Thanksgiving in PA

We have returned from a trip up to PA to visit family.  It was so nice to have time away with everyone.  We had a wonderful Thanksgiving.  My mom makes a FANTASTIC meal and we ate so well.  Plus, we got slices from our favorite pizzeria.  

We hadn't seen my sister and her family for a few months.  She has 4 beautiful kids who were so incredibly sweet with Waverly on this visit.  I think she has taken the time to explain why Waverly is different and they just accepted her.  I was so thankful to see such understanding and compassion from children.  Matt and I were moved to tears by their love for our sweet little kids.

Waverly had a tough few days.  I think the new environment and all of the people were a little too much for her.  But, after she adjusted she did well.  I think my entire family saw the changes that I have talked about.  Waverly was much less interactive with everyone and just seemed to be in her own little world.

Oliver loved being with his cousins.  His almost 4 year-old cousin loved to "pet" him and walk around the house guiding him around.  It was adorable.

I am so thankful for my family and the love they show to Waverly & Oliver.

Road Trip

We are about to leave for our drive up to PA to spend Thanksgiving with my family.  Waverly was so excited when I told her we were going to see Grandma & Grandpa.  I waited to tell her until after she got off the bus.  We are going to pick up Matt at the metro station and then away we go.  I am hoping the traffic won't be too bad.  I am so anxious to see everyone.

This has been a rough week for all of us.  There have been many more changes in Waverly.  I think we are entering another hyper stage.  It is difficult because she has so much energy, but very little coordination and her brain just doesn't understand.  She is climbing on everything and chewing like I have never seen her chew before.  Her hands are losing strength.  She can't hold onto a ziploc bag anymore (I always carry them with me filled with snacks for the car.  Now I have to pass them to her one at a time.)  She is falling more and more.  And then we look at Oliver and know that he is going to have to endure these same difficulties.

This is going to be an emotional Thanksgiving.  At times I don't feel like I have a whole lot to be thankful for.  Yet,  I cherish every day I have with the kids and I am thankful to spend this time with 2 incredible souls.

I hope you all have a very happy Thanksgiving.

Appointments

I just returned home from another doctor appointment for the kids.  We met with an orthopedic doctor.  Kids with MPS tend to have issues with their hips, so we wanted to have them x-rayed.  Waverly's feet are turning inward more and more, too.  They took hip x-rays and everything looked good for Oliver.  Waverly looks pretty good, but they did show some problems...nothing that requires any treatment though.  Our doctor has referred us to a doctor of physical medicine.  They will be able to assist us in the future with braces, walkers and wheelchairs.  It is a muscular issue, not a bone/joint problem.  Wavey may need to be fitted with braces for her legs to help her keep from tripping over her own feet.  Of course there is a waiting list of 4 months to get in to see someone.  But, we do have an appointment scheduled in March for both kids.

Waverly had a better day today.  She fell asleep within 15 minutes last night and slept all night long.  She was very excited to see one of her favorite books arrive in the mail, "Elmer and the Lost Teddy".  (She destroyed our copy and I found another copy on e-Bay.)  She actually sat and looked at the book for about 10 minutes - a record in attention span terms!!

We are really looking forward to heading to PA tomorrow to be with family for Thanksgiving.  It is always stressful putting Waverly in a different environment, but she loves being with her Grandpa & Grandma and all of her cousins.  I think it is going to be a wonderful holiday for all of us.

School Party

Wavey's teacher just sent me these photos from Wavey's birthday party last week.  I LOVE the first photo.  She looks so happy.  I brought Mickey Mouse Clubhouse cupcakes for her class.

Life in London

Matt put together a bunch of our photos from our time in London and created a video.  I think he did such a great job capturing our time there.  Enjoy!

Pretty in Pink

Waverly in her new glasses.

Thank you for your comments and messages based on my last post.  There will be many more changed to come and I am so thankful to have your support.

We had a good weekend.  Yesterday we spent time at home, while Matt enjoyed OSU's big win.  Last night we drove up to MD to have dinner with a high school friend of mine.  She and her husband had our family over for a delicious dinner  It was so nice to meet her adorable 2 children.  I tend to get nervous when taking Waverly into a new environment.  I don't want her to get hurt or break anything.  It is so difficult to find anything to capture her attention, so Matt and I spend most of our time holding her hand and wandering the house.  Katie was so thoughtful and put away all things breakable or chokeable.  She also tivo'ed some Mickey Mouse Clubhouse episodes.  It was great.

This morning we woke up to a dead car battery.  Thank you AAA for coming to our rescue and supplying us with a new battery.  We ran some errands and went to our favorite little pizzeria, only for Matt to leave our box of leftover slices on the roof of the car, for the second time.

Waverly had an incredibly difficult time falling asleep tonight.  It took us 2 hours to get her to fall alseep.  Hopefully she will sleep in tomorrow, so she has a better day at school.

Change

Tonight was difficult.  I had a message from Waverly's teacher that she was throwing everything she could get her hands on and chewing all sorts of new objects.  She said Waverly was very challenging today.  Based on what I saw since she came home from school, I agree.  Wavey was trying to stand on the backs of sofas & chairs, knocking over lamps and tables, and she was throwing a lot of toys. 

 We also have noticed over the past few weeks she is tripping and falling much more often.  (Her teacher reported seeing the same change.)  And tonight, I was trying to engage her in some play.  When I gave her a tube that expands when she pulls it, she wasn't even able to grasp it tight enough to hold onto it.  It just kept slipping through her fingers. 

 That is how I feel right now.  Like Waverly is slipping through my fingers.  I am afraid that we have reached another point of decline and regression.  That is the awfulness of this syndrome.  The child plateaus along and then all of a sudden there is a loss of skills.  Just when you begin to be accustomed to the behaviors, things change.

I am praying for a miracle tonight.

Way to Help!

Macy's is running a promotion that if you bring in your child's stamped letter to Santa, they will donate $1 to the Make-a-Wish foundation, up to 1 million dollars!!  We are about to benefit from this incredible organization.  Here is a simple way we can all help fund wishes for kids all over the world.

Go to www.macys.com and click on Believe with mailbox in the top left corner for details.

Home Visit

I met with Waverly's teacher for a Home Visit today.  It went quite well.  Waverly has adjusted to her new surroundings and routine.  She isn't throwing herself on the floor anymore out of frustration and she is anticipating a lot more in the classroom.  She still doesn't like yoga, but she does enjoy the songs they sing during the exercise and is even beginning to flap her arms like a butterfly during one song.  She is still a food thief, so they have to keep their eye on her the entire time food is out.  She takes is from the table and from other kids' plates.  The other kids in her class really like her.  They miss her when she is not there, they say hello to her and interact with her, they know she puts things in her mouth and say "no, Waverly" when she attempts.  One little boy likes her so much that he constantly hugs her when she is sitting down during circle time.

We did discuss our reasoning for not wanting to do the restraints.  We asked if we could try them at home and see Waverly's reaction to wearing them.  If it does allow her to...even for 5 minutes...play appropriately with sensory items (rice, play dough, corn, etc), that may be worth trying.  We will try it in the home and see for ourselves.

In other news, Oliver is such a great little brother.  He always brings Waverly her chewy tube when he finds it around the apartment.  And he is beginning to find other things he knows she likes - Sammy the Seal book, Baa-Baa, etc.  It is so sweet!

Restraints

I spent time this afternoon researching these arm restraints they want to use with Waverly.  Part of her condition means she chews on EVERYTHING and I truly mean EVERYTHING.  So whenever they want to do a craft or project in the classroom she puts the supplies in her mouth and that could be dangerous.  The school OT wants me to approve the use of arm restraints to keep her from bending her elbow, therefore unable to put anything in her mouth.  I just feel very uncomfortable restraining her like that.  Chewing isn't a behavioral issue, it is an actual need.  Both our private OT and pediatrician were not supportive of the restraints.  I asked other Sanfilippo moms who felt the same way.  The school says they tried them on Waverly and she didn't seem upset wearing them and was actually playing with the sensory items, instead of putting them in her mouth.  I think that I am going to arrange to observe and talk with our specialist about it.  So many decisions to make and I feel like I have no idea what I am doing!

I have distracted myself a bit by getting some Christmas shopping done.  It is VERY difficult to shop for Wavey.  She no longer plays with anything, so I ordered her some of her favorite shows on DVD.  I also got Oliver a Thomas train set.  He loves them at our doctor's office, so hopefully he will enjoy having his own set here at home.

Classmates

On Monday I had to drive Waverly to school, because I brought in cupcakes for both special needs preschools classes in honor of Waverly's birthday.  We were running a little late, so I had to bring her back to the classroom.  When we got there, an adorable little boy yelled "Hi Waverly" and seemed so excited to see her.  I was brought to tears.  I wrote her teacher just to say how sweet that was and she wrote me the sweetest letter taking about just how much Waverly was a part of the class.  The kids are beginning to understand that she puts things in her mouth and are saying "No, Waverly" when she tries.  She is also loved by another little boy who is always trying to hug her.  I felt so good knowing that her classmates enjoy her company and miss her when she is not there.

We also did have our Make-a-Wish meeting on Monday night.  Waverly wished for a trip to Disney World.  She is going to love it!!  They were explaining all that Make-a-Wish does to make the trip even more special.  It is going to be incredible!

Oliver can now say "ball".  He is doing such a great job with signing and he is trying so hard to mimic speech sounds.  He also keeps getting stronger and his PT is so impressed with his progress.  Waverly has been singing "Happy Birthday" non-stop.  She also is starting to say "5" when asked how old she is.  It is so amazing to see her trying to learn something new.

Photos

Here are a few photos that Kamarah took while she was visiting.  (She is talented and got some great shots.)  I thought you would enjoy them.

Oliver on the swings

Waverly at a local playground

Oliver holding his feet

Waverly watching Mickey Mouse Clubhouse

Summary

I had such a wonderful weekend with my friends, Michele and Kamarah.  It was so nice to be together again.  (The last time was Michele's wedding over 2 years ago.)  Plus this was the first time they met Oliver and saw all of us after the kids' diagnosis.  I have shared with them so much of my life, the ins & outs of taking care of the kids, my fears, my sadness, my failures...but having them here with me in the daily routine was so valuable.  They were able to see first hand all that goes into taking care of the kids.  The incredible patience Matt and I have to use when dealing with Waverly & Oliver.  The craziness of doctor appointments (they went with me to the ENT with both kids).  The anger of Sanfilippo's effect on my family.  The times when I just want to cry or scream or both.  We shed a lot of tears together during their visit.  They fell in love with Waverly and Oliver.  They also know that their next visit is going to be drastically different.  The changes that will take place in both kids is so upsetting.  We watched videos of Waverly from the past few years and they understand when Matt & I say we are losing her.

We also laughed A LOT.  They are friends that you can just jump right back in and pick up where you left off.  We stayed up way too late each night and simply enjoyed our time together.  I can't wait to see them again.

In other news, we did find out that Oliver is going to get tubes in his ears next month.  He has had a lot of ear infections, with more to come this winter.  Because of his hearing loss and MPS III, the ENT thought it best to get the tubes in.  Matt and I think this is the best decision, too.  Ear infections are NOT fun.

We also completed step #2 in getting a waiver to help us with medical costs and therapy for the kids.  We still have a few more months wait, but it is going to be worth the wait.

Tonight 2 volunteers from "Make-a-Wish" are coming over.  We are going to wish for a trip to Disney World for Waverly.  We still have to look at a calendar and figure out when we want to go.  I am thinking maybe next spring or fall....just not the hot summer.  She is going to love it.

Waverly's Past Birthdays

Waverly's 4th birthday party in London

Waverly turning 3 in Arlington

Waverly turned 2 in Bexley

Waverly's 1st birthday in Bexley

Waverly on the day she was born

Happy Birthday Waverly!!!

Today was Waverly's 5th birthday.  We cannot believe that our little girl has grown up so fast.  We had a Carvel ice cream cake (YUM!) and Wavey opened presents.  It was nice to celebrate with Kamarah and Michele.

In the midst of the celebration, there is heartache.  We spent some time last night watching videos of the past 5 years.  We wept together seeing all of the changes that have taken place.  There are fewer glimpses of Wavey, but we know she is still there.  

Laughter

My friends Kamarah and Michele are visiting for a few days.  It has been wonderful and I am already dreading taking them to the airport on Sunday to fly home.  I have forgotten just how much I love to laugh.  It has been cleansing for me.  What fun to stroll down memory lane with them.  We have been through so much together.

Throughout their visit we have been talking about "A Hundred for a Home" (www.ahundredforahome.com).  I am sure most of you who read the blog repeatedly are well aware of this incredible fundraising campaign they started for my family.  The amount of time and effort they have put into it is totally amazing.  I cannot believe that they are devoting so much energy into helping us move into a home that is safe and equipped to care for both Waverly and Oliver; and to assist us with offsetting medical co-pays and bills, equipment, and therapy services.  The stress of Sanfilippo in our lives is already unbearable, but knowing that some of the financial burden may be lifted is such a dream.  I am just in awe of their love for Matt, Waverly, Oliver and I.

I have enjoyed letting them into my day-to-day life with the kids.  I feel like they are getting a real sense of how Sanfilippo has changed Waverly and how it has effected our home life.  I feel sometimes isolated by the disease and it is refreshing to allow someone in.  I feel understood in a new way.

We are celebrating Matt today.  It is his birthday!  (Happy Birthday, love!!)  I remember when I met Matt, I just knew that he was going to be special.  I wanted to choose someone who would be a terrific father, to give that gift to my kids.  Waverly and Oliver are blessed to have the best Daddy in the world.  And I am honored to be on this journey with such a remarkable man.

Recap

Sorry for the quietness on the blog.  We were in Ohio visiting Matt's family.  After a very long drive and a special stop in Columbus to see some dear old friends, we made it home late last night.  It was a nice trip.  We were able to see Matt's parents, his brother & sister and their families and some old friends. 

Now we will settle back into our routine.  Taking Waverly out of her environment and schedule always causes some frustration.  She was incredibly hyper - more than we have seen her in a long time - the past 2 days.  I am hoping that being back in our apartment and attending school will help calm her down.  She was up at 4:45am though.  I think today is going to be a long day.

Tonight my best friends, Kamarah & Michele, are flying in for a visit.  I have been counting down the days until their arrival for months!  I am so excited to have them enter our little world and get to know the kids.  I will feel even more understood when they see how drastically our lives have changed.

So today is going to be filled with cleaning, shopping, baking and preparing for guests.  It is going to be a wonderful 5 days.  (Thanks to Lisandro and Ryan for working out your schedules so they can come visit!!)  It is a wonderful day.

100,000

I am very excited.  I have a little stat counter on my blog.  It keeps tallies of how many people visited per day, new visitors and repeats, and it even has a map so I can see where people are accessing my blog.  It's been just a fun little feature, but I am very excited today.  Today it will hit the 100,000 mark!!  That doesn't mean that 100,000 people have seen the blog, but it does mean that the website has been looked at that many times.  That is incredible!

When I look back to starting this about 18 months ago, it began as a way to keep my family and friends updated on the kids.  We moved to London, so I thought it would be a way to keep us all closer.

Then this past spring, when the doctor appointments got more serious and the diagnosis was given for both Waverly & Oliver, the blog took on a new role.  It became a place for me to cry, scream, vent, beg, plead, remember, wish, hope, dream, pray, talk, share, laugh....all rolled into one.

I remember March when the doctors told us that Waverly had MPS III.  I remember asking them if it was serious, if she was going to die from it.  Our wonderful young female doctor took Waverly's hand and started playing with her.  She had tears in her eyes as she showed Wavey a pen and paper.  I knew.  I wept and life would never be the same again for us.

I remember April, standing on Oxford Street in London, only 2 blocks from the embassy, when that same doctor called to tell me that Oliver's tests results were back.  All she said was "I'm sorry".  I knew.  I fell on the sidewalk, holding Waverly's hand and looking at Oliver sitting in the stroller.

I think back to May, when we visited Duke.  I remember the pain in having Waverly denied the cord blood transplant, but Oliver offered it.  I remember the agony - by far the most difficult decision I have ever had to make - of whether or not we would pursue the risky treatment.  It took Matt and I weeks to decide.  I spent every night in tears, stressed beyond imagination at the paths before us. And then when we came to our decision, we never looked back.  We have never regretted our decision and there was such unity in it for us.

It has been such a journey.  There were moments when I didn't think that I could continue and take the next step.  I know there is much in store for us and there will be many more times that I will lack the strength to move on.  But this blog is a reminder that we are loved, we have not been forgotten.  My children are making an impact on the world around them.  They have changed Matt and I in a powerful way.  It is my prayer that they will change your hearts, too.

Thank you for celebrating this small milestone with me.

Thank You

I wanted to say thank you to those of you who have been so supportive the past week.  It has been an incredibly difficult 2 weeks for me.  I have felt better the past few days.  I am still sad to my core, but emotionally I feel like the fog is lifting a little bit.  Thank you for allowing me to be honest in my grief.

Vote

I know everyone's attention is on the election today.  We cast our ballots absentee this year.  I wish I could have had the experience of standing in line and casting my vote.  What an exciting election!  Whatever the outcome, I hope and pray that families of children with special needs can see positive changes in health insurance coverage and exclusions. And that more money can go towards research for MPS and other diseases that are devastating families around the globe.

Yet Another Video

I need to take more video of the kids to document more recent times.  We were so bad in London.  We hardly ever got out the video camera, just the still.  We did take a little video just before we left London in August.  Here is a small taste of Waverly today.  I just wanted you to see some of the changes.  She is such a beautiful little girl, with so many thoughts and ideas inside her head & heart.  Get ready to fall in love...

Another Video

We are going through video of the kids and I found this little gem of a clip.  Oliver is just a few months old and Waverly is saying hi to him.  It is adorable.  She no longer says Oliver, so this is a wonderful little memory.  I am so glad it is captured on video.  Enjoy.

Monday, Monday

Waverly doesn't have school today or tomorrow for a teacher inservice.  This makes for longer days for all of us.  We all work better within the regular routine.

I spent some time this morning making doctor appointments.  We got in with an orthopedic doctor.  I am especially excited to see her.  Waverly turned in foot is causing a lot of concern for Matt and I.  I think she is going to need a brace so she doesn't damage the muscles and tendons.  I have also made arrangements to take the kids to see a doctor who specializes in the MPS diseases.  She has a team of therapists and developmental pediatricians who offer so much help and advice on handling children with Sanfilippo.  She is in NC and we had a great appointment with her in May, when we were finding out about the cord blood transplant option.

Oliver is continuing to impress us.  He is picking up more signs and using them throughout the day.  He also went and found a little toy pig last night, when I was showing him the sign for pig.  He totally understood me.  It is incredible!  He doesn't talk nearly as much as Wavey did at his age, but he is still communicating beautifully.

Baby Teeth

This morning Matt and I both noticed that Waverly's teeth looked different.  Her bottom teeth has less gaps.  Upon inspection of her mouth, I noticed that she has an "grown up tooth" coming in behind her bottom front teeth.  At first I panicked and envisioned taking her to the dentist and having them extract her baby teeth.  Then, after a call to my sister and mother of 4 kids, she calmed my nerves and said this happens and that the baby teeth will eventually be pushed out of the way.  Then I thought surely, Wavey is too young to begin losing teeth.  Again, she said that she is right about the age when the process starts.

Then, I cried.

I can't believe my little girl is growing up so quickly.  She is frozen in my mind at 3.  Age 3 was when we really began to notice the differences between Waverly and the other kids her age.  That was around the time she started having difficulty doing the puzzles that used to be so easy for her.  All of a sudden, she was putting everything she could get her hands on into her mouth.  Today, was a reminder that my little girl is growing up.  Even though she struggles to do things that used to come so naturally, she is still growing taller and older.  She is going to celebrate her 5th birthday in 2 weeks.

Happy All Saints Day!

It is simply gorgeous today.  We decided to take a walk and Oliver tried out the tricycle for the first time.  Before this photo was taken, he was having a ball.  He even tried peddling a few times.  We were shocked to see his little feet moving.  He was so cute.

Here is Waverly looking at one of the many fountains in our apartment complex.  She looks so pretty.

Oliver loved the fountain.  He kept clapping in excitement - praising the fountain for the water he could splash.

It's been a good day.  We picked out glasses for Waverly.  (Now if she will only wear them.)  We choose two styles to order and we will try them out next week and see which one works best.  We also spent some time outside enjoying the beautiful fall day.  While driving to therapy the other day, I passed a cute little pizzeria that claimed to have NY style pizza and they sold it by the slice.  We tried it out today for lunch and while not quite Salvatore's quality, it was still quite good.  It was super child friendly and I think it is going to be a regular place for us.

It has been nice to have a regular day finally.  We have been so busy out of town or moving, that this is really one of our first weekends where we can just enjoy it.  After nap time (hence a time to upload photos and blog), we hope to get outside more and enjoy the sun.