Meet the McNeil Family

Meet the McNeil Family

Thursday, April 30, 2009

Orthotics Arrived

Waverly received her orthotics yesterday!!  We have been anxiously awaiting their arrival.  When we put them on her, she high stepped across the room laughing.  It was hysterical!  I put them on her this morning and she is tolerating them beautifully.  She hasn't tried taking them off yet.  I snapped this photo right after she put them on.  I love her smile.  Our hope is that they will help her feet straighten out and loosen her heel cord.  It is terribly tight and the source of a lot of her walking difficulties.

Wavey has also been sick since Saturday.  We went to the doctor yesterday and it is viral, just some type of cold bug going around.  Needless to say it has been a very long week.

Thus far, Oliver is still healthy.  His tonsils & adenoid surgery is scheduled for Tuesday, so we need him to stay healthy.  I really don't want to reschedule his surgery.  We are anxious to get it done and (hopefully) improve his sleeping and breathing.

Wavey's school has tired a 1:1 assistant for her.  She is a substitute teacher who works in special education.  She has spent time in Wavey's class and was excited to work with her.  I am looking forward to meeting her.  I am seriously overjoyed that Wavey will have someone dedicated to her needs in the classroom.  Not only will this free up the teacher to be available to the other students, but I won't worry about her safety as much.

Monday, April 27, 2009

Hi Ho Cherry-O

Waverly woke up with a fever and cold symptoms Saturday, so she spent the weekend indoors.  Oliver and I were able to head out to a birthday party in the evening and had a wonderful time celebrating Brayden's second birthday.  Yesterday we were able to run errands and I spent some time cleaning the kids' room.  Waverly has become such an intense chewer.  I went through the toys and got rid of some of her favorite items that just aren't safe (hard plastic, peeling paint, parts that can break off, etc).  I also did yet another baby proofing scan, to be sure we don't have any chokeables around.

We had been holding on to a few items that we just weren't able to part with during our last purge.  One of those things was the game Hi Ho Cherry-O.  Waverly LOVED this game.  When she was 3 she used to say "cherry-o" and bring the game to the table.  We would try to play, but she was never able to spin the spinner and she would often try to eat the cherries.  The game became such a point of frustration for me.  I just couldn't understand why she couldn't get it and why such a simple game was so difficult for her.  I used to dream of playing board games with my kids.  But every time we would try to play, I would end up having to put it away before we finished.  I held the box for a few minutes before I knew that I was able to let it go.  It is such a simple thing - donating a forgotten toy - but for me, it was one of those moments.  I was reminded of all of the changes in my sweet baby girl.  She never had the ability to understand the simple concept of spinning the arrow and counting out the cherries.  I feel guilt from my frustration and sadness in the dream lost.

Friday, April 24, 2009

Some Good News

This has been an incredibly busy 2 weeks.  We have had a bunch of doctor appointments, school visits and meetings.  Even though I am exhausted, I am excited to begin getting things into place for the 2009-2010 school year.  We still have IEP meetings to get through for both kids, but I am feeling very positive that things are going to work out.  Here are a few highlights from the last few weeks.
  • Waverly now has an FM system for use at school and home.  We are hoping that amplifying the sound will help her throughout her day.
  • Wavey's school has agreed to hire an assistant for Wavey within her preschool class.  We have been asking for this since September and I am thrilled.  I only wish it wouldn't have taken such a long time.
  • Oliver may be eligible to attend a summer preschool program through the school district.  He would be in a class with other kids who are hearing impaired (some have additional needs, like Oliver, too).
  • Wavey's Make-a-Wish trip is scheduled.  We will be heading to Disney World in October.  It is going to be an incredible trip!

Wednesday, April 22, 2009

We Missed It

I woke up this morning a little sad.  Today (I thought) was Oliver's 1 year diagnosis anniversary.  But when I checked my datebook from last year, I realized I missed it.  It was April 17th!  I have been confused with my emotions all day.  I am upset that I let such an important day in our lives slip by, but at the same time thankful that the day is behind me and I can continue on with my daily routine.

The waiting for Oliver's test results was terribly agonizing.  It was such a long 4 weeks and I called our doctor at CHoP every few days to make sure his test didn't come in without her knowledge.  (Thankfully she was VERY patient with me.)  She finally called my cell, first thing in the morning in Philly but lunchtime in London.  I was pushing Oli in the stroller and holding Waverly's hand.  We had just left her therapy session in Marylebone and we were crossing Oxford Street on our way to the embassy.  In my heart I knew he had it, but there was still a tiny part of me holding out hope.  The moment I heard her voice I knew and I collapsed, right there in front of Marks & Spencer.  I called Matt and he heard my sobs and knew.  I will never forget that day.

Monday, April 20, 2009

A Reminder

Today was a very emotional day for me.  Matt and I spent the morning visiting 2 school options for Waverly this fall.  She is technically starting kindergarten, so as we create her IEP we wanted to see the various class options that are available.  We already know that a mainstream classroom is not the best environment for her.  So we visited a self-contained class in an elementary school for children with moderate to severe special needs.  We also visited the Kilmer Center.  It is an incredible school exclusively for children with very severe disabilities.  

We knew going in that the Kilmer Center would most likely not be the best choice for Wavey next year, but we thought that down the road this would be a wonderful resource.  From the moment I walked in the Kilmer Center's front door I choked back the tears.  And as we took a tour with the principal and explored the different classes and met the students, I was overwhelmed by what the future holds for my kids.  The last classroom we visited contained the youngest students and I saw a little girl flapping her hand in just the same way as Waverly.  I burst into tears and I had to leave.  Wavey's preschool teacher accompanied us and she followed me out.  She gave me a big hug and said that she can't imagine how scary this is for us.

Moments later I saw my happy, smiling little girl.  She is still walking (although quite clumsily) and she is singing her beautiful songs.  She smiles and laughs all of the time.  She is such a happy little girl.  But I couldn't help but look ahead to all of the terrible changes in store and cry.

Sunday, April 19, 2009

Fun in the Sun


Here are just a few photos from our weekend.  The kids had a wonderful time enjoying the lovely spring weather.  I love this photo of Wavey - it is one of my new favorites!

Friday, April 17, 2009

Surgery

Another surgery is in Oliver's future.  He is going to have his tonsils and adenoids removed next month.  His adenoids are HUMUNGOUS.  In fact, our ENT couldn't get his scope past them to see into Oliver's throat.  Kids with MPS can sometimes have fatty pockets in their throat, which makes intubating them very dangerous.  He was hoping to get a good look today, so we can put together a plan.  Unfortunately that was unable to happen, so he is going to scope Oliver's throat the day of the surgery.  They will give Oliver a mild sedative to keep him calm during the procedure.  If we get the all clear, the surgery will go on as planned.  If not, we will move onto Plan B (not sure what that is yet).

I am just so thankful for an ENT who is familiar with all of the additional complicated issues surrounding MPS.  We feel like we are in such capable hands.

Thursday, April 16, 2009

Run Down

We spent the morning at Children's Hospital meeting with the metabolic doctor/geneticist who works with Waverly & Oliver.  She is wonderful!  She is incredibly accessible and always willing to answer a question or get us more information.  The kids are both doing well.  She was saddened by the changes to Waverly's legs and feet, but we are hopeful the orthotics will help.  She did have some disappointing news for us, she is leaving Children's and going to NIH.  There is a chance that we will still be able to see her at NIH, but we may have to transfer to a different specialist.  Sad.

Tomorrow we will be back at Children's for an ENT appointment for Oliver.  I know I mentioned a few posts ago that Oliver has severe sleep apnea.  I think we will most likely schedule a surgery to have his tonsils and adenoids taken out.  Several families has noticed much improvement after surgery.  We are hoping to see the same results.

I spent a morning this week visiting preschool options for Oliver.  Fairfax County offers so many choices for children with special needs, especially those with hearing losses.  Our therapists are actually hoping to get him into a summer school program, to prepare him for preschool and to give him the opportunity to be around his peers.  I am SO excited by that option.  Because of the regression associated with Sanfilippo, we want to to fill his little brain with as much knowledge and experience as possible.  The more he knows, the longer it will take the disease to destroy it.  That is our philosophy.

In other news, we think we have found a respite care worker to help me with the kids a few days a week.  She was with us for 2 days this week and Matt & I both really like her.  She was so hands on with the kids and it is evident that she really enjoys them.  I was able to go to the grocery store yesterday, while Oliver napped and she stayed with him.  What a treat!!  I am elated to have found someone that I trust.

Tuesday, April 14, 2009

New Addition

We are now the very proud owners of a minivan.  Last night, Matt put all of his negotiation classes into practice and we walked off the lot with a beautiful new van.  I have been having such a difficult time lifting both kids up into the Explorer.  And I have been dreaming of push button sliding doors to help get the kids into the car safely.  I just installed the car seats and we are ready to ride.

Sunday, April 12, 2009

Happy Easter


We spent the afternoon at the National Zoo.  We haven't been there since we moved back last summer.  It was such a sunny day, although a bit chilly.  We wanted to be outside and enjoy the sun.  The zoo was packed, so we spent most of our time walking the grounds and visiting the outdoor enclosures.  Oliver slept for most of our visit, but Waverly loved the crowds and walking the paths.  She did such a great job walking for an extended period of time - we were so proud of her.  I only took a few photos, but I thought this one was adorable of Waverly in front of the lion.

Friday, April 10, 2009

Old Friends

Last night I had the wonderful opportunity to meet up with some very dear friends.  We realized that we have known each other 20 years (gasp!).  2 of the girls are in LA and the other is in PA.  We were able to organize a one night event for all of us to get together, while the LA girls were visiting family out east.  I was out the door as soon as Matt got home from work last night and I spent the evening (and into the wee hours of the morning) with my friends.  I don't have a lot of friends here in DC, so it is always such a treat to have some girl time.  We reminisced, laughed, cried, shared...it was terrific!!  They also came over this afternoon for a bit to meet Waverly & Oliver.  It was lovely being able to introduce my kids to them and to give them an idea of what home like is for our family.  I think it provides my friends a much better idea of what my days entail and I feel understood.

I cried after they left.  I miss having those close friendships...especially those that have such a full history.  Life tends to get lonely for me.  We feel isolated at times.  But moments with friends are so good for my soul and sustain me until my next visit.

Wednesday, April 8, 2009

Spring Break

It has been an emotional day for me.  I belong to an online forum for MPS families and they offer a lot of experience and support.  I found out that another little boy lost his battle with MPS and a little girl in the UK who has Sanfilippo has been moved to hospice.  Every time I hear about another family losing their child to this terrible disease, it shakes me to my core.

Waverly is on spring break this week.  This means 24 hour mommy duty and it can be quite exhausting.  School provides me with a few hours everyday to focus on Oliver - whether it be his therapy sessions or just playing together.  It also (thank to Oliver's naps) allows me to tend to the apartment, insurance issues, phone calls and a good book.  Needless to say, it has been a long week and we still have 2 days to go.  I am hoping for some sunny weather so we can head outside and take a nice long walk.

Monday, April 6, 2009

Great Falls



We discovered a beautiful park just a few miles from our home.  We went yesterday for a lovely hike and picnic lunch.  The weather was perfect and the kids had a wonderful time (they also slept beautifully - bonus!).

Egg Hunt

We spent Saturday afternoon at a wonderful Easter egg hunt in Maryland.  My dear friend Katie & her family invited us to join them.  It was a beautiful, if a bit windy, day.  Oliver got the hang of it fairly quickly and loved picking up the eggs and putting them into his bag.  The organizers were so sweet to Waverly and they allowed her to move out into the center area before the other kids, so she could get a head start.  She picked up a few eggs and Katie's son helped her by putting one in her bag (so cute!).  They also had a moon bounce and both kids loved bouncing with Daddy's help.  

Oliver and Kierney - Oli was "hunting" in Kierney's bag

Finding an egg

Waverly enjoying the sunny day

Saturday, April 4, 2009

Tomorrow

My friend Kamarah put together this video of Waverly singing "Tomorrow" from Annie.  It was shot on Wavey's 5th birthday.

Friday, April 3, 2009

Sleep Apnea

The pediatrician called this morning to say she got a copy of Oliver's sleep study results.  I was thrilled she got them so quickly - we were told it would take about 4 weeks.  Unfortunately, they found out he has severe sleep apnea.  I have a call in to the ENT about what to do next.  I think they will begin by removing his tonsils and adenoids...I am hoping soon.  I am going to have a difficult time sleeping until something is done to help him breathe better at night.

We Are Not Alone

We had the wonderful opportunity to meet another family who has 2 children with Sanfilippo.  Hannah is 5 and Aiden will be 1 next month.  They were both recently diagnosed and have been at Duke all week (they are from Seattle).  We arranged to meet half-way last night at a McDonald's.  Neither of us has ever met another family affected by MPS.  The mom, Penny, and I have spoken on the the phone and exchanged e-mails, but it was so nice to finally meet her.

The McDonald's had an indoor playland, which worked out perfectly for the kids.  We ate and let the kids run around the play area.  The girls were fairly indifferent to one another, until right before we left.  Hannah plopped down in front of me and Waverly joined her.  They just stared at the camera while I took as many pictures as possible.  Here are a few.  The Dads and kids also played "Ring Around the Rosey".  I love that picture - notice the girls are holding hands!!

It was so nice to have a time out with another family that required no explanations of behaviors...just total understanding.  We had a great time and we can't wait to do it again.