Meet the McNeil Family

Meet the McNeil Family

Sunday, September 30, 2012

Beautiful Autumn Day

This afternoon we drove out into western Virginia to one of our favorite family farms. Apple picking is a must do activity each year. We picnicked, picking apples and shopped in their market. The highlight for Oliver was playing on their playground and riding around in the wagon. Waverly simply loved being outside and seeing so many people. For Matt and I, the best part of the trip was the dozen freshly made apple cider donuts we bought. We have a 1/2 bushel of delicious red stayman and ida red apples - perfect for apple sauce and dumplings. The house is going to smell fantastic this week. And we were able to make another fun family memory.

Saturday, September 29, 2012

Running for Jill's House

Matt is once again running the Marine Corps 10k in October with Team Jill's House. His goal is to raise at least $750, although last year he was able to raise $3000 for this VERY special organization. As many of you know, Jill's House has been an incredible blessing to our family over the past 2 years. Waverly goes there for day camps during the summer and weekend stays throughout the year. Oliver will be able to stay there beginning in Januaray, after he turns 6. Please take a moment to read more about Jill's House HERE.

If you want to support Matt's run to raise money for this fantastic organization, please click on the link below to donate easily online. Thank you!!

Thursday, September 27, 2012

Memory Boxes

I have been saving almost everything the kids make at school, camp, Jill's House, where ever.  Their closets are filled with plastic bins, decorated with their names in puffy stickers. I am running out of closet space. So I had the brilliant idea that I would go through the bins and keep only those things most precious - with their handprints, photos or those items that are originals (not done by the teacher using hand over hand techniques). I opened up Waverly's closet this afternoon and gazed up at the stacks of bins, full of memories and treasures. I couldn't do it. I couldn't even pull down one bin and peek inside.

A task for another day perhaps.

I am fully at home in our little Sanfilippo world. I feel cozy here. Just me, Matt and my sweet babies. I used to long to return to the days prior to diagnosis. The bliss of ignorance. Now I simply want to hold onto each Sanfilippo filled day, because at least we are all together and safe. The future is beginning to weigh heavier on me each day. November is just around the corner. Waverly's 9th birthday. Oliver turns 6 the following month. I need time to slow down.

My Little 3rd Grader

Waverly started 3rd grade last Monday. She did half days for the first 3 days of school and has been full time since then. I spent some time in the classroom and meeting with the school nurse to make sure everyone was comfortable with her g-tube. After some practice sessions last week, everything has been going smoothly. Waverly has a 2.5 hour tube feed in the afternoon at school. I think she is thrilled to be back among her friends and teachers. She is a very social little girl who loves the attention she receives from everyone there.  I think if not for Watson, I would be a bit lonely. I thoroughly enjoyed having her home with me for the first few weeks of school. How is she already in 3rd grade?!


This adorable little guy has been with us for exactly 2 weeks (hence my lack of blogging - puppies are a lot of work!!). Watson is an awesome 11 week old golden retriever puppy. He and Matt bonded instantly. I am a definitely falling in love. Being home with him means more work for me during the day, however it certainly is fun having a little companionship while the kids are at school. And Matt has taken over the difficult task of middle of the night potty breaks. The kids are still trying to figure him out. Oliver has yet to really notice him, except for a many times he trips over him because Watson likes to follow Oliver. Waverly loves the puppy, but the puppy loves Wavey's chewy tube. Watson gets  excited around the kids, so we are still trying to work out their relationship.

Friday, September 14, 2012

Second Week

Oliver had his second week of full day kindergarten. He is doing so well!! His ID teacher spoke with his kindergarten class on Tuesday morning. The kids had a lot of questions about Oliver, so she went in to explain things to them. It was very successful and I think Oliver is going to have a much better time among his peers. In fact, this morning while dropping him off at school, a little boy came over to say hello to him and gave him five. I was beaming ear to ear and almost moved to tears. That little boy's parents are getting a thank you note from me.

Waverly was home with me again this week. I think we have settled into a schedule that works for all of us. We met with her surgeon on Wednesday. Everything looks fairly good. She has some granulation tissue near the g-tube. We started using some topical steroids and hopefully that will clear it up. The doctor was also concerned by how "tight" the tube is - it is pressing into her skin. Typically Mic-Key buttons are replaced every 3 months. We think this will be replaced closer to 1 month. Waverly is fussing a lot and I think it is the tube hurting her skin. We have to allow the stoma to heal though before we can replace it. Poor girl has been through so much.

Sunday, September 9, 2012

Waverly Update

I thought I would update everyone on Waverly. She is recovering beautifully. The most difficult aspect of the g-tube seems to trying to settle into the best schedule. Since the tube is brand new and she is still adjusting to the formula, she has to eat at a very slow rate. (This will slowly be increased.) We opted to try overnight feeds, since it drastically limits the amount of time she is tethered to the feeding pump throughout the day. We want her to be able to be up and moving as much as possible. After some adjustments, we have found an overnight schedule that seems to work well for all of us. During the day she only has to be hooked up to the pump once for a few hours. And we are able to supplement some food orally throughout the day.

Waverly seems quite happy and satisfied. I am actually surprised just how content she is, however I think she was often hungry before and just unable to safely eat enough calories. Her g-tube is healing nicely and thus far we haven't had any complications.

My mom came down for a few days last week. Wavey was thrilled to have Grandma around. I snapped this photo at our favorite frozen yogurt spot. You can see just how happy Wavey was to have her Grandma here.

Oliver is a Kindergardener!!

Oliver had his first day of Kindergarden on Tuesday. We were able to snap a few photos of him going into school. Of course, his big blue chewy tube was blocking his face in every picture. He and Waverly are in the same classroom. They are in an ID (intellectual disability) classroom with 3 other children. They also join their same age peers at certain times throughout the week. In the photos, he is holding hands with Chao-An. She is Waverly's 1:1 and a wonderful addition to their classroom. Since Waverly is home recovering from surgery, Chao-An has been able to get to know Oliver better and work with him adjusting to a new program.

Monday, September 3, 2012

Kindergarden & 3rd Grade

It suddenly hit me that tomorrow morning I will have a 3rd grader and a kindergardener. How did that happen?! It wasn't until tonight that I really began to process this fact. I couldn't help but wonder what if there was no Sanfilippo and they were typical kids preparing for their first day of school. Sweet Waverly would be thrilled to be back in the classroom with her friends. She would love to tell her teacher all about the books she had read and her summer adventures. Handsome Oliver would be excited about school, but definitely nervous. He would be a bit more timid and on a countdown for lunch and recess. He would find comfort in his big sister's guidance.

I am sad tonight. Sad that my kids school supplies are diaper and wipes, lysol spray and tissues. No crayons or composition books. No freshly sharpened pencils or folders so carefully selected. I am jealous of all of those families who experience life so differently than I do.

Unfair I know, but natural. I have come to realize that it is inevitable to wish things were different. And sometimes I have to allow myself to drift away in wonder of how things could have been. I have to mourn all of those hopes and dreams I had for my children.

As we tucked the kids into bed, a *new normal* is beginning to take hold. Waverly's room now has an IV pole in it, so we can hook up her feeding pump at night whilst she sleeps. Each time I pop in to check on her the yellow glow of the pump lights up her sweet face, arms crossed over her chest hugging her Baa-Baa tightly. She is so beautiful. She is so brave.

Tomorrow morning I will drop Oliver off for his first day of Kindergarden. (Waverly will be home with me for at least another week as she recovers from surgery.) I will definitely cry. Time is moving much too quickly.


Meet the newest member of our family. He is a very handsome 8 week old golden retriever puppy. His name is Watson.

Waverly's favorite part of her time at Jill's House is always when Titus the therapy dog (also a golden retriever) comes to visit. She is all smiles and giggles when he is around. She loves to pet him, rub her feet in his fur and watch him fetch and run through tunnels. Further proof that a dog was in our future

Once we moved into our house, we knew we were ready. We visited rescues and shelters, spoke with breeders and did a lot of research. There is a local dog school that was recommended to us for therapy training, we simply needed to find the *right* dog. Thankfully, a friend from high school saw my posts on facebook about getting a puppy. Her mom has several golden retrievers who are therapy dogs. Her mom contacted me and offered to help us find a dog. Her friend is a breeder and had 1 puppy left in her current litter. He tested high for temperament and she thinks he will be the perfect puppy for us.

He will be joining our family in about 10 days. He was born in Boston and will be making his way to us, with the help of some very kind people.

Watson is going to bring so much joy into our lives. And a bit of normalcy that we so desperately need right now.

Saturday, September 1, 2012

Brave Girl

A new favorite photo of Waverly & I. Matt snapped this just a few minutes before her surgery. I love her big, bright smile. She is such a good patient.