Meet the McNeil Family

Meet the McNeil Family

Sunday, June 28, 2009

Photos From Our Weekend

The only photo I could get of the kids together

I love capturing Waverly running

Oliver is clapping a job well done

Waverly happily running

Waverly running with a smile

Oliver's close up

Oliver waving hello to the camera

Oliver eating marshmallows

Waverly eating an ice cream cone

Oliver enjoying his ice cream

The boy loves to eat

Friday, June 26, 2009

Still Here

I am definitely not abandoning the blog. It is going to be an incredible source of memories and photos for us. I have simply grown tired of the sadness. However, I realize the sadness will never leave. It is here to stay and while I will never get used to it, I will hopefully be able to better manage my emotions.

Lately I have been overwhelmed with "am I doing enough" or "am I doing the right thing". There is no cure for Sanfilippo. And there is no treatment. Duke is still pursuing the stem cell transplant, but we have made our decision regarding that option and never looked back. Some families are using certain supplements or off label drugs. It is very frustrating that no one seems to be doing anything to find a cure or viable treatment for our kids. What is a mom to do?!

Monday, June 22, 2009

Blogged Out

I feel blogged out.  Lately, the heaviness of Waverly & Oliver's diagnosis has worn me down.  I spent some time last night watching old videos of Waverly when she was almost 2 years old.  I sometimes avoid the photo albums and dvds because they reveal too much...all that Wavey has lost becomes so real.  But last night I was in the mood.  I actually wanted to hear her voice.  I wanted to remember.  And there she was - the MOST beautiful little girl.  She was talking about the "woo-woos" (Wiggles) and "melmo" (Elmo).  She was calling for her cousin "mel-moo" and said "cheese" & "bye-bye" every time she spotted the camera.  Her smile was huge and her eyes were so bright.  It was so lovely to see her again, yet my heart broke thinking about how much this awful disease has stolen from her.  And my mind turned to Oliver.  It was almost easier not knowing and just enjoying Waverly.  With Oliver I am always watching, waiting for the signs that the disease has begun to steal him away from me.  I am terrified each time he forgets where his nose is or stops signing a word.

I love my kids more than anything in this world.  I take joy in them every day.  But there is sorrow that so very few of you will understand.

Sunday, June 21, 2009

Happy Father's Day, Matt!!!

Today we celebrated Matt - the most amazing Daddy.  And I truly mean amazing.  I knew that Matt was going to be an incredible father very early on in our relationship.  He has not let me down in the slightest.  He loves Waverly & Oliver with all he is and all he has.  Matt has always been fully involved in caring for the kids.  He takes such great care of them.  Waverly is Daddy's little girl and Oliver is his boy.

Happy Father's Day, Matt!!!  We love you so very much.


Saturday, June 20, 2009

Go Nats!

Last night we took the kids to a Washington Nationals game.  We were hesitant about how they would do and how long they would last, but we thought we would give it a try.  We got to the stadium about 90 minutes before game time.  

The stadium is BEAUTIFUL!!  They had a great playground that Oliver enjoyed.  I took our tickets to the sales office to see if I could exchange them for handicapped seating.  We thought Waverly would last much longer in her stroller and we worry about her hitting or kicking someone with her constant movements.  They were wonderful and gave us seats in the same section that could accommodate her big stroller.  We had our own little area with a railing all around us.  The kids could walk around a little bit and Wavey couldn't reach anyone but us.  It was the perfect setup.

Wavery enjoyed the business of the stadium, although she startled easily with all of the loud noises.  She loved watching the big screen and eating the delicious snacks.  Oliver actually watched the field most of the time.  He loves when large groups of people clap, so this was his element.  He cheered, raised his arms in the air for "charge" and clapped whenever possible.  We stayed until the top of the 8th.  It was almost 10:00 and the kids were getting tired.  It had been such a perfect night, we didn't want to risk a meltdown.

It was such a wonderful family night!!!  Oliver took in his first baseball game and we made wonderful memories.  It was a very special night for Matt & I.

Waverly looking beautiful pre-game


Oliver giving double thumbs up

Oliver taking in the game

Waverly smiling at Daddy

Thursday, June 18, 2009

Champ

Waverly was superb today.  She did such a great job.  She was calm throughout the entire check-in process and giggled until we went we back to the room.  The anesthesiologist was great and took some time to read up on MPS before he put her under.  He put the mask on her face (with 3 of us holding her down - she is so strong!) and within 1 minute she was out.  The tests took about 2 hours and she came out of the anesthesia beautifully.  No crying or whining, just a little dazed.  I am so incredibly proud of her.  Now just waiting for the results.

Wednesday, June 17, 2009

Sedation

Tomorrow afternoon Waverly is going to the hospital for a sedated ABR and EEG.  Due to her recent seizure activity, the neurologist wants to have a look at her brain's electrical activity.  Even though the chance of her having a seizure during the test is very slim, they may be able to see other abnormalities to help determine our next step.  We were fortunate that the hospital was able to arrange for her to have her hearing test done at the same time, to limit sedation.  The last 2 times Waverly had anesthesia, she had an incredibly difficult time going under.  She fought sleep with all she had and it took over 3 hours for her to succumb to the medicine.  And then it took us a few hours to wake her up.  I know that I have mentioned before the risks of sedating children with MPS.  The hospital has been wonderful and they arranged to have 2 anesthesiologists present for her tests, to be sure everything goes well.  Needless to say, I am quite nervous and will most likely have a difficult time sleeping tonight.

Tuesday, June 16, 2009

Clemyjontri

We have an amazing park nearby called Clemyjontri.  I know that I have mentioned it before, but it is such a special place for our family.  I took the kids there yesterday for the morning, with the help our Preeti, our respite care worker.  She has been working with us for a few months and spends a few days a week with our family.  Our lives have changed since her arrival.  Thanks to a waiver in Virginia, we were eligible to hire a CNA due to the kids' illness.  Waverly is off of school for the next 3 weeks and so I am trying to be diligent to plan an activity for each day.  Those days with Preeti will be more adventurous, since I have a difficult time managing both kids on my own.

So yesterday was playground day.  We live just a short drive from Clemyjontri (strange name, I know...the woman who donated the land and money combined the names of her 4 kids).  It is a playground for all kids, but was specifically created to allow children with special needs access to the entire area.  The highlight for our kids is the Carousel and swings.  Wavey loves to walk the circle path around the playground, while Oliver explores.  He doesn't really play on the equipment, just wanders around it and up/down the ramps (yeah for ramps and not just stairs!).  He is quite cautious. 

I LOVE this photo of Oliver on his horse

Oli has his thumb up, signing "good job" as the Carousel stopped spinning

Wavey looking beautiful on her horse

Monday, June 15, 2009

Thank You

Oliver enjoying his 2nd...maybe 3rd...soft pretzel

Us in front of a sign (very humid day!)

The amazing volunteers (check out their tees!)

A view of the yard sale area

Wow!  What a weekend.  My friend Kristen organized a Family Fun Yard Sale for Saturday morning up in PA.  She has been an incredible source of support and encouragement for me.  And she really wanted to do something to help our family.  Kristen and her friends Alicia & Tracey, decided to put together an event to raise money for "A Hundred for a Home".  They did an unbelievable amount of work and the yard sale was a HUGE success.  Not only did they sell tables for people to sell their items.  They sold delicious food (hotdogs, BBQ, popcorn, chips, drinks, cotton candy and Oliver's favorite soft pretzels) and had a bake sale table.  They had face painting for the kids and games.  They also had a bunch of local businesses donate items for an auction.  Kristen made a beautiful display with the kids' photos, our story, and information about MPS.  All of the volunteers wore purple t-shirts and they had purple ribbons to give out to everyone.

Matt and I took the kids and spent 6 hours seeing old friends and meeting new ones.  We just walked around introducing everyone to Waverly & Oliver.  They are my little ambassadors for MPS.  We were talking with people the entire time and we both felt an extraordinary sense of love & support.

We were also able to meet another MPS family.  Tyler and his family came up from Hershey.  His mom and I have written back and forth, and they decided to drive up to take part in the day.  There is a very special connection among the Sanfilippo families and it was a highlight of my day to spend time with them.  We can't wait to visit with them soon and spend some quality time together.

They were able to raise over $9000 for AHFAH!!!  And they were able to raise awareness for MPS.  It truly was amazing.

I want to say THANK YOU to all of the volunteers who came out to support our family.  The Community Warriors and Faith Church members, who gave up their Saturday to help put together such a great day.  Tracey & Alicia for all of their hard work heading up this big project.  And especially to Kristin, her husband Brian, and the rest of her family...thank you for giving us one of the most special days, for showering us with love and support, and for allowing the community to meet and be impacted by Waverly & Oliver.

Friday, June 12, 2009

Preschool Graduate

Waverly had her last day of preschool today.  And I neglected to take any photos!  I actually cried as I put her on the bus this morning and I cried harder as she stepped off the bus this afternoon.  The memories of last September came flooding back.  I remember the fear of sending her off to school on a bus.  (I think I followed it for a few blocks, making sure she was okay.)  It was such a bumpy start to the school year.  It took awhile for everyone to understand Waverly.  Expectations needed to be adjusted and an MPS education needed to be given.  But we made it through and it ended up being such a positive experience for all.  I am sad that this school year is over.  Wavey has changed so much this year, while still maintaining her incredibly sweet personality.  When she stepped off of the bus today she was wearing her harness vest, she had her orthotics on (and fashionable pink sandals, of course), she was wearing glasses, and descending the stairs required a lot more assistance from the railing and my hand.  She was singing "Happy Birthday" (they had 2 birthday parties this week).  She is still my little baby girl.  The bus driver and assistant both said they will miss Waverly's smile, her laugh and her singing (although they wish her repertoire was larger).  On to Kindergarten we go...

Wednesday, June 10, 2009

The Card Aisle

I had to buy another sympathy card today.  This is my 4th one this year for an MPS child.  I am late getting this one in the mail, simply because I didn't want to sort through the many cliches.  With each card sent, the reality of what we are facing becomes more clear.  And there are no words to say to a grieving parent that seems adequate; nothing that truly captures their sorrow.  It doesn't get any easier.  In fact, it just keeps getting more and more difficult.

Tuesday, June 9, 2009

Oliver the Student

Oliver visited the preschool classroom he will attend in the fall yesterday.  His teacher invited us over to meet her and see the class.  Oliver was able to participate in a PT group activity and music.  It was so neat to see him watch the other kids and then begin to imitate them.  The PT had 6 "speed bump" type things on the floor and the kids needed to step/walk on them.  He ran over to them to pick them up, but once he saw the other kids step on them he tried to do the same.  And he loved music time and clapped after each song.  We were given a copy of the songs they sing, so he can become familiar with them this summer.  I love that!  He has hardly had any social interactions with other kids, so this is going to be incredible for him.

Oliver is still recovering.  He is feeling better, but he has his moments.  He hates taking his medicine and goes into a royal fit each morning and night.  He still isn't eating or drinking very much, but she seems content with his applesauce and Ella's smoothies (Thank you Stacy & Jennifer!).

Waverly is doing well.  She has been incredibly giggly the past 2 days and a bit more hyper than usual.  This is her last week of preschool and I am getting nervous for the next 3 weeks.  Summer school doesn't start until July, so I am going to need to be creative with our time.

Sunday, June 7, 2009

Balloons

I know that I sound like a broken record, but it really is all about the little things.  The kids got balloons this morning at one of our favorite diners.  Waverly loves balloons, but she squeezes and bites them.  Needless to say we don't really let her hold them for fear they will pop in her face.  Oliver LOVES balloons.  He was watching them the entire time we were eating and I knew he was hoping to have one of his own.  Here are a few photos of Oliver enjoying the balloons.  He likes to hold the string, let them go and watch them hit the ceiling.  He did it over and over and over again this afternoon.



Saturday, June 6, 2009

Wavey at School

Here is a photo of Waverly at school this week.  She isn't able to manipulate the small switches and buttons on most toys anymore.  So they altered this gear toy by connecting it to a large push button.  She can push the button and the gear move, lights turn on and music plays.  I love that she is still able to play, using this feature.
Oliver had such a good day...finally.  He was eating and drinking, playing, and we even made a trip to the play ground after nap time.  I have been told Day 7 post surgery is difficult, so we will see what Tuesday holds.  Waverly continues to be such a good little girl.  We are so proud of her.

Here are a few photos I took on my phone the day of Oliver surgery.  The first one is post surgery and the second is (quite obviously) pre surgery.


Thursday, June 4, 2009

Two Steps Back

Oliver had a rough day.  He actually slept quite nicely last night and I thought we were going to do alright.  But he has been running a slight fever and not wanting to eat/drink today.  He is also incredibly clingy and doesn't want me out of his sight.  He is still awake, but I am hoping he will be drifting off to sleep within the next few moments.

In other news we finally have both an EEG and MRI scheduled for Waverly.  Unfortunately we were not able to coordinate the tests for the same day.  We were hoping to limit the number of times she has to be sedated, since she has such difficulties with anesthsia.  I am not sure why Children's is unable to arrange this for us, but it seems like an impossible task for them.

Waverly has been a dream this week!!  She has been so well behaved.  My mom has really taken the lead with Waverly, since I have been busy with Oliver and Matt is working & on duty (meaning he is on call each night for the next 7 nights for any American citizen issues involving the State Department).  Wavey responds so beautifully to Grandma and they have been having a great time together.

Wednesday, June 3, 2009

Both Kids Asleep

Matt did such a great job posting last night.  Oliver and I left the hospital this morning.  We actually had a relatively restful night sleep.  He had quite a bit of nausea from the medications and anesthesia, put after a few tries the correct anti-nausea drug was found and he slept soundly.  He has been grumpy (but I would be to after all of this).  He has also been incredibly hungry and feasting on bananas, apple sauce, jello, yogurt and popsicles.  Every time he finishes a snack, he immediately signs *MORE*.  He has been in a mommy only mood, but I don't mind in the slightest.  My mom is here for the rest of the week and she is taking the lead on caring for Waverly.  I don't know how we would get through this week without her help.

Tuesday, June 2, 2009

Those adenoids won't be bothering anyone again

I've long craved a guest blogging assignment on Shannon's blog and I finally got it: the tonsils and adenoids surgery update.  

It was a long day for the whole family.  Shannon took Oli to the Children's Hospital a little after 6:00.  Surgery ended up being postponed until some time after 10:00.  Oli really likes waiting rooms, but panics as soon as he sees someone in scrubs.  In his 2+ years on earth, he's been around enough to know nothing good comes from someone wearing scrubs.  He pretty much screamed every time a doctor or nurse got near him the rest of the day, which made for a long day for Shannon.  He didn't want her out of his sight. 

The surgery itself appears to have gone well.  Afterwards, our doctor told us Oli would be out in about 10 or 15 minutes.  The fact it took nearly 45 minutes made us nervous there may have been a problem with the anesthesia, but we weren't told there were any issues.  He looked a little worse than we expected too.  I think there is a popular notion (at least this thought still lingers in my brain since childhood) that the tonsillectomy was just an easy way to get to eat ice cream for a week.  We were surprised at how uncomfortable he was and by some of the other post surgery issues we had not anticipated (I'll spare you the details, but here's a hint: I had to bring Shannon a couple of changes of clothes).  

I went down to the hospital after work to see them both as the Pennsylvania based grandparents took care of Waverly for the day.  I know it does not look good to say that I was sitting at my desk when my son was laying on the surgeon's table, but the reality is that we've got more hours of procedures and appointments than I have of sick leave.  Oli shot his arms up for me as soon as he saw me and Shannon was thrilled to get a break from holding him and eat the delicious dinner I brought for her.  When I left the hospital Oli was nodding off to sleep and Shannon was hoping for a little bit of shuteye hereself in what could turn out to be a long night of intermittent sleep for both of them. 

Thanks for all your love, prayers, and concern.  If I have not too gravely damaged Shannon's blog's reputation, I might see you back here as a guest poster sometime.  

Matt

Monday, June 1, 2009

Surgery

Oliver's surgery is scheduled for 9:40 am on Tuesday.  We will have to spend at least one night in the hospital.  Matt will update the blog with details tomorrow night.  Thanks for all of your thoughts and prayers.

Waiting...

We are waiting on the hospital to call and give us our information for Oliver's surgery tomorrow.  I am hoping for an early morning time, because Oliver is not going to like missing breakfast.  Here are a few photos of the kids I took today.  My mom and Waverly are watching "The Wiggles".  And Oliver is showing off his new haircut.  He had it done this morning - no screaming at all, thanks to a bubblegum Dum-Dum.