Meet the McNeil Family

Meet the McNeil Family

Saturday, February 27, 2010

Happy Birthday, Ava!!

We went to my cousin's daughter's first birthday celebration this afternoon.  She is adorable and hosted quite a party.  Waverly loves a good birthday party, so she had a blast with the party hats, balloons, birthday cake, and singing "Happy Birthday" to Ava.  Oliver slept through most of it, but was able to come in for cake - his favorite part.  He was so happy and personable, running around the room getting people to hug each other (Yes.  He actually grabs 2 people and forces them to hug.  He is my little peace maker.)  Here are a few photos from our afternoon.










Like any event with our kids something always happens to remind you that life is a little different with Sanfilippo.  Both kids had horrendous blowouts.  Fortunately, I am always prepared with extras for Waverly.  However, Oliver hardly ever needs a change of clothes and I neglected to bring any along.   There were no kids around his size, so my cousin's husband gave Oliver one of his thermal tees.  He was quite a sight in a way-too-big tee, with sleeves rolled up and looking like a tent dress and his sneakers.  He could care less and went running around the party as if nothing happened.  That's my boy!

Friday, February 26, 2010

Good Day

A few highlights from my day:
*Oliver signed "fish" when he saw a fish on Dora the Explorer (he loves her!)
*Waverly helped me clean tonight, by holding my hand as I vacuumed
It's the simple things.


Thursday, February 25, 2010

Our Little Bookworm

I woke up this morning at 4 am wondering where Waverly was.  She has typically woken up by this point and come into our room.  When Matt went in to check on her (because my ankle is still not working properly), he found her asleep in the middle of her bedroom floor surrounded by books.  We often will know she is awake because we hear books being pulled off the shelf and pages turned.  Some how we both slept right through it last night.  And she must have been so tired she didn't come into our room, instead choosing to curl up on the floor with her lambie.  Matt brought her into our bed and thankfully she went right back to sleep.

Wednesday, February 24, 2010

Zzz....

Sanfilippo has a way of constantly changing things up, just when you think you have settled into a routine.  We never know what is coming around the next bend in the road.   

Waverly has been great the past few days.  Yesterday she was singing songs that we haven't heard for months - the Winnie the Pooh theme song and "Happy Birthday".  She has also been incredibly interested in her books.  Her school is having a Read-a-Thon, so we have been pulling out all of the old classics.  She will sit through multiple books, giggling at the parts that used to make her laugh.  

Of course, she has also decided that sleep isn't necessary.  We haven't had the severe sleep issues that many families who have children with Sanfilippo have faced.  Wavey went through some phases, but the past 2 years she has consistently woken up once in the middle of the night and then will go back to sleep.  Falling asleep was always difficult for her, but once we introduced Melatonin into our nighttime routine, she has been asleep within 20 minutes on average.  That is, of course, until the past few days.  It took us over 90 minutes to get her to fall asleep last night and the past 2 days she woke up at 4:45 am, eager to start her day.  I am not sure if this is a bump in the road or a whole new phase in this disease.

Monday, February 22, 2010

Ideas?

I need your help.  MPS Awareness Day is coming up in a few months.  Last year I made hundreds of purple ribbons to give out to Matt's coworkers and at Waverly's school.  I also ordered a bunch of purple lollypops to hand out and I put stickers on them with the MPS Society's website.  Some people donated money for the items and we were able to donate it to the MPS Society.  I would like to do something similar this year at Matt's job and the kids' schools.  Any ideas???

Slight Fracture

Sometimes Matt's crazy schedule comes in handy.  Thankfully, he had off today.  He got the kids dressed, fed and on the bus this morning.  Then he helped me hobble to the doctor.  The swelling hadn't gone down overnight and it still hurt.  The doctor thought it was a severe sprain, but she took some x-rays just to be sure.  A few hours later she called to say there was a "slight fracture", in addition to the sprain.  She estimates it will take a good 3-6 weeks to get back on my feet.  That is just not possible - too much to do!

Today was a reminder that Matt is incredible.  He totally took care of the kids all day.  This is not unusual - he is such an involved dad.  However, he also had to take care of me.  The apartment is messier than usual, but the kids sure had a fun afternoon and evening with Daddy.  He got out the mini-trampoline for Oliver, who is now able to jump all on his own.  *Proud*

Sunday, February 21, 2010

Please Help

They have set up a page to assist Ciara's family with medical and travel expenses.  Please click HERE to donate to the Bennett Family.  They are a lovely family and in need of some assistance.  Thank you!!

Ouch!!

***Please continue to pray for Ciara.  She is currently on a C-Pap and if they don't see any improvement they will have to intubate her and put her on a ventilator.***

We had the pleasure of meeting my sister and her family for lunch today.  They live in upstate NY, but they were driving through DC.  It was a wonderful surprise.  Waverly is always thrilled to see her cousins. Then we took the kids down to the Natural History Museum.  Oliver loves running around in the stuffed mammal room.  This visit he was much less interested in the animals.  He loved the TVs embedded in the floors and light-up signs.

I am a total klutz, so as were we loading up the kids in the car I rolled my ankle on a dip in the street.  It is incredibly swollen, but I think it is simply a sprain.  Thankfully Matt is a *Super Dad* and took care of everything tonight.  He is off tomorrow, so he can help get the kids off to school in the morning.  I hope by tomorrow I will be able to put weight on my ankle again.

Friday, February 19, 2010

Sweet Ciara

In December Waverly & I went to the MPS Conference in FL.  We had the opportunity to meet the Bennett family.  They are parents to 3 children with Sanfilippo.  Their youngest passed away a few years ago due to complications from transplant.  Ciara is 13 and Hunter is 11.  Every time I saw Alicia and her husband with the kids, I thought of my future.  It was very emotional for me.

Sweet Ciara is in the hospital.  She is in critical condition in the ICU.  She has pneumonia and requires oxygen.  This is a serious illness for anyone, but complicated even more by MPS.  Please keep Ciara and her family in your prayers.  Ciara has a very special place in my heart.  I see Waverly in her.

The family is traveling back and forth from the hospital and the expenses are getting high.  If you are interested in helping this fantastic family, please let me know and I can give you details on making an easy and quick donation via PayPal.

*Thank you*

Thursday, February 18, 2010

Clap Your Hands

Oliver's class had their Valentine's Day party this morning.  The parents were invited to come in and celebrate with the kids.  I had to run a few errands, so I was a bit late.  I arrived during the end of music - Oliver's favorite part of the school day.  They were singing "If You're Happy and You Know It".  (Oli's favorite song.)  He was clapping and dancing and gave me a HUGE smile when he realized I walked in.  *precious*  Next we opened his Valentine mailbox and went through all of the cards.  He was mostly interested in the candy.  The kids played for awhile and then it was lunch time.  Oli was thrilled with the heart shaped cookies covered in sprinkles.

He still doesn't interact with the other kids very much.  I remember seeing the same behavior in Waverly at this age.  I couldn't figure out why she preferred to sit and watch the other kids, instead of joining in to play.  Even though these changes are expected due to Sanfilippo's progression, they are still difficult to witness.

I took Waverly to see a GI doctor today.  We have never needed one before, but I am so glad we are forming a relationship with one now.  He is going to become a valuable part of her medical team.  Her recent illness has seemed to disappear, but there were a few other concerns he wanted to address - mainly chronic diarrhea.  She is going to have an upper GI done to rule out any issues.  He also suggested a few other remedies we can try.  We aren't necessarily worried that there is a problem, but we would love to improve her quality of life.  Unfortunately, runny poop multiple times per day does not make for a fun day.

Tuesday, February 16, 2010

Back to Normal

*Hooray*
School is back in session.  Waverly was there today and both kids will be in class tomorrow.  I think Wavey had a great day with her teachers and classmates.  She was exhausted tonight and fell asleep in record time.  Oliver will have a more difficult time adjusting to the bus rides and structure of preschool, but hopefully he will remember how much fun it can be.

I spoke with Wavey's ENT today.  We have decided to move forward with having her tonsils and adenoids removed.  Surgery is scheduled for the beginning of March.  The recovery is not going to be easy for her, but I think her sleep and breathing will be much improved.  We are also hoping to see some benefit with her drooling and choking issues.  Of course, this means about 10 days out of school....but it should be worth it.

Monday, February 15, 2010

Can It Be?!

Are the snow days finally over?  The kids had ANOTHER snow day today.  It was first on the schedule as a day off in honor of President's Day.  However, due to the massive snow falls and snow days, they decided to bring the kids in for school. Only to cancel it once again last night.  We haven't had any new snow, but there is so much of it that everyone is worried for the kids' safety.  The snow piles are 10-12 feet tall and it is so difficult to see when you are making a turn.  Plus there are a number of people who aren't shoveling and there are still roads yet to be adequately plowed.  I realize this was a record setting snowfall, but I am surprised how long it is taking to get back to normal.  We are all desperate to get on our schedule again.  Wavey has hardly been to school since mid-December due to snow and illness.  I think she has been 5 days in almost 2 months.  They have already called for a 2 hour delay tomorrow, which means no school for Oliver.  I hope Wavey is able to go in.  I know she misses her classmates and teachers.

Sunday, February 14, 2010

Local Press

A local reporter wrote a wonderful article about the kids, Sanfilippo and "A Hundred for a Home".  It was published in some of our local neighborhood papers.  We were in 2 papers this week and will be in one more next week.  There is also a wonderful photo of Waverly & Oliver.  If you are interested in reading it click HERE.  Choose the "Centre View North" option and download via Adobe PDF.  The story is on pages 4 & 5.

Friday, February 12, 2010

Digging Out

I finally ventured out with the kids today.  Waverly had a doctor appointment this morning with physical medicine.  Navigating the huge piles of snow, with 2 kids who have zero understanding of ice/slipping is not easy.  Oliver fell twice and Waverly's shoes & pants were covered in snow by the time we made it to the car.  Whew!!  I really need to get them snow boots.

Wavey's appointment went well.  She had her hip x-rayed and there were no changes.  This was very good news, because the PT was worried her hip was causing her trouble and possibly pain.  We did not want to start having hip problems already.  Her walking is still relatively good, albeit unstable.  She needs to get new AFOs (orthotics) and I already made an appointment to have them cast in March.  We were also given a prescription for a wheelchair.  Wavey is too big for her MacLaren special needs stroller.  And Oliver is about ready to move into it.  We need to get her something bigger.  I will begin the process of dealing with the medical equipment folks to get this approved by insurance.  Hopefully we will have it by summer.

Wednesday, February 10, 2010

Baby Stroller

Oliver found Waverly's baby doll and stroller last night.  She used to spend hours walking her baby around, giving her a bottle, feeding her and playing pretend.  She even had a little diaper bag she would carry around.  Oliver was quite excited, since he loves to push his own stroller.  I was able to snap of few photos of Oli taking the baby doll for a spin.  Today Wavey saw it and started pushing it around.  I quickly grabbed my camera and I was able take some pictures.  I LOVE her smile!!  She was so happy and I think she remembered how much joy this little toy brought her.








Monday, February 8, 2010

Stir Crazy

Today was day 4 of being semi-snowed in.  I was able to venture out to the grocery store this afternoon.  They are predicting another snow storm tomorrow that could bring another 10-20 inches.  I am not sure how this city is going to handle another large scale storm.  School is already canceled through Wednesday and I am sure they will end up canceling the entire week.  The side roads are still pretty bad and the snow piles are gigantic.  Matt had to work all weekend and was driving back and forth in the mess.  Thankfully, he has off the next 2 days so we can all be snowed in together.

Today we watched "The Fox and the Hound".  I love that movie, but I avoid it because it always makes me cry.  Today was no exception.  I am trying to be diligent about introducing Oliver to new movies.  Waverly watches the same handful of movies over and over again.  Whatever she loved at age 3 are her favorites still today.  I figure we need to expand Oliver's repertoire.  He seemed to enjoy the movie and would watch parts of it in the midst of playing.

Wavey is definitely going a little stir crazy.  Thankfully she has PT and OT tomorrow, so we can get out of the house and move about.  Being stuck inside seems most difficult for her.  Oliver is content playing with toys.  Waverly doesn't really play much anymore, she would rather be walking.

Sunday, February 7, 2010

Blizzard of 2010

The flakes has finally stopped falling and we ended up with well over 2 feet snow.  It is beautiful.  We took the kids out to play this morning.  The sun was shining and it wasn't too cold.  We first put them in the buggy and walked down to the grocery store for a few items.  Then we let the kids run around.  Waverly wasn't too interested in the snow, she was simply excited to be outside walking again.  Oliver is very interested, but refuses to keep his gloves on.  Then he cries because his hands are wet and cold.  Needless to say, we didn't spend a lot of time outside.

I was able to take a few photos.  The first is Oliver sitting on a huge pile of snow (notice the street signs in the corner).  The second photo is Matt and the kids sitting in the snow pile in Matt's parking spot.  I am not sure where he is going to park his car for the next few weeks.

There is just so much snow and no place to put it.  They have already cancelled school tomorrow and I have a feeling they may be out for most of the week.  There is just no way the school buses can navigate the neighborhoods.   This may end up being a very long week.




Friday, February 5, 2010

I Am the Child

I Am the Child


I am the child who cannot talk.
You often pity me, I see it in your eyes.
You wonder how much I am aware of - I see that as well.
I am aware of much - whether you are happy or sad or fearful,
patient or impatient, full of love and desire,
or if you are just doing your duty by me.
I marvel at your frustration, knowing mine to be far greater,
for I cannot express myself or my needs as you do.
You cannot conceive my isolation, so complete it is at times.
I do not gift you with clever conversation, cute remarks to be laughed over and repeated.
I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world about me.
I do not give you rewards as defined by the world's standards -
great strides in development that you can credit yourself.
I do not give you understanding as you know it.
What I give you is so much more valuable - I give you instead opportunities.
Opportunities to discover the depth of your character, not mine;
the depth of your love, your commitment, your patience, your abilities;
the opportunity to explore your spirit more deeply than you imagined possible.
I drive you further than you would ever go on your own,
working harder, seeking answers to your many questions with no answers.
I am the child who cannot talk.
I am the child who cannot walk.
The world seems to pass me by.
You see the longing in my eyes to get out of this chair,
to run and play like other children.
There is much you take for granted.
I want the toys on the shelf, I need to go to the bathroom, oh I've dropped my fork again.
I am dependant on you in these ways.
My gift to you is to make you more aware of your great fortune,
your healthy back and legs, your ability to do for yourself.
Sometimes people appear not to notice me; I always notice them.
I feel not so much envy as desire, desire to stand upright,
to put one foot in front of the other, to be independent.
I give you awareness.
I am the child who cannot walk.
I am the child who is mentally impaired.
I don't learn easily, if you judge me by the world's measuring stick,
what I do know is infinite joy in simple things.
I am not burdened as you are with the strifes and conflicts of a more complicated life.
My gift to you is to grant you the freedom to enjoy things as a child,
to teach you how much your arms around me mean,
to give you love.
I give you the gift of simplicity.
I am the child who is mentally impaired.
I am the disabled child.
I am your teacher.
If you allow me, I will teach you what is really important in life.
I will give you and teach you unconditional love.
I gift you with my innocent trust, my dependency upon you.
I teach you about how precious this life is and about not taking things for granted.
I teach you about forgetting your own needs and desires and dreams.
I teach you giving.
Most of all I teach you hope and faith.
I am the disabled child.

- Author Unknown

Thursday, February 4, 2010

Cute Boy


I took this photo of Oliver tonight.  I think he looks so cute sitting with his legs stretched out holding his Magna-Doodle.  Of course, he is starting to put everything in his mouth.  This is the same age Waverly started that behavior.

We are due to get 24+ inches of snow tomorrow and Saturday.  Like everyone else, I had my frantic run to the grocery store in case we are snowed in for a month.  (Why do we do that?!)  I also spent way too much time shopping for a snow shovel.  The last huge snow we didn't have one on hand and digging out the cars was a nightmare.  This time, we are prepared.  School is already cancelled for tomorrow.  Let the long weekend begin!  (Too bad Matt still has to work.)

Wednesday, February 3, 2010

*s*n*o*w*d*a*y*

We got another 6 inches of snow last night, so no school today.  Oliver is still getting over a cold and Waverly was sick again last night.  We spent the entire morning in our pjs watching Playhouse Disney and playing with every toy Oliver could find.  It was a nice day.  It looks like we are going to have a few more snow days coming our way.  They are predicting we will get another 20 inches Friday - Saturday.

Today I spent time corresponding with other MPS families.  There is a lot of discussion involving fundraising for Sanfilippo research.  A group of families has started a non-profit with the sole intent of funding research.  I think it is a great idea.  If any of you have seen the movie "Extraordinary Measures", you know that parents can play a vital part in getting money into the hands of researchers.  So few people are afflicted with Sanfilippo, many pharmaceutical companies do not pursue research because it is not profitable for them.  Sanfilippo has the additional hurdle of the blood brain barrier - the body's defense system to keep the brain safe, also prohibits helpful medicine/enzymes/proteins from reaching the affected areas.  The hope is that families can individually raise money to fund research that could provide a viable treatment option and hopefully a cure.  

There are many individual families that raise money - some have their own non-profit organizations to provide grants to researchers and some use the money to provide financial assistance to MPS families.  We also have the MPS Society.  They host an annual conference, publish a magazine with relevant articles and information, connect families, provide financial assistance to families for equipment or other medical needs and they give out research grants.

I am trying to make the most informed decision and in the midst of asking questions, people were offended.  It was never my intention to hurt someone's feelings.  For those of you who know me, confrontation is something I avoid at all costs.  Emotions run high when you have 50 MPS families all weighing in, and how could they not.  We are all under an incredible amount of stress.  We all want to save these children.  And we all have different ideas of how to go about finding a cure.

My hope is that in all of the words that were said today, we could all step away and figure out how we can be more effective.  I know I am trying to decide how I can become involved.  I would love to host a fundraiser, I simply need to come up with a good idea for one.

In a perfect world, I wish we could all work together towards one common purpose.  We could be such a powerful force for change.  Instead, I think we will have a few dedicated groups working their hardest to fund the necessary research so we can find a cure.  Ultimately, that is what we all want.

Tuesday, February 2, 2010

My Little Painter

Oliver's teacher sent me this photo last week.  I adore it.  I cannot adequately explain how precious this photo is to me.  Here is my little boy sitting so nicely, participating in a class activity, and enjoying it.  Waverly used to love to color and paint.  Now Oliver is developing the same love for painting.  


Monday, February 1, 2010

TGIF (Thank God It's February)

February has finally arrived and I hope this month is a better one.  (Of course, Oliver did wake up with a terrible cold.)  I spoke with Waverly's pediatrician this evening.  Her blood tests came back and there wasn't anything alarming or able to give cause for her illness the past few weeks.  Her liver enzymes were elevated, but that is typical with MPS.  The other ones were elevated as confirmation that her body was fighting off something.  There are a few more tests pending.  Waverly has been fine the past few days.  This is what has been occurring though, sick for 48 hours and then fine for days until it strikes again.  I hope this last time was *the* last time.

Waverly had some hip x-rays taken today.  Both her PT and Physical Medicine doctor were concerned about her right hip turning in and causing her foot to turn in significantly.  I am awaiting a call or email from the physical med doc on what to do next.

Oliver had an appointment with Physical Medicine last week.  His left foot is beginning to turn in slightly.  It is noticeable, but the doctor felt he could go another 6 month without any intervention, i.e. AFOs/orthotics.  I was so happy to get that news.  The AFOs have been a huge help to Waverly, but I am simply not ready to see Oliver in them yet.  The PT and I will just have to continue to work on his ankles and range of motion.

Our other consideration is salivary glands.  Waverly drools a lot, especially since she is constantly chewing her necklace or tube.  The PM doc suggested we speak to our ENT about tying off or excising a few of her salivary glands in the bottom of her mouth.  She will still provide adequate saliva, but it will reduce the amount and help with choking.  She does tend to choke on it and it is happening more often during the night.  That scares me.  I wrote our ENT this afternoon to see if we could discuss this.  We are already talking about having her adenoids and tonsils removed.

Wow.  That was a lot of medical updating, but I wanted to let you know what has been going on in our lives.  These kids like to keep us busy with doctor appointments.

I have been incredibly down lately.  The cold weather, inability to have outdoor time, illnesses have all been factors.  But sometimes the heaviness of what we are facing seems too much to bear.  Seeing the changes in Oliver, no matter how subtle, are huge neon signs that he has Sanfilippo and it is rearing its ugly head.  I feel a bit lost.  We have been in VA for about 1.5 years and I still don't feel like this is "home".  We haven't found a group of friends or community.  Apartment living isn't conducive for meeting neighbors and forming relationships.  Returning to work or continuing education both seem near impossible at this stage with the kids.  One of them is constantly sick, has a therapy appointment, doctor appointment...I just don't know how I could have a structured schedule.

This isn't a "woe is me" post.  I am just trying to state how I am feeling in the moment.  And in the moment I am sad.  I am trying to figure out how to get my life back on track in a way that Sanflippo doesn't have so much control.  It dominates all parts of our lives and I don't want it to have such power over us.