Meet the McNeil Family

Meet the McNeil Family

Thursday, July 28, 2011

American Girl

Our local mall just got an American Girl store. I would have loved that store when I was a little girl. I remember seeing the catalogs when Waverly was a baby and thinking that one very special day, I would take her in and let her pick out her very own doll. I would treat her to a lunch at the cafe with her doll in a highchair next to the table.

I hate walking by the store and I do all I can to avoid it. However, the mall is flooded with little girls carrying their dolls. I can't escape the bright red bags. That store embodies the loss of a dream for me. I suppose it is silly to think an over priced toy can cause such sadness, but it is a reminder that things just haven't turned out as I had hoped.

Waverly & I were at the mall together this afternoon. We had a few errands to run and fortunately we didn't have to venture near the AG store. Yet when we left, we drove right by it. There is a nice patio area for the cafe and there were a few moms and little girls sitting outside enjoying lunch. The dolls were in the highchairs with little place settings. I cried. I looked in the mirror and saw Waverly happily chewing on her Chewease in her car seat, oblivious to all that she is missing.

Tuesday, July 26, 2011

One Car Family

We are officially a one car family again. Our Ford Explorer was in need of some very expensive repairs, so we opted to donate it. We gave it to Wheels for Wishes. They are associated with Make-a-Wish. It is a wonderful way to give back to an organization that granted both Waverly & Oliver a wish. I want to take the opportunity to thank my Aunt Donna and Uncle Ed for giving us the Explorer. When we were back in the US and Waverly was diagnosed, we knew we were going to make the move back to the States. They had a spare car and gave it to us. It was a gesture that made our transition home so much easier. And thanks to Uncle Guy and Aunt Tari for getting the car from Idaho to PA.

Sunday, July 24, 2011

Wondering

I miss Waverly's voice. I hate that I never really had the opportunity to hear Oliver's. I often wonder what they would say throughout the day. Would they ask for more grapes or tell me they really don't like goldfish? Would Waverly still call me Mommy or would she have transitioned to Mom? Would Oliver ask to go swimming each and every day? Would they tell me that something hurts or they are scared?
 I carry on constant conversations with them. I always ask them questions about their day, answering for them to keep the chat moving along. I tell them that I love them constantly. Over and over again - whilst cuddling on my lap or when putting them to bed. I always want them to know the sounds of mommy telling them they are loved.

This has been a difficult month. I have started getting migraines, I think in part caused by stress. (MRI was fine, so no worries.) Wavey's swallowing has grown a bit worse. We have to really assist her in order to get her to drink from a straw. It takes a lot more time and effort to be sure she is hydrated. I called her GI doctor in order to have another swallow study done, to assess the changes since November. Oliver is doing well. His hands are now constantly in his mouth. His pacifier no longer sustains him as well as it used to. I remember the insatiable urge Waverly had to put everything she could find into her mouth. I can see that same desire developing in him.

Tonight, I simply wish things were different.

House Update....Again

Still no news on the house. It has been over 9 weeks since our offer was accepted by the sellers. The banks have yet to make a decision and we are forced to wait. We knew going into this process that this would be a long wait, but I didn't realize how impatient I would become after 2+ months. I had a goal in my mind to close around Labor Day, allowing us time to move from our apartment to the house before our apartment lease is up. I am no longer hopeful that is going to happen. We are continuing to look at other houses that meet our needs, as they come on the market. Thus far, we haven't found anything to rival our choice. It truly is a great fit for our family. Now to figure out how to encourage the banks to move a bit quicker....

Wednesday, July 20, 2011

Yellow Light

I am so thankful for Extended School Year. It has been so nice to have a daily routine again and the kids both enjoy being in the classroom. Oliver is having a great time. He has the teacher he will have in the fall and she is fantastic. He has been happily getting on the bus each morning - no tears. Waverly is also having a wonderful experience. The past 2 years, I haven't been thrilled with her experience. This year is so different. Her 1:1, Erin, is with her for the summer. She is AMAZING and we are so lucky to have her. And Wavey's teacher is equally lovely. I was able to visit her classroom last week and she is with a wonderful group of teachers & students.

Erin told me the cutest story about Waverly today and I just had to share. They use yellow and red lights as warning for the kids' behavior. One of Wavey's little friends got a yellow light for something. A few moments later, as he was sitting by Wavey, she tapped his head 3 times. He went running over and grabbed the yellow light picture to give Waverly a warning. So cute!!!

Sunday, July 17, 2011

Handsome Boy

Oliver enjoying an ice cream cone, thanks to Grandma. 

A very happy Oliver on the swings. I love that smile.

Time


I took this photo of Waverly on Saturday at my Nana's. Wavey has been *in love* with her Wiggles guitar lately. She can still push the buttons and hear some of her favorite tunes. She got this toy when she was 2 for her birthday from a friend. She loved it and I can picture her bopping around in our living room in Bexley to the music. After she outgrew it, I held onto for Oliver. And now here we are 5.5 years later and it has become a favorite once again. 

Time seems to stand still with Sanfilippo. Development plateaus and then we begin to go backwards. The kids grow older, yet their development declines. The differences are growing more startling between my life and my friends. I feel perpetually stuck in baby phase, while they are attending baseball games and dance recitals.

Thursday, July 14, 2011

*V*O*T*E*

It is yet another opportunity for you to help us fund research for Sanfilippo.  The parent group, Team Sanfilippo, is competing for a $250,000 grant from Vivint.  We are currently holding onto the second place spot, but we still have weeks of voting ahead of us.  It is easy to vote, as long as you have a facebook account.  Simply *like* Vivint.  Then click this link: http://www.vivint.com/givesbackproject/charity/1471  or search for Team Sanfilippo in the Vivint Gives Back Project.  Cast your vote.  It is that easy.  Then each day, vote again - it takes mere seconds.  Share the link on your wall and ask your friends to join you.

People are always asking how they can help.  This is an easy and free way to help our family and all of the other families who have children with Sanfilippo.  There is currently no treatment available to our kids, but there is some exciting research in the field of gene therapy.

You can vote once per day thru 8/27!!

More Changes

I recently wrote about the changes we are seeing in Waverly's mobility and movement around the apartment. This week, we have seen a lot of changes in her ability to swallow. During lunch today she choked twice. Choking so scary that I had to pound her back to clear her airway. We have adjusted her diet to soft foods and dissolvable solids, but I gave her a few blueberries with lunch. She loves blueberries, however she no longer chews them and just tried to swallow them whole. Waverly has always found such joy in food. She loves to eat. I hate having to adjust her diet once again and remove some favorite foods. Her blueberry intake will just have to be mashed into smoothies.

Sunday, July 10, 2011

House???

My parents came down for a visit this weekend. We had an opportunity to get back inside the house, since the renters have moved out. My step-Dad is extremely handy, so it was nice to get his perspective on the place. Everything looks really good - no major concerns to speak of. Just some minor changes here and there.  I took a bunch of photos of measurements. We still have a lot of hoops to jump through before we can call this house our home, but we are on our way.

Front Door 

Living Room 

Kitchen 

Bedroom Example 

Finished Basement/Family Room 

Downstairs Bath 

Kitchen to Living Room view 

Back Yard 

Back of the house - big yard!!

Friday, July 8, 2011

Slowing Down

The past few weeks we have noticed a significant change in Waverly. She use to wander, walking from her bedroom to the living room into our bedroom if we were in there. She would go to the gate in front of the kitchen or run to the door when Matt would come in from work. All of a sudden I realized she is much more stationary. She prefers to stay within the living room, moving from floor to couch and back again. She no longer wanders into her bedroom to page through her favorite books. I don't find her up on her bed snuggling Baa-Baa. Gone are the days of her "stalking" me whilst I am in the kitchen, hoping for a treat.

You would think I would have noticed the change. But sometimes in the day to day life with Sanfilippo, I neglect to notice the obvious. I have been preoccupied with Oliver; watching him ever so closely for signs of regression. I missed what is happening to my little girl.

The one thing I have learned in my three plus years with Sanfilippo, is that sometimes these changes are temporary. In a few weeks time I may find her plopped in front of her bookshelf once again. My fear is that this is a new stage, a new normal with which we need to adjust. I remember reading about children slowing down as the disease progresses. I thought that sounded wonderful at the time - dealing with a 4.5 year old girl who could no longer sit still and thought running away was the silliest game. The mania stage was so difficult. I miss it now. Wavey still loves to run away when we let go of her hand, but she typically only makes it a few steps before she falls or runs out of energy. I miss that devious little laugh, as she pulled away so we would chase her. 

I suppose this slower phase means more snuggles, more time spent reading our favorite books and cuddles during movies. I will need my energy, because I have a 4.5 year old little boy who is going to begin the manic stage soon. Best rest up.

Wednesday, July 6, 2011

House Update

A negotiator has finally been assigned!! In fact, our file is with the second phase negotiator. The banks are waiting for the BPO (Broker Price Opinion) and it should be in any day now. There are still a lot of things that have to fall into place, but we are moving forward. It is a great little house and I hope it will one day be ours.

Tuesday, July 5, 2011

Back to School...Already

This morning I packed up Oliver's lunchbox and backpack for his first day of summer school. I am so thankful we live in a county that offers extended school year. For the next 6 weeks he will spend his mornings in one of our local elementary schools. He will work on a few select IEP goals and socialize with some other preschoolers. In a wonderful surprise, his summer school teacher is actually his teacher for the fall. She knows Oliver already, which is a huge relief. He has difficulties with transitions and new environments, so having a familiar face is a huge blessing.

Oli was a bit surprised when I took him out to the bus this morning. He is used to riding with Waverly. However, he got right on with minimal tears. He is such a good boy. The report from his teacher was positive. He had a great day.

Wavey starts her 4 week program next week. I love getting back into a routine after a few weeks off.