Meet the McNeil Family

Meet the McNeil Family

Sunday, January 31, 2010

Way to Go!


I often talk about celebrating the small things.  Within the last 2 weeks Oliver has mastered drinking from a straw.  We are so proud of him!


Saturday, January 30, 2010

Recovery???

Thank for your comments, messages, and phone calls.  I totally appreciate the support - from friends and strangers.  Waverly slept last night without any problems.  She is still off today, but she is getting color back in her face and she wanted to eat/drink again.  We haven't heard anything from the doctor yet.  Hopefully tomorrow she will call with some results.  The frustration with this flu/illness/bug she has, is that she recovers for a few days and then it hits her all over again.  I never know if it is *finally* over.

We got about 4 inches of snow today, so the DC area is basically shut down.  It looks beautiful - I love watching falling snow.  We stayed in today - watched movies, read books, made brownies, and napped (I took a 3 hour one this afternoon!).

Friday, January 29, 2010

Goodbye January

I cannot wait for January to end.  This has been such a difficult month.  Waverly has been sick for almost the entire time.  We thought she was *finally* over the stomach bug, but then last night she woke up in the middle of the night vomiting.  She actually looked green this morning.  Wavey has a very high pain tolerance, most Sanfilippo kids do, but I can tell she feels awful.  I just hate that she can't tell me what hurts.  I took her back to the pediatrician this afternoon.  Her previous lab tests all came back normal, but they ran a bunch of blood panels hoping to find the cause.

To add to my worry, 2 nights ago she woke up in the middle of the night choking.  She makes so much saliva and she was on her back, so it pooled and she choked on it.  Thankfully, she started coughing and I was able to sit her up to clear her throat.

I know in the scheme of things, these are not major issues, but they are still scary.  One of my jobs as a mom is to keep her happy and safe.  I feel like I am failing her somehow.  I hope her blood work comes back quickly and provides us the answers we so desperately need.

Wednesday, January 27, 2010

Quiet Place

The following "post" was not written by me, but by another blogger.  A friend passed it on to me, as a beautiful example of what it must be like to lose a child with Sanfilippo.  I just had to share it.


THE QUIET PLACE
For a long while, I’ve been of the understanding that parents of sick children do most things out of a combination of love and necessity. She’s 5 years old and has a brain tumor. She’s our daughter and we love her and this has to be done. He’s 17 years old and was in a car accident. He will never be the same as he was, but he WAS and we love him. He IS and we have no choice.

But there’s a deeper reason I’ve come to know--a third space of which I’ve become intimately appreciative.

While she’s still here, he sets his alarm every two hours to reposition her in the bed, provides her medications through a feeding tube and diligently records the hundreds of seizures, each of which rock the bed and break his heart. And those on the outside wonder why, and how? We want it to be over because it seems to hard---so time consuming and fruitless.

And when it’s over, and he packs up her room and her things and appears more tired than we’ve ever known him to be, we expect him to be sad and to miss her. We expect his hand to quiver as he runs his finger over the smile she wore in her Kindergarten graduation picture. We expect him to look down at the scuffed tile floor when he hears someone call out “Daddy!” and realizes that it wasn’t for him.

But we shade our eyes from the worst part, even though we know it is coming. The moment when he sits down, exhausted, on his couch and notices that he has absolutely nothing to do. No, he’s not thinking of her unfinished life--of graduations and weddings or even of 1st grade. He’s thinking, oh, what he wouldn’t give to have a diaper to change, sheets to clean or an IV pump to silence. Because he has been doing somethingfor so long that it’s physically painful, now, to be still.

The black idleness of his present engulfs him; it wraps him up in a damp blanket right there on the couch and he throws his hands over his ears to block out the shrill, desolate silence. At that very moment, he would rather have her back broken still, instead of whole, just so that he would have something to do.

The quiet place. It’s why people work in factories and flick their pen caps.

It’s why you listen to talk radio on the way to work, or your iPod while you vacuum. It’s why you dread getting into the shower, for fear of working your hair into a good lather and forgetting about the present tasks at hand, thereby leaving room for It.

Because the quiet place isn’t about loss or emptiness, for those things can be filled, if only with a memory. The quiet place is about a silence that no sound can pierce and a nothingness so hollow you wonder if you could be lost in it, and never find your way out again.

Monday, January 25, 2010

Cruel Trick

My sweet Waverly is going through a phase.  At least I hope it is a phase.  This month has been difficult.  She has been sick the majority of January.  I am hoping that her body's need to recover is behind these changes.  She is so vacant.  She has been very quiet - not much singing and no "mommy"s.  She isn't smiling or giggling.  For those of you who know Wavey, this is very uncharacteristic of her.  She is silent.  She simply wanders around the apartment, occasionally stopping to look at something for a moment, then she moves on.  Her tongue is constantly out of her mouth and she is drooling a lot.

December was an incredible month for her.  She was saying "mommy" again, singing "Row Your Boat" and "Happy Birthday".  She was so engaging.  I remember thinking she is doing so great and behaving so perfectly.

The other night, as Matt and I were discussing the changes, he made a wonderful observation.  Waverly has always had a peak before she loses additional skills.  I could look at it two ways: a cruel trick before another part of her is taken or a gift before that part is gone.  My point of view seems to switch from moment to moment.  Tonight it feels like a cruel trick.

Oliver is beginning to "look" like a little boy with Sanfilippo.  For parents of these kids, they become easy to spot.  He has looked like he's had the disease for a long time.  But it is beginning to manifest itself more as he gets older.  His left foot is turning in slightly.  He is becoming more and more hyperactive.  He wakes almost every night for a few hours.

We always looked at Oliver as the "before" model.  This is what Waverly was like before Sanfilippo took hold.  However, now the disease is taking hold of him.  It is quite jarring for me.  I think I expected it to be easier, since I knew what was coming.  But nothing can make this any easier.

Saturday, January 23, 2010

Extraordinary Measures

The movie "Extraordinary Measures" opened this weekend.  Matt and I plan on seeing it soon.  It is a true story of a family with 2 children who have Pompe Disease.  It is a disease similar to Sanfilippo.  They are both Lysosomal Storage Disorders.  This movie highlights the difficulties families face in getting a treatment option.  Because these are orphan diseases (i.e. rare), they do not get funding.  Without funding researchers and doctors are unable to carry out their research.  And pharmaceutical companies don't give them the attention they need because they won't receive a huge payoff for their work, since there aren't a lot of children who will need the treatment.

I hope this movie celebrated the accomplishments of those involved in finding a treatment for Pompe.  I also hope it serves as a reminder that there are many other similar diseases without treatments and children are dying.

Friday, January 22, 2010

Curled Up With a Book












Matt and I were both shaken last night with the news of Joey's passing.  I wanted to hold on a little tighter to them and capture more moments.  Waverly loves being read to, but only certain books that she enjoyed as a toddler.  One of her favorites is a collection of Winnie the Pooh stories.  I read them to her last night and then she wanted to look at the book all by herself.  She looked sad last night.  I think she is still slowly recovering from being sick, but there was a look of sorrow in her eyes.  I can't explain it.

Oliver was as wild as ever.  This is the only shot that wasn't all blurry.  He loves being thrown around by  Matt.  He was all smiles and giggles.

Thursday, January 21, 2010

Sadness

It is with a very heavy heart that I am writing tonight.  I just received word that a brave boy with Sanfilippo passed away just moments ago.  His name was Joey.  I never had the pleasure of meeting him, but I have friends who have.  They all said he was an incredibly sweet and handsome young man.  His mom has been a constant source of information and support for many of the families.  Her experience has been so valuable for many of us.  My heart breaks for this family.  Please keep them in your prayers.

Rest in peace, Joey.

Tuesday, January 19, 2010

Not Again

Wavey was sick AGAIN over the weekend.  This was the fourth cycle of the same stomach bug.  Her doctor prescribed an anti-nausea medication to give her gut a rest.  Hopefully her body can heal, so she can get her strength back and get over this already.  She has missed almost every day of school since we returned from the Christmas break.  Her weight is down by about 5 pounds and she looks very pale.  Thankfully my mom came down for the long weekend to help out.  Matt is working the next 10 days straight, so it was nice to have her help.

She is having a lot of trouble walking at the moment.  Her hip and hamstring are incredibly tight and she is falling a lot.  She is with the PT right now for some stretching and evaluation.  We meet with the physical medicine doctor at the end of the month.  I hate seeing her body deteriorate like this.

Oliver is doing well.  He hasn't gotten sick since the one time he had it a few weeks ago.  I have been working with him on learning how to drink from a straw.  It sounds like an easy task, by for my stubborn little Oliver it is quite the ordeal.

Sunday, January 17, 2010

Thankful

I keep updating this blog for many reasons.  It allows me to easily keep family and friends up to date.  It provides me with a wonderful account of our year, pictures and all.  (Matt is actually working on getting the the first year bound in book form.)  I love having a record of our activities and my feelings.  The blog is therapeutic.  I appreciate the comments and support from all of you.  I also hope I am able to raise awareness - not just for Sanfilippo, but for special needs in general.  My other desire is to be honest.  I do not want to convey an "I'm thankful all the time, God doesn't give me what I can't handle, positive attitude".  While aspects of those sentiments are accurate, there is so much more going on in my heart and mind to be summed up so simply.

Many of you who have been following our story realize that it can be quite difficult to explain the simultaneous joy and sorrow.  I can celebrate Waverly & Oliver, while still struggling to come to terms with their future.

In the midst of all that is going on in the world, especially with the intense suffering in Haiti right now, I have been reminded that I am blessed with a roof over my head, food to eat, wonderful schools and doctors, and an incredible family.  Even though my time with Waverly & Oliver is much too short, I am truly thankful for each moment I have with them.

Friday, January 15, 2010

Holiday Party

This afternoon I went to Waverly's school for her holiday party.  It was rescheduled due to the huge snow storm before Christmas.  I was really looking forward to meeting the other students in her class and getting to know the other moms.  It was a lot of fun!  The kids were all so sweet.  I wasn't sure how capable or communicative they would be.  I am so used to Waverly & Oliver, that I sometimes have a difficult time adapting to the needs of other children.  Some of them could hold conversations, which was a real treat for me.  Others needed a lot more assistance.  I helped them choose a color of icing and what sprinkles & sugars they wanted to use for decoration.  Waverly definitely is one of the spunkier kids in the group.  She has such a difficult time focusing on a task and sitting still is not easy.  She did a great job and the teachers/assistants who work with her are wonderful.  It was confirmation that she is in an excellent environment with people who love her.

She had her ENT appointment this morning and was a real trooper.  They had to wrap her up like a burrito to remove the wax in her ear - not a tear was shed.  She liked being wrapped up tight, although she did not enjoy us holding her head still.  Her tonsils and adenoids are incredibly large.  The doctor wanted to do a sleep study, but there is no way she will keep those electrodes on her head and chest.  So, he wants me to look for a few issues as she sleeps and then get in touch with him in about a week with my thoughts.  He also wants us to see another ENT who specializes in sensorineural hearing loss.  Wavey's hearing is getting worse and there may be other hearing aids/devices to assist her.

Thursday, January 14, 2010

Update

I am crossing my fingers that both of the kids are over the awful flu that has invaded our household.  They have been sick for over a week and just when I think they are on the mend, it strikes again.  I am desperate to get back on schedule.  We have been off since before Christmas and I need our routine back.

Tomorrow Waverly has an appointment with the ENT.  Her eardrum isn't moving due to wax and she has started to snore at night.  I anticipate they are going to want to remove her adenoids.  It is a common procedure, especially among MPS kids.  Oliver went through it last summer.

As long as Wavey is healthy, she will be back to school.  Her class is having their holiday party in the afternoon, since it was cancelled due to snow days in December.  A few of the other moms are going to be there assisting and I am really excited to get to know them.  Our children could potentially be in the same class for the next few years, so it would be nice to form friendship with the parents.  I will be helping the kids with cookie decorating.  Should be a lot of fun and delicious.

Tuesday, January 12, 2010

Ladies Home Journal

"A Hundred for a Home" made the national press!!  There is a small blurb about the fundraising efforts of Michele and Kamarah in the February issue of Ladies Home Journal.  It is on page 8.  Check it out.

Monday, January 11, 2010

Sick Days

It has been a very long weekend.  Both kids have been sick with the stomach bug.  We thought Waverly was on the mend, but she was sick again Saturday night.  Matt and I sat in the bathroom with both kids and 2 buckets.  Somehow they managed to throw up at almost the exact same time from 1am- 5am.  Fortunately, Matt took a sick day yesterday, so we could tag team them.  They both seem to be feeling better, but we are taking it very slow this morning.  I do not want to rush them and have it start all over again.  So no school today.  It is a stay-in-your-pjs-and-watch-movies kind of day.

I was able to take Oliver to his ENT appointment on Friday.  Everything looked great, except Oliver ears were filled with wax.  Kids who wear hearing aids tend to have a lot of wax build-up.  It can impede their hearing and sometimes cause their eardrum to stop moving entirely.  Poor Oliver knew as soon as he saw the table that he wasn't going to like it.  They burrito-ed him up and he screamed.  I tried my best to comfort him and thankfully he calmed down as soon as he was unwrapped.  Waverly wasn't able to go to the appointment, because she was sick.  The wait time to see the ENT is months.  Thankfully, he told me to just bring Wavey in to see him first thing next Friday morning.  He is very familiar with MPS and knows how important it is for her to be seen.  We know her right eardrum isn't moving due to wax (per the audiologist) and she is starting to snore/have more labored breathing at night.  I have a feeling she will need her adenoids removed.  I guess we will find out for sure in a few days.

My biggest disappointment from the latest round of illness is that Waverly had to miss a birthday party last night.  She has twin girls in her class and they turned 10 yesterday.  They had a swim party at a local rec club and we were so excited that Waverly was invited.  I felt terrible having to cancel.  Wavey would have loved the pool and water playground.  It would have been such a wonderful opportunity for me to meet her classmates and their parents.  Most of the kids will be in the same class together for the next few years, so I would like to form relationships with the moms.  I am hoping another opportunity presents itself soon.

Thursday, January 7, 2010

Connections

This morning I had the benefit of having nothing on my agenda.  The kids were both in school and I had a few hours all to myself.  I spent some time cleaning - I find it very rewarding.  And I was also able to chat with a mom whose daughter has Sanfilippo.  We met briefly at the conference in FL.  She is lovely and her daughter is so sweet.  She looks a lot like Waverly.  We shared our stories and connected through our similar experiences.  I was comforted with the reminder that I am not alone.  I am so thankful for the friendships I have formed with other MPS moms.

Wednesday, January 6, 2010

3rd 3rd Birthday Party!

Matt and I took cupcakes and fruit to Oliver's class for his birthday party.  We arrived as they were finishing a group PT session.  We first watched through the door window as Oliver walked through a little obstacle course.  He needed a lot of hand holding, but did perform the task.  Then we headed back to the classroom for a party.  I brought goodie bags filled with candy, crayons, and a memory game.  We sang "Happy Birthday" and ate treats.  I was worried about leaving, because I typically come into the class take him home for the day.  Oliver screamed as we said goodbye, but I think he recovered quickly and finished out the day.









Tuesday, January 5, 2010

Step 1



I took your advice and used foam stickers to decorate.  This is the back of the headrest.  I think it came out well and it very Waverly.  I am going to do some decoupage research and I may use that idea for the tray.  Thanks for the suggestions!!

Jelly Belly Save the Day

Last night we took Oliver for a haircut.  We packed the kids up and headed over to the local mall.  They have a kids' hair salon that has tvs at every chair.  Of course when we got there, it was closed for business.  Let me back up to say that Oliver hates getting his haircut.  He screams and throws himself all around, causing me to have a heart attack for fear he is going to be cut.  I ventured into Hair Cuttery and they had someone who specializes in kids' hair.  So I put him on my lap, covered us up with an apron and told her to get cutting.  We tried using lollipops to placate him, but he kept taking it out of his mouth to scream and it would get covered with hair.  Yuck!  Fortunately, I had a box of Christmas Jelly Bellys in my bag.  He ate the entire box, but in the end he had a lovely cut.  We went shorter than usual, so the next haircut won't come so soon.



Monday, January 4, 2010

At Long Last

Waverly's chair FINALLY arrived this afternoon.  It took over 8 months, but it is here.  It is technically called a classroom chair, but is basically provides a safe place for Waverly to sit and eat.  She is simply too big for a highchair or booster seat and she can not longer sit in a regular chair.  It provides her with supports for good posture.  It also comes with a HUGE tray for eating and playing.  The chair is totally adjustable, meaning it should fit her for years to come.  It is a bit plain to look at and a bit overwhelming at first, but it is going to make life a little easier.  I think it will also be portable enough to take with us on visits to family and friends' houses.  She loves sitting in it.

I am trying to think of ways to decorate it a bit - make it Wavey's.  If anyone has any ideas, please share. I am not super crafty.  It is a laminated wood.  I am thinking stickers.




O-H-I-O!

Matt grew up in Ohio and attended law school at OSU.  He is a big fan of Ohio State football and I think  it is rubbing off on Oliver.  Here he is supporting the team on Friday's big game.  (OSU won!)


Saturday, January 2, 2010

Beautiful Quote


"There is a sacredness in tears.  They are not the mark of weakness, but of power.  They speak more eloquently than ten thousand tongues.  They are messengers of overwhelming grief...and unspeakable love."
-Washington Irving-