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.

Menial Means Meaningful

Gratitude.  Thankfulness.  Contentment.  Satisfaction.  All great words for the month of November. Many people are submitting daily, or multiple times a day, things or people they are grateful for on facebook.  Maybe it's just inherent in the life I lead, but thankfulness is a feeling I never have trouble realizing.

Today both Shannon and Chad needed showers.  I helped Mark lift Shannon, he showered her and I dressed her and braided her hair.  Mark ran Ella and Jacob to school and I got Chad into the shower.

Every time and I mean every time I perform these, menial if you will, tasks I am overcome with gratitude.  I'm grateful that I can do these things for myself.  I'm grateful that today Shannon enjoyed her shower pain free.  I'm grateful that Chad, generally, has a wonderfully positive attitude and enjoys the process of showering, shaving, lotioning and dressing. I'm ever so grateful my body is strong and the process generally never causes me any physical pain.  I'm grateful for warm, clean water that's there whenever I need it.  I am sometimes absolutely overcome with gratitude and reminded yet again how incredibly blessed I am that I live a life that is so full of meaning and significance.

Back to School 2012

We are off and running into the 2012/2013 school year.  This is a pivotal year for pretty much all my kids.  Jacob is in third grade learning cursive, not sure why they still teach that - just sayin'.  Ella began middle school.  She is in a K-8 school, so she didn't have to leave the building, but does have to move from classroom to classroom.  Callie also started middle school in a whole new building with a whole new staff.  Our little sound sensitive child now has to deal with the hated bell many times over what she's had to deal with before.  Christian is finishing up his middle school years this year and Shannon officially began high school.  I say officially because her program was in a high school the past two years, but this year she is actually high school age and is back in our school district, albeit not our neighborhood high school.

One bummer about having kids in "low-incidence" special ed. classrooms is we've never had their program in the school our neighborhood kids attend.  So for kids who have grown up with typical neighborhood friends, they ride a different bus to a different school rather than attending the same school with other neighbors.  In addition to that Callie and Christian didn't get to move into the middle school that their reg. ed. peers went to when they left their elementary school.  This is also true with Shannie.  Building relationships with typical peers isn't easy and is especially difficult at that middle school age when most kids are not the most comfortable in their own skin, so to speak.

Callie's teacher was excited to tell me how well she did on her first day.  She was definitely the one I was most concerned about as far as adjusting to a new building, teacher, schedule etc. etc.  She reiterated what we hear time and time again - "she's so smart".  I'm always glad when I hear that because I know that whoever said it will "get" her.  More often than not now people figure that out quickly, but that wasn't always the case.  There are a few preschool teachers I sure'd like to show her off too - in a totally non-judgemental in your face kinda way.

After a quick light clean up of the house I've enjoyed a wonderful leisurely lunch under our gazebo in our yard in absolutely perfect weather watching my ridiculous dog try to catch a chipmunk who is ruthlessly baiting her.  In about an hour the peace and quiet of right now will completely disappear with the first bus arriving as well as two grandie girls and that too will be thoroughly enjoyable.

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.  

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.

Well Preserved

The other day I was shopping with Shannon - a rare occasion for us for several reasons.  Generally I do not shop with children.  The majority of my kids are not recreational shoppers.  This is probably due to the fact that it is rare that a purchase is likely to be made and unless it's a toy - they're not interested.  Works for me.

So, Shannon will soon be 14 - amazing - and we were having a girl's day out.  I found a cute outfit for her at Macy's - major clearance - and we were checking out.  I didn't have my Macy's card, so gave her my ID to look up my account info.  Obviously she took note of my age, but I didn't realize that was the catalyst of the conversational exchange we then had.  She first started commenting on my coral colored hoodie and what a great color it was on me.  Then she proceeded to tell me, in a very thick Asian accent which for some reason made it funnier, how I didn't have any age spots on my face or wrinkles.  Well, now that's just ridiculous as it took me a pound of make up to cover both those things up.

At first I was kind of flattered and then I realized she was commenting because she knew what my advanced age was and I officially have hit the "well-preserved" category.  I guess that's still a good thing, but it's hard to get used to the - you look great...............for your age - comments.

Good day

We did something with Shannon today that I don't think I would have considered trying before her surgery. We went on a 1 and 1/2 hr. river boat tour. It would have been much too risky to try before her surgery due to her "fussiness" - which was actually very serious pain I'm sure. She can sit much more comfortably in her chair now. Jonathan and Jill came with us, which was awesome as well.

Shannon was also able to spend two evenings with Linda and Paul for the first time in a month. It was great to have her out of the house - and I can't imagine how great it was for her to be at Linda and Paul's - her second family.

Jacob went to his open house at the new school he will be attending. He's very excited and we're excited for him. This school is a great fit for him. Hopefully, Ella, who is on the waiting list, will get in soon as well. This school starts a month before our local school and apparently many parents use it for a month of free day care and then drop out right before their local school starts - tacky! Anyway, that'd be to our advantage if it gets Ella in.

We tried to make this past week a really fun one for Jacob - Valleyfair, a movie, lunch and dinner out and the riverboat ride. Right now dad has them at the Y pool. He is counting the days till school starts - so - here's to hoping that excitement lasts.

Woo-Hoo Shannie

Well, today's goal of backing off of the meds has been a HUGE! success. She had her last dose of Tylenol almost 12 hrs. tonight and the same for one of the anti-spasm medications. What a relief! We were so worried she would be uncomfortable without them, but she's doing just great. What a tough cookie.

After taking Ella's hair out I was having trouble getting all the tangles out - so had to have more instruction from the daughter-in-law who is personally in the know. I should have washed it before trying to brush and then comb it out. 9 years dealing with her hair and I'm still learning - either I'm really slow or it's really that much work. I chose #2 since most black women pay someone else to "fix" their hair too - not so much into the do-it-yourself hair.

Last night our electricity went out about 4AM and didn't come back on till almost 8. Callie and Christian had speech, so had to be out the door before that - so they grabbed breakfast on the way and were a little messy, but they got there. I was soooo grateful it came back on before Shannie woke up and I had to open the fridge for her food. We are also well, as in water well, people - so no electricity, no water. Never a good thing to be without in our house.

So, here's hoping tonight is a restful night. We will give Shannon her nighttime meds as late as possible and hope she sleeps all night - it sure would be awesome to sleep without setting a middle of the night alarm.

Sisterly love

Tonight Ella and some friends from church were together for bible study and as they shared prayer requests Ella shared about Shannie's hospital bed, which led to a discussion about the accessible bathroom we - and by we I mean Mark - are working on. One of the girls asked about how Shannie uses the bathroom and Ella promptly responded - "that's classified". Funny girl - way to protect your sister's privacy Ella.

We spent several hours undoing Ella's hair today. Hopefully, we can make an appt. sometime over the next week for a redo. It sure was nice to have a ready to go hair do every day. She kept saying how much she missed her hair and how special she felt with it and now she felt just like everyone else. Oh, Ella, you are so not like everyone else.

I think tomorrow we will try weaning off of the every 4 hr. dose of Tylenol. It's hard when Shannon is unable to tell us ahead of time whether she thinks she still needs it or not, so trial and error is our only course. We can also remove the main bandage, but the steri strips will come off slowly and surely - slowly is usually our experience.

Every time I think I know everything............

It has occurred to us a hospital bed might be helpful in physically dealing with Shannon - you know, before we too need back surgery. As we mentioned the possibility to her new social worker she said - surgery or not she should be eligible. It may sound ignorant, but it never occurred to us to ask.

Wouldn't you think with all the specialists in her life - social worker, physical therapists, occupational therapists, orthopedic specialists etc. etc. - someone might have asked if we needed one? Sometimes I think they all forget - for us - this is the first time we've dealt with all this. When we had foster kids with physical issues - we bought our own lousy bed - and I mean lousy - it cranked and was just kinda icky.

We also need a new bath chair - with the dual purpose of sitting in the bottom of a tub or rolling into an accessible shower. This time, they won't let us even order one until our shower is installed - kinda ridiculous when it works for either. So, the heat is on for Mark to get moving on the bathroom. Poor guy is still pretty tired and has to rustle up the energy to get that going. I'm so grateful we can do this as a team. How exhausting to go it alone.

For now, we have put risers under Shannon's bed legs which at least puts her up to our waist height for lifts in and out. More room under the bed for often used care items and such as well. Right now, Jill is putting some vinyl butterflies and flowers to brighten up her room - the white walls were starting to feel much too hospitally.

Spinning in circles

When you have the variety of special needs kids we have the time and attention that these past two weeks we have taken for Shannon is bound to affect some of the other kids. For those who have attachment issues it brings back those feelings of abandonment when we are away so much and even when we were home our attention wasn't on them.

We have had meltdowns the likes of which we haven't seen in probably a year with one. Between the demands of summer school, which I'm sure doesn't help his good feelings of self esteem as his learning disabilities make school a huge stressor and the time away he is falling apart. So, we try to scrap up a little extra energy to give the one on one attention that they need and pray it's enough for now.

Then we have our goofball daughter spinning around in the living room - I think my head actually feels that way right now. Between weariness and so many chores and information circulating my brain is definitely overloaded. Maybe I should join her next time - at least that kind of dizziness goes away.

Necessity - the great mother of invention.

Yesterday we needed to wash Shannie's hair - but we have no accessible shower yet and no bath chair for her new and improved body yet either. So, what to do. Well, we used a plastic bag to cover her head rest and with the help of a big brother tipped her back and voila - clean hair. Now we just need to be sure we have those shower and chair items in place before a Minnesota winter - oh, ya sure that'd be cold.


It was nice to all be in church together this morning and as Pastor Scott said it was nice to have Shannie with us - it was wonderful to see her smile from ear to ear. She's coming back from her drug haze day by day. We sure miss our smiling interactive big girl, but the glimpses of her real self are coming through a bit each day as we ever so slowly back off the powerful drugs she's needed. So, far she's coping well and we pray that will continue.

A wierd night

It was my turn at 4AM last night. First I got confused about which meds she was suppose to have and started squirting one kind of med into another kind's bottle. I caught myself before I mixed 1 ml. into the wrong bottle. So, then I went in to give her the formula and meds and could not get the g-tube to flow. Once in awhile a little chunk of pill might get stuck so I used just a water syringe to try to push it through, but no luck.

I had to wake Mark up and see if I just wasn't strong enough, but no it was totally stuck. Next step is to take out the fluid in the balloon which anchors the g-tube into her body. It came out like pink med mixed with formula - wierd. So, he did it again - same deal. Shoot, for some reason it was pulling her stomach contents out rather then just the clear water that is suppose to be in there. I pulled on the G-tube and it came right out. We only have one spare, which we used, so hopefully it won't do anything crazy till they can deliver a new one next week. There is a picture of the kit with the new g-tube and one of inserting the new one.

Incredibly in the 11 years she's had a G-tube we've never had this problem. Why this week of all weeks and the middle of the night of all times? I got nothing - no really, I've got nothing.

Our grandson and his daddy came over to run the back yard - heat and all. I plan to enjoy his amazing energy and perhaps can gain some just by watching him. OK, probably not, but it will bring a smile and that's always good for the soul.

Home Sweet Home

It feels a little like getting out of prison. In no way do I prefer the hospital, but it is daunting at first putting together her schedule of meds and feeds and then just doing all her other cares by ourselves without supervision. Do they really think we're capable? As always a rhythm will develop and the meds will be weaned and then we'll be back to our new normal.

What exactly do I mean by a new normal? Up till this surgery we could all lift Shannon by ourselves - granted in this past year she's gotten a little ganglier and heavier and I knew before long I would no longer be able to safely do that. She gained 10 lbs with this surgery and single person lifts are impossible and not safe for her or the lifter. So, when transfers are needed 2 adults will be needed. Further into her recovery, like 6 weeks or more, a hoyer lift can be used. Also, a new stander is in order for weightbearing and to prevent her bones from becoming too brittle. We're also looking at new bath chairs - one that can roll into the shower or sits in a bath.

We had a little scare tonight and are keeping a close eye and trying not to worry about a small area of possible infection. Perhaps too much info., but keeping the lower part of her back - the incision goes to the very bottom of her spine, no pun intended, clean is very difficult. So, we clean as best we can and pray for rapid healing.

For now - we have food or meds to deliver every 2 hrs. round the clock except for one 4 hr. time period during the night. Stinkin' Tylenol only lasts 4 hrs. and Ibuprofen inhibits bone healing - so, for now we set the clock. Hopefully in another week or so we can try spreading out those night hours and hopefully weaning her off the meds - one that is particularly addictive - will not be too difficult for her.

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.

Day 6 - A set back

It's been a busy couple of days. Yesterday was looking very good - her G-tube was switched back from the temporary G/J tube, her drain tube was removed as was one IV and tube feedings had started - very slowly, but all systems were a go. We thought we were on track to come home on Wed.

One little issue came up Tues. when the surgeon's resident was insisting on having an x-ray taken with her sitting on a stool - mind you she had only been in her chair once and for less then an hour, not to mention she never sits much straighter then 30 degrees. So, I said - not going to happen. I had several nurses and the PT all agreeing and a call was put in to the surgeon that also agreed the pics should be taken sitting in her chair. I felt a little like a naughty girl looking for that guy all day to say nana boo-boo - Mommy 1 - Resident 0.

During the night last night, my turn, they had to turn the feedings off as her little tummy got very swollen and hard and she broke out in a sweat. After X-rays they could see her intestines were full of gas and so all feeds were stopped and the IV started to flow again. As I left tonight she was more comfortable and we finally saw a little smile before we left as her dear Linda is spending the night with her. We are blessedly home together for about 12 hours and are looking forward to an awesome and comfortable night's sleep.

Thought some of you would enjoy the before and after photos. How she tolerated that horribly crooked little back I'll never know. She is one tough cookie.

Another good night

Last night went well for Shannie. My 54 yr. old body did not appreciate the very uncomfortable sleeping arrangements, but complaining just seems really lame when you look at what she's dealing with. She was up in a reclining wheelchair for an hour last night and did really well.

Tomorrow will be a big day - the drainage tube in the back will be removed and the dressing removed and replaced. They are also planning to adjust her chair to her "new" and hopefully improved body. This will likely require several in and outs of the chair which just can't be comfortable. So, we forge ahead. Our girl is just such an inspiration to all of us of perseverance and courage.

Thanks again for all the prayers - they are very much appreciated and definitely making a difference.

Too funny

Just talked to Mark about how the night went. It went super well. They came in during the night and put the vibrating vest on again. Mark woke up to it and couldn't figure out where he was - thought he was on an international flight to Singapore and all the little lights were instrumentation in the plane :-) I suppose that was a disappointment for him - he loves to travel.

Anyway, they didn't know he was listening and Shannie was making little ah noises with her mouth open and the respiratory tech and nurse said she sounds like a little lamb - which is Mark's nickname for Shannie!

He said this morning - I've got to say my biggest fear of her having extreme pain just hasn't happened. This hasn't been true with her previous surgeries, so it's been a huge relief. Now, if today's switch of meds still holds it - that will be totally awesome.

mostly good day- a few rough spots

For the most part it was a good day. She moved out of PICU and onto the regular floor. She had two bouts of low O2 levels which required suctioning - not a fav. This evening they also used a BD vest which basically pounds your chest area with air, if you will. Wasn't sure how uncomfortable that'd be, but she tolerated it well. The follow up suction was hard, but daddy said after I left she was sleeping deeply again.

Tomorrow is a big day. She'll be off the PCA - patient controlled analgesic, which is controlled by her caregivers in her case. Basically that means she'll be off instantaneous pain relief and will be backed off of the harder narcotics till tylenol holds her pain. Also, they will begin her tube feedings which will be via the new G/J tube. So, praying all those changes go smoothly and she won't be too uncomfortable. Also that her "bowels" - sorry if that's TMI - will wake up, if you will. Very important.

Daddy is there for the night and tomorrow. A few siblings will visit tomorrow evening and then it'll be my turn again. Her big bro Jonathan will spend Sun. with her so we can go to church - if she behaves herself ;-)

Pretty good night

Good morning - it was a pretty decent night for Shannie. She spent some time on each side and is tolerating it well. Her oxygen levels kept dropping, so they put a mask by her with O2 and that did the trick. She hates coughing even when she's well, so they've had to suction her some which isn't too fun.

They just removed her aerterial line and will be moving her out of PICU and onto the regular kids floor. That will be very nice, although it's been very comfortable here as well. The PICU is brand new - she was the first patient when they opened the new PICU at the U about 6 yrs. back. This is a habit that really needs to be broken ;-) Everyone is always so thrilled with their new digs and we're trying to be gracious "guests".