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:

Senior Pictures

Check out a few more of Mary's senior pictures HERE

All I can say is .... WHAT HAPPENED TO MY LITTLE GIRL?

Just a Picture

Mom and Jack having a conversation 

(captured by Ryan House staff)

Portrait Day

Mary had her senior portraits taken today by an awesome photographer - Doni.

I snapped a picture with my phone while Doni was taking pictures.  We can't wait to see Doni's pictures.

We are spending another weekend at the Ryan House.  Ryan - the "Ryan" of Ryan House is here this weekend and he and Eric have been having a great time together.  It's nice to see Eric interact so easily with kids with disabilities.  Seeing Ryan and Eric together makes me wish so much that Jack was communicative - it would have made for a much closer relationship between him and his sibs.

Oh well . . . Que Sera, Sera.

Hope you all are having a great weekend!

What's Wrong With This Picture

Day: Tuesday

Event: class field trip to Rock and Mineral Museum

Dressed in 3rd grade class shirt - check

$10 spending money for gift shop stuffed in pants pocket - check

Sack lunch with name written on the outside - check

All set and ready to go.


What's wrong with this picture?

Field trip was Wednesday, not Tuesday.

Me: "Eric, please tell me you weren't the only one in your class who got the day wrong".

Eric: "Yes mom, I was the ONLY one in my class wearing our class shirt today."


Crap.

I swear I am always screwing up something when it comes to Eric and homework/projects/special events/field trips.  I'm clearly too old and forgetful to have a kid in the 3rd grade.  Tomorrow is Grandparents Day at Eric's school.  Perhaps I should go. I doubt anyone would question whether I belong.


Fortunately, Eric is pretty laid back about all his mom's screw-ups.

Why I Love SLCH

I emailed Jack's ophthalmologist at 6:44am this morning letting him know that Jack has a bronch scheduled on Friday, October 8th in the event he wants to perform an EUA (exam under anesthesia) of Jack's eyes while he is sedated for the bronch.

Received a response from Jack's ophthalmologist at 6:58am letting me know that "Yes, we will want to do an EUA at that time".

Received a call from the ophalmologist's scheduling nurse at 12:30pm letting me know that the EUA has been coordinated with ENT's broch and both docs are on the schedule for their respective procedures.

Not in a million years would the doctors in this City have coordinated procedures, let alone do it so quickly and efficiently.

I LOVE St. Louis Children's Hospital!

Logistics

5:00am: alarm goes off, get out of bed off the couch.

5:15am: Mark walks in the door after working all night.

5:20am: set up baby monitor in Mary's room; wake up Mary and tell her that she is on "Jack duty" and to listen for any alarms.

5:25am: Mark goes to bed in Jack's bed (so he is as close as possible to any alarms that may go off).

5:30am: leave house and go pick up sister #1.

6:00am: drive with sister #1 to meet sister #2 at our walking trail for 1/2 marathon training.

6:30am: arrive at destination and start walking with sister #1 and sister #2.

6:30am - 8:30am:  walk 8.5 miles and pray the whole time that if any of Jack's alarms go off, Mark or Mary will hear them.

9:00am:  Call Mary on her cell phone as I'm driving home and tell her to get Eric up, dressed and fed breakfast.

9:25am: arrive home; wash face; change clothes; wake up Mary and tell her that she is still on Jack duty.

9:35am: check on Jack, he's still asleep (Mark now asleep in his bed); head out the door with Eric to take him to a Sibshop.

10:05am: drop Eric off at Sibshop.

10:45am: arrive back home; breathe a sigh of relief that Jack is still asleep and didn't need anything the last 5+ hours that I've been gone; wake Jack up and start his morning routine.

1:15pm: leave house to pick up Eric; tell Mary she is on Jack duty again.

2:30pm: arrive home; Mark is awake; Jack is fine and all is well.

3:30pm: head to the Mall with Mary to look for something to wear to fundrasier/concert event tonight (because, you know ... I don't have a thing to wear in my closet!)

4:30pm: arrive home with new outfit; get ready for evening event

5:00pm: nurse arrives

5:30pm: leave house with Mary for a fundraiser/concert with my sisters and their families (Mark and Eric elected to stay home).

10:00pm: arrive home, nurse leaves; Jack is happy and I'm thankful that today went off without a hitch!

__________________________

On days like today when Mark has worked the night before, I have things I need to get done and I don't have a nurse during the day, it's all about logistics and having every piece fall into place perfectly.   Today everything went according to plan and I got it all done. Yeah! Most any other Saturday and I would have been stuck because Mary typically works on Saturdays.  Fortunately, she took this weekend off because her cousins are in town and she wanted to spend time with them.  It also helps that Jack is a night owl and not an early riser.

11:47pm: Time for this tired Mom to get to bed and get some rest so I can wake up and do it all over again tomorrow.

Life is good.

_________________________

Some pictures of the cousins having fun at tonight's event

______________________________

 “In daily life we must see that it is not happiness that makes us grateful, but gratefulness that makes us happy.” 

–Br. David Steindl-Rast

Is It Fall Yet?

Labor Day has come and gone and it's now time for some cooler, "Fall" weather, yes?  I'm usually not one to complain about the heat because I know it's the price we pay here in the desert for our fabulous Winters. However, this summer is different because I'm training to walk a half marathon.

When I decided to walk the half marathon to raise money for Cure CMD, I thought it would be no big deal. After all, I'm not running a half marathon, I'm only walking it.  I mean, how hard can it be to WALK 13.1 miles?  Well, when it's 110 degrees and humid outside (what happened to our dry heat anyway?) . . .  it is tough.  I've tried early morning and late evening and regardless of the time of day, it is still hot and miserable.  I'm ready for cooler weather now.

I'm optimistic that I can finish the walk before the sweepers provided the weather in Los Angeles in October is much cooler than it is in Phoenix in August.

Thank you to all my friends who have made a donation to date. I really appreciate it ... and you.

In other news ...

Hilary made it back to Rochester safe and sound and is happily tucked away in her dorm room.  After Mark took her shopping for stuff she needed to get her through the next few months, she promptly told him it was okay for him to leave now.  There becomes a point in time when all parents are good for is their money!

Last week, I had to take Jack to an "intake" appointment so that he could remain eligible for Medicaid.   Because of our state's budget crisis, they moved some kids who receive Medicaid to a different program called Children's Rehabilitative Services or "CRS".  I almost opted out of the whole thing because I think it's BS that we have to see doctors who will not be providing care to Jack (because we have private insurance).  But, I figured it was not wise to lose Medicaid either.  We get to the appointment and they tell me we are seeing a geneticist and the appointment will take at least one hour.  I (somewhat) calmly told them that Jack is seen by one of the top neuromuscular docs in the country at one of the top neuromuscular centers in the country and that I know more about Jack's genetic condition than their geneticist ever will.  I handed them the  three-page history/diagnoses/conditions/medications/list of physicians that I had typed up and told them everything they needed to know could be found on those sheets of paper.  When the geneticist came to the room, I explained why I was there (only because I had to be) and I told her that I didn't have an hour because I had to get to work.  She wrote fast and we were out of there in a half hour.  She mentioned some other genetic testing that would tell us if Jack has any other genetic glitches other than CMD. Seriously, do you think I care?  What difference would it make if he does?  I let her know that Jack is an impossible stick and she wasn't even going to be allowed to try.

The doctor told me she was "very impressed" with how good Jack looks given all his "issues".  She also felt the need to tell me that most marriages don't survive having kids like Jack.  Weird.

I really don't like doctors.  Except for those doctors I really like.

Well, that's all I've got my friends. Thanks for checking in!

Walking to Support Cure CMD

On October 24, 2010, I am walking the Los Angeles Rock 'N' Roll 1/2 marathon as part of Team Cure CMD.  Cure CMD is an organization whose mission is to bring research, treatments and, in the future, a cure for Congenital Muscular Dystrophies.  As many of you know, Jack was born with a Congenital Muscular Dystrophy.

I am walking to raise awareness and funds for Cure CMD.  If you would like to support me in my walk for Cure CMD, please CLICK HERE and look for the picture of me and Jack and use the donate button next to our picture.

Even if you are unable to provide financial support, your thoughts and prayers for me to finish the race ahead of the sweepers are also very much appreciated.  :-)

Thank you!
Ann

"Ten Commandments"

Something I found on my computer at work (I saved it back in 2006 but don't think I ever shared it here).  

****************

The Ten Commandments for Parents of Children with Disabilities

1. Take one day at a time, and take that day positively. You don't have control over the future, but you do have control over today.

2. Never underestimate your child's potential. Allow him, encourage him, expect him to develop to the best of his abilities.

3. Find and allow positive mentors: parents and professionals who can share with you their experience, advice, and support.

4. Provide and be involved with the most appropriate educational and learning environments for your child from infancy on.

5. Keep in mind the feelings and needs of your spouse and your other children. Remind them that this child does not get more of your love just because he gets more of your time.

6. Answer only to your conscience: then you'll be able to answer to your child. You need not justify your actions to your friends or the public.

7. Be honest with your feelings. You can't be a super-parent 24 hours a day. Allow yourself jealousy, anger, pity, frustration, and depression in small amounts whenever necessary.

8. Be kind to yourself. Don't focus continually on what needs to be done. Remember to look at what you have accomplished.

9. Stop and smell the roses. Take advantage of the fact that you have gained a special appreciation for the little miracles in life that others take for granted.

10. Keep and use a sense of humor. Cracking up with laughter can keep you from cracking up from stress.

Sunday Mornings

 . . . are for sleeping in.

This and That

(darn, I've already used this blog title before too!)

I don't have a lot to write about, but I felt the need to bump my last post because it's had me depressed all week.  I love ALL my children to the moon and back, but sometimes it just bums me out that I don't have the "typical" family with four "typical" kids.  I'm not naive to the fact that there are many parents whose typical kids give them more grief than my kids with special needs will ever give me.  But, it doesn't negate the feeling that I wish things had been different.

In other news:

On Monday, I received a phone call from the cardiologist's office at St. Louis Children's Hospital telling me I needed to reschedule Jack's appointment.  When I asked whether I had to schedule a different week and was told "yes", I calmly told the scheduler that I could not reschedule a different week because I'm driving 1500 miles to see FIVE doctors that week and I'm not (nor could I even if I wanted to) rescheduling all his other doctors.  I told him that he needed to get Jack in to see a different cardiologist.  The next day, I had an appointment with the head of cardiology (who I hear is not the most personable guy, but as long as Jack gets his ECHO and EKG and has them read, I don't really care who I see).

Crisis averted.

My nursing agency is giving me grief about Kristi working overtime.  I need coverage one weekend evening in September and Kristi said she could work. The scheduler told me "well, that puts her into overtime".  I don't really give a rip. This agency gets paid well over $8000 a month from my insurance company, they don't remotely staff me the number of hours I've been approved for, and they can darn well pay a few hours overtime to get me coverage I need.  Wouldn't you agree?  

I think I've had enough advocating for one week.  Well, actually, given my profession,  I guess I'm always "advocating".  Let's just say, I've had enough advocating for myself/Jack for one week.  I know, I'm a lightweight.  But, I'm tired.  

I'm tired a lot.

I don't know if it's the culmination of 19 years of advocating for my children with special needs or whether it's being almost 50 and the change that goes along with that. 

Regardless, I'm just bone tired lately. 

Well, I think I've sufficiently filled up enough space with words to hopefully make it worth your while to check in on us.  Time for me to go to bed get Jack ready for bed.  I'll leave you with a few pictures.

Anyone else's kids into these bracelets?

contemplating his next move

Eric told me this week that there is one thing he doesn't like about 3rd grade.  "We have to be buddies with the Kindergartners and I'm not really fond of little kids".  

Ah, to be too grown up for "little kids" by the age of 8.  

Thanks for stopping by my friends.