Meet the McNeil Family

Meet the McNeil Family

Friday, August 31, 2012

Open House

Yesterday was the kids' Open House at school. They will be attending the same school they have been at for the past few years. Waverly has the same teacher as last year and in BIG news, she still has the same 1:1. Chao-An has been wonderful and Waverly was all giggly when she saw her. Given the g-tube this year, I am so thankful to have some continuity going into the next year. Oliver is starting kindergarten this year!! He is actually going to be in Waverly's classroom, along with 3 other students. He is going to miss preschool, especially Miss Nina. However, I know he will be free to visit her often. We were also able to meet the third grade and kindergarten teachers who will also be working with the kids. Both seemed enthusiastic about having Wavey and Oli joining their classes.

I can't believe school starts next week!!

Becoming a G-Tube Pro

It has been a very long week. Thankfully, Waverly is doing great. Her first night in the hospital was rough. She was in a lot of pain, but the nurse was wonderful and finally helped us get her to sleep. Tuesday we were able to slowly start formula through her tube. She tolerated it well and by Tuesday afternoon only needed Tylenol to alleviate the pain. Wednesday was a much better day. I was given multiple lessons on how to take care of the g-tube and by the evening they discharged her.

She was so incredibly happy to be home. She and I both slept so well (hospital bench-beds are not comfy!!). Thursday was my first day in charge of the tube. I am finally comfortable with it, but it was difficult getting all of the calories in her. Given the dose we can feed her, it would take us 13 hours of continuous feeding to get in her daily calories. This simply isn't possible.

Today was a better day with a better system. We met with the GI downtown and she was extremely helpful. She bumped her calories allotment down and gave us some changes to our plan to help us reach our target caloric intake. She reminded me that it is going to take some tweaking to find a schedule that works for all of us.

Throughout it all, Waverly has been a STAR. My sweet little girl is braver than anyone else I know. In the midst of all of this change, she constantly has a smile on her face. I can't even begin to imagine how the g-tube must feel inside of her and the change of being nourished in such a different way. She has been a trooper.

I haven't been able to process the reality of this new change yet. I have been so focused on taking care of her. For now, I am just grateful for medical science and our amazing team of doctors helping us put together the best plan for the kids.

Monday, August 27, 2012


Waverly's surgery was a success this afternoon. She was our super brave girl as always. The surgeon placed a Mic-Key button in her abdomen. It is very small and much less scary than I was anticipating. Wavey was very grumpy when she first woke up, but after a few hours she is much more content cage is happily relaxing in her hospital bed watching "Dumbo". She will be at Childrens through at least Wednesday night. They will slowly introduce formula through the tube tomorrow. Thanks for all of the prayers, positive energy, thoughts and vibes sent our way. We couldn't get through this without your love and support!!

Sunday, August 26, 2012

Surgery Tomorrow

Tomorrow is the *big* day.

Waverly is scheduled for surgery at 2:00 PM on Monday. 

We met with the anesthesiologist on Thursday for a consult. The nurse actually remembered Waverly from a few years ago when she had her tonsils & adenoids removed. I feel confident that they understand Waverly's needs and she will be in very capable hands tomorrow. I also spoke with our GI doc to go over the procedure and what happens afterwards. My friend, Carrie, has a lot of experience with g-tubes. She walked me through the surgery and answered all of my crazy questions. I feel comfortable with the medical aspects finally.

The emotional impact of this surgery...not so much.

Sunday, August 19, 2012

Surgery Scheduled

Waverly's surgery has been scheduled for Monday August 27th. I am so grateful they were able to get her in so quickly. She is ready. We are ready.

Wednesday, August 15, 2012

Doctor Visits Recap

It has been a busy week for my little girl. 

Yesterday she had her long awaited bilateral hip and brain MRI. We have been trying to get this test done for 4 months - that is how long it can take orthopedics and neurology to coordinate the test, so Waverly only had to be sedated one time. We should get the results sometime tomorrow. The brain MRI will most likely show continued loss of white matter and nothing new. The report I am most interested in receiving is for the hip. Waverly's right hip has been causing her a lot of pain the past 6 months. An x-ray showed some deterioration at the end of her femur. We are hoping the MRI will give us more detail and some sort of plan. We want to keep Waverly walking and mobile for as long as possible for her overall health.

Today we ventured down to CNMC for an Upper GI. She has had swallow studies, but never an UGI. I wasn't sure how she would do. She is compliant and never acts out, but she doesn't understand that we need her to be still or position a certain way. It took 3 of us, but she succeeded. She actually did a great job and enjoyed her orange cream barium shake. We should get the results in a few days. We had to get this test done before we are able to schedule Waverly's g-tube surgery. The pediatric surgeon wanted to get a good look inside of Waverly, specifically the stomach, to work out placement of the tube.

This afternoon our amazing SLP who specializes in feeding/swallowing popped over to take a look at Waverly. We typically see her every few months, as a consult to help us adapt to Waverly's ever changing swallowing needs. She has been working with us for about 2 years and is absolutely wonderful. I wanted to get her opinion on Wavey, before we move forward with surgery. We thought it was time, but I needed her confirmation. Upon the first attempt at a spoonful of pureed sweet potato, she noticed a marked change. Waverly was taking 10-15 seconds to swallow and rarely was it complete, meaning she was only partially able to swallow her food. The rest coated her tongue or was sitting on the back of her throat. Her tone has decreased and she is at a high risk for aspirating and developing pneumonia. She was working so hard to swallow such a small amount of puree.

We now know we are making the right decision moving forward with the feeding tube. Our SLP is contacting both our GI doctor and the surgeon to explain the urgency. We are hopeful we can get the surgery scheduled within the next few weeks. Until then we have to find some creative ways to get a lot of calories into her in a safe manner. Thank God for my Vitamix!!

Waverly has been her happy giggly self throughout the past few days. So often I dwell on how *I* feel. Today I was reminded how she must feel. I mean can you imagine losing your ability to swallow. And she can't understand why this is happening. She just rolls the food around, concentrating so hard to get her body to do something we never even have to think about.

This has been a difficult few days for Matt and I. Watching our little girl struggle to eat is so painful. We are grateful for the feeding tube option, so she can safely get the nourishment she so desperately needs. However, this is yet another step in her decline because of Sanfilippo.

Thursday, August 9, 2012

Surgery Consult

We met with the pediatric surgeon at CNMC this morning. She was very nice and is ready to move forward with the surgery, as soon as we have an anesthesia consultation. Timing wise, the surgery couldn't happen soon enough. I had such a difficult time feeding Waverly dinner tonight. She was struggling so much. She held the puree in her mouth for minutes at a time and fatigued quickly. In the past week, her weight went down by over 3 pounds. I know weight can fluctuate, but this seems like a lot. I am truly worried about her.

Tuesday, August 7, 2012

Mic-Key Button

On Friday, Matt and I took Waverly to see a new GI doctor. We haven't been thrilled with the GI doctors thus far, so we took our chances with a new woman at CNMC. She was wonderful!!! She came into the exam room well versed in Waverly and ready to listen. After some discussion, we have decided to move forward with a feeding tube for Waverly. She is on a strictly pureed diet and she can continue to eat by mouth, even with the mickey button (feeding tube). We knew from talking with other specialists and families that moving forward with the tube surgery while she is healthy is so important. I have also been concerned going into cold and flu season. Because we want to avoid the PEG and move right to the button, we are going to meet with a pediatric surgeon later this week to work out details. I am not sure when surgery will be scheduled, but I would anticipate sometime within the next few months.

This has not been an easy decision for us. As parents, we want to meet the most basic of needs for our kids - nourishing them. And unlike other families where the feeding tube is a temporary device to get them through a difficult period, we know that for Waverly it is yet another reminder of her body deteriorating from Sanfilippo.

Friday, August 3, 2012

Road Trip: Boston

We took a mini-vacation to Boston last weekend. The National MPS Society held its annual conference there. They asked Matt to speak during the final night about his book ( and his story as a father dealing with an MPS diagnosis. The kids and I opted to site see with friends, while Matt attended the conference. Our dear friends live in Boston and offered to show us around the city. They even brought along a friend's daughter who helped me with the kids. We had a wonderful time exploring the city. And I ate some of the best food!! Massachusetts surprised us by being very hospitable and accommodating.

 Matt & Waverly at dinner
Our friend, Matt, holding Oliver in Boston Public Gardens 

Oliver and Dylan at Boston Commons

Jessie, Dylan, Waverly, Sasha & Oliver (all have Sanfilippo, except for Dylan)

The trip was fantastic, but simply not long enough. We will most definitely take another New England trip in the future. Lots of thanks to Cari, Matt, Joanne and Mike for entertaining us for the weekend.