Meet the McNeil Family

Meet the McNeil Family

Thursday, July 30, 2009


Waverly had her sedated MRI this morning and she did beautifully. She drifted off to sleep quite easily and the anesthesia wore off quickly. She was extremely restless when she woke up, but otherwise doing fine. She and Matt were both back home by noon. The medicine always causes her to be a bit unsteady on her feet, so we are taking it easy this afternoon by watching some movies. Now we will wait for the results. They should give us an idea of how much her brain has changed within the past year. They are mostly looking for any signs of pressure, atrophy and enlargement of ventricles. Receiving these results is never easy. It is simply a reminder that the disease is progressing and damaging her brain in the process.

Oliver had another successful day of school. As I walked him in this morning, one of the other preschool teacher stopped me to say that Oliver said what sounded like "hello" to her yesterday. And his teacher said that this week has been incredible for him. He is so much more engaging, with better eye contact and participation. She also told me that everyone in the summer program knows Oliver's story and they are celebrating each one of his successes. I am so thankful that the school district listened to our appeal and allowed him to attend the summer program. It has been so beneficial. Tomorrow is his last day and they are having an ice cream sundae party. He is going to LOVE it!!

Wednesday, July 29, 2009

Pancake Breakfast

I am still bummed that I am not in Cape May with my family this week. I was thinking about the last time we are all there together. Waverly was 1.5 years old and Matt had just taken bar exam. He was wiped out. Waverly, on the other hand, wanted to wake up between 4-5 am every morning. We finally decided to stop fighting and just got up early to enjoy the sunrise. I took this photo early one morning while waiting for pancakes at a diner on the beach. For some reason this particular morning is so very special to Matt & I. It is a wonderful memory for us. I love Wavey's bright blue eyes and the fork waiting to dig into a short stack.


We are celebrating today! Oliver said "buh" today as we were leaving school. And his teacher reported he waved and said "eye" during the hello song. I am thrilled that he is continuing to learn and develop language. It truly is the little things. (My mantra!)

Tuesday, July 28, 2009


Both Waverly and Oliver had physical therapy and occupational therapy today. Waverly had a wonderful time. Oliver is still adjusting to his new therapists and spent most of the 2 hours crying. (He took a nice long nap this afternoon when we returned home.) He is so different from Waverly. Wavey has always been so passive and easy going, although she definitely went through the separation phase. Oliver is extremely cautious and does not like to be away from me. Matt likes to call him my little duckling.

Waverly has her yearly MRI on Thursday morning. I tend to get nervous about the sedation, but she did such a stellar job with her EEG sedation last month. I am feeling much less stressed about it. Matt is actually going to take the lead on this visit and take her to Children's for the day. He actually has Thursday and Friday off (because he worked last weekend and this coming weekend), so he is excited to be with her through this procedure.

I am feeling "home sick" this week. My family is in Cape May for vacation. Because of Matt's new work schedule and Waverly's dislike for the beach, we opted not to go with them. I just hate missing out on family memories though. It just makes me that much more excited for our trip there in August with Oliver. It is going to be an incredible trip. We are going to create amazing memories.

Monday, July 27, 2009

New Hairdos

Here are a few photos of Waverly & Oliver post haircuts. I think they look adorable!!

Sunday, July 26, 2009

Tea Parties

We had a very uneventful weekend. Matt had to work both Saturday and Sunday, so we didn't do much of anything. I did take the kids to the mall on Saturday for haircuts...always an adventure. Oliver cried the entire time. Waverly giggles the entire time, but is super squirmy. Fortunately, there is an ample supply of lollypops available to keep them happy. I will take some photos tomorrow of their new 'dos.

This next week is Oliver's last week of summer school. On Friday, I was able to drop him off in front of the school where the assistant waits to take the kids to their classroom. Every time I have tried to pass Oliver off to Lauren, he screams and throws himself down. This time he still cried, but willingly took her hand and walked down the hall. His teacher said he hardly cried!! She took some more video of him during music class and he was actively participating in a hot potato like game. I cried while watching him pass a big bear to his classmate.

Waverly begins her fourth week of summer school. She has 3 more weeks to go. She still jumps for joy when the bus pulls up. There have been such significant changes in her within the last month. I have mentioned her feeding skills declining. She is also beginning to flail her arms around a lot more than usual, resulting in items being thrown all over the house. Poor Preeti was hit twice in the face with books and Oliver took a toy hammer to the head. She is also losing strength in positioning, meaning she is slouching more and sliding out of chairs. We also want to have another swallowing study down soon, to address some of her feeding issues.

It is so difficult to watch her little body decline so quickly. Matt and I were reminiscing, remembering Waverly when she was younger. She used to love to have tea parties, push her doll around in the stroller and dress up in her Snow White dress. Such lovely memories. I love her so much for who she is today, but I can't help but dream about who she was supposed to be.

Thursday, July 23, 2009

Walks Like A Duck

Oliver loves to bring people shoes, as a hint that he is ready to go outside to play or have an adventure. Today he brought Matt Waverly's pink sandals. He put his feet in and we tighten the straps so they would stay on. He proudly walked around the apartment and then out to the car for a quick trip to the store. He looked a bit like a duck, since they are about 4 sizes too big, but he loved wearing them.

Wednesday, July 22, 2009


The kids are back in school for week 3 of their summer session. Oliver has continued to improve and only cried about 15 minutes today when I dropped him off. And he didn't throw himself to the floor - BIG improvement. His teacher has been video taping him the past few days, so I can watch his behavior in class. It has been wonderful to see that he doesn't spend all morning crying, but it has also been extremely depressing. Oliver tends to wander most of the time, unsure how to interact with his classmates. It reminds me a lot of Waverly when she was his age. He rarely responds to the other children. He is in his own little world. I am so sad that he has never really had a little friend. I wish I would have been more intentional about getting him around other kids when he was younger.

Waverly is doing well at school. Tomorrow her class is celebrating a birthday. She is going to love it! The change in her behavior at the dinner table is astounding. She is completely unable to have a plate of food in front of her. She dumps her plate, throws her food, tips over her chair. We have to feed her and hand her food piece by piece. It is so sad. I hate that my beautiful little girl cannot even enjoy a simple meal anymore.

Sunday, July 19, 2009

Where's Your Belly?

Tonight is a sad night. I am listening to some good music (Death Cab for Cutie, for those interested) and sitting in my sadness. Sometimes I simply need to feel. Yesterday I asked Oliver where his belly, head, nose, etc are. Maybe he was just distracted, but he didn't respond and when he did he was wrong. I remember those moments with Waverly a few years back. She stopped answering the routine questions. I never get to hear her say her name, age, or how she is doing anymore. Even though Oliver is for all intents and purposes non-verbal, he still communicates with us through signs, gestures and some sounds. I was reminded that those will soon begin to fade away.

Matt and I have decided to take Oliver to the beach for a few days in August. My mom and step-dad are graciously going to watch Waverly for us while we are gone. Wavey will love every moment with her grandparents. I was hesitant about taking a trip without her, but Matt reminded me of a trip we took to Cape May with Waverly when she was younger. We have such fond memories of her exploring the waves, playing in the sand, getting up early and going out for pancakes. We wanted to make those memories with Oliver, too. I am getting really excited for our little vacation.

Thursday, July 16, 2009

30 Minutes

Oliver has continued to get more comfortable in school. He only cried a total of 30 minutes yesterday - this is quite an improvement. He loves music. It is by far his favorite part of the day...expect for snack. He wasn't able to go to school today, because he has been running a high fever since last night. I am hoping it is only a 24 hour bug, so he begins to feel better soon. We were able to get him orthotics this week and we can already see an improvement to his gait.

Waverly loves her summer school program. Her former preschool teacher came by to visit her yesterday. Wavey was thrilled to see her. She is continuing to have trouble feeding herself. It is so sad to watch her struggle with simply trying to put a piece of food in her mouth. I spoke with a durable medical equipment rep yesterday and they are working on getting a feeding chair approved through our insurance. This will at least allow us to stop worrying about her grabbing and throwing everything on the table she can get her hands on.

Monday, July 13, 2009


Oliver's Day 5 went well. He started whimpering the moment he saw his school and clung to me when we got to his classroom. We did a puzzle together and then went to the sandbox to dig. When I said my goodbyes and left. He screamed and ran after me, but the teacher said to just leave. So I did. When we picked him up, he burst into tears and ran to me. His teacher said he did better today than last week - only cried about 65% of the day!!! Hopefully by Friday, he will be a bit more settled into the routine.

Waverly is loving school. She gets so excited when she sees her backpack and we head outside to meet the bus. She does a little jumpy dance when the bus pulls up and she is smiling the entire time. Her teacher sends a little note home every day and they have all been positive. I am so glad she loves going to school.

Matt has been home today. His new job has crazy hours, so he will be working most weekends and some night shift work. It is going to be quite an adjustment, but it certainly was nice having him around today. He was able to take part in our daily routine. We actually took Oliver out for lunch to our favorite Indian restaurant, before Waverly got home from school. It was such a nice treat.

In other news, we finally got Waverly's ABR results back. Her hearing loss has gotten worse and it is now a severe hearing loss (it used to be mild-moderate). I just made an appointment to take her into the audiologist to get her hearing aids adjusted. She is also continuing to have more difficulty at the table...although she held an ice cream cone nicely over the weekend. Dinner time has become more work for Matt & I. We may have to eat in shifts now. Oliver's foot is beginning to turn in. I was not expecting this for a few more years. His physical therapist suggested getting an orthotic insert to see if that helps, so we will make a trip up to our favorite shoe store sometime this week.

Wednesday, July 8, 2009

Day Two

Oliver surprised us all this morning. I expected a temper tantrum when he saw his backpack or arrived at school. Instead he walked right into the school, down the hall and into his classroom. His backpack slid off and he went over to the sand table. He was thrilled to have a bucket and shovel. I said my goodbyes and then came the tears. But his teacher said the crying stopped soon enough and he had a much better day. He was interested in circle time and music, although he wouldn't sit with everyone. He kind of wanders around and comes over when his interest is peaked. Nancy (Oliver's teacher) said he is doing beautifully. She picks her battles and pushes him to do certain tasks, while allowing him to participate when he is ready in others. I was so proud of him! When I came to pick him up, he started crying and ran over to me. One big hug later, he was feeling much better. The highlight of my day was hearing 2 of his classmates say "Oliver" and call him over to play. I started to tear up, right there in the midst of sand boxes and easels. He is (very slowly) beginning to make little friends. It is incredible.

Waverly had another great day. I got there a bit early and went in to speak with her teacher. I wanted to make sure she understood Waverly and how much to manage her within the classroom. She said that Waverly was doing beautifully, very exuberant. She is simply the happiest little girl on the planet. She also rode the bus home today, since they finally had the safety vest she requires. I am sure she was thrilled to be back on the school bus again.

Wavey is continuing to change before our eyes. We tend to plateau and then all of a sudden a big dip. We have hit another bump in the road. She is really having trouble eating. She is completely unable to concentrate on her food and her arm spasms just don't allow her to hold her food on her own. We have started having to feed her individual pieces of food and give her a lot more assistance at the table. We went to Chipotle last night for dinner and we realized that eating out is going to be much more of a challenge. She did say "mommy" today while we were waiting to go into school. I thought that I would never hear her say that word was the most wonderful surprise to see her lock eyes with mine and say my name. Pure joy.

Tuesday, July 7, 2009

First Day of School

Today was Oliver's first day of school. I snapped this photo just before I took him in to meet his teacher. (His backpack was so heavy it pulled him over. I have since remedied the situation.) He was fairly nervous as we entered the building. We had met his teacher twice before, which helped him feel a bit more comfortable. I stayed in the classroom for only a few moments and then left. Oliver burst into tears as I walked out the door, but his teacher reassured me that this was the best way and he would be fine. When I returned 3 hours later, he was still crying. She said he cried for most of the morning, but stopped during certain being snack (OF COURSE!). She said his behavior was quite typical and it will take him a week or two to get used to the new schedule. I think we are in for a huge temper tantrum tomorrow morning.

Waverly did beautifully. I dropped her off and was able to meet her teacher & 1:1. I gave them a bunch of literature on Sanfilippo, because they will understand her so much better with a little education. She was all smiles when I picked her up this afternoon. I think she loves being back in a routine and getting the chance to play with her peers.

I am so thankful that our school district offers such a great program for children with special needs. It is such a benefit to both the kids and parents.

Sunday, July 5, 2009

Road Trip

Happy Independence Day!

This past week is a bit of a blur. We went to Ohio to visit Matt's family and enjoyed seeing everyone. It was great to have all of Matt's siblings and their families together for a day. We spent time at the park, a 4th of July festival and we had a wonderful picnic with some of Matt's old high school friends. It was a nice visit, although we were all ready to get out of the car today after the 11 hour drive home. (I forgot my camera, hence no photos.)

Matt begins a new job tomorrow. He is still with the State Department, just in a different office. It is going to be an adjustment for the entire family. His schedule will be quite random - working days, evenings and through the night with no real order. It is a great assignment though and he is really going to love the work he will be doing.

Both Waverly & Oliver begin summer school of Tuesday. Wavey is going to have a difficult time adapting to a new school and teacher. But she will love being back in a regular routine. The summer program sounds like a lot of fun - they even have water time with sprinklers and water tables. I spoke with her teacher on Friday and she sounds lovely. I will meet her tomorrow afternoon at an open house she is hosting for the parents. She also confirmed that Waverly will have a 1:1 assistant throughout the summer session.

I can't believe Oliver is going to attend school!! I am still not sure he is entirely ready, but I know he is going to learn to love it. He so rarely is able to interact with other kids his age and I hope his social skills will begin to blossom. This is his time to do all of the things a typical child does and I have to give him that opportunity. I think we both are going to shed some tears come Tuesday morning.