Meet the McNeil Family

Meet the McNeil Family

Thursday, April 29, 2010

Normal

I have had an incredibly difficult day. A very dear friend wrote the following on her blog and it resonated with me. I will allow her words to speak for me today.

******************************

As a mother of a child with a degenerative disease, you are always striving for "normal." You go on with your routine. You do the shopping and laundry. You talk to your girlfriends about the latest gossip. You make plans and try to keep them. The problem is that you can so easily be jarred from your relaxed, normal state into a spiral of panic and worry. The underlying baseline of stress is never that far from the surface.

Watching for the smallest decline. Looking for a sign of regression. Vigilant to catch an emerging symptom. Scouring for a possible treatment or cure. Your "normal" world can be turned on its head in an instant.

You become an expert at looking normal on the outside, all the while wrestling with the stress that is just below the surface. When people see you in the grocery store and ask how things are going, you put on a smile and tell them how good things are today. You don't mention that you have been worried about your child's possible seizure activity or that there may be a promising treatment on the horizon that is being held up by politics, red tape and a lack of funding. You try to get excited when friends are raising money for cancer research, when really you wonder when someone might choose to raise money for your child's disease.

I don't want to sound so glum. I do have a lot for which to be thankful. I just wish things were as "normal" as they seem.

Wednesday, April 28, 2010

Secret Sisters

To my Secret Sisters: I do not know who you are, but thank you for the incredible gift. I was most definitely surprised.

Tuesday, April 27, 2010

Night Night

For the past few nights, Oliver has been climbing into Waverly's bed when we take them into their room at night. Tonight, they both climbed in and laid down together. We were able to snap this shot which I just adore. They tend to play next to one another or push by each other, so it was lovely to see them doing something together. Of course, we put Oliver in his crib to sleep or they would be up all night long.

Monday, April 26, 2010

No Cavities

I hope everyone enjoyed the videos. I am trying to remember to tape them more. I think seeing the kids "in action" gives such a clear picture of who they are. I adore the one of Oliver's big finish to the Mickey Mouse Clubhouse song. As Matt said, Oliver has my pipes and Matt's pitch.

The kids had dental appointments this morning at Children's. No cavities!!! They both did great. Wavey left with a Winnie the Pooh sticker. Oliver selected Handy Manny and Dora (he loves Dora). Then we went to the zoo for the afternoon. Fortunately, the rain held off and we enjoyed lovely visit. The highlight for Oli was the petting zoo area. He loves cows and was able to pet one - very exciting. Waverly giggled at the cows, but she seemed most interested in the meerkats. She stood right by the glass and tried to reach out to pet them every time they ran past. She was cracking up. It was wonderful. All in all a successful day.

Friday, April 23, 2010

Kick It

Oliver can kick a ball!!  The past few days Oliver has been kicking a ball all around the house and he will even play a back & forth game with us.  I am so very proud of him.  I can't tell you how wonderful it is to continue to see him learning and gaining skills.

Waverly said "mommy" tonight.  Granted it was while I was cutting her fingernails and she was upset, but it was a "mommy" none the less.  She is also singing the word "lonely" from Annie's "Tomorrow" - "When I'm stuck with a day that gray and lonely".  Music to my ears.

Continuing the celebrate the little things.

Wednesday, April 21, 2010

Cowboys

Oliver stayed home sick from school today.  He was running a slight fever and coughing.  He found the cowboy hats the kids got at Give Kids the World.  He typically doesn't like wearing hats, but I was able to snap a few shots before he took it off.  He is my little cowboy.








I particularly like this one of Oliver & Matt.  They look so cute and coordinated together.

Tuesday, April 20, 2010

Forgot

The 2 year anniversary of Oliver's diagnosis went by without me even realizing it.  I was so busy on Saturday with family and friends that I didn't notice it was April 17th.  It was nice to leave that dark day behind and enjoy the moment.

Monday, April 19, 2010

Thanks for Family

The kids and I spent the weekend with my family in PA (Matt had to work).  My sister was there and the kids love being with their cousins.  My mom had a little Easter egg hunt for them on Saturday.  Oliver was very good at finding the eggs scattered across the yard for him.  It is always refreshing for me to be back with family.  Waverly & Oliver adore spending time with Grandma & Grandpa.  And I am able to take a few deep breaths, knowing the kids are in capable hands.  Even the cousins are helpful - keeping a watchful eye on the kids and loving them as they are.  It was a wonderful weekend.






PLEASE Help - National MPS Awareness Day

Please take a few moments to contact your Senators and ask them to support the resolution to designate May 15 as National MPS Awareness Day.  You can call, fax or email.  There are sample letters to help you know what to say - include how Waverly & Oliver and the other children with MPS affect your life.  Lets work together to bring awareness!!!  Thank you.

*****************************************************

The Time for Action is now to secure co-sponsors for Senate resolution designating May 15, 2010 as National MPS Awareness Day.

The deadline is May 7, 2010.


We need your help.  MPS Awareness Day is fast approaching and our voices need to be heard on capitol hill to continue to raise awareness of MPS and related diseases.   Senator Lindsey Graham (SC) is again sponsoring this year’s resolution proclaiming May 15, 2010 as National MPS Awareness Day.

We are asking you, your family and friends to contact both of your United States Senators and ask to speak with their Health Legislative Assistants (HLA).  Their contact information is available at www.senate.gov.  If you click on the upper right hand corner by your state, you will see their contact information including phone, fax and email addresses.  

  • If calling your two Senator’s offices, ask to speak with the Health Legislative Assistant (HLA).  If you get their recording, be prepared to leave your message.  We have attached a suggested script for calling, faxing or emailing.  Explain to the HLA that you are a constituent and give a brief description of how MPS or related diseases affects your lives.  Let your HLA know the purpose of the resolution is to raise awareness and recognize affected individuals and families and ask for them to co-sponsor this resolution.  You can offer to email or fax the text of the resolution.
  • If emailing or faxing, address your correspondence to your Senator in care of the Health Legislative Assistant (HLA).  You can use the attached sample letter to personalize for your family or affected one, also explaining how MPS has affected your lives and the purpose of the resolution.  Then attach the resolution to your correspondence.
VERY IMPORTANT:  Be sure and have your HLA or Senator contact Senator Lindsey Graham’s office and speak to either Colin Allen or Leigh Ellen Lybrand at 202.224.5972 to sign on as a co-sponsor. 

If you have any questions feel free to contact any of the legislative committee board members or call our office.

Thank you for your help.  Your voice is a powerful tool in raising awareness for MPS and related diseases.

Friday, April 16, 2010

IEP Time

Oliver is all set for school next year.  I went to his IEP meeting yesterday afternoon.  I know that most parents (and teachers) dread IEPs.  Thankfully, ours have almost always gone well.  Once everyone at the table has a clear understanding of Sanfilippo and the progressive nature of the disease, things go quite smoothly.  Oliver will attend summer school for 4 weeks with her current teacher.  (She is AMAZING!!!)  We all decided that moving Oliver into a move global development delay program, versus a hearing impairing communication based program, is in his best interest.  We will miss his current school and especially his teacher, but as of now he is set to attend Waverly's old preschool program.  He may even have her old teacher, whom we also adore.  The only other option is requesting that he be placed in the preschool program at Waverly's elementary school.  It would make things easier, but there are some complications to that plan.  I am so thankful for our school district.  It is gigantic, but it serves our family well.

Wednesday, April 14, 2010

Let's Go To The Movies

Matt and I took Oliver to see "How to Train Your Dragon" this afternoon.  It was a super cute movie.  It had some scary parts, but my kids never seem to comprehend typical scary things.  For instance Waverly loves Elmo's World, but freaks out if Mr. Noodle comes on the screen.  Fortunately the theater was fairly empty, so we sat off to the side and took up multiple seats.  That way Oliver could move around during the movie.  He did beautifully.  I don't know how much he enjoyed the actual movie, but he loved the experience...most notably the popcorn.

It was a great outing and it did my soul good.  It was fun to be out with just the boys in my life.  (Waverly was home with Preti and they had a wonderful time watching Dumbo.)  It felt normal.  For those 90 minutes, I felt like any other mom taking her 3 year-old son to the movies.  It was a great feeling.

Monday, April 12, 2010

Over the Ground

My sweet little Waverly is having difficulty walking lately.  She was without orthotics last week and her new ones need to be adjusted (she had some blisters from them).  I hope it is merely not having their support for awhile.  But I fear this is yet another progression of the disease.  She has been walking on her toes a lot, unwilling to put her heels down.  Her feet are turned it, so she is tripping more often.  I hate seeing her fall.

In the midst of this sadness, she has been singing "Happy Birthday" again.  She is also singing the phrase "over the ground" (although it did take us awhile to decipher what she was saying) from "Little Black Rain Cloud" in the Winnie the Pooh movie.  I love hearing her sweet voice.



Saturday, April 10, 2010

Lessons Learned

This photo was taken in Ohio last week.  Oliver loves swings, but unfortunately he was left in this one a bit too long.  Moments after this picture was taken, he threw up all over himself.  Note to self - 30 minutes on the swing may be a tad too much.


A friend of mine posted a beautiful video of her daughter today.  Her little girl passed away 4 years ago. She was 5 and had Sanfilippo.  I spent 4 minutes listening to a very touching song and watching photos of a lovely family.  My heart broke thinking of the pain they have endured, knowing that we will one day be in the same position.  After having a good cry, I was reminded just how lucky I am.  My amazing kids are with me today.  It is sometimes difficult to find joy in the moment.  The future looms ahead of me and it's terrifying.  But I have been given the gift of having them *today*.  No one has a guarantee for tomorrow.

Friday, April 9, 2010

Shiny New Orthotics

This morning Waverly & I picked up her new orthotics.  They look just like her old ones - purple with green polka-dots on the straps - but they are shiny and clean.  I will have to take her up to our favorite shoes store tomorrow to pick out a new pair of sneakers that can accommodate the orthotics.  Her already wide feet can make this quite difficult, but Ed (the kids' show guy) always seems to find a solution.  The first time we got her orthotics it was emotional for me.  It was yet another "handicapped" sign.  I have grown to love those orthotics.  They have been instrumental in keeping Wavey on her feet.  She is a much better walker when wearing them.  I was excited to get them today; happy that these expensive pieces of molded plastic will allow her to continue to hold my hand and take walks around the park.

Thursday, April 8, 2010

Little Gardener

Oliver's class is learning all about spring this week.  One of their activities was planting seeds.  His teacher snapped this adorable photo yesterday.  Oliver is watering his seedling, hoping for it to sprout.  He is such a good little boy.


Wednesday, April 7, 2010

Wheelchair

Waverly has outgrown her MacLaren Major Elite stroller.  It has served her well the past 2 years and will continue to wheel Oliver around, since he has outgrown his regular stroller.  (The photo below is Wavey's first day in the stroller - so cute.)


We were given a prescription from her physical medicine doctor for a pediatric wheelchair.  I started the process in January and finally met with a medical equipment rep yesterday.  He came to Wavey's therapy appointment, so we could have the PT's input.  Unfortunately, the stroller-like options are all too small for Waverly.  So we had to select from the pediatric wheelchair options.  We settled on one called the Convaid Safari Tilt.  We needed something that could be used as transportation on the school bus, because she is having a more difficult time climbing the bus steps.  We also wanted something more all-terrain, since we spend a lot of time walking outside.  The chair will come with a sun canopy and a tray. The tray is vital, for eating out or when visiting family/friends.  It can also tilt back, so on the rare occasion she would fall asleep, we could lean her back to make her more comfortable.  The Safari comes in a multitude of colors.  We are currently deciding between a dark purple or bright pink.

Waverly is still walking quite well, although the past 2 weeks we have seen a decline.  The PT is hopeful that once we pick up her new orthotics on Friday, we may see an improvement.  She is walking on her toes a lot more and her toes are curling, causing an unsteady gait.  She loves to walk, but needs a hand for support.  She also tires quickly, so having a safe and comfortable place to allow her to rest is vital.  She also doesn't understand she must stay with us, so if we do not hold on to her she will run off through parking lots, into streets, etc.  Her safety is a factor in deciding on a wheelchair. 

I have spent so much time researching the different wheelchair options, that I neglected to deal with the fact that we are picking out a *wheelchair* for our little girl.  It is not unexpected.  We were told upon her diagnosis that she would eventually lose her ability to walk.  However, anticipating the change doesn't make it any easier.

Sunday, April 4, 2010

Happy Easter!!

We enjoyed yet another beautiful spring day and headed to the Cherry Blossom Festival in DC.  Unfortunately, so did everyone else.  The traffic was horrible and we couldn't find parking, so we ended up going to our favorite playground for the afternoon.  I had packed a big picnic lunch and we had a wonderful time running around the park.  Waverly especially loved the spiral slide - she giggled uncontrollably the entire slide down and climb back up the stairs.  Oliver loves the race cars.  We also rode the carousel.  It was the perfect way to spend our Easter afternoon.




Saturday, April 3, 2010

Spring Break in Ohio

We are home after a spring break trip to Ohio to visit Matt's family.  The weather was perfect and the kids had a wonderful time with their grandparents, cousin, and aunt.  We were also able to squeeze in a few visits with some old friends.

Here is an old photo of Waverly (and her baa-baa) when she was 2 at the Columbus Zoo

The first part of the trip was spent in Columbus.  We lived there for the first 2.5 years of Waverly's life, so it holds a lot of precious memories for Matt & I.  We drove by our old house and through our neighborhood.  We went to the Columbus Zoo - one of the best zoos in the country (thanks Jack Hanna!).  Wavey and I used to go there weekly to see the animals and enjoy a nice walk.  As we weaved our way through exhibits, a flood of memories came back to me.  It was wonderful to remember. 

Oliver standing by the fake alligator

Oliver riding the carousel

Waverly riding the carousel

Wavey petting a goat in the petting zoo area

Just a cute photo