Meet the McNeil Family

Meet the McNeil Family

Friday, September 30, 2011

**House Update**

We are getting closer!! The sellers bank should make a decision about the short sale soon. The seller still has to agree to the terms set forth by their banks, but if that happens we are on our way to closing on our house. There are still a lot of things that need to fall into place, but at least we are beginning to see some movement. We are desperate for a decision. We have been living "in limbo" for far too long. We are ready to settle into a home. I am feeling incredibly stressed at the prospect of a move, but the reward of settling into a home with a big backyard for the kids to enjoy makes it all worthwhile. Thanks for your prayers and positive thoughts!!

Tuesday, September 27, 2011

Ma-Ma


I snapped this photo of Waverly yesterday as we were waiting for the bus to arrive. She has been so happy and smiley. She is also saying "ma-ma-ma" constantly. We may not get another "mommy", but I am thrilled with a "ma-ma".

Saturday, September 24, 2011

Memory Made

I spent some time volunteering in Waverly's classroom yesterday, which did my spirit good. They are learning about autumn, so we made paper mache apples. They will paint them on Monday. I had such a great time helping the kids apply strips of newsprint to balloons. Most of them were not too excited about getting their hands messy, including Waverly. I think she thought it tasted good though, because she had a lot of it around her mouth (thankfully it is simply flour, water and salt). After we made the apples, I also read a story to the class. It was so much fun!!

It was a great reminder to enjoy the moment. Memory made.

Thursday, September 22, 2011

Drowning

I have been quiet the past few weeks. We are still finding our rhythm with the school year. I am actually enjoying the change in having Oliver attend afternoon preschool. We have been able to spend more quality time together (the past 2 years he napped in the afternoon, after morning school). We have visited playgrounds, ran errands and just hung around at home. I like having those special adventures with him.

On Tuesday we met with our medical equipment rep. Waverly has already outgrown her pretty pink wheelchair and we need something else to better fit her needs. She is getting heavy and my back simply cannot handle lifting her up into her chair. I wanted something that she can back into herself. I also wanted a lighter chair. (Her current chair is over 40 lbs!) Her trunk is weakening, so we need some additional lateral support to keep her centered. We also need a sturdier vest to keep her back in her seat, instead of hunching forward. I think we found a good option that meets all of our needs. The rep also brought a sample wheelchair that we just ordered for Oliver. It is a very simple pediatric wheelchair (more like a large stroller). Oliver climbed right up and waited for a ride. As I stood there looking at both kids in their respective wheelchairs it took everything in me to not burst into tears. I am just now sure how I am going to manage both of them as the disease progresses.

Also on Tuesday, Waverly's teacher sent home some questionnaires. They wanted to know Wavey's favorites for a class project. Two questions gave me pause: 1) Waverly's best friend is_______ and 2) When I grow up I want to be _______. My poor sweet girl doesn't have a best friend. There are no sleep overs, no birthday party invitations, no secret notes, no phone calls for her. I ended up putting the name "Jessie" as her best friend - she is a little girl who also has Sanfilippo and I like to think of the girls as kindred spirits. I had no idea how to answer the second question. ***Because I know Wavey's teachers read this, I was not upset by the questions. It was just difficult for me.***

I have written about the undercurrent of sadness. It feels like the current is growing stronger as the kids get older. Sadness seems to wash over me more often. And I have a more difficult time catching my breath. I think the new school year, impending birthdays and the developmental assessment from MN have all left me reeling. I can quite get my footing and the waves of sorrow are crashing on me.

I read a recent post from another mother of 2 children, both with Sanfilippo. Her eldest child passed away earlier this year. She remarked that she was going through some items and came upon a toy that her daughter used to love to play with. She looked back and wished she would have taken the time to play with her daughter more with that toy. I keep replaying that sentiment in my mind. Slow down. Take the time to enjoy Waverly & Oliver in the moment. I have already seen those moments pass. Waverly no longer wants to have tea parties or feed her baby doll. I wish I would have taken advantage of that time and made more memories with her. I see Oliver struggle with puzzle he so easily completed a few months ago. He no longer wants to hold a crayon and put it to paper. Why didn't I spend more time doing those activities with him. Why didn't I build more trains or towers with the Duplos?

I am struggling.

Monday, September 19, 2011

All Rides, All Weekend

As part of Oliver's Make-a-Wish trip, he was given a passport to one free visit at over a hundred amusement parks. We decided to take advantage of the pass on this beautiful weekend and went up to my parents in PA to visit 2 parks. On Saturday we visited Dorney Park. Waverly stayed home for a Grandma day, while Matt & I took Oliver to Planet Snoopy. We had so much fun. It always takes Oliver a few rides to realize that he can keep riding all day - lots of throwing himself to the ground after the first few rides until he learns the routine. Then he begins running from ride to ride in excitement. We had a great day just with Oliver. Yesterday, we took both kids to Dutch Wonderland. It is such a lovely park - perfect for younger kids. Both kids had a blast. We weren't sure if Waverly would still enjoy the rides, but she was all giggles for most of them. We typically only ride the rides that allow us to ride with them, but we couldn't resist putting them on the Hopper. Wavey started trying to grab the little girl next to her, but then focused on Oliver. Once the ride started she held on tight. I love this photo of both of them on the ride.


Friday, September 16, 2011

Back-to-School Night

Last night I attended Back-to-School night at the kids' school. I always enjoy visiting their classrooms and getting to know their teachers. 

I spent the majority of my time in Waverly's room. As I mentioned in previous posts, both of the teachers from last year and Wavey's 1:1 left. Thankfully the aides have remained the same, but it is a lot of change. Both of the new teachers are lovely - really sweet spirits. The dynamics of the classroom have changed a lot. Four of the older kids have moved on and now four kindergardeners are in the group. (Waverly had been the youngest kid in the classroom for the two previous years.) It has been a bit of a bumpy start, but I know there is a huge learning curve to entering a new classroom. I think it is going to be a good year for Wavey.

I also spent some time in Oliver's classroom. I adore the preschool team. He is in the same classroom as last year, with the same aide. His teacher is wonderful. He has had a very difficult time transitioning to school each afternoon. He is still extremely attached to me and cries each time I drop him off at school. It is heartbreaking. However, his teachers assure me that by the time he reaches the classroom he is okay and jumps right into the routine. (I think it helps that he eats lunch when he arrives at school.)

I am incredibly thankful for great teachers, aides, principals and specialists!!

Tuesday, September 13, 2011

Giggles & Tears

I have been having a very difficult few days. I have finally had time to process all that we learned while in MN and it has me down. 

Waverly is doing well, but her walking has become very unsteady over the past week. She tends to stay in the living room now, instead of wandering about the apartment. She is crawling over to furniture in order to get additional support to move into standing. And she simply isn't able to walk as steadily as she used to. Thankfully, she doesn't seem to be in pain and we haven't had the crying that we had all spring. But she is definitely growing weaker. We actually met with her PT and the wheelchair rep today to discuss a new chair for her. Unfortunately, she has outgrown her pink chair and we need something that will offer better lateral support.

My sweet little Oliver is changing. I hate seeing it. He is struggling at the dinner table. I have noticed he is making more of a mess when he eats. He is ignoring his spoon and simply using his fingers (doesn't work too well with yogurt or applesauce). He seems more manic - unable to concentrate. He is also having more trouble sleeping and waking up super early each morning. I see so much of Waverly in him when she was his age. Just after diagnosis, in her last year of preschool. I think it was our most difficult year.

There is a constant under current of sadness. As the kids get older and the disease continues to progress, I thought it would get easier. I thought I would eventually settle into our reality. I have, however there are moments when it all seems too much. I am in the midst of one of the those moments. I hate seeing the effects of Sanfilippo in their lives. I hate that I am slowly watching all they have been capable of, fade away. I hate knowing all of the changes Oliver will go through the next few years. And I fear what the next few years hold for Waverly.

After a rough morning, I dropped Wavey off at school. Her PE teacher asked how I was doing. And I could see in his eyes that he could see the weight of Sanfilippo on me. I sighed and said okay, holding in the tears that wanted to pour out. He told me how wonderful it was to have Waverly in his class. He talked about her infectious laugh and how happy she makes people.

I love that in the midst of all of the changes her little body is going through, she can easily bring a smile to anyone who meets her. Waverly & Oliver are both such sweet little souls and I am so blessed to have them in my life. In that, I will rest.

Saturday, September 10, 2011

The Lift

Waverly had a very difficult time with the bus this week. She has had a lot of trouble with the stairs and walking down the bus aisle. I think part of it is that it takes her awhile to learn a new routine, so she gets a bit confused. However, her feet just don't seem to be working. She is crossing them as she stands and is then unable to uncross them and move forward. She is also fatiguing quite easily. On Wednesday morning she fell while trying to walk to her seat. The aide on the bus is very nice, but is simply not strong enough to handle Waverly's size.

That afternoon after another rough descent of the bus stairs, I realized we had to start using her wheelchair and the bus lift. I emailed Wavey's teacher and called transportation. Thankfully her bus was already equipped with a lift, so the transition was easy. Thursday morning, we loaded her up and in chair and off she went.


This was not an easy decision, but I knew we had to make the change to keep her safe. She loves being in her chair and this way I don't worry about another fall on the bus. Plus, I spoke with her teacher about not using the chair while she is at school. I don't want her to all of a sudden be seen as immobile. She can continue to walk and move about the classroom as before. The wheelchair is simply for transportation to/from school.

I am not sure if the changes to her mobility are a blip or an actual long term change. It wasn't easy to transition to the wheelchair and lift, but I knew this day was coming. Waverly is still a very happy little girl, with lots of love and giggles for everyone she meets.

Oliver's Last Year of Preschool



Off he goes to his final year of preschool. We went with a dinosaur theme backpack and lunch box this year. He loves wearing his backpack and always helps us put it on him. Such a big boy!!

Thursday, September 8, 2011

House News

I think the seller's mortgage bank switch has been great for us. We are *finally* seeing movement in the short sale process. We had to supply them with some information via a form on Tuesday and today we received word that an appraiser was coming to the house on Monday for a BPO. Nothing can happen until that BPO is complete, so we are thrilled to know it is scheduled. There are still a lot of things that have to fall into place in order for us to get the house, but at least we are moving forward.

I did call the town hall today to request information on the permit needed to put a ramp on the house. It looks like that is going to be an easy process for us, with only a few days needed for approval once we own the home.

First Day of School

Unfortunately due to the pouring rain we have had over the past few days, I haven't been able to take the obligatory first day to school photos. 

Both kids are doing great adjusting to their new school year. They are attending the same school. Waverly's classroom went through a lot of changes this year - new teachers, 1:1, PT. Thankfully, the IAs have remained the same and the new teachers both seem wonderful. I hope to pop into her classroom next week at some point to talk with her new 1:1.

Oliver is doing great. He is in the same classroom as last year, with his summer school teacher. She is lovely and he seems to respond well to her. He switched to afternoon preschool, which was a little difficult for him the first day.
(Sorry I couldn't flip the photo around.) Oliver fell asleep on his first day of school. He was up at 4:00 am, so by 2:00 he was ready for a nap. I love his little bum up in the air. I drop him off each afternoon and then he rides home on the bus with Waverly at the end of the day.

All in all a successful first day of school for my second grader and preschooler.

NY State Fair


We spent Labor Day weekend in NY with my sister and her family. The highlight of the weekend is always spending a day at the NY State Fair - great food and great people watching. Unfortunately, it was abnormally hot and humid on Saturday. Waverly & I both detest the sticky weather, so we cut our fair visit a bit short this year. I did not leave without a bag of Maple Cotton (cotton candy made from maple sugar - it is yummy and tastes like a burnt marshmallow). I forgot my camera, but my sister took this photo of Oliver and his cousin walking around the picnic area. J's job was to "herd" Oliver away from the tables to the open areas. I love that they are holding hands.

Tuesday, September 6, 2011

The Questionnaires


Here is the folder containing all of the developmental questionnaires I had to fill out. Waverly's are on the left and Oliver's are on the right.

Natural History Study - Take 3

We have returned home after a long week of travel. We spent last Monday - Thursday in Minneapolis for our third (and potentially final) visit in the MPS IIIA Natural History Study. Once again the kids did great on the flight to MN. Kudos to Delta for holding the bulkhead seats for travelers with special needs. We were able to sit comfortably, knowing Oliver's happy feet couldn't reach the seat in front of us. We spent a few hours with some very dear friends and their children. Seeing them is one of the perks of participating in the study.

Tuesday is the day I dread the most in these visits. The day is spent doing developmental assessments - they are sooooo long. And I spend the evening filling out all of the developmental questionnaires. This visit I had 8 and they are books. We started the morning meeting with the primary doctor who is running the study for Shire Pharmaceuticals. He is so kind and we always enjoy seeing him. He gives the kids a pre-op physical and spends time talking with us about any concerns we have. We were actually shown some preliminary data that I found very interesting. In Sanfilippo Type A, there are many different genetics mutations that will diagnosis a child with Sanfilippo. In speaking with other families, it is fascinating to hear about diagnosis age, capabilities, what the kids are still doing at what age. There is a lot of diversity among the kids. I have even spoken with a mom whose daughter is in her 40s and has Sanfilippo Type A. By looking at over 25 children and comparing that to their development ages, they are able to differentiate which mutations cause a more severe case or those that are slower attenuating. I think this information will be incredibly helpful to parents as the prepare - school, therapy options, future plans, etc. 

We were also able to see a graph of the kids developmental age corresponding with their actual age. Even though names were removed and only participant numbers were used, we spotted Waverly & Oliver right away (we know their numbers). There was Waverly, at the very bottom of the graph for developmental age. And she was not the oldest child by far. Heart broken. She has remained steady throughout the study - no major drop off in her developmental age. However, they have her graphed at 8 months old developmentally. 8 months!! I wasn't surprised by her number, but I was so sad to see her at the bottom of the graph. She is the lowest functioning child in the study.

Later in the day, after the assessments were complete, we met with the lead doctor on the neurological side of things. She presented me with the most recent ages on the kids. Waverly's was no surprise - she is steady. Oliver's was shocking. 6 months ago he had a developmental age of 27 months and this visit he was at 18 months. The doctor was beyond surprised to see such a dramatic drop in only 6 months. This does not follow the pattern they see in the other children. Was it just a bad day for him? Was he tired or bored with the tests? Did I think his performance was accurate? I am just not 100% sure. He was most definitely not into the testing on this visit. His attention span is less than what it used to be. He just wanted to get out of the room and run around. He's a bit more hyperactive than before. They compared their assessment results with my questionnaire answers and there wasn't much of a discrepancy. We believe the developmental age is accurate.

Wednesday we were at the hospital for most of the day. The kids started at 5:30 in the morning. They had EKGs, MRIs, ABRs, Lumbar Punctures, and blood tests. They both did great!! They woke up from anesthesia happy and ready to eat popsicles. We spent that night in the hotel, since the kids tend to be wobbly for the entire day post op.

Thursday was another successful flight home.

I am still processing everything we learned from our visit. I am sure I will be writing more about the emotional side of this visit soon. I simply haven't had time to think about it yet.

Sunday, September 4, 2011

A Week Off

We had a very busy week in Minneapolis to participate in our third visit of the Natural History Study for Sanfilippo. We then spent the weekend in New York with my sister and her family. I will update the blog with details later this week.