Meet the McNeil Family

Meet the McNeil Family

Tuesday, September 30, 2008

Recap

Yesterday was a tough day.  Waverly was sick sick sick.  She had some type of stomach bug and it was not fun for any of us.  Oliver seems to be in the beginning stages of the illness now, too.  At least it is short lived.  Hopefully, Matt and I will be spared.

We were able to see an old friend from college last night.  He was close with Matt and is in town on business.  It was very sweet, because he really wanted to meet Waverly & Oliver.  After hearing about them and reading about them for awhile, it was important to see them in person.

Oliver had his first physical therapy session this afternoon.  He wasn't feeling very well and was extremely tired.  But, the therapist and I were put together some goals for improving Oli's balance and coordination.  I love that they come to our home.  It makes it so much easier on us.

This should be a quiet week for us.  Next weekend we will be moving into our new apartment and things will be chaotic again, but this week will hopefully see everyone healthy and happy.

Monday, September 29, 2008

Request

Todays post is just a request.  A friend of mine from college just lost her husband very suddenly.  I know that there are many of you who read my blog who pray.  Please pray for Kelly.  Thank you.

Sunday, September 28, 2008

Crying

Waverly has been crying a lot the past 5 days.  She is weeping and for no apparent reason.  We aren't sure if this is a new phase or stage in her disease, or if she is hurting.  It is terribly painful to see her respond like this.

We had the pleasure of going to a friend's home tonight.  She hosted a little get together for 5 families who all spent time together in London.  4 of the families have relocated to the DC area and 1 was just in town visiting.  It was wonderful to be around friends.  They have watched Oliver grow from a little baby into a big-bellied toddler.  They have also seen the changes in Waverly and have supported us through the entire process.

I am so glad we are back.

Friday, September 26, 2008

Moment

Last night I had a "moment".  These are the times when everything overwhelms me and the only thing I can do is weep.  Matt met a friend after work, so it was just the kids and I for the evening.  After dinner and bath we were playing in the living room.  Of course Oliver is moving from toy to toy, finding anything that makes noise.  Wavey was rolling around on the floor and snuggling up to me.  All of a sudden, her smile turned into the saddest face - bottom lip out, corners of her mouth turned down, eyes teary.  It lasted about 5 seconds.  She just stared at me, about to burst into tears.  Then it passed.  These are the moments that scare me the most.  I feel like in that instant she was scared from all that is happening to her.  I could see the pain on her face.  I take some solace in the fact that she seems unaware of most of the changes.  But sometimes she wants to say something so much - she pulls in super close to me and stares into my eyes.  Then the moment passes and she wanders away.  I long to know what she is trying to say to me.  These moments are so painful.

Thursday, September 25, 2008

So Proud

I am so proud of Oliver today.  His speech therapist/hearing impaired educator was here today for our weekly session.  Oliver spontaneously and appropriately signed "more" and "finished" and we think he tried to do "bubbles" too.  His attention span for activities is fantastic!  He did such a great job and she was so impressed with what he learned in just one week.

Priya, you would have been very proud of him.

There is always heartache, because I know that we will hit a point when he will begin to lose these skills he has mastered.  But for today, I am celebrating my little boy's achievements.

Wednesday, September 24, 2008

Oliver's New Do

Before.

And after.

Counting Down

Today has been a good day.  Waverly repeated 2 words today that I haven't heard for awhile.  She said "stop" & "running".  As you can probably decipher from those words I had to scold her for running away from me while we were waiting for her school bus.  But she repeated words!!  This is such a rare occasion these days that I immediately texted Matt with the news.  We are both so proud.

Oliver had a haircut this afternoon.  I usually go to the pay a little more, but the kids can sit in a fire truck and watch a movie places.  Distraction works well for both kids.  He did quite well and looks so dapper.  I will take a photo of him when he wakes up from his nap.

In fun news, we have decided to take a trip to Disney World later this year.  I am counting down the days until we are in the magical world of Disney.  Say what you will, but our kids LOVE it there and we do too.  Mickey Mouse Clubhouse and Winnie the Pooh are Wavey's favorite shows and she is also obsessed with Dumbo.  She is going to be amazed that she can meet them and ride in Dumbo.  We were going to wait, but we want Waverly to experience Disney World while she can still run and play and truly enjoy all it has to offer.  I wish we could go every year just to see the smiles on their faces.

Tuesday, September 23, 2008

IEP

I had Waverly's IEP meeting this morning. It went well.  I felt understood and that felt wonderful.  They listened as I gave a brief synopsis of Sanfilippo and I provided them with additional research & literature to read.  I really believe that with some understanding of the disease, they will be able to be much more effective and considerate with Waverly.

I didn't get the one-on-one aide that I was hoping to get.  However, there is now a floating aid assigned to her during playground time.  They are also going to work with some assisted communication devices to help her in class.  I am hopeful that with an FM system, Wavey may be even more successful in class.

I am also working on getting some private therapy services in place for Waverly.  I think I have it set up, I am just waiting on insurance to respond with coverage details.

Everyday something new comes up.  I am working with a case manager to see what waivers we are eligible for.  This is going to be a long and difficult process, but I am ready to tackle it.

Monday, September 22, 2008

Smile

Josh took this photo of Waverly on Saturday and I just had to share it with all of you.  This is a true happy girl smile.  She looks so beautiful.  Glimpses of this smile are getting more difficult to capture, but we have this one.

We miss you Josh & Katie

We had a wonderful Saturday with our friends Josh & Katie.  They flew in to see the family.  They are some of our dearest friends and spent more time with Waverly when she was younger than anyone.  Their son was Wavey's first best buddy - they were adorable together.  It was so nice to be with friends who have been with us throughout this difficult journey.  I do think it was difficult for them to see how much Waverly has changed over the years.  I miss good friends.

In other news, Oliver has conquered the use of a spoon and is now feeding himself.  He was supposed to begin physical therapy today, but we had to reschedule.  I am anxious to get that service started.  He loves the playground, but isn't nearly as mobile as other kids his age.  Waverly is doing well.  She has been a bit manic in the mornings and then calms down in the afternoons.  She still loves getting ready for school and going on the bus.

I have her IEP meeting in the morning.  Thanks to everyone who wrote or commented with suggestions.  I think I am ready for it.

Saturday, September 20, 2008

Thank You!!

This is my friend Sarah and her beautiful family.  Today they participated in a walk for MPS in Michigan.  Sarah has been an incredible source of encouragement and support for me.  I was so touched by the fact that they spent part of their Saturday showing their support for MPS research and families.

There are other walks going on this month and next all over the country.  Please check out www.mpssociety.org for details on walks in your area.

Friday, September 19, 2008

Beautiful


Here are 2 photos I took this morning.  Waverly is coming home with so many art projects and I love having them all over the house.  I put her painting on the door yesterday.  She HATES to paint, but with some assistance she created this beautiful picture.  I love it.

Matt and I reading up on the upcoming IEP meeting.  We are reading through our rights and what to expect.  I was really hoping not to have to go to battle.  I thought that will all of the documentation we have from so many therapists, teachers and doctors.  Plus the medical diagnosis, that it would be easy.  I am not looking for extra services or specific placement.  I just want to know that when I send Waverly to school she is going to be safe.  And right now, I do not feel like the district is providing that for her.

I appreciate the comments and e-mails from those of you who work in the special education field.  Waverly is a unique case, according to everyone, since she is regressing.  Setting goals is difficult.  I am hoping that if I can education the panel on what Sanfilippo is, they will have a better understanding of Waverly and what she requires.

On a different note, we have some very dear friends flying in to visit us tomorrow.  They were with us for Waverly's first 3 years, when we were living in Columbus.  I am so excited to see them and to have them see the kids.  I think it is most difficult for those who knew Waverly when she was younger - the incredibly sweet, reserved, attentive little girl.  But they will love the girl she has become, too.

Thursday, September 18, 2008

Frustration

Today has been a disappointing day.  I was hoping that the initial meeting with Waverly's teacher regarding the IEP would have gone better.  It seems that we have a long road ahead of us, in terms of advocating for Wavey.  My concern today was mostly for her safety.  She requires CONSTANT attention and the teacher said that Waverly has run away from the class when they are on the playground, wandered away and ended up in another classroom, and puts everything she can find in her mouth (including small chokeables).  The teacher or her assistant has to be with Wavey at all times.  Based on this information, I am going to begin the fight to get an aide assigned to Waverly.  I will meet with the school officials on Tuesday to do the official IEP review.  I plan to go armed with information on Sanfilippo.  I think they just do not understand the scope of this horrible disease.

Tuesday, September 16, 2008

Travels

Today was another good day.  I cannot stress enough how well things work with a schedule in place.  Waverly really enjoys her routine.  I am now taking her on the bus to buckle her in, because she was having issues with that part.  Now she just smiles and waves goodbye as I step off the bus.  She comes home excited (and sometimes asleep).  I am so pleased with her preschool.

Oliver had his first session of therapy today.  She comes to the house and specializes with toddlers who have a hearing impairment.  Oliver loved the attention and having a new friend.  Plus, she brought toys with her.  Our goal is to try to get Oliver to begin copying sounds and repeating.  We will continue to support his language development with signing.  He is so social and happy.

I am so pleased with the way things are coming together for the kids.

I have talked about how much I London.  Today, I am really missing the foreign service life.  There have been so many things to mourn so far on this journey.  Today I am mourning the loss of our plans - we hoped to live overseas and move all over the world with Matt's job.  It is difficult to give up that dream.

Sunday, September 14, 2008

Beach Photos

Here are some photos from our trip to Virginia Beach.  The first 3 are from our surrey ride.  As you can see, the kids really enjoyed it.  The next photo is Oliver's sandy feet.  The last photo is Waverly enjoying an apple in our room.  We had a great time, although Matt and I are suffering from some sunburn.  We put so much effort into making sure the kids were coated in sunblock, but forgot to be so thorough with ourselves.



Sitting in the Surrey

We are at the beach and having a wonderful time.  Oliver absolutely loves it.  He loves playing in the sand, sitting in the surf, and being held out in the water.  Waverly is more hesitant and would rather wander around the beach.  She doesn't have an attention span that allows her to sit and play for more than a moment.

We also rented a surrey last night.  The kids sat in baskets up front and they were totally adorable.  We were able to get some wonderful photos and I will post them tonight or tomorrow.  That is going to be a memory that is going to stay with me for a lifetime.

I had so much fun on Friday getting together with my old friend, Katie, on Friday.  It was nice to have someone who has read about the kids for so many months, to finally meet them.  We have some very good friends flying in next weekend and we are anxiously awaiting their arrival.  I am really looking forward to reconnecting with people.

Friday, September 12, 2008

Waves

I am so excited that the weekend is almost here.  We are heading to the beach to relax and celebrate our 10 year anniversary.  Oliver is going to love playing in the sand.  His buckets and shovels are some of his favorite toys.  Waverly is going to like walking in the waves.  I am hoping for sunny skies...or at least no rain.

This has been a good week.  We are settling in nicely to our schedule.  Waverly really seems to enjoy school (although she doesn't like having to stay on her mat for yoga - yes they do yoga in preschool).  Oliver is enjoying having some one-on-one play with me and he is beginning to make more sounds that sound like words.  I am hoping that our face to face play with signing is helping to build his vocab.

We met with a social worker yesterday.  There are some waivers that we may be eligible that can help with services and insurance/medical bills.  I have started the process on the 2 we can apply for.  The best one has a 5 year waiting list!!!  It is insane.  It is nice to have someone who knows the system assist me in navigating it.  There are so many helpful programs out there, but no way a regular person could find them.  I love having her help.

I am expecting an old friend from high school to arrive soon.  She will be our first VA house guest.  I am excited to see her and have her meet the kids.

Wednesday, September 10, 2008

First Days of School

The kids and I on our way to Wavey's first day of US preschool

Waverly with sun in her eyes

Waverly ready to ride the bus to school

Oliver waiting for the school bus to arrive

Last Days in London

Matt and Waverly in St. James Park

Waverly at Green Park

Oliver in Grosvenor Square

Oliver still in Grosvenor Square

Waverly & Oliver in front of their therapists' office

London's Innocent Festival Photos


Waverly riding in an airplane
Oliver watching the carousel
Oliver communicating with a golden retriever

Tuesday, September 9, 2008

Structure

We are beginning to settle into a schedule and it is wonderful.  We all work better when we have structure and can anticipate what is coming next.  Waverly rode the bus to and from school today.  I think she enjoys it.  She loves being in a car and the other kids entertain her.  Oliver and I are able to run errands, go to the park, or have some therapy play together without distraction.  It is nice to have that one-on-one time with him.

I had a consult meeting with our pediatrician tonight.  She is wonderful!!  We were able to sit together and go over the past 16 months.  She is now up to date and willing to do what ever she needs to do in order to help us through this.  I feel so fortunate to have wonderful medical care and people invested in taking care of my kids.  This is why we returned to the US and tonight validated that decision for us once again.

It seems that every time one area of my life feels secure other areas become more chaotic.  That is proving to be the case once again.  The past week has been incredible difficult for me, personally.

I have been so encouraged by those of you who read this blog.  It has become therapy for me to sit down and write to all of you.  Thank you for being so interested in Waverly & Oliver.  I wish that I could return to our anonymous way of life, with 2 happy & healthy kids.  But since this is the path our lives have taken, I am glad that so many of you have fallen in love with my beautiful children.  I think their impact in your lives helps to soften the blow of this terrible disease.

Monday, September 8, 2008

Thank You

I wanted to thank those of you who sent the kids the beautiful blankets.  That was such a lovely gesture and much appreciated by our family.  Waverly & Oliver are going to love them.  Thank you!

Messy

What a day!!  My kids are pukers.  If they don't feel well at all, they are going to throw up.  We have thrown up all over the world, but their favorite place is our car.  Today, Oliver threw up all over himself and his car seat.  I had to carry him in his car seat into the tub, because it was that   messy.  Yuck!!

That aside, Waverly had a wonderful trip to school on the bus.  She really enjoys preschool and being with the other kids.  I am feeling much more comfortable with everything.  I am meeting with her teachers in a few weeks to rewrite her IEP.  I am hoping not to have to fight to get what Waverly needs and deserves....but I am ready.

I am feeling at home here in Virginia.  We have an incredible number of doctor appointments coming up, but I love it.  I know that we are doing the best we can to take care of our kids.  It is so refreshing to have accessible doctors capable of helping Waverly & Oliver.  I have unpacked the 10 huge boxes that arrived from London and the apartment is feeling much homier.  I really like it here.

Sunday, September 7, 2008

Comments

We just returned from a weekend in PA.  The kids LOVE spending time with their grandparents and Matt & I enjoy the free babysitting.  We were able to see lots of friends and family today at a picnic.

We enjoyed our anniversary.  I cannot believe that 10 years have passed since our wedding.  I have been given a wonderful partner.

A bunch of people have recently told me that they would love to comment on our blog, but they can't figure out how to register.  So, I have made it easier.  You no longer have to register with google, just with my blog.  Hopefully it will make it simpler.

Waverly took the school bus on Friday morning.  I have to say that I cried after I put her on the bus.  She seemed to love it and the assistant & driver were both wonderful.  We will give it a try again tomorrow.  If she doesn't freak out when the bus pulls up, then I know she enjoyed herself and we can continue with it.

Our air shipment arrived from London, so I finally have the cords to upload new photos.  I will take some soon, so you can see Waverly with her pretty pink backpack getting on the bus.

Friday, September 5, 2008

Happy Anniversary

Matt and I are celebrating our 10th anniversary today!!!  And it has been quite a 10 years.  We have been given 2 amazing kids, if only for a short while.  The road ahead is scary, but there isn't a better partner for the journey.

Thursday, September 4, 2008

User Friendly

Today we went to Children's for our first appointment with our new doctor.  She specializes in lysosomal storages diseases (including MPS).  She was wonderful!!  She is familiar with kids who have Sanfilippo and she was so incredibly sweet with the kids.  She is obviously competent and is working on setting us up with all of the specialists we need to see and begin to form relationships with.  I have spent more time than I care to think about at doctors' offices.  I hate waiting all that time to then deal with someone distant and cold.  It is a breath of fresh air to meet one who is so "user friendly" (in her words).  She gets how difficult it is to bring them to the doctor and she was very careful who to recommend we see.  Things are coming together!

Wednesday, September 3, 2008

Loves Preschool

Waverly loves going to school.  Even though she can't tell me, when I told her that we were going to get ready for preschool, she started "happy screaming" and ran over to her backpack.  She went right to her teacher and marched off to her class.  I was so proud of her.

Tomorrow we are going to take both kids to Children's to meet our new specialist.  I am excited to get further details on Sanfilippo and have some of my questions answered.  Plus, we have a lot of additional specialists we need to see.  There is so much to be on top off.

Tuesday, September 2, 2008

Help

We will be moving into our new apartment on October 10-12.  We will be painting, cleaning, unpacking boxes, setting up furniture...the usual move-in things.  (You don't have to move in boxes - the movers will do that for us.)  I know that many of you have been asking for ways to help.  If you happen to live near us and are willing to assist us, we would LOVE the help.  My folks are coming down to help with the kids, while Matt and I try to get the apartment set up.  The more hands the better and quicker.  Just let me know if you are interested and I will send you details.  Thank you so much!!

We Survived

Today was Waverly's first day of school.  Matt was able to go with us for her first day.  The "hand off" with her teacher was extremely chaotic.  I think they need more hands to help with 8 special needs children.  But, when I picked her up she was smiling and seems to have had a really fun day.  I don't know any specifics, because there isn't time to talk with her teacher.  She had fun and looked adorable with her new pink backpack & lunch box.

This weekend was fun.  A 3 day weekend is always good - it is nice to have Matt around for an extra day.  We were able to go to a park that was designed for kids with special needs.  A friend and her family met us there for play time and a picnic.  We also went to a BBQ at one of Matt's law school friend's home.  It was nice to reconnect with old friends...even though Waverly had 2 HUGE bloody noses that dominated our evening.  All in all it was a fun weekend.

We have decided to take a weekend and head to the beach.  The kids will love it and Matt & I can relax on the sand.  Our 10th anniversary is on Friday, so this will be a little gift to ourselves.  I hope all of the hurricanes stay away!