don't expect the holter monitor to reveal any "bad" news.  I was told, if everything looks good, I won't be hearing from them.

ENT: Ears were cleaned out and bronch showed a good airway.  No granulation tissue or erosion issues.  We are changing Jack's trach to a Bivona flexTend with a different flange and switching from TTS to an air cuff (this will make no sense to my non-trachy friends).  I'm not sure if we are upsizing or not.  The trach nurse was going to talk with the ENT regarding the results of the bronch and then decide whether Jack needs a bigger trach. I'm thinking he doesn't.

Neurology: We really don't get any "news" at these visits.  Jack's issues are obvious. Contractures are Jack's enemy right now.  We can do range of motion and stretching, but there really is no way to prevent contractures from happening.  The biggest concern I have is the jaw contractures because it will be an issue should Jack need any work done on his teeth. Essentially, Jack won't be able to have any work done on his teeth because you can't open his mouth wide enough to get in there.  After our "medical" visit with Jack's neurologist, we went to lunch with her and got to have a social visit.  Jack's neurologist is a great doctor and a good friend.

Orthopaedic: See prior post.  Not sure what to do regarding the broken screw.  I'm going to make an appointment with Jack's local ortho and get his opinion.  I suspect he'll say the same thing as the St. Louis ortho - if it's not hurting Jack, there is nothing to worry about.  It's hard not to worry about what I see in that x-ray!  As for how or when the screw broke - I really don't know.  Jack had an x-ray taken back in March by his local ortho and the screw wasn't broken then. So, it happened sometime within the last seven months.

Ophthalmology:  This appointment is the one causing us trouble.  Because Jack had congenital cataracts, he is at risk for glaucoma.  After doing the EUA, Jack's ophthalmologist told us that the pressures in Jack's eyes have been consistently rising the last six years.  He said he always draws a picture of what he sees when he does an EUA and, while the pressures aren't dangerously high, the changes he's seen in his pictures over time has him concerned.  The risk with high pressures is blindness.  Jack doesn't need to add blindness to his list of ailments.  So, the ophthalmologist wants to see Jack back in 9-12 months.  Ugh! He gave us drops we have to put in Jack's eyes everyday and then he'll do another EUA when we come back. The treatment for the high pressures is another eye surgery.  Because Jack's ophthalmologist has been following Jack since he was 13 months old and because he has been doing the EUAs and documenting the changes in Jack's eyes, I really don't feel like this is something that can be handled locally.  And, at the end of the day, as much as I hate the drive to St. Louis, I have confidence in the doctors in St. Louis and I don't have the same confidence in the doctors in Phoenix.  I wish I did because it would make life so much easier, but I just don't.

Eric saw the ophthalmologist too and he got good news - his eyes are improving and his new prescription isn't as strong. Yeah!

Vent Issue:  Apria gave me a hard time because I didn't let them know two weeks in advance that I was traveling.  They claim that if they knew I was traveling to St. Louis, they would have had a plan in place ahead of time in the event of equipment failure.  I highly doubt it. I told the Apria rep that there was no way they were going to place blame on me because they had to scramble to get me a replacement vent. I couldn't believe the hassle it was to get a replacement vent.  Apria is a national company and they should have more than one backup vent in the entire state.  Seriously people, buy more vents!  They made us drive to Illinois to pick-up the vent - which was b.s.  They should have delivered the vent to us - we are the customer.

Visiting with Friends:  As always, we had a great time visiting with our St. Louis friends.  We stayed with friends we knew from Phoenix.  We lived in the same apartment complex when we were both young and childless. They moved to St. Louis before we did and have always been there for us over the years. We also had fun visiting with Jason, Jenny and their boys, Ben and Alex.  Eric especially enjoyed playing with boys who like Lego as much as he does.  Eric also spent the night with one of Jack's former nurses who has a little boy the same age, who likewise loves Legos.  I think Eric had a good time in St. Louis.

My Mom:  While we were in St. Louis, we learned that my mom's brain tumor is back and she is deteriorating really fast.  She is now in a hospice facility and doesn't have too many days left with us.  She's had a difficult and painful road following her initial diagnosis of a GBM in July 2007 and her body is tired.  Your prayers and good thoughts for my mom and my family are appreciated.

That's the recap and update from here.  Tomorrow will be another long day, but at least at the end of it, we will be home sweet home!

The Source

I think I discovered the source of Jack's distress the last few days.  I was wracking my brain trying to figure out why Jack was completely "checked out" (in a way I had never seen him before) when he was in his wheelchair, but once he got home and out of his chair, he was fine.  It occurred to me that Jack is on a different ventilator when he is out and about in his wheelchair.  So today, I changed out the circuits on the home vent (the one hooked to the humidifier) and used it as his travel vent and he had a much better day today.  Clearly, there is a problem with our travel vent.  I called Apria and told them they needed to get the vent changed out here in St. Louis before we get back on the road.  There was some grumbling about the fact that because I have one working vent, why do I need the other vent exchanged right now.  I reminded them that I PAY for TWO VENTS and they will damn sure provide me with two working vents at all times.  I didn't make them bring out a new vent tonight, but it had better get here in the morning!

Jack saw his orthopaedist today and we learned that one of the largest screws inserted into his bones when he had spinal fusion surgery has broken off.  It's one of the anchor screws that goes into his left pelvis. The ortho says that it shouldn't be a problem and shouldn't cause Jack any pain.  I'm not entirely convinced.  Here is the x-ray - it makes me sick to my stomach just to look at it :(

obvious broken screw on your right. 

Despite the broken screw, Jack was in a much happier mood today, so I was able to get some pictures of the boys.

Nothing better than starting your day off at Starbucks. Sadly, Jack only gets to experience the atmosphere, not the taste of Starbucks (but he doesn't seem to mind!)

Waiting for our next appointment. 

And no better way to end your day than outside on the deck enjoying the beautiful St. Louis Fall weather with a couple of these

Jack has a bronch/EUA tomorrow and thankfully he doesn't have to be to the hospital until 1:45pm.  I am so sleeping in tomorrow!

Thanks for checking in and for all your well wishes.

An Update

Sorry I haven't been very good about updating our St. Louis visit.  It's been a rough week so far - at least for Jack.  I'm not sure what it going on, but he's been very sleepy, uncomfortable and crying on and off most of the week. I feel like something is wrong, but I don't have a clue what it is.  He is most miserable when he is in his wheelchair - where he has been spending a majority of his time lately.  It's very hard to see him hurting and not know why.  I'm not looking forward to tomorrow because it's going to be another long day and I can't take another day like today.

Jack saw his neurologist today and she forced convinced me to get the flu shot for Jack.  I am totally against flu shots - I don't get them for any of my kids.  But, Jack's neurologist can be very convincing and, the fact that he could get it right then - during her clinic - I decided to go ahead and let them do it. She tried to convince me to get one too, but I declined :)

I haven't gotten any pictures of Jack this week because he has been miserable.  But I did snap these pictures of just two of the many things I love about St. Louis Children's Hospital.

finally, a place that understands that vans with lifts need more space!

I've rarely waited more than 30 minutes, but nice to know that I don't have to!

Wish us luck tomorrow - Jack really needs to have a good day.

Thanks for checking in.

Safe and Sound

We arrived safe and sound in St. Louis.

I forgot how tough this drive is.  Eric did great except for about the last two hours of day two. He had had enough and was just wanting to get out of the car. He so desperately wants to fly home.

The getting Jack in and out of the car is getting tougher with each passing year.  He, obviously, can't ride in his wheelchair for the whole trip, so we put one of the captain's chairs back in the van and lifting Jack in and out of that chair is hard on one's back, to say the least.  Jack did well for the most part, but the transitions from car to hotel room and back to car were hard on him.  He was wiped out tonight and feel asleep before 10pm, which is very unusual for him.

While I really love all our St. Louis docs and I know that the trip is totally worth all the work, it makes me mad when I think of the lengths we have to go through to get Jack the quality care he deserves.

Anyway, after a good night's sleep, I'm sure I'll have more energy and be ready to tackle all the appointments and procedures scheduled this week and I am looking forward to spending time with friends.

Just a few pics from our time on the road: