Manic Monday

     Today was Kerstin's first day going back to school after being home for a week with respiratory issues.  Last week was really rough.  There were many nights that sleep was almost nonexistent.  Kerstin was given breathing treatments and CPT around the clock.  The girl is a tough cookie!  She is my trooper!

     "Manic Monday" was exactly how our morning started off!  First thing, I had in my mind that today was the day that her Baclofen increased again.  That was NOT the case, the day is tomorrow!  She will once again increase, this time going to 1 and one half tablet, crushed and softened for g-tube administering.   I am so glad that I looked at the calendar on my cell and saw that the actual increase is tomorrow.  

     Second, after her bath this morning, I went ahead and switched her Scopolamine patch.  She wears one behind one ear for three days and then it is switched to the next ear and on and on.  We get to school and she's having therapy, therapist is working on some neck stretches and there is NO patch behind her right ear!  I can only assume that I attached while her skin was still too damp.  

   My issue with both of these instances is that insurance paying for the meds too soon is always tricky.  She will run out before time.  That's another issue for another day.  I am just glad that she was able to go back to school today!  Even if she did doze off in class!  

  



More to come...

Does she live at home?

     "Does she live at home?"  When you take your children to the doctor or they have been admitted to a hospital, do the doctors and nurses ask you does your child live in your...their home?  I cannot count the number of times I've been asked that!  Every time I'm asked, I always get a little bit upset.  I often wonder is it because of Kerstin's disability.  Could it be because she is now 12 and cannot do anything for herself?  Could it be the fact that I am a single parent to a child that needs care around the clock?

     Whatever the reason, I think there should be a way of knowing that bit of information without having to ask the PARENT that is sitting right there with the child!  I am pretty sure that if a child is being admitted to a hospital from a nursing facility, that information is readily available on forms and identification!  

     Just this year, back in February, I had a doctor ask me, if Kerstin lived in our home?  YES!! The questioning went further, do you think you will be able to continue to keep her in the home?  I was thinking to myself, "Do you ask other families this?"  If their child can walk and talk and do for themselves, are they asked these kinds of questions?  I told him, "As long as I'm able to do for Kerstin, she will live in HER home!"

     Do you ask or wonder if your friends and family members with their so-called "typical" or "normal" children, if they will keep them in their home?  Do you think you will be able to keep them there?  If it is not a thought that has crossed your mind, then think about that friend that has a little girl in a wheelchair, she can't walk, talk or do the things her peers are able to do.  How many times do you think she's been asked if her child lives at home?  What about the times doctors, nurses and others have wondered how long the child will be able to live at HOME?  

     It happens more than you realize or care to think about.  It hurts to be asked those questions!  It hurts to think of your child not being able to stay in the home they have known.  Some decisions are hard and they have to be made.  That is up to the individual's family, when and if that time comes.  For now,  as long as I am able, Kerstin will live in the home she's been in for 12+ years!

"There is nothing like staying at home for real comfort" 
~Jane Austen

Parental Involvement

   In schools today, what do you think one of the things some school officials would say is missing?  Parental Involvement!  Why do you think that is the case?  It is almost guaranteed that you will hear similar reasons no matter what school or community.  Reasons like, "We just can't get our parents out to support the children"  "Our parents aren't interested in things like this" and many other reasons.  Parents even give reason for their lack of involvement.  "I have to work"  "The teachers (other school officials) don't listen", and so many other reasons.  

     What about the parents that are committed?  The parents that are willing to help whenever and however they are needed?  Some are often overlooked, viewed as an outcast or trouble maker.  That has been my personal experience!   

     Speaking of my experience(s).  Time and time again and day after day, when Kerstin has been well and able to go to school, I have and will continue to be at her side.  Yet, somehow, when this mom brings up accessibility, special education, ideas or suggestions, I am considered an enemy! 

     After all, shouldn't advocacy and parental involvement go hand in hand?  When there is parental involvement, the parent(S) are not only involved, they also advocate for their child and others.  They want what is best for the child's education.  They want to make certain that the child is in an environment that is conducive to learning.  They want to ensure that the educators are qualified and knowledgeable.

     Schools/officials should want parents to know what is going on in the schools as well as with the board/district, right?  Maybe not!  With this parental involvement, parents should be able to voice their opinions, not just hold classes, make copies and sign in to meetings so that the schools look better.  Parents be engaged!  Be involved.  When parental involvement is sought, be supportive of what you get and build a relationship!

     Parental involvement=Advocacy!

     


     

Wheelchair For A Day!!

     You know when something is constantly on your mind, you have to get it out there, so to speak.  Getting it out there can be talking about it, writing about it...whatever, however.  As long as it is o-u-t!  I made another Facebook post about the fact that Kerstin is at school, in an already snugly fit wheelchair, yet there is no another way for her to sit that is supportive.  

Very similar to Kerstin's chair!

     The beanbag she used for years before moving on to middle school is now flattened.  We were told by the special ed coordinator that "if it was purchased with special education funds, it can be used by any student".  Kerstin being the only user of that beanbag was NOT a problem until I went to the newspaper on the horrible accessible issues at the school.  Never-mind the fact that Kerstin and one other child were the only ones in wheelchairs.  He wasn't in attendance much this past school year.  Nonetheless, I was able to borrow a Tumble Form chair from CRS.  Kerstin used that chair until she went home on medical leave, prior to her spinal fusion.   

    After surgery, Kerstin had extra inches and pounds on her and quickly outgrew the borrowed chair!!  We've been seeking funding and sources for a chair that is big enough for her now.  It's coming soon, like the newly ordered wheelchair, they take a little time.  

     The back-story came to say once again...if these school leaders were in or had to be in wheelchair all the time...how would they handle things?  No other seating option.  No way to get out of the chair unless she is being changed!  NO, Kerstin will NOT be in attendance for the entire school day without another way to sit!  You know once I said that, letters are needed!  I already saw that one coming!  

Therapy/changing table.  Can't sit here unsupported!

     Kerstin's ortho specialist said something that I will not forget.  At her appointment last month when we were talking about school and seating, he said "It seems like so many people in our schools have lost all common sense."  That was powerful!  I haven't been seeing much common sense lately.  The people within her school system that seem to have it are often treated badly, and please don't form a decorum with Kerstin's mom.  Some have questioned how one could be nice to me after my going to the media.  Makes me laugh!  

     "Wheelchair For A Day!"  I would be willing to do the leg work to find chairs for a day.  Would the superintendent, special education coordinator, all central office administrators, and every board member be willing participants in "Wheelchair For A Day?  Our friends in the media will also be invited!

Inclusion!  That means,  YOU try a Wheelchair For A Day.  Share your experiences!

Summer break is over!!!

     Well, today was Kerstin's first day as a 7th grade student!  I am still in disbelief!  My daughter, my baby is in 7th grade and will be a teenager in December!

     Today was interesting.  I am amazed at how district leaders know how to avoid you when things aren't fully in place.  This is NOT the post for that and I will not "go there" now!  I hope they know IEP's were written at the end of the 2013-14 school year!

     Kerstin wanted to sleep in late!  Like always, I had the lights and TV on...nothing was working at first.  Eventually, we got the day started!  She was happy to see her teachers and the students, only for a while too.  She was ready to go.  I knew she couldn't stay long anyway because of the seating arrangements and her chair being a snug fit.  Hopefully the new wheels will be here soon. 

Here are some pictures from Kerstin's first day of school!  

All loaded up, ready to go!

"I'm ready to go home now!" 

More to come...

About Last Week

     Last Tuesday, Kerstin had another spinal fusion follow up appointment.  Everything went well, really well.  The fusion is going well. Kerstin is healing, the screws and rods are in place. There were a few questions for the doctor.  

     Lately, Kerstin has been drawing her left leg up excessively and it appears that stretch marks are coming because of the constant pull or bend.  She also hangs this left off the side of her wheelchair. Hanging leg off the chair is pretty much a comfort thing.  Since Kerstin is not a walker, her kneecaps are not in place as they would be had she been a walker.  Doctor Killian informed us that there has not been a successful surgery that would be worth performing to correct it.  

     The dysplasia of her right hip has not changed, there is no arthritis there or in her knees.  Always a good sign, and I'm very thankful for that.  Even better, he tells us that Kerstin is done with orthopedic surgeries!  He will continue to watch her hip, but as he stated "she's done with ortho stuff"!  That was great news because on July 23, 2013 at her follow up from the bilateral triple arthodesis (fun to say), we found out that the curve of her spine had increased to the point of needing surgery. This appointment, all great news!

    We are still waiting on the new wheels to come, should be approaching any day now.  She is snug as a bug in her current chair.  Kerstin's physical therapist sent a letter to the doctor requesting that Kerstin get a Hensinger neck support.  She's been tilting her head a great deal since the surgery.  Brenda (PT) said that when a child has scoliosis, they tend to tilt their heads to compensate for the leaning that is caused by the curve.  Once surgery is performed to correct the back, they still have the head tilt.  The neck support will help to strengthen muscles in her neck and hopefully, she will eventually hold her neck/head up better. 

Hensinger Neck Support

     We also got a prescription for a Tumble Form chair so that Kerstin can have another seating arrangement when she's at school, that's not in her wheelchair.   There was a beanbag that she had access to but, pettiness with/ from school leaders/administrators changed that.  The beanbag was flattened within weeks of the last school year starting.  Larger children that have mobility and limb usage had access to the bag and it became of no use for Kerstin in it's pancake like state.  She had a Tumble Form, but quickly outgrew it after the spinal fusion stretched her, no complaints there. 

Large Tumble Form

X-Large Tumble Form

Tumble Form chair with wheels.

     So, Kerstin will continue therapy! Follow up with orthopedic specialist only if/when needed until next scheduled appointment.  Lovely!!!



More to come...

Back To School. Dread or Celebrate?

     It is that time of year!  Tons of parents are celebrating everywhere!  It's almost Fall and that means the new clothes and supplies have been purchased, buses will be rolling soon and the bells will be sounded as the new school year commences.  Morning routines will or already have started.  Those routines include; getting everyone up and out of bed after months of sleeping in late.  Getting dressed and out the door.  Mad dashes for the car or bus.  Yeah, it's going to be interesting.

     Many parents are happy because their lovelies will be "out of their hair", so to speak, at least for a few hours per day.  They send them off with their backpacks, stocked with supplies and that is it, until there is a need for homework help.  If you are a parent like myself, raising a school aged child with special needs, the daily routine is a bit different!

     I'm not jumping for joy because it's time for back to school.  I won't be laying back in bed once the bus pulls off with Kerstin.  There is no complaining here.  Just education and hopefully an understanding!  Things are different in some households and families.  

     My words a few days ago on a Facebook post:  When prepping for back to school, some of us have to do more than clothes, pencils and paper, backpacks and lunchboxes.  We have to make sure seizure/epilepsy care plans are in place, medicine lists and schedules as well as g-tube feeding schedules are ready.  Not to mention the many letters and notes from doctors, therapists and specialists...and then the petty stuff.  It's almost that time!

     

     Kerstin has been in school since August 2006.  I have been her "right-hand Mom" since day one!  Everyday that she's been able to attend school, I have been there providing service and assistance to/for her.  These services weren't limited to only her.  I have assisted the instructors when needed and definitely Kerstin's classmates.  That is how it's supposed to be, right?  If you're in education, you're there for the children!

    In spite of the pettiness I've endured over the years just to ensure that my daughter receives an education with peers of her age and in her community, I still happily attend school with her.  I do whatever is necessary to ensure that she receives an education in as much of a "normal" way and that it happens in an environment that resembles her life and community.  Her life is not self-contained and neither will her education!!

     So, as the school year approaches, remember those among you that have to go the extra mile with there little ones in order to get them prepared for school.  We don't just send them to school, some have to go or be there more than most! 



More to come...

Wordless Wednesday- May 28, 2014

:))

Wordless Wednesday- April 30, 2014

A Little Determination...

These pictures are the proof that a little advocacy and determination goes a really long way!!!

It is also a reminder to MYSELF to never give up, stay visible, vocal and focused!  I am an advocate for my child and others living with disabilities!

April 27, 2013

March 18, 2014

Comparative photo

More to come...

All clear!

So, even after we started February off in the hospital for a few days, Kerstin's lungs and chest were clear when she had her follow up appointment.  Her pediatrician was pleased with her progress on the 17th, which was also her granny's birthday.  He was also happy with how well her back has heeled from the November spinal fusion.  At the end of her check-up, her doctor stood at the table and told me that he just wanted to say that he was impressed and had to commend for the care I take with Kerstin.  He seemed to get a bit choked up and said that Kerstin looks good and appears to be a healthy child and that he knew it couldn't be easy.  I told him that it gets hard at times but, I wouldn't trade it because I love Kerstin and she's changed my life!

No, it is not easy.  But, what about life is?  I know people say that it gets hard, it gets rough and I say I understand.  Until you've walked a mile in the shoes of another, you never know what they are truly dealing with.

Now, yesterday, Kerstin had her orthopedic follow up!  More x-rays!  Her doctor enters, and looks happy!  We live for these moments!  He said that Kerstin is in a growth spurt (YES, indeed).  He said her x-rays look great, her fusion is coming along nicely, all the rods and screws are in place and there is NO arthritis in her hip!!!! HALLELUJAH!!!

He asked how was handling her since the fusion?  I told him she's getting heavier since her g-tube, but I'm handling her.  He had to clarify the question.  Was she more difficult to lift, change, bathe, dress, etc...  NO, not at all.  For the first time in forever, I have been able to put her in her bath chair and step away without the worry of her falling into the tub.  She sits on the sofa or in bed without flopping over.  She sits up straight in her wheelchair now (it either needs major adjustments or a new chair needs to be ordered).   Kerstin still gets some congestion but its not like before surgery, her breathing seems more stable.

It amazes me how much posture and the the breath affects the entire body.  My daughter seems happier since the spinal fusion.  At first, I was completely devastated when he told us that she would need the surgery.  I started my own research and got overwhelmed at what was found.  All I could think was, my daughter has to have her back cut open.  It really got to me at first.  Now, I'm glad it's behind her.

Dr. Killian, asked Kerstin's mommy, ME, if I could be a resource for other parents who may be preparing their child for the spinal fusion?!  I happily agreed!  There may be another family out there about to approach this surgery and their child can NOT do the required walking as therapy after the surgery.  Their child may be like my child, dependent upon family, nurses, and other therapists for every moment they make!  It's hard and it may seem like a long road is ahead of you, it whizzes by and in not time you will get the all clear for your angel to return to school!

For the first time in 4 months my daughter will return to school next week!!  This stay wasn't only because of the fusion, she had complications after surgery and an extended stay, then another hospital stay 3 months after surgery.  We made it through it all!  We will start slow and do partial days for a while but, she's able to go back to school!

More to come...

Last day of school...

So, here we are!  Kerstin's last day of school until after surgery, which is probably January.  The plan was to go around to all of her teachers and classmates to tell them to have a safe Halloween, Happy Thanksgiving, Merry Christmas and Happy New Year!  Didn't work out!  I did not want to get too emotional and she notices, she senses my emotions and would have cried all the way home.  One of her friends since Pre-K overheard a conversation I was having with one of the teachers and looked at me like she wanted to cry.  She is such a sweet girl, and has always been so sweet to Kerstin and me.

What we did instead was said our "see you later's" to her teachers in the hall.  They all wished her well and speedy recovery.  Even exchanged numbers to check in on her!  It is truly a blessing to have TEACHERS that really care for their students' well-being, wish their supervisors and administrators were as caring but, that's a post for another day!  Wouldn't you know that Kerstin did NOT leave school empty handed either!  Her school's nurse gave her night gowns to be warm and comfy, her teacher and speech pathologist gave us a goodie bag with pajamas, slippers, glove and ear muff set, socks for Kerstin and had a magazine, hot cocoa, Cokes, snacks, lotion, hand sanitizer.  Must say that we have been truly blessed  with so many supportive people.  The blessings have come in mail, via UPS and from church.  Comfort items and monetary support.  It all means so much, more than the supporters will ever know!!

So, we are here, no more school until January.  Eleven days before surgery!  Please continue to pray with us for Kerstin's strength, safety and healing.

More to come...