Her Wheels...My Shoes...

     

   There's a saying that goes something like you don't know about a person's life until you've had the opportunity to walk a mile in their shoes.  Basically, until you have had to go through what the next person has gone through, you don't have a complete understanding of what they deal with each day.  This is especially true  when it comes to understanding what a family is dealing with when they are raising a child with special needs.  Oftentimes, when raising a child with a disability, things don't happen as easily or as quickly as they usually would.  Nor do they happen as others traditionally think that they should happen.

     I've seen post after post on blogs and articles where parents of children with disabilities wanting people to understand them.  Just because they have a child with special needs doesn't mean that they want a life where they don't have the constant worry about their child(ren).  This life, of raising a child with special needs does require dedication and a tough skin.  There is also a facade that shows extreme strength.  Underneath it all, we need someone to listen to us, to be there and just to understand.

     Her wheels...my shoes...you can't understand what we have to go through unless you've done it.  I can guarantee you that most families raising children with special needs don't want others to sympathize or feel sorry for them.  We truly want understanding, and a little compassion!  




     When we're a little behind for an appointment, school or other things, know that it is not intentional!  Think about our situation.  It is not one of those that I can say to Kerstin, go get your shoes, your clothes, or get dressed, eat your food, brush your teach...take your meds.  I have to do all of that for her!  Then, I have to do them for myself.  Let's also add in the factor of a sometimes spastic child. Dressing is little more difficult.  

     When the journey is understood, it means more than you even realize.  Take a stroll in her tracks and a walk in my shoes!  Tell us about your journey...

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...

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...

Things I wish I did NOT know much about!

     There is a saying, "You learn something new everyday!"  True! There are some things I wish I did not know much about!  Since Kerstin's diagnosis back in June 2002 it has be big emotional, educational and at times very stressful roller coaster.

     I feel like I have so many professions all rolled into to one, ME!  I am a cook/housekeeper/butler, chauffeur, paraprofessional, nurse/caregiver, secretary, personal shopper, therapist (physical, occupational...), consoler...most of all MOM!  24-7 the duties of a mom is never ending.

     Since the diagnosis of Cerebral Palsy, we have been faced with so many other diagnoses and terminology it gets pretty hard to keep up with it all.  At the start, Cerebral Palsy...I was a two something mom, first child, and to hear at her 6 month check up that she may have a mild to severe case of cerebral palsy was shocking and very hurtful!  I had no idea what it was, what to expect, what it would do to my daughter.  To be clear, if there was/is a question...Cerebral Palsy is NOT contagious!

     Cerebral Palsy:  is like an umbrella, covering a few forms of motor conditions that affects the development.  Cerebral refers to the cerebrum of the brain.  Palsy is uncontrolled movements of the body.
There are different types of Cerebral Palsy (CP); spastic, ataxic, athetoid and mixed.   We would have to see a neurologist to determine the type; Spastic quad.

     After that first diagnosis there came so many terms I needed to be aware of, so many doctors Kerstin would have to see.  Never imagined the journey we would be on.  I had heard of seizures before.  Never thought I would witness one firsthand, and it be my child fully convulsed.  April 15, 2004, is not a night I will long forget.  Epilepsy!  Another diagnosis, she will have to be followed closely by the neurologist. At first, it was thought that her seizures were febrile, then pain related, not so much the case.  She has been having unprovoked seizures.  Recently having a few small seizures, four in the past week.  Her Depekene dosage has been increased by 1 mL.

     More terms I'm becoming an expert at and wish I wasn't:  Atelectasis, bilateral triple arthrodesis, bolus, chest percussion therapy (CPT), gastrostomy tube (g-tube), pulmonologist, scoliosis, Dandy Walker Syndrome, developmental delay, dysphagia, failure to thrive (FTT), seizure disorder...
Raising a child with special health, medical and education needs is no easy task for anyone.  Place this task on a single parent and it can be overwhelming.  I am doing my best.  I constantly pray for the strength to do all that I can and to have the patience to do so.

   Please keep us in your thoughts and prayers!

More to come...
   

   
   

Wordless Wednesday-October 16, 2013

Coming to terms? Not really!

     Well, I thought I was "coming to terms" with the idea of Kerstin's upcoming surgery...now 25 days away.  This is not exactly the case.  It seems the closer it gets the more stressed I become.  I'm feeding her and fighting back the tears because all I can think about is, "How will they have her laying while they perform the surgery on her back?"  "How out of it will she be once the surgery is over?"  "Will she be in much pain?"  So many questions, that I don't have the answers to.  I do know that her surgery will be no less than three hours, meaning it will be some time before I will be able to see her once they take her back. She will be given anesthesia, it has to kick in before they can start, she will be in surgery for a few hours, then in recovery before I can see her.  After that she will be in the pediatric intensive care unit (PICU) for at least the first night afterwards.

     Everything is becoming so real now that all of the doctor's offices are calling to remind us of the many pre-op appointments she has coming up.  There is a full day ahead of us this coming Monday.  The day will start with an x-ray of her spine followed by a CT of Thoracic and Lumbar spine, first ever visit to a pulmonologist, a follow up with neurology all followed by APASS (Anesthesia Pre-Admit Screening Service).  What a day it will be!

     I'm praying daily for the strength to carry on, but I feel so weak and helpless at times.  When she's moaning and I don't know what is going on or what I can do to console her and make it better.  When her arms or legs are shaking and there's nothing I can do to stop it.  No matter what I do at that very moment, nothing seems to help...there's nothing I can do but cry and pray!  It is very hard, most of the time.  No matter what's going on, how I feel...it seems like there's no break, no sick days for me!  So, I press forward.

Home away from home, in a few weeks. 

 
More to come...

Surgery day is coming...

We're getting so much support from family, friends and even strangers.  It's time now to mentally prepare myself for another surgery, and my daughter being in the hospital for at least a week later this fall.

It is going to be rough, this will lead to more appointments, follow up appointments and lots of trips to Birmingham...which is a 124 mile trip, one way.  I'm not looking forward to it, and it is going to be especially hard, since I no longer have a job, as of this past May.

I'm keeping my faith, I know the Lord will bless us, and put things in place so that we will not have to worry about the financial strain another surgery can bring.  All of this is for Kerstin, and her health! If you can, please make a donation to help us along the way.  It is greatly appreciated!

GoFundMe donations can be made here.

Dwolla Donations






Thank you,

Here we go again!

On Tuesday, Kerstin had her post-surgery, cast removal appointment with her orthopedic specialist.  We were excited, because her feet are looking good, healing fine, we just have to get her some school shoes that she can wear over the AFO's now.  Everything was going well, they didn't have that many patients, so the wait was minimal.  Although, I must say,  kept having a funny feeling about the appointment, before we left home, I kept thinking that I just did not want to take her. Even after arriving at the office, I was hoping maybe the doctor had to cancel for the day, I know they would have called beforehand.

We check-in, I was asked about the paperwork they mailed weeks before, to bring to the appointment...wouldn't you know, I completed the forms and forgot to take them with us.  Luckily, it wasn't a big deal, I redid the forms there.  Kerstin is called back, we talk with the nurse, Mandy,  about the spasms she's been having lately, I told her that I was also concerned with her leaning a lot when she's either in her wheelchair, Tumble Form seat or just seating on the sofa.  She was sent to ex-ray to get imaging done.  During the ex-ray I just had an overwhelming feeling that I wouldn't like the news we would get, yet, I was still hopeful.

We're back in the check up room, having playful convo, while I administer her bolus...in walks her doctor, file in hand. He spoke, took his seat in front of Kerstin, she never forgets a face, so she gave him that big smile, he rubbed her arm and spoke directly to her.  Exams starts, he stated she looks good in her AFO's and to keep her in them as much and as often as possible, he flexed her legs and said they looked good as well.  He even noted that her dislocated right hip has flexibility and show no arthritis.  All good news!  Then he looks at me and says, "Mom, we looked at her ex-ray and her curve has increased...she is now at a 50 degree curve..."  I think I stopped breathing!!! That's up from 40 degrees just in December.   He continued, " It's time now to talk with family, because we can't let her continue at this rate, without correcting the curve, when children get this much of an increase we have to do surgery so that it does not increase.  We don't want her at a point where she won't be able to even sit up in her wheelchair."  As always, I sitting there looking at this beautiful child that will have to undergo, yet another surgery, trying my best to hold back the tears that are burning in my eyes. " We also need to correct her at 50 degrees verses waiting to 75-80 degrees, and that surgery would be more intense and invasive, because she would have to be cut in the back as well as the front."  I'm trying to make sense of it all, even a day later...

We were also informed that, we are going to nee family friends donate blood for her surgery, they would give me all the directions for that prior to surgery. I asked how long would she be hospitalized for this surgery.  He said " Let's say surgery is Monday, she will be there at least until Friday or Saturday."  Another week at Children's of Alabama is in my near future, sigh!   He asked if Kerstin had a pulmonary doctor, no she doesn't.  He stated that was good, especially since she now has her feeding tube.  As he was talking, I'm thinking and trying to remember what is pulmonary? He told me that a pulmonologist is needed on the team because of the tube, to make sure breathing is fine, there will be heavy sedation for the procedure...he also said that the long stay is because they will have her on iv fluids, but they wouldn't want he too sedated to take her boluses, because of swelling/stomach expansion. Things went blank for me, I heard him, but it seemed like I didn't.   He continues on with reasons why it needs to be done in the next few months, pulmonary doctors don't like to have children having surgery when it's cold and flu season, the weather is too cold, because of the risk of them being in the hospital with sick children and them getting sick. I asked him if she could be fitted for another scoliosis jacket, and would it help?  He looked at me so somber and sad, he let out a sigh, and so it would not help at this stage. Devastated, because I was putting her jacket on her.  Like I said before, I thought she had started pulling my leg and not wanting it on at all.  He told me at another appointment that it was too painful for her.

 Doctor stepped out to get me the ex-ray image and said that his Nurse Mandy was going to talk with me about the pulmonologist and other things. She starts by saying that the new doctor will need to be seen a month before surgery.  I asked when does he want to do surgery, she said late September, October or early November.  I remember telling her, she will have just started back in school.  She said she understood, and we could do late October/ early November.  She said because if we do September we need to schedule the pulmonary doctor now.  So now, it up to me to talk things over, get family and friends to donate blood and let them know, late October or early November.

I'm not looking forward to the day!  Seeing this face, knowing she's about to go through something again, that no child should have to deal with, breaks my heart.

I looked at her and snapped this pic after her appointment.  I thought, "You have this beautiful smile on your face, after that appointment..." We ran a few errands and on our way home, I could not stop my tears, they were rolling down my face.  I saw her from the corner of my eye, looking at me...had to try and pull it together, no luck.  She eventually stopped and started back watch her movie.

I have faith and I know that this surgery will be a successful one as well!  I just can't help or control the feelings that this year of 2013, has not been kind.  If I could go back a couple of years...

Info:

"A Patient's Guide to Scoliosis" 

"Scoliosis and Rett Syndrome" 

"Scoliosis"

Video:

"Surgical Treatment for Scoliosis"

More to come...

Scoliosis jacket/ night time splints update

Progress has been made, finally got the little darling to sleep ONE full night in her jacket!!! YAY!  I really think it was by accident on HER part.  She was sleepy and it was going past her bedtime when I put it on her Tuesday night ( 6.7.11 ), I was so elated that we got a full night.  She had other things in mind, because since that night she has NOT made a full night again, luckily we had and ortho appointment this past Friday, and he said that the jacket is doing its job, when she's in it, her 19 degree curve was down to under 5 degrees, shown during her x-ray!!  Happy about that!  I asked if it was okay to have her wear it during the day while she's home lounging, to get her acclimated to it...YES!  So, we shall see!

On another note, the night time splints, which we've had no problems with getting her to sleep in, rubbed her foot Tuesday night causing a red spot on her heel that still hasn't cleared, but the ones on her ankles have.  Dr. said to not put them back on until that spot is gone.  He stated that she moved around a lot that night causing the friction,and with her skin being so soft that caused the bruising. So, as you can see, its constantly something, but as always, we're pressing through it!!!

More to come...

Busy schedule

Since the last post, my little one has been free from noticed seizure activity.  I say noticed because a previous EEG showed that she has "quick fires" while asleep.  Even though she has not had pronounced activity, we have been very busy with making sure her scoliosis jacket is a good fit for her, and that the night time splints meet the specifications of or orthopedic specialist.  Not, the case, the jacket is back with the orthotics office to get some adjustments made and doctor does NOT want her sleeping in the splints just yet, just place them on her for two hours at a time and take them on to make sure there are no pressure spots or anything to cause irritation to her ankles.

My sweet daughter was only able to go to school two days this week, because she has been under the weather with a little cold, she's finally coming around...its been a battle.
Not only has the cold been bothersome to her, the Zonegran has had her in a major fog, since the dosage had to be increased.  Now, per the instructions of her neurologist, she will be weaned off of it over the next three weeks and re-introduced to the Topamax.  Just another complicated schedule this mom has to keep  up with!! OH JOY!!  It will be done, because it has to, and with God as the center of our lives, this and everything else that comes our way will work out just fine.

More to come...

This is a tough one...

I've been taking my time to sit down and compose this blog.  I had to call my mom and one of my sisters has been constantly giving me supportive pep talks.  I didn't cry at my daughter's orthopedic appointment this past Tuesday, but wanted to after hearing the doctors report.  This appointment was made because I had expressed concern to her physical therapist about her foot and she along with another therapist had concerns about her back and that maybe she had scoliosis!

Arriving at the appointment, she had to have ex-rays done, I mean plenty of them in different positions; back, side, legs straight, feet pulled up... So when the doctor came in, I knew instantly he had something to tell us.  There is what he called a "19 degree curve in her spine and she will have to wear a scoliosis jacket at night for the next few years, its not a significant curve and we are catching it early, thanks to watching her and her therapies".

Her ankle: will have to have surgery by the time she's 10, unless her foot ( ankle ) starts to swell, the calluses turn red and are bruised/irritated.  He was saying all of this and I'm looking at my 'baby' on that examine table like "OMG, another surgery!"...thinking she'll be 10 in December...then he explains the "gluing of the ankle"..which brought the tears, but I held them back, so that I wouldn't cry in front of her.  The "gluing" is major 'bony' work, she will have a pin in ankle to hold her foot straight and another heel cord lengthening to help release and not cause her foot to turn.  She will also have to have a multi podus boot, to sleep in as well!  That's going to take some getting used to for the both of us.

That was my Tuesday in a very hard nutshell.  So, tomorrow, we will be on our way to be fitted for the jacket and the boot!  Afterwards, I have to let her have some fun, and I will too!  We are going to see the new Easter movie, Hop!

More to come...