Meet the McNeil Family

Meet the McNeil Family

Thursday, July 29, 2010

My Turtle

Waverly is having a difficult week.  She is so unsteady on her feet.  We are not sure if this is a phase and we will soon see improvement or if this is continued regression.  We know her hip flexors are extremely tight.  She is walking hunched forward, almost tipping over.  She keeps collapsing to her knees and she is crawling to furniture in order to gain support as she gets back to her feet.  At times she looks like a turtle on its back, unable to get into a position so she can pull up to standing.

We are trying to keep her moving as much as possible.  We are stretching her and forcing her to get up using her own strength.  It is not easy to watch your child writhe around on the floor, desperate to change positions.  I want to run to her and help, but I know she has to stay strong.

A dear friend and fellow Sanfilippo mom said recently that she feels like she is experiencing death by a thousand small cuts.  I thought that was one of the best descriptions of how I feel each day.  Each change, each loss of a skill, each word that disappears is another wound.

Monday, July 26, 2010

Anne with an E

I love "Anne of Green Gables".  I read the series when I was a little girl.  Then I discovered the movies.  I used to watch them with friends on girls' weekends and sleepovers.  One day many years ago, Matt and I were working in Utah and staying in a hotel for 2 months.  I came home after a long day to find he had rented a TV/VCR combo and bought me the video tapes.  I was given the book for my first Mother's Day. This past Mother's Day, Matt gave me the DVD collection.  

Anne has always been a part of my life.  I was so excited to have a little girl.  I wanted to read her the books, as we snuggled in her bed.  I wanted to stay up late on a snowy night watching the movies and eating popcorn together.

It was one of the little things I mourned when Waverly was diagnosed.  I know that I can still read her the stories and show her the movies, but it simply isn't what I had imagined it would be.

Last night, my niece and nephew spent the night.  Matt was working late and I was trying to find a movie for us to enjoy.  I found the DVD collection in the closet and asked my niece if she was familiar with Anne.  She has read most of the books, but didn't realize there was a movie.  I tried to hold in my sheer delight when I asked her if she wanted to watch it with me.  She thought it would be fun and we spent the next 2 hours in Avonlea laughing with Anne.

About an hour into the movie, my eyes welled up and the tears fell.  I was overjoyed to finally share the movie with a very special little girl, but I couldn't help missing Waverly.  She should have been there with us, snuggled between her mommy and favorite cousin.

This isn't the way it was supposed to be.

Friday, July 23, 2010

Bright Red T

I am not exactly sure why kids who have Sanfilippo chew objects incessantly.  Doctors assume it is to meet a sensory need, others say it is due to the damage in the brain and still others think it is pleasure seeking.  Whatever the reason, I hate it.  Wavey began putting toys and books in her mouth around age 3.  All of a sudden she reverted back to infancy.  It was one of the first signs that something wasn't quite right.  We tried everything to get her to stop - slapping her hand, taking away the toy, using gross tasting products - nothing seemed to work.

I remember after the kids were diagnosed with their hearing losses, I took Wavey into a local preschool classroom.  The county offered her a place in preschool for early intervention.  There was an adorable little boy with a red rubber T-shaped toy dangling from his shirt.  The teacher told me he could chew on the T throughout the day in order to meet his oral need.

Then months later, Wavey's OT in London presented me with the very same red T.  She thought that Waverly would benefit from using it throughout the day.  My first thought was the boy with the T attached to his top.  I remembered him so clearly.  I remember thinking he "really had" special needs.  I took the T, determined not to use it.  However, Wavey loved it and it allowed her to play with her other toys while chewing on the T tube.

To me, the bright red T signified the onset of Sanfilippo.  It had always been lurking, but once the chewing appeared, we couldn't hide from Sanfilippo any longer.

Yesterday, Oliver's teacher wrote me to say that Oliver has been putting toys and books in his mouth much more often than he used to.  It is an impulse he cannot control.  Matt and I have noticed the change at home, but we didn't want to vocalize it.  Saying it aloud made it real.

It feels a bit like we have reached the pinnacle and now we are beginning the descent into MPS world once again with our little boy.  It is difficult with Oliver, because we know what is coming.  All of the changes we have endured with Waverly are inevitable with him, except we anticipate them.  I hate watching my son taken over by this disease.

The chewy T is now a part of Waverly's life.  It is typically seen in most photos.  We have multiples Ts stashed around the house, car and diaper bags.  I will find the occasional T in the laundry.  She loves her chewy tube.

And now they are going to become a part of Oliver's life.

I guess I need to order more bright red Ts.

Sunday, July 18, 2010

Air & Space

We went to the Air & Space Museum today.  I has been so hot and humid, we were desperate to get out of the house and into another air conditioned building.  This museum isn't our favorite, but it is a wonderful place for the kids to run around and be loud.  We even took in a short and very dated IMAX movie while we were there.  All in all a wonderful little outing.










Thursday, July 15, 2010

Heart


Oliver had his cardiology appointment this morning.  We recently switched cardiologists because the one we have been using is seriously ill and taking a leave of absence.  We decided to head back to Georgetown to see the doctor who helped Oliver right after he was born.  

Oli had a spent 2 weeks in the NICU after he was born.  He had some serious heart and lunch problems.  We thought we were going to lose him during those first few days.  It was horrible.  Then we met this wonderful cardiologist who reassured us and helped our little boy get strong.  

We hadn't seen her since Oliver was about 4 months old, so it was lovely to catch her up on both Waverly & Oliver.  She was quite surprised that the little baby who lost so much weight in the hospital grew up to be such a BIG boy.  She is very familiar with MPS, but has more experience with the other types.  Oliver shook her hand as soon as she came into our office and at the completion of the exam he gave her a high-five and a hug.  The most difficult parts of the appointments are the EKG and ECHO.  Oliver sat on my lap, while we watched a very old *tape* of Sesame Street.  He would intermittently, but all in all did a wonderful job.  I snapped this photo of him after the tests, while we were waiting to see the doctor to discuss his results.  He was given an A- from the doctor.  Everything looked great, just a thickening of the Mitral Valve.  The valve is functioning normally and unfortunately this is a common symptom of MPS.

As we were leaving her office, she commented on how well I am doing with the kids.  She thought I showed so much patience and love.  (I think we were having a good day, since it was just Oliver and I.  It is always easier with just one.  Wait until she sees me with both of the kids.  Frantic mom here!)  I told her that the diagnosis brought a sense of freedom for our family.  It is a horrible diagnosis, but we now know what is going to happen and why.  Expectations were shifted, frustration diminished, and an entirely new perspective took over.  Oliver is lucky being the second child.  Since he was diagnosed at such a young age, he has been parented as a child with Sanfilippo since he was 15 months old.  Poor Waverly had to wait until she was nearly 4.5 years old.  She was parented by 2 very scared and frustrated parents, who wanted so desperately for her to be like the other kids her age.  I wish I could go back and have those years back.  I would do things very differently.  I would have taken time to enjoy who she was in the moment and not who I thought she should be.

Tuesday, July 13, 2010

Prepared

We finished day 2 of summer school today and all is going well.  Oliver is happy to be back among his classmates and with his old teacher.  I have heard he was quite excited for circle time and music.  The assistant in his class worked with him last summer.  She was so impressed to see how much he enjoys school...not like last summer when he cried almost the entire time.  Wavey is in an entirely new school setting.  Her teacher said she was very happy and the bus driver told us she giggles the entire way home.  That's my girl!

The big pink wheelchair is still sitting in the corner, with tags attached.  I kind of want to return it, as if returning it will hold off the inevitable.  Wavey is still walking fairly well, but she tires so quickly and cannot walk without the support of an adult.  She is also having difficulty with the bus stairs.  We know it is only a matter of time before the school requires her to use the lift for liability reasons.  Her new chair is bus tie down ready, so we are prepared when that time comes.

Prepared...I am not sure if that is actually possible.

Monday, July 12, 2010

Proud Owners of a Wheelchair


After months and months of waiting, Waverly's wheelchair was delivered today.  It is bright pink and so pretty.  She enjoyed sitting in it, except when we tried out the tilt function.  She does not like being laid back when she is awake - it scares her.  We had such a difficult time choosing the most appropriate chair for her.  She was too big for most of the less involved special needs strollers, so we thought we would get this one knowing she will eventually need all of the bells and whistles.  It does fold, like a very large stroller and it comes with a nice travel duffle bag for trips.  It has a little tote bag attached to the back for carrying diapers and snacks.  It is "tie down read", so she will be able to use it on the bus.  Once she begins to have more difficulty with the bus stairs, she will be transported to school in her chair.  It has lots of support functions for her head, torso and hips.  It also has an attachable tray and canopy.  Everything one could want for comfort and transport.

So why am I so sad?  I have spent the last hour staring at it.  This bright pink reminder of what is to come.  It has not been an easy day.

However, I am so thankful that we have insurance to pay for such an expensive piece of equipment.  This chair costs more than my first car (Thanks for the deal, Dan!)  I think it is a smoother ride than the Omni, too.  






Saturday, July 10, 2010

What To Say

A few days ago, I was at the playground with the kids.  Oliver was in a swing and Waverly was in her stroller, chewing on her tube.  A little girl, probably 5 or 6 years old, had been watching us throughout the afternoon.  She came over and asked me why Wavey was in a stroller.  I explained that she has trouble walking, so we have a special chair for her to ride in when her legs get tired.  She then asked why Wavey was chewing on a toy.  Umm, that is a special toy made specifically for her to chew on.  She then thought for a moment and asked me, "Is she a baby or a big girl?".  Good question!  I thought that was so insightful and said with total childlike curiosity.  However, I did not know how to answer her.  It just stood there smiling and stammering.  I have such a difficult time explaining Sanfilippo to kids.  

A few friends who have young kids have asked me how they can explain Waverly & Oliver's disease to their children.  The MPS Society prints a book for siblings about my brother/sister has Sanfilippo.  My sister read through it with my niece and nephew and found it helpful.  Another friend of mine got a book from the library written for children about kids with special needs.  She read through the book with them, before they met Waverly & Oliver.  They responded so sweetly to my kids and I have to credit Katie's thoughtfulness in educating her kids in preparation.

One thing I always try to make clear is that Waverly & Oliver's brains don't work properly and it is not contagious.  You cannot *catch it* from being around them.  I also think that when kids are given an opportunity to help, it allows them to feel compassion and responsibility for Wavey & Oli.  Finding a favorite toy, bringing a book or handing a cracker can bring smiles and the ability to relax.

I also think it is important to talk about kids they come in contact with who are "different".  It is the unknown that is scary.

Friday, July 9, 2010

Good Doctors and Schools

The kids and I ventured down to Children's Hospital early this morning.  They are both scheduled to have an ABR (sedated hearing test) in a few weeks.  When we were at UNC a few weeks ago, we were told they each had a lot of wax in their ears that needed to be removed for an accurate result.  Unfortunately, wax build up in a common problem for people who wear hearing aids.  Our ENT is fantastic, but very busy.  I sent him an email earlier this week asking if there was any way he could fit us into his busy schedule.  I received a response within an hour - love that - saying he could squeeze us in this morning.  Waverly's ears were actually clear, but Oliver's needed to be cleaned.  We had to strap him down and burrito him for a few minutes.  He screamed the entire time, but quickly recovered as soon as I picked him up.  All in all a very successful trip.

I also have everything set for Waverly & Oliver to attend their extended school year summer program.  They will have 4 weeks of morning activities.  Oliver will be with his old teacher and in his old classroom, so he will have an easy transition.  Wavey will be in an entirely new surrounding, but she typically adapts well.  I am going to enjoy having a few hours to myself each morning.  We can't wait!

Wednesday, July 7, 2010

Waverly & PapPap


We visited with my grandparents over the weekend.  I love this one of Wavey and her great-grandfather.  He loves her so much.

Hot

Life many of you in the northeast, it has been unbelievably hot and humid.  We have spent a lot of time indoors the past few days.  Waverly does not tolerate the high temperatures very well (she is like her mommy). 

We went to my parents' house for July 4th.  The kids love seeing Grandma and Grandpa.  Matt and I love the chance to take in a movie.  We were able to see a wonderful fireworks show and get together with family.  Oliver loves the little baby pool set up on the patio.  He doesn't like to sit in the water, but enjoys stepping in and out of it.

The kids had a full day of therapy yesterday.  They are both doing well.  Wavey is most definitely losing some mobility.  She has a very difficult time getting up from the floor if she is laying down.  She will also crawl over to the piece of furniture to help her stand.  Oliver's core is very weak.  His therapists are working to strengthen his abs, but he does not like it.  I hear a lot of crying while I am in the waiting room.

Oliver wasn't feeling well last night - a bit of a stomach bug.  He seems better today, but we will be spending in the day inside, taking in slow.  Plus, spending time in an air conditioned apartment sounds like a great idea on a 100+ degree day.

Thursday, July 1, 2010

Lovely Day For A Picnic

What a beautiful day to be outside.  June has been so oppressively hot, this cooler and not humid weather is ideal.  Oliver was supposed to have a cardiology appointment this morning, but they called last night to reschedule.  Matt was off for the morning and we had a free day, so we packed up the kids and headed to our favorite playground for some playtime and a picnic.  This particular park has a carousel.  Both kids enjoy riding it, but Oliver *loves* it.  It typically takes him a bit to realize it is there, because he is so excited by the playground itself.  However, once he notices it he is unable to do anything but circle the gate surrounding it.  Waverly rode the zebra and Oliver rode a horse.  He loved every moment of it.  Then it was off for a picnic lunch.  After lunch, we walked the nature trail before heading home.  What a perfect day.