Just As You Are

Yesterday I got a photo from Waverly's teacher.  She was so excited because Waverly, after much hand over hand prompting, rolled a truck back and forth on the floor for a few seconds.  Incredibly simple action, but this is HUGE for Wavey.  She doesn't play with any toys anymore, at least not appropriately.  Everything goes straight into her mouth.  I had to laugh last night, in the midst of tears.  I was thrilled to hear that Waverly learned this small skill and I wanted to celebrate.  Then I was quickly reminded that this is not something most moms of 5 year-olds get excited about.  But that is what makes our little family special.

There are moments when I say "I wish you could have known her when...".  I fill in the sentence with some behavior or something she used to say before the disease ravaged her little brain.  Of course I wish I could take the MPS away and watch her live a healthy life.  But I am beginning to fully realize the incredible beauty in who she is now.

Date Night - Twice

We had a wonderful, if rainy, weekend with my folks.  Matt and I were able to get a lot of time alone together, which is always such a treat for us.  Today, the sun eventually broke through and we headed to our favorite park for a bit this afternoon.  Waverly has been wearing her Minnie Mouse backpack ALL day and she has been wanting to read all of her old favorites.  Oliver has been busy playing with every toy he can find.  All in all a very relaxing weekend.

Happy Little Boy

Successful Meeting

We had Waverly's IEP meeting this morning and it went so smoothly.  We had to table the most difficult items on the agenda (services and placement), but I think we are all on the same page.  At times I have felt as if Waverly was so misunderstood by everyone, that they weren't looking for the best options for her.  Our situation is very unique in that our children have a regressive disease and they will continue to loss skills.  It is difficult to create goals, when our objective is maintaining skills and adapting to change.  Since we requested Waverly to have a new classification, each of the involved parties has spent more time with her and they have read through all of the material I gave them.  They came to the table today with a much greater sense of compassion and understanding, and it made an incredible difference.

Matt and I are going to tour the different school placement options within the next few weeks.  Then we will all meet up again to come up with the best environment for her.  I am hopeful that we will all be on the same page.  I truly feel like they are looking out for my little girl and it feels wonderful!!

Reinforcements

My parents are on their way down for the weekend.  Matt and I have an IEP and placement meeting tomorrow morning for Waverly.  I usually do these meeting by myself, but I will need his help with this one.  We are hoping to get a one-on-one assistant for Wavey at school and I think it may be quite a fight.  Matt is much better in this situation, than I am.  I don't like to cause trouble and Matt does (he is a former attorney!).  Oliver also has a doctor appointment in the afternoon, so it is going to be wonderful to have my parent's help.

This has been an emotional week for me.  I think the seizure was the reminder that this terrible disease continues to bring changes.  Wavey's poor little brain is being destroyed by the GAG buildup and the seizure was evidence of that.  She is having so much difficulty staying on her feet.  When she walks she leans forward so much that it causes her to stumble.  It is difficult to find the balance of wanting to keep her moving and on her feet, while also keeping her safe.

Exhausted

We are all exhausted.  Last night Oliver had a sleep study at Children's Hospital.  His ENT wanted it done before we have his tonsils and adenoids taken out.  Oli is a snorer and he is awake a lot during the night.  All things considered, he did beautifully.  He slept most of the night with 18 leads taped to his head and chest, and a tube in his nose.  I was up throughout the night adjusting the tube and keeping his hands from pulling everything off.  I am hoping they were able to get all of the information they needed and we can schedule the surgery soon.

Waverly had a rough day at therapy this morning.  She had been doing such a beautiful job, but today she cried and protested throughout her session.  I am interested to see how she did at school.

Seizure

Well, the anniversary of Waverly's diagnosis came and went.  I think the anticipation was worse than the actual day.  I spent some time remembering that day in an exam room at CHoP.  I remember thinking that we couldn't handle the diagnosis, but we have and we will.

It was a just a regular day for all of us, ending with a road trip to PA to visit my family.  My sister and her family came down from NY, so we had a full house.  It was great to be with everyone and the kids loved all of the attention.  On our drive home we stopped by a friend's house and had a wonderful dinner with them.  Katie and Neil have been incredible and created such a comfortable and safe place for Waverly & Oliver.  It was wonderful!!

Very early this morning, however, Waverly had her first seizure.  We were told by the specialists at UNC that she would most likely begin having them this year.  Even though we knew they were inevitable, it was still a shocking and frightening experience.  It was very short, only about 10 seconds.  It happened while she was sleeping in our bed, so she was safe and received lots of cuddles when it was over.  I was up for hours afterwards - it was very scary for me.  I suppose this is going to be yet another thing we will adjust to as a family.

Signing

It has been a fairly emotional day for me today.  A few little things happened that were reality checks for us.  And tomorrow is going to be a difficult day for our family.  I think it may be difficult for some people to understand the significance of the diagnosis anniversary.  Life, as we knew it, changed so drastically that day.  We want to honor the moment, while celebrating our beautiful children.

In other news, Oliver learned a new sign today.  He signed "help" and it was wonderful.  I love watching him learn new words and put them to use.  

Circus

Matt and I took the kids to the circus tonight.  We got free tickets from a special needs organization in the area.  We picked Matt up from work, headed to the arena and enjoyed some soft pretzels and cotton candy.  We only stayed for the first half, but it was great.  Waverly sat beautifully with Matt holding her in her seat.  Luckily no one was in front of her or they would have a very bruised head from her kicky feet.  Oliver cried for most of the first half, but then settled in and enjoyed himself.  He even clapped at the end.  It was such a great change for all of us to get out together and enjoy an evening.

Oliver in his seat.  It kept folding up on him.

Wavey & Oli taking in the show.  (Wavey's eyes are closed, but I love Oli's face on this one.)

Matt, Oliver & Waverly on the way to the arena.

Anticipation

We had quite an uneventful weekend.  It was chilly and rainy.  We chose to stay in most of the weekend, except for a trip to Ikea.  It is always a good place to go on a rainy day - I love to look at everything and Matt loves their hotdogs.  (They are only 50 cents!)  Sunday night I was able to meet up with 2 new and very dear friends.  Carrie and I went to college together.  Laura is a friend of Carrie's from church.  They both have beautiful little boys with significant health issues and special needs.  It is such a gift to be able to talk face to face with other moms facing the many doctor appointments, therapy sessions, medicines, etc.  It is a wonderful time to feel understood and not alone.  I am so thankful for their friendship.

Friday is the 1 year anniversary of Waverly's diagnosis.  I have been consumed with the date quickly approaching since last month.  I've been looking at my planner from last year and remembering the 6 weeks we were back in the US for all of the doctor appointments, like a strange memory countdown.  I know it is simply a date, but our lives changed drastically that day.

Beautiful Blanket

My very dear friend Michele and her mom made this beautiful blanket for me.  Soon after the kids were diagnosed, I asked Michele if she would be willing to make a quilt from baby clothing and other items I have saved for the kids.  I thought it would be a wonderful way to "warm myself with good memories".  They did such an incredible job!!  I was so excited when the box arrived yesterday.  I cried hard when I unrolled the blanket and went over each patchwork piece to remember where it came from.  Such good memories...

Oliver the Artist

I picked up a paint with water "Handy Manny" book at Target last week.  He is beginning to show interest in coloring and other crafty activities, so I thought this would be a good introduction to painting (and less messy).  He loved dipping the brush in the water, but didn't quite get the "painting" part of the activity.  Baby steps.  It was fun to begin to take advantage of this stage.  Waverly LOVED coloring and painting until about age 3.5, then she just began chewing all of the art supplies.  She dislikes anything crafty now, but we still try to work on those skills using hand-over-hand techniques.

In other news, I am hopeful that we have come to a resolution with our insurance company.  Long story short, they are going to make an exception for our kids based on "continuity of care" and allow them to stay with their OT and PT.  This is a HUGE win for us and removes a lot of unnecessary stress.  We are just waiting for the final details, but it looks like we have a deal.

Happy Birthday, Navi!!

This is 1 year old Navi.  His Mom and I worked at a camp together many years ago and she remains a very dear friend.  Erin and her partner Kelli decided that in lieu of gifts for Navi's first birthday, they were going to host a party at a local restaurant in Brooklyn called Autour du Monde (check it out if you live in the NYC area) and ask their friends & family to donate to "A Hundred for a Home".  Erin (with help from her sister Courtney, another very dear friend) even sent out press releases and got attention from a Brooklyn blogger and local cable channel!!  The party was a success...good food, lots of friends and a very happy birthday boy.  Plus, they were able to spread the word about MPS.  Raising awareness about this terrible disease is the best way to get the research attention it needs to find a treatment and cure.

Thank you Erin, Kelli, Navi and all of your party guests for loving Waverly & Oliver.  We are so appreciative of your efforts to help us find a home that will meet their needs.  And Happy 1st Birthday, Navi!!

Dream Home

What a glorious weekend!!  Spring has arrived and the sunshine & warmth has been so good for my soul.  Yesterday we met my cousin, her husband and their precious one month old daughter at a local park.  The kids played and then we went out for lunch.  I love spring!!

Then we went to an Open House.  We drove by this beautiful home on Saturday, checked it out online and knew we had to see it.  We took turns touring the house and came out feeling like we found the perfect house for our family.  It has everything that we were hoping to find and we think it will accommodate Waverly & Oliver beautifully.  It is still a little bit out of our price range, but we are hoping for a miracle.  Even if this particular house isn't the one for us, at least we know that what we want is out there.

Today I took Waverly in to get the molds taken for her orthotics.  The woman we met with is amazing!!  She was so kind to Waverly and created a peaceful environment for something that I thought would be very stressful.  Waves was a trooper and did a great job (she hates when people touch her feet).  Her new orthotics should be ready in about one month.  I am hoping they have a positive impact on her ability to walk.  The more time she can spend on her feet, moving around on her own, the better for her overall health.

Spring Has Sprung

For those of you who have been following our story, we love spending time outdoors.  We love to spend our weekends walking and picnicking.  The weather today was absolutely gorgeous.  We decided to head down to the National Mall and enjoy the sites.  Here are a few of our photos.

After much searching, we found a double stroller that is strong enough to hold both of our kids.  (Thanks for the suggestion, Nicki!)  We had a great time breaking it in today.  It fits our needs perfectly.

Here is another shot of the kids in front of the Lincoln Memorial.

Oliver and Matt walking to the Korean War Memorial (my favorite).

Oliver enjoyed knocking on the Washington Monument.  He loves knocking on walls, doors, whatever.  He had just tripped right before I took this picture, but I love his sad face.

Sweet Carolyn

Last night I found out that a Sanfilippo family is about to lose their precious little girl, Carolyn.  Her mom posted a beautiful note on a forum for MPS families.  Sweet Carolyn is 16 years old and coming to the end of her journey.  I spent about an hour last night sobbing for their family and wishing that there was something I could do to prevent our beautiful kids from leaving this earth much too soon.  Carolyn's mom asked for people to keep them in your thoughts and prayers.  She also asked for all of us to give an extra hug to our kids, take the trip the zoo or the playground, or enjoy the beautiful spring weather with your family.  Remember Carolyn today and do something lovely in her honor.

Morning With Daddy

Matt took these photos of the kids this morning.  I thought they were adorable and had to share them with all of you.  By the way, Waverly was not sad in the second photo.  She is just making a face.

Accurate Description

I had another meeting with Waverly's school this morning.  Waverly was originally labeled as a "speech/hearing" special need, but as you know her needs are so much more than just speech and hearing.  After a battery of developmental evaluations, the input from our doctors at UNC and a discussion among all those involved, Waverly has been reclassified as "multiple disabilities - severe disability and hearing impaired".  This is a much better descriptor for all of her special needs.  Next step is the IEP meeting....

We have tentatively scheduled that for the end of the month.  Matt and I will attend together - yeah!  I have a tendency to not what to push too hard or hurt anyone feels, he is very direct in the kindest way possible  - he is a diplomat!!  It will be so nice to approach this meeting together, as a team.

I came away from my meeting this morning really feeling like Waverly is loved by those who interact with her.  She is in good hands while at school and I am so thankful for that security.  I am hopeful that as a group we can decide where the best placement is for her and what services will be most helpful.  The most difficult point is going to be our desire to have a one-on-one assistant for her in the classroom.  There is plenty of documentation to support our request, I just hope that it is granted.  We are adamant about her need for constant supervision and support.

The Good & The Bad

Waverly has had excellent eye contact the past 2 days.  Both of her therapists and all of her teachers have commented on it.  I am so excited that they are having moments of connection with her.  She is continuing to have some gross motor problems.  She is now to the point where she has to crawl over to a chair/table or have someone help her get up from the floor.  It is so painful to watch her try to get up from sitting on the floor and be totally unable to do so without extra assistance.

We are taking her in next week to get orthotics.  Even though our insurance isn't going to cover them, we just received our approval for Virginia's EDCD Waiver.  This gives the kids access to Medicaid, which will act as our secondary insurer.  Matt and I are SO incredibly thankful for this program.  Waverly & Oliver are really going to benefit from the extra help.

Snow Day

We had a wonderful weekend in PA with my family.  The kids had a ball!  We made the rounds visiting all of the family members.  We had to leave early yesterday morning, so we could beat the big snow storm.  The snow arrived yesterday afternoon and it is beautiful.  The kids had a snow day and even Matt was able to go into work a few hours late this morning.

Even though the snow is beautiful, we are all desperate for spring.  As a family, we really enjoy being outside, taking walks, going to the playground, etc.  Winter has been long and we are ready to get the kids outside again.