Daily Living With Distress and Enrichment

This weekend, I was looking through some of the papers and articles I’ve accumulated over the last eleven years.  I came across an article that I shared on the Tracheostomy.com message board back before I started blogging.   I think it is worth sharing again with those of you who follow my blog who also "live the life" or who are close to those of us who do.

The article discusses the results of a study of families of children who are supported by a ventilator or positive-pressure device at home.  The results were not surprising and, from my perspective, were spot on.  I also think much of what this study revealed is true for parents of any medically fragile or chronically ill child, not just parents of children who are ventilator dependent.

The study explored the moral dimension of family experience through detailed accounts of life with a ventilator dependent child and examined the moral phenomena inherent in (1) the individual experiences of the ventilator-assisted child, siblings and parents and (2) the everyday family life as a whole.

The study identified six principal themes:

1.  Confronting parental responsibility: parental responsibility was described as stressful and sometimes overwhelming. Parents needed to devote extraordinary care and attention to their children’s needs. They struggled with the significant emotional strain, physical and psychological dependence of the child, impact on family relationships, living with the daily threat of death, and feeling that there was “no free choice” in the matter: they could not have chosen to let their child die.

2.  Seeking normality: all of the families devoted significant efforts toward normalizing their experiences. They created common routines so that their lives could resemble those of “normal” families. These efforts seemed motivated by a fundamental striving for a stable family and home life.  This “striving for stability” was sometimes undermined by limitations in family finances, family cohesion and unpredictability of the child’s condition.

3.  Conflicting social values: families were offended by the reactions that they faced in their everyday community. They believe that the child’s life is devalued, frequently referred to as a life not worth maintaining.  They felt like strangers in their own communities, sometimes needing to seclude themselves within their homes. 

4.  Living in isolation: families reported a deep sense of isolation. In light of the complex medical needs of these children, neither the extended families nor the medical system could support the families’ respite needs.

5.  What about the voice of the child? The children in this study (patients and siblings) were generally silent when asked to talk about their experience.  Some children described their ventilators as good things.  They helped them breathe and feel better.  Some siblings expressed resentment toward the increased attention that their ventilated sibling was receiving.

6.  Questioning the moral order: most families questioned the “moral order” of their lives.  They contemplated how “good things” and “bad things” are determined in their world.  Parents described their life as a very unfair situation, yet there was nothing they could do about it.  Finally, an overarching phenomenon that best characterizes these families’ experiences was identified: daily living with distress and enrichment.  Virtually every aspect of the lives of these families was highly complicated and frequently overwhelming.  An immediate interpretation of these findings is that families should be fully informed of the demands and hardships that would await them, encouraging parents perhaps to decide otherwise.  This would be but a partial reading of the findings, because despite the enormous difficulties described by these families, they also reported deep enrichments and rewarding experiences that they could not imagine living without.  Life with a child who requires assisted ventilation at home involves living every day with a complex tension between the distresses and the enrichments that arise out of this experience.  This irreconcilability is particularly stressful for these families.   Having their child permanently institutionalized or disconnected from ventilation (and life) would eliminate both the distresses and the enrichments.  These options are outside of the realm of what these families could live with.

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

I found it very interesting to read that a lot of the stress we feel in our daily life is attributable to the inability to reconcile the tension between the distresses and the enrichments that arise out of this experience.  It makes a lot of sense, but I never really thought about it that way until I read the article. I don't know that we can ever truly reconcile the hardships and the joys of this experience. For "survival"  purposes we have to try and keep focused on the enrichments our child brings into our life (and there are many).  But, it's also important to recognize and accept (without guilt) that somedays we won't be able to think past how tired, sad and lonely we are and that is okay too.  It's a delicate balance (and utterly exhausting) to find a place of inner peace given our daily struggle to reconcile the distresses and enrichments of this life.

The article discussing this study was published in the January 2006 issue of Pediatrics (the official journal of the American Academy of Pediatrics).  If anyone wants a copy of the article email me and I'll send it to you.  I have it saved on my computer at work, so just know if you want a copy it will be coming from my work email.

Happy Birthday Pics

Happy Birthday To You

Happy Birthday To You

Happy Birthday Dear Jack

Happy Birthday 

To You!

And Many More . . .

Thank you all for your sweet birthday wishes.

Love,

Jack

Happy Birthday Jack

Eleven years ago today, Jack and I began our journey down a road on which I spent many years desperately searching for a U-Turn.  I never found that U-Turn, but I discovered so much more along the way: courage, hope, patience, perseverance, acceptance and abounding friendships.  What a privilege it is to be Jack's mom.  Happy Birthday Buddy!

**********

Email post is below.

Emails

Of all the doctors whose emails I share below, only one still remains at St. Louis Children's Hospital and continues to provide care to Jack as a patient. The other doctors have moved to other top Childrens' Hospitals around the country, yet they continue to be there for me and Jack - whether to answer questions or to simply listen and give support.  I am very fortunate to have found such a remarkable team of doctors who have gone above and beyond the call of duty and who have been there to hold my hand and walk me through the last eleven years.

__________

June 24, 1999

Dr. M,

We’ve been home for two weeks now and we’re still home, so that is good news. Jack had a terrible Monday – S from the PICU was here as his nurse and he had her hopping. He spent most of the day on the vent. We are not sure why he had such a tough time on trach collar. He has done well the rest of the week, however, his secretions have increased slightly and have gotten a little thicker. They are still clear, so I don’t think he has an infection.

His feedings have gotten a little better, but he still has trouble keeping them down. His first feeding in the morning is his toughest. I had Dr. H prescribe Reglan, which he was on prior to being admitted to the PICU. I haven’t given it to him yet, but if he continues to have trouble keeping his feeds down, then I’ll probably give it to him. Any thoughts on this?

That’s our update. I’ll let you know if anything significant shows up.

June 25, 1999

Ann,

Glad to hear Jack is doing so well. Please keep us posted and let us know if we can otherwise help at all.  Go Jack Go!

B

__________

November 23, 1999

Dr. G,

Jack had a lot of coughing this am with moderate secretions – more like allergy symptoms. I gave him an albuterol treatment this am. Around 6pm tonight he looked a little distressed and sounded collapsed on his right side again, so I have him albuterol, PD and I bagged him for a few minutes to open him up. I turned his rate from 8 to 6 – you wouldn’t think it would make such a difference. Jack must have a low tolerance for change – just like his mom!

__________

March 6, 2000

Dr. G,

During the day Jack has been on a rate of 4 and pressure support of 8. I did turn down his rate to 1 for several hours on Saturday and he did okay. At night he remains at 10 and 10.

To be honest with you, I’ve lost all interest in weaning Jack from the vent. It seems that every time we start making progress he gets sick and we go backwards. It’s easier just to not have any expectations. Interestingly, it has been one year today that Jack has been on a vent – a depressing statistic.

Maybe you can give us a “plan” for weaning – as I’m tired of trying to figure Jack out.

__________

March 27, 2000

Dr. C,

I wanted to let you know that I’ve decided that I will agree to have an MRI of Jack’s brain. Because I’m convinced that there is nothing wrong with him cognitively, I guess I shouldn’t worry about what the scan might reveal. Anything that might get you closer to figuring Jack out is worth a shot.

__________

May 15, 2000

Dr. M,

I received a copy of the report from Dr. B and its states, in part: “there is moderate diffuse cerebral atrophy with prominence of the ventricular system and sulci. There is absence of the inferior vermis and of the cerebellar tonsils bilaterally. The remainder of the posterior fossa appears unremarkable.”

I spent a good part of this afternoon down at the medical library researching what I could so that I can better understand what Dr. C will have to say and to come up with some questions of my own. Like you said, I’m focusing on Jack and his progress, not some textbook explanation of what these brain abnormalities mean.

P.S. Jack has been tolerating pressure support trials of up to 5 hours a day - 2 hours in the morning and three hours in the evening (can you guess who is doing the evening trials?) During the trials his rate is 0, pressure support 4 and peep 5. Maybe we’ll get back on trach collar soon?

__________

May 30, 2000

Ann,

You already know what my advice would be – don’t push him too, too hard. Don’t look at it as how he is compared to his best, look at it compared to his worst. Now that is a long way. I would really encourage keeping a minimum rate and pressure support during sleep until you’re sure he’s really OK on trach collar for a while during the day.

Congratulations! You have really done an incredible job with him. Now, there is no way he can give you any trouble as a teenager.

B

__________

September 1, 2000

Dr. M,

The alarm that is going off is “volume error”, and, although I appreciate your confidence in me, you guys are giving me too much credit when to comes to vent settings. I have an understanding as to what the range is for his pressure support and rate, but when you suggest that I go up or down on certain settings, I need numbers.

I turned his sensitivity setting up from 3 to 5. He did not alarm at all last night, but he was positioned on his side and his night nurse did not reposition him at all. But this morning, when I repositioned him on his back, he did alarm, but only once. So maybe changing the sensitivity did help some. Should I adjust his tidal volume next? If yes, give me a number. Doesn’t tidal volume only come into play when he has a rate. With a rate of only 8, how does changing the tidal volume make much of a difference?

September 1, 2000

Ann,

Regarding;

The alarm that is going off is “volume error”, and, although I appreciate your confidence in me, you guys are giving me too much credit when to comes to vent settings. I have an understanding as to what the range is for his pressure support and rate, but when you suggest that I go up or down on certain settings, I need numbers.

OK, 1, 2, 3 … sorry, just kidding.

I turned his sensitivity setting up from 3 to 5. He did not alarm at all last night, but he was positioned on his side and his night nurse did not reposition him at all. But this morning, when I repositioned him on his back, he did alarm, but only once. So maybe changing the sensitivity did help some. Should I adjust his tidal volume next? If yes, give me a number. Doesn’t tidal volume only come into play when he has a rate. With a rate of only 8, how does changing the tidal volume make much of a difference?

. . .

It would really help to have someone stand there and turn the dials and see what is happening. Do respiratory therapists still come out? Can they call us next time they are there? I would suggest you bring him by the hospital but I know how much you love to visit (NOT!) and besides, if it only happens when he sleeps, stopping by may not help.

B

__________

November 13, 2000

Dr. C,

I had emailed Dr. H regarding his progress on the research he was doing with respect to Jack’s muscle tissue. I have forwarded his response I received. Could you please tell me what the results sent to you said? What did they test for that showed up as “normal”? I’d like to know what diagnoses can be excluded. I realize you are busy and have many patients, but my life is Jack and I live daily with his condition and not knowing where we are heading. I’d appreciate receiving all information you receive regarding Jack. Unless someone tells me that there is no hope of him getting better then I am going to pursue any and all avenues relentlessly ruling out treatments rather than just assuming they won’t help. I’d still like to know why we can’t try IvIg treatments. The steroids clearly helped some, but they didn’t put him in remission if that is a possibility. I need to know that it won’t help, not just assume it won’t. Dr. S said that you felt side effects from steroids were less than with IvIg treatment. Don’t you think that should be my call?

__________

March 23, 2001

Dr. G,

Jack is not doing so great. Lots and lots of secretions, coughing, puking, suctioning (you get the picture).  It seems more like allergy symptoms to me, since it’s so much upper airway congestion. His secretions still remain fairly clear and once you get him all suctioned out his lungs sound clear. Not much we can do I guess except to try and dry him up. I called Dr. R’s office after hours on Wednesday to see if they had any suggestions for meds to help him. I got Dr. L – who was a jerk. The first thing he asked me was whether Jack was a full code! Apparently, he felt if I was concerned enough to call a doctor, then it must be serious enough to call 911. Dr. L had no suggestions for helping Jack and he said that kids Jack’s age don’t get allergies and that I should call my pulmonologist. Now you can understand why I prefer to deal only with you. In all fairness to Dr. R, I’m sure he would have handled it differently. I really didn’t see any reason to call Dr. S, mostly because I would not have gotten her anyway, I would have gotten a resident who doesn’t have a clue about Jack.

Sorry to vent. I’m sure we’ll get through this like we always do. Have a great weekend – hope you get to spend it outside of the hospital.

__________

April 10, 2001

Ann,

I can appreciate your frustration about Jack and getting answers. I wish there was a solution to the problem. Believe me, though it is not my area of expertise, if I come across anything that might shed light on Jack, you’ll be the first to know. But, as you must know, if people like Dr. C and the people at Wash U’s neuromuscular disease center are ultimately stumped, there is little that mere mortals like you and I will discover. But it needn’t stop us from trying.

B

__________

May 25, 2001

Dr. M,

I don’t know if the phrenic nerve pacer will help, but I didn’t think it would hurt to ask. I know he doesn’t fit the criteria for the typical user, I’m just looking for ANYTHING that might get him off this $#@!$ vent! The ultimate solution is going to be TIME and I just need to accept that, right? I’m trying!

__________

May 8, 2002

Dr. M,

Just wanted to give you a Jack update – he is doing great. Dr. S increased his tidal volume because he was dropping his sats at night and seemed to have something going on with his right side. It was only supposed to be a temporary situation, but you know Jack, once you give him more support he almost never wants to give it back. Doesn’t look good for him ever getting off the vent, eh? Really wish I could get a prognosis on the kid. I broke down and made an appointment with Dr. C before we leave – don’t know why I don’t like to see her, guess because she never has any good news.

We don’t have any appointments down at Children’s before we leave, they are all at Missouri Baptist. We are planning a “Thank you” party for everyone who has been a part of Jack’s life here in St. Louis – details to follow.

__________

June 2, 2003

Hi B,

Jack is scheduled for his first outpatient procedure in this medically challenged city next Friday. He’s having another bronch by a new ENT that I’m not sure I like yet. He indicated that Jack would be recovered in the PICU – they really overreact to a kid on a vent here.

Of course, my biggest worry is with the anesthesiologist. Jack’s last bronch was done bedside in the PICU by the pulmonologist and he never even increased Jack’s rate after he was sedated. He just gave him 8L of O2 instead. I guess to make sure his numbers looked good. Am I safe in assuming that the anesthesiologist that will be sedating Jack this time will know to increase his rate when he is sedated?

There is a real possibility that I’m bringing Jack to STL this Fall to be seen by all his docs. A lot will depend on what insurance allows. I’ll keep you posted.

By the way, Jack is tolerating a rate of 0 for up to 45 minutes twice a day. He doesn’t even seem to notice. Probably no reason to get too excited, but it’s something.

__________

January 31, 2004

Dr. S,

Have any desire to move to Phoenix? Jack is in desperate need of someone to manage his vent. He hasn’t seen Dr. P since May and his vent settings haven’t been adjusted for over a year. Jack is doing very well all things considered. It is my mission to get one of the hospitals in this city to recruit a pulmonologist who specializes in kids and vents. Although my current mission is planning a conference that will take place in June in St. Louis for families of kids with trachs. SLCH has agreed to be one of the sponsors for the event and we are hoping to get a panel of doctors from the hospital to speak on various topics that are relevant to our kids. Are you available?

On another note, I’d like Jack to see you when we come to St. Louis is June. Do you see any benefit in updating his PFTs and/or checking for any change in the movement of his diaphragm? I don’t want to have a bunch of tests run just to do them, but if you think we can gain some useful information from the tests, I like to have them done. If you’d be willing to adjust his vent settings that would also be good!

__________

July 19, 2005

B,

We are home and Jack is doing great. I think he tolerated the last two weeks better than the rest of us. It was good to see you and I was very happy you were covering the PICU for part of Jack’s stay. I really appreciate you letting us bail from the hospital even though you weren’t 100% comfortable with Jack’s x-ray. He seems to be fine with no signs of a pneumonia. I’m tempted to stop the antibiotic, but I won’t ☺

We’re supposed to come back in 2 months for a repeat bronch. I can’t even think about that right now. There has to be an easier way to get Jack to St. Louis, I just haven’t figured it out yet!

__________

July 19, 2005

Ann,

Glad to hear you made it OK and that Jack is holding up.

Well, you know we would not have released him to just anyone ☺

Take care and keep in touch,

B

__________

August 19, 2005

B,

Dr. C called me today and after six plus years and two muscle biopsies, we can now give a name to Jack’s condition: Congenital Muscular Dystrophy secondary to reduced alpha dystroglycan. Try saying that 3 times fast! I know giving it a name doesn’t change a thing – it just means I can’t be in denial any longer. Most people would think, how in the heck could I be in denial – all you have to do is look at Jack and it’s pretty obvious he’s got some serious issues going on. But, it’s amazing what you don’t see when you don’t want to (not that I saw a perfectly healthy kid who was going to get off the vent and run a marathon some day). I guess he is officially one of “Jerry’s Kids” – a club I’ve tried to avoid like the plague.

Anyway, life goes on. We’ll be back to St. Louis the first week of October. Let me know if you’ll be around on the 5th of October – Jack has a bronch that day.

__________

January 13, 2006

B,

I need help trying to figure out Jack and since Dr. S is still incognito, I thought I’d ask you. I won’t give you the specific details of what’s going on with Jack because I’m not asking you to diagnose him via email. My question – can a kid have pneumonia even if his sats are fine (> 95) and his secretions are not colored or excessive? The only symptoms are a high heart rate and he looks like he’s working to breathe. (Ok, so I gave you a few details).

I’m lost and frustrated and Jack is not a happy camper.

January 13, 2006

Ann,

Speaking hypothetically, yes, one can have pneumonia without those findings. On the other hand, just based on heart rate and increased work of breathing, a pneumonia is not the only thing to consider in a child with a trach (I’m thinking airway obstruction at some level).

B

January 13, 2006

B,

Hypothetically speaking, I’d rather have my toenails ripped off one by one than deal with the doctors in this City. You mention airway obstruction and I’m thinking ENT - we are in big trouble because I’ve pretty much run through all the ENTs here. So, my only option is to wait until the issue becomes acute and then take him to the ER. It’s Friday the 13th and there’s a full moon – the ER is definitely the last place I want to be tonight!

Thanks again – I’ll let you know if it’s anything serious.

__________

February 9, 2006

Ann,

I was invited to a conference of the peds neurologists the other day. The discussion was about predicting outcomes with neurologic disabilities, ethical issues and how to speak to families, etc. AC actually mentioned her experience with you and Jack, without your names of course. But, I knew who she was talking about. You see, Jack (and you) continue to teach us and hopefully make things better - at least in terms of how we communicate.

B

__________

August 1, 2006

B,

I’m too emotional right now and will probably do something stupid like cry. I’ll be fine. It’s just the BS politics of being on the floor. No one can make a decision around here – too many teams involved, but no one will own the problem. If we were in the PICU, the issue just gets resolved.

__________

February 4, 2007

B,

As far as our recent experience at SLCH, I’m sure the dreadfulness of it all was amplified, in my mind, by the absence of you and P. I just hate it when I’m forced to make decisions that I don’t agree with – which was the case with the broviac/vanc. But, it’s done and over with and time to move on.

And, please, stop giving me so much credit for keeping Jack alive. I appreciate your kind words, but let’s be honest, it’s a damn machine keeping Jack alive, not me. I suppose the fact that I know how to keep the machine running helps some.

February 4, 2007

Ann,

You are taking me literally about Jack. Of course the machine is “keeping him alive”. What I’m saying is that I’ve seen a lot of medically fragile kids either just wither and die or not have the kind of life you’ve provided for him – in spite of the machines. And with regards to whether doing all this was the right thing, only your heart can answer that. Watching the latest video clip of him – obviously happy – answers the question in my mind. But it’s your mind and Jack’s mind that matters.

B

__________

April 15, 2008

L,

I want to share a letter with you that I wrote several months ago as part of a first year medical student’s project for her “Reflections on Doctoring” course. I shared the letter with Dr. M and he felt it was worth sharing with the physicians on the Pedsccm.org website. I am passing the link to the letter your way in hopes that you might feel its worth sharing with the physicians in training who you work with. It is my plan, as an extension of this letter, to have pocket stones with the words “kindness”, “care” or “compassion” engraved on them and provide a stone to young physicians to carry in their white coats as a reminder of what’s important when interacting with their patients and patients’ families. Let me know of if you are interested in being part of the pocket stone project.

April 16, 2008

Ann,

I am intrigued by your “Pocket Stone” project and would be very interested in partnering with you. We spend an enormous amount of time trying to teach compassion and professionalism to young physicians.  I have long maintained that there is very little I can add if it wasn’t given to them in their formative years by their parents and yet, I am learning with time that you can teach some old dogs new tricks! Let me know what I can do and how I can help.

This was the perfect email to finally get to at the end of a long 36 hours in the PICU. It helps to remind me that we can all make a difference.

L

__________

October 14, 2008

P,

We just returned from a week of appointments in St. Louis, including a sleep study. The report will go to AC, who will provide the report to me to give to Jack’s pulmonologist here in Phoenix. I’d like to provide a copy of the report to you and get your thoughts. Jack had to be admitted for the sleep study and we saw Dr. S. He asked why I don’t see the pulmonologist at Phoenix Children’s (apparently he knows Dr. P and the others in the group). When I explained my reasons why, his comment was that I’ve just been “spoiled” by you. Very true! (and I sure miss having an advocate like you on my side).

Jack is doing well, all our appointments went well in St. Louis and all things considered …. Life is good!

October 15, 2009

Ann,

It was an honor to "spoil" you and Jack.

P

__________

March 3, 2009

A,

I’ll be in St. Louis next week for a few days. Are you available to meet for lunch?

__________

June 18, 2009

P,

I wanted to let you know that I’ve become involved in a newly formed organization called Cure CMD. One of the things Cure CMD is trying to do is put together a list of “top docs” for kids with CMD as part of their standard of care initiative. I was asked to recommend a pulmonologist to add to the SOC effort. Of course, you are at the top of my list. I just wanted to give you a heads up in case you should happen to receive some information from Cure CMD.

__________

September 8, 2009

Ann,

Just in case you haven’t heard, I am on the CMD standard of care committee. I am the US pulmonary group leader. Thank you for mentioning my name. Didn’t you tell me that they had identified what form of CMD Jack has? If so, could you remind me which one? It will help me put some of the information into perspective with the other CMD’s we are working on. Hope all is well with your family.

P

Prelude to the Birthday

Jack will celebrate his 11th birthday on Wednesday. As I usually do around Jack's birthday, I find myself thinking about where we started, where we've been and where we are today.  As many of you know, through the years I've written down my thoughts on Jack's birthday and have shared them with family and friends via email and on this blog.  As I ponder the last eleven years, I find myself thinking about how little Jack has changed, and how much I have changed over the years.  In terms of progress, Jack has made none in eleven years.  Yet, he remains the same easy going, content, sweet little boy today that he was the day he left the PICU at the age of seven months.  I, on the other hand, have morphed from a maniac taskmaster whose sole focus was to make this all go away into someone who is at peace with Jack's diagnosis.  More significantly, I'm learning to take the experiences and knowledge gained from living this very crappy hand that Jack and I (and the rest of our family) have been dealt and directing it in a positive light to try and make a small difference in this world.  Jack has changed me profoundly and together we are working to leave his faint footprint in the sands of time.

In thinking about how much I've changed over the last eleven years, I decided to pull out my stack of emails that I've exchanged with Jack's doctors since June 1999. There are literally hundreds of emails and oh, how they tell my story.  I'm somewhat appalled at the tone I took with Jack's doctors in the beginning - I sure was bossy!  I'm surprised they even stuck with me all these years given the attitude I had in the beginning.  On Jack's birthday, I will share with you some of the emails (mostly mine and a few by Jack's docs) that have been written over the last eleven years.  I think they do a good job of reflecting how my attitude and my focus changes and how much I "lighten up" with each passing year.  It was really hard for me to pick which emails to share.  I could have shared many more, but it would have made for a very, very long post (as opposed to only a very long post).  I'm not sure if anyone will even find the emails remotely interesting, but I'm doing this for myself more than anything.  Someday, I hope to write a book that is a compilation of all the emails exchanged between myself and Jack's doctors . . . when the time is right (and with their permission, of course).

See you back here Wednesday.  

Happy Halloween

Little Big Man

7 going on 27

(in his dad's shirt)

✤✤✤✤✤✤✤✤✤✤✤✤✤✤✤✤✤✤

It's been another uneventful week. Heck, it's been an uneventful year for the most part.   Well, I suppose it depends on what you mean by uneventful. It's actually been quite eventful  --- all in a good way.  I've had the opportunity to travel to St. Louis, New Jersey, Colorado, and New York and enjoyed several weekend visits with out-of-town friends.  Definitely not my typical schedule to say the least.  I'm not sure what I did to deserve such a good year, but I'm just going to accept it, appreciate it and try not to read between any imaginary lines.

Jack's doing well, although he's been a little more "junkier" than usual (my fellow trach moms understand what I'm talking about).  Even after all these years, I'm still not a big fan of snot, especially snot that flows from a hole in the neck. But, he seems fine.  So far, we are all fine (translation: no H1N1).  I asked Eric if there were a lot of kids out in his class and he said no.  I'm still waiting to get "hit".

Next week is Jack's 11th birthday.  I haven't been inspired to write anything profound for his special day ... as of yet.  There are some years where I have much to say and there have been a few years where I feel like I've said it all and there's nothing more to add.  Jack's birthdays are always emotional for me, in ways that I can articulate and in ways I can't. Regardless, all of Jack's birthdays are special.

We don't have any big plans for the Halloween weekend. Poor Eric, being the youngest, he gets totally gypped on most the childhood traditions.  Of course, he thinks he's an adult anyway, so I don't know that he feels like he's missing out on anything.  He does have a costume, so we might head over to my sister's house and see if we can con my nephew (who is in high school) into a little trick-or-treating.  Jack will stay home with his dad and help hand out candy ... or something like that.

Have a fabulous weekend and don't eat too much candy!

Sedona, AZ

I had the privilege of meeting another "trach mom" this weekend. Sarah and I "met" on the tracheostomy.com message board several years ago. Sarah lives in California and she came to Phoenix for the weekend. We drove up to Sedona - which is by far the prettiest part of Arizona. We went on a six mile (roundtrip) hike through Oak Creek Canyon. Even though I've spent most my life in AZ, I've never hiked Oak Creek before - it was amazing. I've definitely found a new hiking place! Here are some pictures from our day in Sedona.

Chapel of the Holy Cross

Sedona is known as "Red Rock Country"

Pictures from our hike through Oak Creek Canyon

From the road ... heading home

I just thought this was fun!

Somehow, I managed to delete the only two pictures I had of me and Sarah on my camera (it was a great picture of Sarah and a lousy picture of me ... but it wasn't intentional, I swear.)  It was a fun weekend. I hope Sarah feels rested and refreshed - she has a lot on her plate and was definitely due for some respite.

Have a great week everyone!

(sorry this is a repeat for all those who follow FB)

A Hilary Project

Hilary shared with us her first animation project, so I thought I'd share it with you.  It's a "cut-out" project - which is self-explanatory when you watch the 10 second clip.  Every movement involved moving the position of the pieces, taking a picture, moving the pieces, taking a picture, etc. and then putting it all together.  She said it was a lot of work and took a long time, but she had fun.  I think she did a great job!

Make video montages at www.OneTrueMedia.com

Hilary also said it's starting to get cold and she's having to wear lots of layers - a new experience for an Arizona girl (considering it was 102 degrees here last weekend).  Hilary says she's looking forward to snow.  I'm pretty sure come February or March, she'll be sick of that snow she thinks she is looking forward to. She's anxious to come home for Thanksgiving though - she's tired of cafeteria food!

The kids are back in school after being on Fall break for two weeks.  I'm sure it won't be long before we are "hit" with H1N1.  We managed to get through last year with no flu for any of us. I'm not optimistic that we'll  have the same luck this year.  Part of me just wants to get the dang thing and get it over with!

As of now .... all is well. Thanks for checking in my friends.

Happy Saturday

Have a great weekend and may the "pigs" stay away!  To all my friends who've already been slopped on, may you feel better soon.

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"How people treat you is their karma;
 how you react is yours."

Diagnosis and DNA

There was a time in this journey that I wanted -- no, needed -- to know exactly what Jack's diagnosis was. I figured if I could get a diagnosis, then I could set out finding a way to treat (aka: fix) it. I spent hours upon hours on the computer researching and reading PubMed abstracts and articles.  I took my information and pressed Jack's doctors with my theories of what could be wrong with him. I was bound and determined to find a name for Jack's condition, provided it didn't contain the words "muscular dystrophy". There was just no way my child had muscular dystrophy.

Fast forward to July 2005 and a week of appointments in St. Louis that included a bronchoscopy and eye surgery on the schedule.  For some unknown reason the thought occurred to me, and I asked Jack's neurologist if she thought it might be a good idea to get another muscle biopsy from Jack while he was under anesthesia for his other surgeries. (Jack's first muscle biopsy was done when he was 5 months old.)  She jumped at my "offer" and the procedure was added to the list.  Incidentally, you'd never get a Children's Hospital in this City to coordinate the schedules of the ENT, the ophthalomologist and the neurosurgeon to perform their respective procedures on the same day, in the same OR, at approximately the same time, on the same kid!

A few months after we returned home, I heard from Jack's neurologist. Jack's muscle showed reduced alpha dystroglycan and he now had a diagnosis of "congenital muscular dystrophy secondary to reduced alpha dystroglycan".  There was no more denying it - Jack had muscular dystrophy.

In many ways, Jack's diagnosis finally allowed me to "let go".  People with muscular dystrophy don't get better (at least not yet).  There is absolutely nothing that can be done to get Jack walking, talking, eating and breathing on his own.  Jack's muscles simply won't allow it.  It was time to cut myself and Jack some slack and stop setting and trying to reach goals that were not, and never would be, attainable.

The next few years were preoccupied with Jack's spinal fusion surgery and recovery and just dealing with every day life.  With each passing year, I found it a little less difficult (but far from easy) to tell people that my son has muscular dystrophy.  Although, signing on with MDA as one of Jerry's kids is still something I have not done and likely never will.

Fast forward to October 2008 and another trip out to see Jack's team of doctors at St. Louis Children's Hospital.  During our visit with Jack's neurologist she told me about several new DNA sequence tests that could be done at the University of Iowa which could determine if Jack had one of the four known genetic mutations for Jack's type of muscular dystrophy.  It was also the first time that I heard the truly "official" name of Jack's type of muscular dystrophy -- Dystroglycanopathy congenital muscular dystrophy.

Given the severity of Jack's disease, I was fairly certain that Jack wouldn't test positive (ie: he wouldn't have the DNA sequencing) for any of these genetic mutations.  Because the testing is so expensive, they initially did DNA sequencing for only two of the genes: POMT1 and POMT2.  They came back normal.  About a month ago, they tested for the other two genes: FKRP and POMGNT1. When I was in New York visiting Hilary, I received an email from Jack's neurologist that provided in part:

"it should not shock you that Jack's POMGNT1 and FKRP sequencing came back normal.  I have a rule that parents are almost always right about their children and you guessed this."

She went on to tell me that all the tests comment that "it should be realized that DNA sequence tests do not detect all types of disease causing mutations.  Nucleotide variations in non-protein coding regions as well as whole or partial gene deletions and duplications may not be detected by this method."

During Jack's short lifetime, we've gone from an initial muscle biopsy finding of "myopathy, active chronic", to a finding of reduced alpha dystroglycan, to an official diagnosis of dystroglycanopathy congenital muscular dystrophy, to DNA sequencing to rule out four known genetic mutations for dystroglycanopathy CMD.  Amazing!

Jack's neurologist assured me that she would talk with one of the top researchers in the field of muscular dystrophy (Dr. Kevin Campbell at the University of Iowa) about Jack's lack of genetic diagnosis and discuss other research avenues.  I assured her that if Jack has taught me anything, it's that I won't get most my answers this side of heaven.

As I sit here today,  I have my much sought diagnosis and I'm certain that I could find many articles on PubMed discussing Jack's specific disease if I felt like reading up on it.  But the fact is, you lost me back in 2005 when I first heard the words "muscular dystrophy".  While I appreciate the fact that Jack's neurologist is being persistent in trying to find out as much as she can about Jack given today's technology, I'm no longer interested in getting all the information.  I really don't need to know what Jack's specific genetic mutation is.  It doesn't change a thing for Jack.  However, I realize in the big picture, it's important to study Jack in order to help others with his disease in the future.  So, to the extent Jack's brilliant neurologist and the researchers in Iowa (and elsewhere) want to continue to unravel the mystery of Jack, we will support them.

After all, my kid has muscular dystrophy, whether I like it or not.

Anybody Home?

Yes, we are home and all is well. I know I haven't updated in a while and it's simply because I don't have anything to update about. After the last two weekends of travel (which I absolutely enjoyed!) I'm content to just be hanging out at home doing a whole lot of nothing. Well, actually, I'm doing a lot more than a lot of nothing, but it's certainly nothing exciting (it's fun stuff like cleaning bathrooms, scrubbing floors, laundry, dusting, more laundry . . . )

As I sit here today, life is GOOD.  No sick kids, no complaints with nursing agencies, DMEs or insurance companies.  I've had some much needed time away, it was great to see Hilary, the other kids are on Fall break and things are going well.  I know better than to spend too much time worrying about when all good things will to come to an end because then I just end up missing out on enjoying all the good things.

So, enjoy I will.

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A picture Eric drew ... one thing in particular stood out to me. Any guesses?

Apparently, after Jack dies ... according to Eric, he's still stuck in his wheelchair! I think Eric needs some RE (religious education) classes pronto! Hey Jenny, do you teach correspondence courses? :)

Have a great week everyone.

Carpe Diem!

Weekend in Rochester

Well, I had to break down and get a YouTube account because there is no other way to share the videos I create using the Mac on Blogger other than by YouTube. Frustrating! I took a lot of pictures this weekend with Hilary and it's easier to share via a slide show than uploading all the pics. I thought it would be fun to spice it up with a little Vivaldi. Enjoy!

(Unfortunately, you lose a lot of the vibrancy in the pictures when you upload them to a slideshow/video. Hopefully, you get a good idea of all the reds and oranges that are everywhere - it's spectacular).

It was a great weekend and I think Hilary enjoyed seeing us! She is definitely happy here and seems to really be enjoying her classes. I don't think she's feeling too homesick - which is a good thing, I guess.

I'm anxious to get home and stay home for awhile. All this traveling is exhausting and a pain in my rear - literally. I'll share more on that later.

On The Road Again

Mary and I fly out to New York tomorrow morning to spend the weekend with Hilary.  I'm excited to see Hilary and to get to spend another weekend enjoying beautiful Fall weather. We plan to visit Niagara Falls while we are there too.

There's not much to report on here at the Ranch.  All is well ...  everyone is healthy (knock on wood) and happy.  The kids have a 2 1/2 week Fall break starting next week, which should help cut down on the risk of getting sick for awhile.

Between Blogger and the Mac, I'm so frustrated right now. I wanted to share a video I made using iMovie (those of you who are on Facebook have already seen it). But, Blogger fails every time I try to upload it and iMovie won't let me upload the movie to OneTrueMedia.  Arg! I purchased a program that will allow me to legally convert the iMovie to a format that I can upload to OneTrueMedia, but after downloading the program, I can't find it on the damn Mac! Double Arg!  I could upload the movie to YouTube, but I'm not a big fan of YouTube.  I think it's just too big and too much exposure.

So there you go, I've got N-O-T-H-I-N-G for you.

I'll update from New York - with pictures of course.

As always, thank you for checking in.

Weekend Getaway

I had the privilege of spending this last weekend in Denver/Estes Park, Colorado with two very special friends. We found each other through the tracheostomy.com message board and our blogs and have been in touch via phone, email and blogs for the last year or so.  We finally decided it was time to meet each other in person, so Karen (from Maryland) and I headed to Denver to spend this past weekend with Jen.  Unfortunately, Jen was very sick and wasn't able to get away with us to Estes Park.  But, it was a nice weekend spending time with Karen and just relaxing and taking in the Fall colors of the Colorado Rockies.  The weather was perfect!

Jen lent us her car for the drive to Estes Park. When we returned her car on Sunday, we were able to spend some time with Jen.  Faith was sick too, so I only got a short peek of her, but she did flash me a big, beautiful smile before she fell asleep.  We also got to meet Jen's husband and Faith's daddy, Brian.  It was a great weekend and we are sorry that Jen was too sick to spend it with us, but one can never plan when they are going to get sick!

Me, Jen and Karen
(Jen wore a mask the whole time except for this picture - she was so worried she would get us sick).

And this picture is for Karen .... we finally got the freaking rock cracked.  Eric was disappointed that there wasn't a precious stone inside that would earn him millions! :)

(this was a geode I brought Eric back from Colorado)

It's back to the grindstone this week, but it's a short week for me.  Mary and I leave on Friday for Rochester, NY to visit Hilary for the weekend.  For someone who hates to fly, I'm doing a heck of lot of it lately.  All I can think of when I'm on the plane is "H1N1"  Eeekkk!!

Happy Wednesday!

Nothing like starting your day off with waffles, chocolate milk and Diary of a Wimpy Kid. It doesn't get any better than that!

Have a fabulous WednesDAY!

Fall has come to the Jungle

Fall has not arrived here in Arizona, but it has made its way to a certain jungle located in these parts.  It's still 100 degrees here in the desert, so Fall is no where near showing its face. But, you'll get no complaints from me - it's the price we pay for the beautiful "Winters" we get while most of the country is dealing with ice, snow and windchill.

Although, I have to admit ... I love the Fall (and the Starbucks Pumpkin Lattes that come along with it!) So, I thought it would be fun to bring a little Fall to Jack's room.

I'll get to experience Fall the next two weekends, as I'll be out of town visiting friends and Hilary in much cooler parts of the country. But, this is about as much Fall as Jack will see this year. Pathetic, I know.

Have a great week everyone.

Time and Experience

As a shuffle through a week's worth of mail on the kitchen counter, I find scattered in with the junk mail and bills an envelope with Jack's name on it.  I've learned not to throw anything away without opening it first because everything looks like junk mail these days.  Sure enough, the letter is from a collection agency.  My friends at Apria sent us to collections for 21 freaking dollars! This company that collects at least $3000 a month from us for Jack's equipment and supplies, sends us to collections for $21. Ri.di.cu.lous!

But that's not the point of this post.

Five years ago a letter from a collection agency would have enraged me.  My "fight or flight" response would have kicked into high gear and my response would have been 110% fight.  I would have picked up the phone, cursing the entire time I was on hold and then likely yelled at the person on the other end who had the audacity to call me "Ma'am". (You know that condescending tone I'm referring to.)  I would have furiously pounded out a letter to Apria threatening legal action if they didn't remove my account from collections. I would have stewed all night about the injustice of it all, and then rushed into the office to fax the letter off to Apria first thing in the morning.

I would have done that . . . five years ago.

Now, I simply tuck the letter into my "Personal" folder that I shuffle back and forth between home and work every day.  My folder full of stuff that requires attention whenever I can find a few spare minutes here and there at work to deal with it. Today -- a good two weeks after it arrived in the mail -- I pulled out the letter.  I called Apria's billing department.  I calmly explained to them that we have Medicaid as our secondary insurance and that not only do we not owe the $21, it's against the law to bill us for it.  I calmly explained that for reasons I don't understand, they (Apria) unilaterally changed the party they bill as our secondary insurance.  I calmly explained that we've been getting our respiratory equipment from them for over seven years and that we've always had Medicaid as our secondary, that they have always been paid by our Medicaid provider until recently when someone at Apria decided to change who they were billing as our secondary insurance.  Based on the clicking of the keyboard I was hearing through the phone, the person at the other end was furiously typing his notes as I was giving him my spiel.  At this point, my call had already been escalated to the next level. (Which likely means nothing more than that the person answering the phone didn't want to deal with me, so he put me on hold hoping the call would roll over to the person sitting next to him.)  I provided contact information for the person at the agency they are supposed to bill as our secondary, and I was assured that the matter would be handled expeditiously.  I calmly ended the call with "I won't hold my breath, but thank you for your help today".

Now what to do about the collection agency threatening nothing short of imprisonment if I don't cough up the $21?  (Okay, so that's a bit of an exaggeration.) As I look at the letter, I realize it's addressed to Jack.  I remember that the monthly billing statements from Apria are addressed to Jack, and when I call Apria's billing department, they ask for Jack's date of birth.  Everything is tied to Jack.  Fact is, Jack doesn't give a rip about his credit score.  And, while I recognize that I'm personally liable for my minor child's medical bills, I'm not going to sweat over the $21 allegedly owed to Apria or the collection letter.  I calmly put the letter back into the folder and cross it off my list of things to deal with.

Done.  Calmly.   No ranting, no raving, no high blood pressure or spitting nails.  A simple phone call, a simple explanation and the ability to let.it.go after that.

It's amazing what time and experience gets you.  You learn that "it is what it is" and all the screaming and cursing in the world won't change it.  You learn that you are so not in control, and you learn not to sweat the small stuff -- and the majority of it is small stuff.

I've lived so much of the last (almost) eleven years in a constant state of urgency and anger, with a "my way or the highway" attitude. (Well, let's be honest, I've probably lived most of my life that way.) And certainly, I still have my moments and there are still those times when my "fight" response kicks in.

However, time and experience have tempered the anger and have brought to me patience, confidence and perspective.  All things that make for a much better -- and healthier -- way to approach each day.

And if you don't believe me .... just ask the guy at Apria.

Necklaces Are Now Available For Purchase

The Willow Tree necklaces are now available for purchase. (See sidebar)  The new website for The Willow Tree Foundation is not ready yet, but I ordered my first shipment of necklaces and keychains and I wanted to make them available for purchase now.  You can purchase using PayPal or if you want to pay by check, please make it payable to: The Willow Tree Foundation and send it to P.O. Box 13145, Chandler, AZ 85248.  If you are paying by check, you can get the price of the piece by clicking on the "Buy Now" button.  I only have a few necklaces on hand, so the first to order will get theirs the quickest.  I will order more from the designers as orders come in, but the turn around time will, obviously, be longer once I sell those I have on hand.  The second necklace is designed by Kristen's Custom Creations  and it's a beautiful necklace too.  Kristen's design can also be put on a bracelet or key chain - if you want one of those, email me and I'll get it ordered.  Selling items via PayPal is new to me, so I have no idea how this will work, but I'm told it's easy and painless. Just make sure I have your email in case I have to contact you.

Thank you everyone!

He Doesn't Want To Live On The Moon

Tonight Jack was watching one of his Sesame Street videos. Yes, I realize that a ten year old should be well beyond watching Sesame Street, but he really likes the music and singing.  Except for one song, apparently.  I was buzzing around Jack's room, getting him ready for bed, giving him his last can of food for the day and enjoying the singing right along with Jack. Then, the song "I Don't Want to Live on The Moon" comes on and I glance over and see this face:

Apparently, he doesn't want to live on the moon!  You can't help but wonder how much Jack really "gets" when you consider that he has never been able to communicate to us what is going on in that head of his.  Jack's body allows for very little self expression.  Even his ability to smile has been progressively affected because of the weakness in his facial muscles.  Yet, every once in a while he reacts so deeply to what he hears, and it's usually when he is listening to a song.  I'll never know what it was in the song "I Don't Want To Live On The Moon" that triggered the reaction I captured tonight, but these random moments of expression are a much needed reminder that a wise soul, with feelings and emotions, likes and dislikes, and a gentle spirit is very much alive in that silent and paralyzed body of Jack's.  I often wonder about the "why" of it all.  But, Jack continues to remind me that he is very much here and he understands a lot more than most people will ever give him credit for.

Here's the song, in case you want to hear it.

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On a Hilary note  - she sent me a text today that went something like this "Because I'm not really fitting into my writing class, all the students just sign. It's likely I'll go into a new section. I think it's good for me, I just want to talk with others. Ok".

I can honestly say that I didn't think I'd ever see the day when Hilary would say that she "just wants to talk".  It makes me so happy that she's finally in a place where she is comfortable and willing to talk without worrying about what others will think.  

What a day.  All of it good.

Labor Day

Hope you aren't checking in for that certain "blog thought" I promised.  I didn't take get the opportunity to work on it this weekend.  It would have required me to sit down at my computer and think  . . . and labor.  It was Labor Day weekend after all, which I believe means that we are supposed to take a break from laboring, right?  I'll get it finished eventually, I promise.

* * * * * * * * * * 

It's amazing how one particular seven year old can turn my entire house into his playroom.  It's insane, actually.  I miss having a basement.  When we lived in St. Louis, we confined the girls and all their thousands of pieces of Barbie paraphernalia to the basement. I have no place to confine Eric and all his crap stuff.  For example, today my family room was invaded by army men.

Eric somehow convinced Mark that he needed these army men because he certainly doesn't have enough toys to play with already. Or maybe, Eric wanted a reminder of his Uncle who is in the Army (Ohio National Guard) and who will be leaving shortly for Iraq for his second year long tour.  Except that Eric really has no clue who his Uncle is because he lives in Ohio and we don't see him too often. So, that's probably not it.

Whatever the reason, Eric managed to entertain himself for several hours with these guys, so I guess it was worth it.  They've all been neatly thrown packed away in their container for the night.  

* * * * * * * * * * 

I promised Jack a trip out of his room this weekend.  Poor kid rarely gets out of his room, let alone his house (and yes, this fact is accompanied by much guilt).  We went for a walk around sunset, with camera in hand ... of course.

It was a typical, beautiful Arizona sunset.  And, just in case you are wondering, these pictures are of a neighborhood within walking distance from where we live.  We do not live in this neighborhood.  We live on the other side of the tracks street. But, it's nice to pretend on occasion. :)

* * * * * * * * * *

And for my friend Dana and anyone else who is wondering - Hilary is doing well.  She doesn't seem to be missing us at all! Her first official day of school was today (what's up with that!) She is beyond thrilled because she is on track to get into the school of film and animation next year (which is highly competitive) and she will spend this year taking classes to prepare her for the program.  I've already made reservations for Mary and I to fly out to see her the first weekend in October because that's her birthday.  I've also  booked her flight home for Thanksgiving.  I should own stock in Southwest Airlines with the amount of money I will be giving them over the next four years!

As always, thanks for checking in.  Have a fabulous rest of the week!

* * * * * * * * * * 

I already posted this on FB, but I'll share it again here because it made me laugh out loud:

May those who love us, love us; and those who don't love us, may God turn their hearts; and if He doesn't turn their hearts, may He turn their ankles so we'll know them by their limping.
(Irish Blessing)

Weekend Warrior

Just a typical Saturday morning in the Schrooten Jungle!

Chugging Along

I suck. I promised more regular updates and I've not come through.  For those who continue to check in on us, I apologize.  As a blog stalker myself, I know how disappointing it is to check in for updates and see the same old post day after day.

I've been working on a "blog thought" the last few days, but I'm struggling to finish it.  Ironic, since it's about my "struggles".  In an effort to increase my hours of beauty sleep (because God knows I could use it), I'm making a real effort to get to bed before 11pm on week nights, which really cuts into my blogging time.  I promise a post worth reading (well, I suppose you'll have to decide that) by the end of the weekend.

Life continues to uneventfully chug along.  You know, same $#$^, different day.  Not that I'm complaining, because I'm not.

Enjoy your Labor Day weekend and think of Jack if you happen to tune in to the Jerry Lewis telethon.

Thanks for checking in.  I really mean that!

It's 10:45pm .... 15 minutes before I turn into a pumpkin! Gotta go :)

Have a Happy Week

If you want others to be happy, practice compassion. If you want to be happy, practice compassion.

Dalai Lama

Have a HAPPY (and compassionate) WEEK my friends!

More Good News to Share

I received an email yesterday from the person at Johns Hopkins who has been part of the team implementing the "TouchStones of Compassionate Care" Program. His email provided, in part:

This past year we made a habit of handing out the stones and a copy of your "Dear Future Physician" letter to each physician resident that served a rotation in our pediatric intensive care. They were a hit! Folks really seemed to appreciate the thought that went into your letter and in the gift you made available. . . . It was so successful, in fact, we were wondering if there is anyway we could receive another supply of stones to be able to offer to future residents as they come to the pediatric intensive care portion of their training.

How totally cool is that! It just made my day. To know that Jack and I really can made a difference almost makes this journey worth it. (well, that might be pushing it.) So, where do I go from here? I get more stones to Johns Hopkins to start with. And then, I start contacting other Childrens Hospitals around the country and share with them the success of the program at Hopkins. After talking with the PICU doc who agreed to be the first to try the program (who was at Hopkins when the program was started, but who is now at Vanderbilt Children's), we both think that pediatric residencies are the best venue for this project because these physicians have the clinical experience needed to truly understand the impact of the program. I also need to find a way to raise money to support this program - the stones aren't cheap! Somehow, I'll get it done.

This has been a good week!

Sneak Peek

There are some new and exciting things going on with The Willow Tree Foundation. If you recall, I mentioned many months ago that I was working on a new website for the Foundation. That's still in the works, but we are making progress. Someone is doing it pro-bono for me, so I can't be too pushy. Those of you who submitted "Day in the Life" stories, don't worry I haven't forgotten you and I still have your stories tucked away. And those of you who promised stories but haven't turned them in yet, there's still time. I don't know when the new website will be ready to unveil, but hopefully, not in the too distant future.

The other fun news is that several months ago I asked Lisa Leonard if she would design a necklace for The Willow Tree Foundation. She and I worked together to come up with this necklace:

The Foundation will purchase the necklace from Lisa at wholesale and then we'll sell it with all profits going to the Foundation. I'm not sure yet how much I'm going to charge for the necklace because I want to make it as affordable as possible. So, tell me .... what do you think? Would you buy it? It's sterling silver. You can get an idea of the quality of Lisa's work by looking at her pieces on her website. I have several of her necklaces and I love them.

Here is Mary modeling the necklace for you:

The necklace is not yet available for sale - but soon. I've also got another designer working on a different necklace and I hope to have two choices available for sale.

Tell me what you think!

Just Another Saturday

Actually, it's not just another Saturday. My daughter is 2000 miles away, settling into her new life. But, from what I hear ... so far, so good. Hilary's roommate doesn't arrive for another week - she isn't attending the special orientation that Hilary and most of the deaf/hoh kids are attending (although Hilary's roommate is deaf and is a cochlear implant user). Mark told me that it's a good thing they know some sign language because most the staff they've encountered so far are signers. I guess there was a reason he went instead of me - Mark has always been more adept at (and comfortable with) signing than I am.

Hilary's new "home" for the next nine months

high sleeping quarters

"Toto, I don't think we are in Arizona anymore"

(the view from her room)

All moved in

Computer is up and running .... life is good

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As Jack and I were enjoying his morning routine, I decided to pull out my old camera (thus the reason it's so grainy) and take a video of clip to share what a typical Saturday morning is like in our house. The only thing missing is Eric, he's usually buzzing around the room like a gnat. (I'm not sure where he was when this was taken.)

Photo and video editing at www.OneTrueMedia.com

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Sorry for the delay between posts. You can blame it on Facebook. It's quicker, easier and more fun to update! I'll try to be better and make it worth your time to click on over to Jack's blog. Thanks for checking in and have a great day!

The Lift

I've been trying my best to get Jack out of his room and out of the house on the weekends. I usually take him for walks around the neighborhood in the evening. Putting Jack in his wheelchair is no longer something I can (safely) do on my own. Jack is a two person lift and, to be honest, we shouldn't be lifting him at all. Instead, we should be using his lift - the lift our insurance paid good money to have installed over Jack's bed. I've been good and have used the lift two weekends in a row. It really is a pain to use and takes twice as long, but I keep telling myself, if I hurt my back, the pain will be much more real.

I did a photo shoot of the whole process of getting Jack from his chair to his bed.

Here is the ceiling mounted lift. When Jack got his room makeover, they painted the lift blue to match the sky painted on the ceiling. Very cute!



So there you go, everything you wanted to know (or not) about how we use the lift to get Jack in and out of bed.

~~~~~~~~~~~~~~~~

I just have to share with you another Eric classic. One of the papers I pulled out of his backpack this weekend was a "Bio Poetry". The kids had to decide who they were going to write about and then fill in the blanks. Eric chose himself and, for the most part, I thought it was cute, but nothing remarkable .... that is until I got to his "Closing Line" (the italics words are Eric's words):

Eric.

Funny. Caring. Nice.

Wishing to have a dog.

Dreams of getting rich.

Wants to walk on the moon.

Who wonders if dad has a suprise waiting for him at the end of class.

Who fears his nightmares.

Who likes his dog.

Who believes in ghosts.

Who loves tarantula.

Who plans some inventions.

and the Closing Line:

When he dies he wants to be creamated.

He clearly took the "Closing Line" literally! (love how he spelled it). I have no idea where he comes up with this stuff. We certainly don't sit around and talk about how we are going to dispose of our bodies when we die. I can only imagine what he teacher thought when she read that.

Here's a picture of my little goof with his giant gummy snake. Ahhh . . . . boys!

May your Monday be fantastic and each day thereafter equally as good.

Happy Friday

“Life's disappointments are harder to take when you don't know any swear words.”

(I couldn't agree more)

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Fun Photos:

My friend Marcie introduced me to Picnik - a great photo-shopping website. I'm having a lot of fun doing some creative things with my pictures. (thanks for the tip, Marcie.)

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Have a fabulous weekend everyone!

Checking In

I was looking through all my pictures on the computer and found this one of me and Jack from a couple of years ago. I like it. We both look happy (or we're putting on a really good front). Jack's smiles aren't quite as bright these days. But . . . his spirit remains as bright as ever!

We finally got Kristi back today. She's been out for over a week and while we've had a good replacement, it's just not the same. I don't like having strangers in my house. Unfortunately, I'm going to have to learn to adjust because nursing changes are on the horizon. The way the agency has things set up now, we will soon have four different nurses in our house every week. Four different ways of doing things. I'm sure it's hard on Jack too --having strangers in his face, touching his body and providing his care. But alas, I should not complain because the alternative -- no nursing care -- is not a viable option either.

So, onward we march doing our best to make this extraordinary life we lead as ordinary as possible.

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Only two weeks into the school year and Eric is already making waves. He's the only kid in the class who somehow lost his writing journal that was sent home last week. He just can't seem to remember ever getting one. He also received his first "storming" report today for goofing off and not following directions. I'm guessing this is going to be another very long school year. Oh well, he certainly keeps life interesting.

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We're getting down to the wire for Hilary's departure. I'll be shipping some of her things this weekend and she and Mark leave next Friday (the 21st). Only one of us can go because of Jack and, Hilary picked her Dad. She said he's more fun. Sadly, I can't disagree. I forgot how to have fun a long time ago (around the time I found out my first child was born deaf). It just bums me out that we can't both go. I'll probably take a trip out in October to visit her, providing she wants to see her "un-fun" mom.

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That's about all I've got from the Schrooten Ranch. Have a great day and thanks for stopping by.

Superb Sunday

Weekends are a bit like rainbows; they look good from a distance but disappear when you get up close to them.

~John Shirley


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I decided it was time for a change of attitude and to get that, I needed a change of scenery. So, I forced myself to get up bright and early this morning and headed out for a hike on one of the many local hiking trails we have here in Phoenix. I used to hike on a regular basis a few years ago, but got away from it the year of Jack's spinal fusion surgery. It's amazing how much more productive your day is when it starts out with scenery like this:

Jack and I finished off the day with a nice long walk through the neighborhood while the rest of the family went out for dinner.

Today was a good day. I feel renewed and ready to tackle whatever this week throws my way with a positive attitude. Wishing you all a super week too.