This is Life Deal With It

Who doesn't like getting new stuff.  Me too - usually.  The new piece of equipment that arrived yesterday - a suctioning machine - not so thrilled.  We put it off for as long as possible and will use it, for Shannie, only - only when ab-so-lute-ly necessary.  That being said, it'll be a good piece of equipment and really help her out and that's all the detail I'm gonna say because - gross.

Years ago one of the girls we provided foster care for had a tracheotomy.  Of all the medical issues we deal with ones involving the "M" word - mucus - are the most difficult for me.  I have a strong gag reflex sometimes just thinking about it.  Handling that trach was quite the challenge for me.  Christian's trach, thankfully, was removed long before he arrived here.  Shannie just needs a little help when she has a serious coughing spell - that's manageable.

I was determined from a very young age to be a nurse, or maybe even a doctor until.  One day when I was a Candy Striper in my cute pink and white striped jumper - those were the days - I had to hold the plastic dish for a guy coughing and spitting.  I just about lost it there and then.  I walked out of that room and thought - nope - not for me.  I laugh about it now thinking about all the medically gross stuff we've dealt with since I was fourteen - if I'd had any idea I might have pushed through and gotten a medical degree from a reputable institution, but no, just the college of - This is Life Deal With It  - for me.

Once we had Shannie in a local hospital for pneumonia and she needed to be fed.  Mark gets the G-tube out and the nurse's eyes bugged out.  From her reaction it appeared she'd never actually used a G-tube.  This didn't really provide the confidence in that particular hospital's ability to handle our girl and we were ever so grateful when they transferred her to the hospital where we were generally admitted.   I think they were happy to see us go as well.  This is just about as much nursing as I want to handle.  With every new piece of equipment or medical issue I learn and adjust - sometimes not very cooperatively, but what must be done must be done.

One last thing - for some reason they didn't send the tip attachment that would actually go into her mouth, so online we went looking for one.  A package of 5 - $1.06 each - great deal.  Put it in my basket - the total was $139. 04!  Whaaaaaaat?  Yup that was shipping and handling - are you kidding me?  We tried to circumvent the whole rigamarole of a doctor's order etc. etc. and just paid for the machine ourselves - $147 total, by the way.  Now Mark will have to spend a morning on the phone getting a doctor's order for our medical supply company so we can get the little attachment.  Is it any wonder people dealing with medical issues are overwhelmed, not to mention broke?  But, as I said, this is life - so deal with it we will.

Medicaid from Inside the System

Our first job after college as "houseparents" in a group home convinced us that we wanted to adopt a special needs child.  The emotional stability the adults who had spent most of their time with their families possessed compared to the adults who had grown up in the institution was very obvious.  Thankfully we live in a state where we do not place children or adults in institutions and haven't since the 90's.  This is not the case nation wide and one of the many reasons I love Minnesota.

Much of this deinstitutionalization was accomplished due to Medicaid waivers for the disabled which is in grave danger of huge cuts as well as the end to the current right to coverage, i.e. entitlement, due to disability depending, in part, on the outcome of the next election.  In 1998 nearly 44% of those on Medicaid were the disabled and blind. 
The $800 billion in cuts, that has been proposed by one candidate, is a frightening prospective for parents like us.

 Our family is incredibly fortunate to have an amazing support system in place, which is not the case for the many parents who are raising disabled children.   Our support system is in place, partly,  due to the financial support we have at our disposal.  If that is taken away, it's likely we'd lose many of our support people as they have families of their own to support and would be unable to "volunteer"  their time.

Two of our children are on Medicaid waivers and three others receive significant financial assistance via state grants and medical assistance.  Being pro-life is an expensive long term stance, not a one time expense.  Special needs kids require tax money, lots of tax money, to raise, educate, "therapize" and in general, keep alive.  Shannon's specialized liquid nutrition costs more than $1500 per month - there is no way we could pay for that ourselves.  We rely on medical assistance to cover that cost as well as the many other expensive medical supplies that she needs.

Medicaid waivers were used to provide community based services for DD (developmentally delayed) children and adults.  This is how deinstitutionalization was made possible.  Most of the DD population requires a variety of support to stay in a community setting and many of the people who transitioned out of institutions were and are wards of the state.  I know at least two of our adult children's biological parents were told to put their children away and try again if they wanted a "normal" child.

Now, at least in Minnesota, parents are expected to raise and care for their own children no matter what their needs are.  Don't misunderstand, I obviously strongly believe that this is how it should be, but there are many many children surviving today that never would have survived 15 or 20 years ago and not without significant costs both financially and emotionally to parents.  Many people are ill-equipped to handle the stress and financial cost of parenting children with profound needs. We chose our children and yet people often remark, "I don't know how you do it?"  Parents who did not make that choice are just expected to deal with it.

                                           
                                                Shannon post back surgery in July 2010.

                                                Robby, our foster son, at his group home.


My concern is that there are many who seem comfortable with gutting a program that is in place to keep the most vulnerable citizens among us alive and well cared for.  If these are not "the least of these"  that Jesus told us to care for, I frankly don't know who is.  

Listen to your Gut

I have a few basic pieces of advice I like to pass on to young parents.  One of the most basic is - listen to your gut.  No one - no matter what their training or diplomas say, know your child better than you do.  You, only you, as parents are the experts when it comes to your kids.

Today Shannie had an arthrogram and a steroid injection into her left hip.  She has had two hip surgeries called derotational osteotomy on the hip and once on her right side.  She has what is called a wind swept left hip - both her legs sweep to the right.  It causes her left hip to pull out of it's socket and yes, it's as painful as it sounds.

Today the arthrogram showed that her left hip is once again pulling out.  It's not completely dislocated, but it is sometimes slipping out, which is why it is inflamed and causing pain.  When discussing how to avoid further inflaming the hip, we asked about the use of the stander.  A stander is something she is strapped into while laying down and then it is put into a standing position.  Shannie has never been a fan and therefore neither have we.

From our experience physical therapists are huge fans of standers.  Our guts have always said - not worth the time, energy and discomfort that Shannie experiences while in them.  Today we heard the same response from our favorite surgeon.  His reasoning matched our own - a chair dependent person has no need to spend time in the stander or having range of motion (ROM), which is basically stretching her muscles, on the troublesome hip.

Now, in spite of the fact my gut had told me we were right to avoid both the stander and range of motion here at home the insistence of the professionals made me doubt.  We refused to have a stander here and I'm glad we stuck to that decision.  Today a top specialist surgeon confirmed that our guts had again, not steered us wrong and we now have a prescription in hand telling the powers that be at school to cease and desist all stander and ROM until further notice, which in his words would be till he is no longer in practice.  To that I say - Hallelujah!

If the steroid injections fail to stave off the pain, the surgeon mentioned another possible surgical option.  It's called the femoral head osteotomy (FHO).  It is basically the removal of the femoral head and then, as I understand it, muscle is pulled over the end of the femur instead.  Our surgeon has only done this surgery 15 times in his 20 years.  It is more often used by veterinarians.  Of course, we will be praying Shannie is not his 16th and that somehow the injections, no stander or range of motion will somehow be enough, but as is so often the case with our sweet Shannie-Boo, the easy road does not seem to be the path she gets to take.

We saw a young couple with a daughter who looked so much like our Shannie did when she was about 3 yrs. old sitting in the waiting room post procedure of some sort and our hearts broke for them.  We know something of the path they will be on and how difficult it can be.  The stress and strain on families and marriages of couples with special needs children is immense.  The divorce rate is higher than for typical families - at least twice the rate.

 Shannie brings us much joy as I'm sure their sweet daughter does, but it can be a hard road, especially for a young family.  In our case, it's brought us even closer together.  When it comes to our Shannie - don't even think about messing with our girl.  We are a force of nature when we are in defense of her and I am so very grateful to have Mark to lean on and sometimes hold up when times are tough.  It would be a very lonely road to travel alone.

For now, we should see some relief, and as we often remind ourselves to be grateful for good, comfortable days when our girl laughs, smiles and enjoys life.  These are excellent days.

Thoughts on Shannon at 15

Beware extreme honesty is to follow and it may not be for the weak at heart.

Shannie has been having some difficult days lately.  When she was about 2,  I remember so clearly standing with her in the ER - pre G-tube days.  She was terribly dehydrated and inconsolably crying.  Several staff members had attempted, but been unable to find a vein for the IV drip she so desperately needed.  They had all left and just Mark, Shannon and I stood in that room.  We were all exhausted as we'd already had several sleepless nights.  I looked at Shannie who was so clearly uncomfortable and, frankly, she was much more often uncomfortable than not in those days.  I couldn't speak it, but I prayed that if this - pain, suffering, unhappiness, agony - was all our beautiful daughter was going to have please, please take her now.

The fact is God did not take her.  They came in to try one more time and asked if it would be OK with us if they got a line in her scalp.   Apparently this was something that appalled other parents.  We couldn't care less how it looked - just do something!  Shortly after that hospitalization a G-tube was placed - a whole other story.  After a extremely painful recovery I can honestly say it was a decision we never regretted.  It was a huge relief to all of us that dehydration would no longer be a common concern.  My thought was that this was a sign that God promised her life would not consist of more pain than happiness and that has been generally true.  Days like some that she's had lately, make me question.

Shannon's situation is so unique in our family.  Many of our special needs kids came from really hard situations, either physically, emotionally or both.  Growing up, getting therapy of all varieties - they have all healed in so many ways.  Shannon's condition is not improving, nor likely will it.  The spastic quadriparesis, the most severe form of cerebral palsy, that she endures will continue to ravage her body and someday God will say enough is enough.

Since several classmates have suddenly died in the last two years I am more aware than ever of the tenuous nature of her life.  I have no trouble visualizing Shannie dancing in heaven and though it will  be terribly painful for all of us, for Shannon it will be the end of pain and for that how can we be anything but grateful.

How much I have learned from her about contentment and gratitude for the healthy body I've been blessed with and I am often reminded of how much I take that for granted.

Today we rejoice in another year with our sweet girlie and that it was a year free of hospitalizations or surgeries.  We rejoice in every day that she is comfortable and happy and pray for more days when that is true.  Next year - Sweet 16, never truer for a girl than it would be for our Shannie.

Green flag us!

Late Sunday afternoon Shannon developed a crudie eye which I knew was pink eye. Jonathan and Jill both had it and I've seen it many times. So, I started flushing it like crazy with a baking soda water mix I read about as a natural treatment. By Mon. morning it was hardly even red - but - I knew if I didn't get Dr. ordered drops school would be a problem.

I really didn't want to have to drag Shannon into the Doc's office and Mark was on an overnight with Ella and Jacob, so I called in to see if they'd just order the drops for me. When the nurse called she asked me to tell her the symptoms, which I did, but she quizzed me a bit and I really had to bite my tongue to not just yell - I'm pretty sure I've seen more cases of pink eye just in my family then you have at work - but I managed to control my tongue. It's really a pride issue, I guess, as we've had so many times that we've had to run to school to change out a G-tube because the medical staff had no idea what to do when one has fallen out.

I wish that there was a way to flag our kids files so that staff could know - these people know what they're doing! Maybe I should market that - green for knowledgeable parents, yellow for parents open to learning or on their way and red for parents who call and freak out about every little thing. Boy, that would sure save me a lot of time and frustration and it's, of course, really about me isn't it?

Day 7 - hopeful

So, today we started her feeds at the ridiculous rate of 1/2 oz formula and 1/2 oz. water - which worked. Then we went up to 2 oz. of 1/2 and 1/2 - then 3 and just an hour ago 4 - hallelujah we may be on the road to home sweet home. After watching almost the whole floor of kids empty out - 8 went home - only 4 of us left - we sure hope to be heading out before 1 tomorrow.

This day was one of those days when this diverse family was just a lot to handle. We had an adult daughter miss her work bus, so had to run her to work after loading 2 on their summer school bus and dropping one off at his summer school program. Then, we get a call that Christian's G-tube fell out so Mark had to deliver that to school and then put it in as the school "nurse" had no idea how to do that - seriously.

Then I got a call at Gillette, the hospital where Shannon is, that our former foster son, who we retain guardianship for, was at Gillette and needed a form signed in order to be allowed to pay for his own dental as MA no longer covers two visits a year - again, seriously? So, I walked over to do that and called Mark on the way back and we commiserated on what a ridiculous life we lead sometimes.

Should we go home tomorrow we will be embarking on a new path. There are many things that will never be the same with Shannon - none bad, just different - a new normal - yes even at our house there is a normal - Reeves style normal.