Meet the McNeil Family

Meet the McNeil Family

Friday, October 31, 2008

Happy Halloween!!!

Here is Oliver dressed up as Goofy.

They didn't do a very good job trick-or-treating and we only had 1 kid come to the apartment for candy.  So, next year we will have to come up with a new plan.

A rare shot of both kids together and looking in the camera's direction.

A very excited Oli after we put him in his costume for the first time.

Happy Halloween!!!

Waverly is Minnie Mouse today.  I took this photo just before she left for school.  They were going to have a costume parade and go trick-or-treating around the school.  I will post more photos later tonight, after we return from our Halloween festivities.  Oliver is going to be Goofy.

Thursday, October 30, 2008

Time

It has been such a difficult week for me.  I knew that settling into life here in Virginia would bring up a lot of emotions.  I think entering into November is also going to be tough.  This will be our first holiday/birthday season since the kids were diagnosed.  Waverly will turn 5 in a few weeks, Matt and I each celebrate birthdays, Thanksgiving, Christmas and then Oliver will be 2.  Marking the end of a year is scary now.  It means time is flying by and the time I have with Waverly & Oliver is slipping away.

Wednesday, October 29, 2008

Tough Day

I had a tough day.  My emotions got the better of me and I was so lonely & depressed.  I still am.  But, I felt love and support from my friends.  I needed that.  I also laughed hard with my friend, Kam.

I took these photos of Oliver this afternoon after physical therapy.  I love how cute he looks sitting at the table playing with his bricks.


I especially like how cute he looks screaming for help while standing in the bucket of bricks.

Tuesday, October 28, 2008

It Still Fits!

Waverly and Oliver sitting in our courtyard.  (It is next to impossible to get them both looking at the camera while smiling.  This is the best I could do this afternoon.)

Oliver walking to the bus stop.

Oliver can still fit into my favorite hat.  It is so cute and he can't pull it off.  Here we are getting ready to get Wavey from the bus stop.

Neuro

I think I spend most of my time driving to, waiting for, attending or arranging doctor appointments and therapy sessions.  But, I do not mind.  Having such a great team of people working with our family makes life easier.

Today we met with our new neurologist.  Once again, I think we have found a doctor that clicks with all of us.  He was kind and thorough.  He is referring us to an orthopedic doctor.  They want to check the kids' spines and work with Waverly's leg.  Her right foot is really turning in and without some type of intervention, she could damage her muscles.

I also wanted to take a moment to thank all of you who have visited the website www.ahundredforahome.com.  And thank you to Kamarah & Michele for organizing it, Megan for creating the website and Laura for managing the facebook cause.  I am amazed and inspired by your love for my children.

Monday, October 27, 2008

Cardio

Good news.  We took both kids to Children's this morning to meet with a cardiologist.  Kids with Sanfilippo sometimes have heart problems, so our geneticist recommended forming a relationship with one and getting a baseline.  It was a great appointment.  Our doctor was wonderful.  Both kids had blood pressures taken, an EKG and an Echocardiogram done.  (Much more thorough exam than I was expecting.)  The doctor didn't see anything to cause concern - everything looked good.  Whew.  Oliver had a lot of heart and lung issues at birth and he had some elevated blood pressure issues, but everything is fine now.

Tomorrow we will meet with our neurologist - again just to form a relationship and get a preliminary exam.

In other news, Oliver has really started to improve in signing.  He actually used 2 signs together last night - "want" and "eat".  (Most of his signs revolve around food.)  He now has about 8 signs in his vocabulary.  I am so proud of him.  It is sad that in the midst of celebrating his accomplishments, Matt and I can only think that in a few short years we will begin to see all that he has gained disappear.  But the more we can teach him today, the more difficult it will be for Sanfilippo to take away.

Sunday, October 26, 2008

Keeping Busy

This has been a very busy weekend for our family.  Our friends, Michele and Kamarah, launched a fundraiser for our family called "A Hundred for a Home".  (You can find out more at www.ahundredforahome.com)  Matt and I have been amazed by their love for our kids and their dedication to finding a way to help.  We are overwhelmed by the responses from friends, family and strangers.  It is difficult to even begin to express our gratitude.  

My parents were down this weekend.  We finally have things on the walls (thanks Al!) and the kids had a ball with Grandma & Grandpa.  We were also able to have breakfast with another foreign service family who have become our friends.

Today we drove out to Loudon County Virginia for a photo shoot for the kids.  Some friends of ours arranged to have a photographer capture some outdoor photos of the kids in the fall leaves.  I think she was able to get some great shots of everyone.  I can't wait to see them!!  We had so much fun running around the field in the leaves.  Waverly was in her element.  I hope to share some of the photos soon.

Friday, October 24, 2008

A Hundred For A Home

My name is Kamarah and my college roommate, Michele, and I are close friends of Shannon's - we went to school together at Taylor University.

As the last year has progressed and we have learned of the diagnosis of Oliver and Waverly, Michele and I have been burdened to figure out how we can help Matt and Shannon.  In one conversation I had with Shannon, she expressed her and Matt's desire to buy a house and make it a comfortable home for their family.  However, due to the high cost of living in Northern Virginia, affording a house is extremely difficult for them right now.  (As I's sure you know, they are currently in a  two bedroom apartment.)

So, Michele and I created an exciting opportunity for people to give in order to help Matt, Shannon, Waverly and Oliver....but we need your help!!!

It is called, "A Hundred for a Home".  The goal of this fundraiser is to ask as many people as possible (our goal is 4,000) people to each donate $100.  All of the money will go toward helping the McNeil's purchase a home, make necessary home modifications (to make it wheelchair accessible), as well as their out-of-pocket medical expenses.

Michele and I believe that Matt and Shannon's experience is a unique one and that people truly would like to be a part of helping them.

Please check out  www.ahundredforahome.com  for details.

Thursday, October 23, 2008

Video - Take One


So this is my first time trying to post video to my blog.  Here is my trial run.  This is a little clip of Waverly taken 2 years ago at our apartment in Arlington.  (Note the furniture was rented.  We did not choose to purchase that hideous chair.)  Waverly is screaming in excitement because Big Bird and Snuffy were about to come on the screen.  It cracks me up every time I see it.  I hope it makes you smile, too.

Remembering

I spent part of the afternoon reading through my blog.  I was reading back through March and April when the kids were diagnosed.  I remember those moments so clearly.  The emotions feel so near the surface, yet those days feel so far behind.

Matt is working on putting some of our video and photos from London into short video.  I am hoping to be able to post it on the blog when it is complete.  It is strange to see the photos of the kids before we knew they had a hidden horrible disease.

Today has been a sad day.

Wednesday, October 22, 2008

No Mouth

Yesterday, while Matt and Oliver were at the Natural History Museum, they were listening to a docent talk to kids about dinosaurs.  She was holding up a rock-like item and asked the kids what it was.  She handed it to Oliver to look at while the kids were guessing and then revealed it was petrified dinosaur poop.  In perfect timing, as soon as she said it was poop, Oliver tried to eat it.  The kids laughed, Matt cracked up and Oliver enjoyed the attention.  He is such a performer.  

Both kids had physical therapy this morning.  They both did great.  Waverly is warming up to her therapist and was so much better than last week.  I am really proud of both of them.

Tuesday, October 21, 2008

Swallow

We just got back from Children's Hospital.  Waverly had a swallowing study done.  She did a great job.  She was scared when they strapped her into a big chair.  She kept saying "boo boo hurt".  But she was calmed by the fact that I could stay there with her (big lead apron on).  The test went well.  She didn't have any trouble with anything except for the liquid, which is what we have witnessed.  She was able to swallow, it just took her longer.  There is no need to modify her diet or anything yet.  This will provide a good baseline for her next test.

Oliver spent the morning with Matt at the Natural History Museum.  He loved walking around the animal room.  They had a nice bonding time together.

Monday, October 20, 2008

Kindergarten

I had a meeting tonight at Waverly's school for all of the special education preschool parents who have kids moving into kindergarten next school year. The meeting itself was informative, but basic. Afterwards, I spoke with both Waverly's preschool teacher and the administrator who will handle her kindergarten placement. I was thrilled that Wavey's teacher confirmed what Matt and I are so adamant about, that Waverly will do much better in a smaller classroom with other special needs kids. Once we described Waverly to the administrator, she seemed to agree. I think this will make the transition into kindergarten much easier for all of us. I feel like a little bit of anxiety has been taken off my shoulders.

Moo!!!

This weekend was spent continuing to make the apartment feel like home.  We are close to finishing and I think that after my parent's help this weekend hanging up some shelves, mirrors and pictures, the place will look really nice.

Today, Wavey was off for a short day at school.  She was a bit nervous about the bus experience today.  There was a new driver and assistant.  Waverly works best with a familiar routine.  Oliver had a speech therapy session after lunch.  He did such a great job!!  He is now signing "more, finished, bubbles, puzzle, please" and he started signing "cow" today and trying to say "Moo".  It was wonderful to watch him learn and try to put it into practice.  

Priya, you would have been very proud of him.  Especially considering Wavey was so entertained whenever you would sign "cow".  I wish you could see him do it.  I will try to capture it in a photo.

Waverly is showing more difficulty with stairs.  She is stumbling as she descends them and keeps tripping at curbs.  The apartment we are in has an entrance/exit without stairs, so we are using that exclusively now.  She is still going up and down her little step stool in the bathroom which is nice to see.

Tomorrow I am taking her to Children's for a swallowing study.  Kids will Sanfilippo eventually lose the ability to chew and swallow.  She is showing some early signs of difficulty, so we are going to see someone for an evaluation.  It should be painless...although keeping her attention to the task and still is going to be quite a challenge.

Saturday, October 18, 2008

Photos

Here is a picture of the kids that I took today.  Wavey got a haircut last night.

Here is Wavey's side of the room.

Here is Oli's side of the room.

Their closet and books shelf.

Thursday, October 16, 2008

Feeling at Home

It was so nice to wake up in our new place this morning.  The kids slept fairly well, although Oli kept waking in the middle of the night.  I think he needs to get used to his new surroundings.  Otherwise, everyone is settling in nicely.

Matt got good news today at work.  He had applied for a year long position within the State Department beginning next summer and HE GOT IT!!  He is so good at what he does and I think the people around him can see that.  I am very proud of him.

Wednesday, October 15, 2008

We're Home

Well have finally moved into our apartment and said goodbye to Oakwood.  The kids' room is together and they are both loving their new room.  Oliver was so excited to have all of his toys back that he refused to take a nap.  He just wanted to see what was in each bin and play.  Waverly was very happy to have her bed and blankets back.  It is so good to be home.

This has been an incredibly busy week.  In addition to the move, we had a few doctor appointments.  Today we met with a pediatric opthalmologist.  Both kids are near sighted with astigmatism, but only Wavey requires glasses.  The doctor was concerned about the optic nerve in both kids.  They nerve was paler than he would like to see in children their age.  We will go back in 6 months so he can continue to monitor this.  I am trying not to get too concerned about this.  There is so much to worry about...I can't handle yet another thing.

Monday, October 13, 2008

Coming Together

The new apartment is coming together.  Matt took the lead this morning with the movers and I stayed back in our current apartment with the kids.  He was able to have the movers take things away that we didn't need and he took our 3rd truck load of stuff to GoodWill.  There is a lot of work still to be done, but it is coming together and we feel like we will definitely be able to move in on Wednesday.

Tonight we moved most of the things from the kids' room over to the new place.  Tonight I hope to pack up our bedroom and the kids' toys; Matt is concentrating on putting Wavey's new bed together.  I am so thankful that we have the overlap with our 2 places for a few days.  It gives us a chance to make the new place homey and safe before the kids move in.

It is small, but we hope our friends will come for a visit.  We would love to have you.

Sunday, October 12, 2008

Slowly

We have most of the things sorted from London.  The apartment is slowly coming together - thanks to help from my family.  Tomorrow our things arrive from storage.  This is going to be the overwhelming stuff.  It is going to be an incredibly long day.

I am still crying.  I am still mourning.

Saturday, October 11, 2008

Emotional

I spent most of the afternoon and evening going through boxes in our new apartment.  I was very surprised how emotional I became while going through Waverly & Oliver's things.  I have a HUGE box of toys to give away.  They are wonderful toys, but just too advanced for the kids.  It is sad to know that my kids won't be able to play Candy Land or Chutes and Ladders like other kids their age.  There were coloring books that Waverly used a few years ago when she still enjoyed scribbling with her crayons.  She can't even hold a crayon anymore.  There were dolls that she would pretend to feed and take care of.  There were baby clothes, a swing, bouncy seats, a Baby Bjorn, so many things that gave us so many memories.

I went back to the apartment late tonight, by myself.  I needed to let out more tears.  I needed to mourn.  I have been waiting for the reality to hit me and tonight it finally did.  I think this is going to be a much more difficult process than I imagined - emotionally speaking.

Friday, October 10, 2008

Moving Day

The movers have arrived.  All of our items from London are being unloaded into our new apartment.  Today should be an easy day of unpacking and organizing everything.  We really like our new place - although I am not sure how we are going to fit everything into a 2 bedroom.  But, we will make it work.  I think Goodwill will be getting a lot of wonderful items from our family this week.

On Monday all of our items arrive from the warehouse.  They have been in storage for over 2.5 years, since we packed out of our home in Columbus.  That is going to be a nightmare to go through.  Matt didn't like letting go of things, so I think we are going to have lots of donations and trash.

My Mom and step-dad are coming down to help us with the move.  It is going to be nice to have someone handy helping with all of the things we need to go in order to make the apartment safe for the kids.  And my Mom will love spending the time with the grandkids, so I can help unpack.

This weekend is our 10 year reunion from college.  A lot of our friends are gathering in a small town in Indiana to have a wonderful time together.  We wish we could be there!!  We are there in spirit.

Wednesday, October 8, 2008

Thank You, Rocco!!!

I wanted to publicly thank Rocco on my blog.  His parents know my cousin and decided to dedicate his first birthday to Waverly & Oliver.  His guests donated the money they would have spent on birthday gifts to my kids, to help with all of the additional costs involved in raising 2 kids with Sanfilippo.  What an incredible gift!!  Thank you so much for your generosity and for the generosity of your friends & family.  We are using the money to purchase a monitoring system, so we can keep an eye and ear on the kids while they are in their room.  Happy 1st Birthday, Rocco!!!

PT

This morning we had our first appointment with Waverly's physical therapist.  I am become quite picky with therapists & doctors.  If there isn't a good connection, I look for someone else.  It is too important to waste time frustrated with a poor relationship.  Today was our lucky day and we found a wonderful therapist.  I was thrilled with how she handled Waverly.  She played music and sang to soothe to her.  She had done research on Sanfilippo and came knowledgeable.  (That makes such a HUGE difference!!).  She was quite concerned with Wavey's right foot.  It is really beginning to turn in and is causing her difficulty with movement.  She recommended that we see a doctor of physical medicine at Children's.  Even in the midst of watching these terrible changes in Waverly's body, it is so comforting to have people working to help her adjust to the changes and make the transitions as pain-free as possible.  

Tuesday, October 7, 2008

Evaluate

I have talked a lot about perspective in my postings.  I have had such a dramatic shift, because of the diagnosis of Waverly & Oliver.  In many ways this new view has been a positive thing.  I am no longer shaken by the small things.  I compare everything to the kids.  I have realized that this is also having a negative impact on me.  My sense of compassion for others is waning.  I want people to step back and realize that all is not as bad as it could be.  That is totally unfair of me.

I am also jealous.  I see the "perfect" lives of those around me and I am sometimes overcome with envy.  I wish I had the healthy kids...the cute stories of new things they are saying...soccer games & t-ball.  I have friends having babies and I am so sad that I can't have that experience.

My friendships are dominated by my story and I feel removed from what is going on in your lives.

This isn't a post looking for answers.  Just wanted to share where I am today.

Monday, October 6, 2008

Found!

We went back to Children's tonight and found my house keys at the valet stand.  I think I scared the parking attendant because I started screaming in excitement when I saw them.  Yeah!!

Clean Teeth

We took both kids to the dentist today.  They are both still sick, but we weren't about to miss this appointment.  It took us too long to get in to see someone.  Waverly has a record of freaking out at the dentist and not getting anything done while we are there.  So, we went to see a pediatric dentist at Children's Hospital.  Kids with Sanfilippo tend to have poor teeth health and we were expecting the worse.  They were able to clean her teeth without needing to put her under and there were no issues.  She was traumatized by the experience, but it was quite quick and painless.  Oliver had a cleaning too.  He screamed, but what kids don't when they go to the dentist.  We had a big bill at the end of the morning (no dental insurance - we will have to fix that), but no issues that required further procedures.  Yippee!!

In other news, during our trip to the dentist I lost my apartment key.  We have looked everywhere and just can't find them.  I am hoping they turn up soon, or the apartment complex will charge us a small fortune to replace the locks.

Every time something goes well....

Saturday, October 4, 2008

Show Your Support

The MPS Society is currently selling car magnets.  You can purchase them through their website via this link: http://www.mpssociety.org/content/4208/MPS_Logo_Shop/  What a great way to show your support for MPS families and fund research to help find a cure.

Friday, October 3, 2008

Infected

The awful virus that just won't leave our house struck the kids once again.  Last night was terrible.  This morning was worse.  Matt stayed home for a few hours to help me get them to the doctor and get the house cleaned up from their "work".  It is going to be a long day and an even longer weekend.  I think our grand plans of attending various local fairs is off and we will spend the weekend inside (on a beautiful weekend!) tending to ill children.  Ah, the joys of parenting.

Thursday, October 2, 2008

Make-A-Wish

I just got the call from the Make-A-Wish foundation that Waverly is eligible for a wish.  It will still take anywhere from 6 months to a year to have her wish granted, but the process is in motion.  This is such a wonderful organization and I am so thankful for all of the work they do.

Recovering

Flu season has arrived and I think we were some of the first victims.  I am hoping that we are all on the mend and healing with come today.

It has been a stressful week.  I had to take Waverly to the pediatrician to make sure she didn't have an ear infection.  We have to be ultra-cautious because of her hearing loss.  No infection, but the doctor visit was awful.  Both kids screamed the ENTIRE time we were in the office.  Fortunately, when I checked in I told them that she has thrown up in the car on the way there (that is another yucky part of the day).  So they put us right in a room and the doc came in almost immediately.  I think they also wanted to be rid of the screamers and the frazzled mom.  I always feel so overwhelmed and embarrassed in those situations.  Every look from another parent makes me want to scream and tell them the kids' medical history.  I am trying to work on not caring and focusing my energy on keeping the kids happy and calm.  That is much easier said than done.

This month starts a flood of doctor appointments for us.  We are beginning to form relationships with specialists that will monitor the kids - neurologisits, cardiologists, ophamologists, ENTs, swallowing experts and pediatric dentists.  It is going to be a very long month juggling appointments, therapy and a move into our new apartment.  However, this is what I wanted.  I wanted to be in a place where I had the best medical care possible, close by and they could all share their information with one another.  They will stay with us through the good, the bad, and the unimaginable.  I am so excited to make a home for my family.  It will be small, but incredibly cosy and comfy for all of us.