Meet the McNeil Family

Meet the McNeil Family

Saturday, October 29, 2011

A Reminder

I spent some time cleaning our bedroom this afternoon. Like many families, there is an area of the home that all things without a home end up. For us, that is our bedroom. We had a bunch of paperwork that needed to be shred, so I decided to finally do it. At the bottom of the pile were our medical files from the embassy in London. The ones belonging to Matt, Oliver and I were all fairly thin. Waverly's was at least four times the size of ours. I opened it up and was transported to 4 years ago...abnormal MRIs, course features, developmental delays. A few months into hearing aids and intensive therapy, we knew there was more to Waverly's issues. The most frustrating part of trying to find an answer was waiting. Waiting for appointments with the right doctors. Waiting to get into the lab for tests. And the worst was waiting for lab results.

The most interesting part of the file were the emails. I was so touched to see emails flying between the embassy, State's medical unit in DC, and our doctors in London. Emails I was not privy to, but showed how dedicated the nurse and nurse practitioner were who were helping us find answers.

I remember thinking I was not strong enough to handle the diagnosis. Not strong enough to fight our insurance company for a chance to take the kids to Duke to find out about HSCT. Not strong enough to manage. Yet here I sit, almost 4 years (gasp!) later. Strong.

I needed that reminder tonight.

Mr. Juice Bear

This is Mr Juice Bear. He is our new best friend. Waverly has had a rough week drinking. I noticed that she wasn't finishing her cups of milk. (She typically uses a straw sippy cup.) I tried the thickener, chocolate milk, whole milk - nothing seemed to work. We have noticed that her hands sometimes get in the way when she is trying to drink. Her hands are so manic they turn the cup all around and she in unable to get the straw in her mouth. She also would prefer to chew the lid than sip her drink. I tried holding her hands down and placing the straw in her mouth. That didn't work. 

After a week of trying all sorts of things, I pulled out Mr. Juice Bear. The Speech Therapist who works with Waverly's feeding issues gave it to us a few months ago. It is a simple honey bear with a clear tube straw. The purpose of the "cup" is for an adult to squeeze the belly of the bear to propel the liquid up the straw and into the child's mouth. It has been working beautifully. It seems as though Waverly is unable to independently work a straw. This bear allows her to stay hydrated with our help.

I am not sure if this is a temporary change or our new normal. It is a bit unsettling to know that she cannot seem to drink without our assistance. This was one of the signs we were to watch for in terms of deciding about a feeding tube. My hope is that in a few days, Waverly will once again begin sipping on her straw as if nothing ever happened. For now, Mr. Juice Bear will be with us where ever we go.

IEP Meeting

I had an IEP meeting for Oliver this week. A few years ago, IEP meetings filled me with fear. Everything I had heard was "us vs. them" and how I need to fight for my children. My first few meetings were terrible. I was combative and defensive. I then realized that the people sitting around the table were all on my team - Waverly & Oliver's team. Yes, we would disagree over special services and goals. However, coming to the table with respect and collaboration truly has helped the process go smoothly.

I know our family is fortunate to live in a school district with wonderful special education services. They have so much to offer my kids. The meeting was so easy. The teachers and staff know Oliver and they realize that his situation is unique. Our goals are focused on maintaining skills and adapting to changes, while still focusing on certain skills to move forward.

It was sad though. His teacher and the therapists all talked about how his attention span has significantly decreased over the past few months. It is much more difficult to get him to focus on a task for more than a few seconds.

One of the reasons I am so hesitant to move out of this particular school is that they know Waverly & Oliver, really know them. They have been at the school for 3 years. They have seen the changes in both kids. They can look at Waverly and anticipate what the next few years are going to look like for Oliver. I know that a new school would quickly fall in love with the kids, but I find solace in the fact that they "knew them when". I think it helps them understand the cruelty of Sanfilippo and all that it takes away.

Halloween Parade

We took the kids to the Vienna Halloween parade on Thursday night. Oliver loves wearing his costume, so we thought we would dress him up for the occasion. Plus, it provided an extra layer of warmth. Typically, Waverly does not like loud sounds and Oliver doesn't seem to mind. We had a role reversal for the parade. Waverly was all smiles as the motorcycle cops and fire trucks drove past. Oliver started screaming. He lasted only a short while before I decided to walk him back to the van. Waverly thoroughly enjoyed it.

Waverly's Heel Cord

As I have said in previous posts, Waverly is having a more difficult time walking. It has really deteriorated over the past few months. Thankfully, she is still moving around and doesn't seem to be in any pain. In talking with our physical therapist and PMR doctor, we opted for some new orthotics. She will wear them at night while she sleeps. They will stretch her heel cord, which is incredibly tight. The hope is that the constant light stretching during the night, will keep her more mobile during the day. The longer we can keep her walking, the better her overall health will be.

We had the orthotics cast last week and we should have them in about a week. We picked purple and green polka dots for the straps and purple foam. I am hopeful that we will see some improvement with them.

Oliver's Field Trip - Photos

Here are a few photos from Oliver's preschool field trip to a local working farm. He loved petting the horse and climbing the fences, but by far his favorite activity was jumping in the puddles. He was a soggy, muddy mess by the end of the morning, but he had a blast.

Tuesday, October 25, 2011

Oliver Scootering

A very short video of Oliver scootering down the hill, with help from Matt.

Oliver & His Scooter

Waverly spent the weekend at Jill's House, which meant Oliver had Mommy & Daddy all to himself for 2 whole days. While Waverly was off having adventures of her own, we had a great time with Oliver. On Saturday, we took him to the Maryland Renaissance Festival. It is a huge fair in a beautiful wooded area near Annapolis. We have gone almost every year we have lived in DC. It offers fun entertainment, great food and fabulous people watching. On Sunday we went to our favorite pancake place for chocolate chip, banana and praline pancakes for the family. We then took Oliver out for a long walk walk with his scooter. He LOVES it!! Although, he has learned that the scooter we have at home has a larger base. He is able to put both feet on it and wait to be pushed. (His scooter at therapy can only accommodate one foot.)

I love this photo. He has a beautiful smile - such a happy little boy.

Thursday, October 20, 2011

Field Trip

Yesterday, I accompanied Oliver and all of the preschool classes to Flying Pan Park for the morning. It was such a fun excursion. Oliver rode the bus with his classmates and I drove. He must have had a great time, because his teacher said he had the giggles on the trip.  We took a nice wagon ride around the property. Oliver loved it...except when we would stop for the driver to talk about what we had seen. Oliver simply wanted to bump around. It was so cute to see him cuddle up with his teacher and hold her hand. We also spent time exploring the barns and seeing all of the animals. He enjoyed the horse, but kept wanting to pet the horse's eye. Thankfully, it was an understanding horse. I think the biggest draw were all of the puddles. He and the other boys spent a considerable amount of time jumping in them. We finished with snack time, just before the rain started to fall.

It was a short trip, but a wonderful reminder of how thankful I am to have the kids in such a great school. He loves the staff and he is loved by them.

Busch Gardens

We took the kids to Busch Gardens in Williamsburg on Sunday. As part of Oliver's Make-a-Wish trip he was given a passport for free entry for the entire family to hundreds of amusement parks. We have been trying to take advantage of the offer.

Busch Gardens has a Sesame Street themed kids area. Both kids loved it. Oliver loved the rides and Waverly loved the Elmo & Friends show. It was the perfect day.

We were able to meet up with some friends while we were there. The C family has 3 kids, 1 who has Sanfilippo. We met them a few years ago and they are a lovely family. We had a great time exploring the park with them.

Bad News

We received some bad news regarding the house situation last night. The seller's second mortgage bank wants us to begin the entire process all over again...this after beginning the process 5 months ago. We are not sure what we are going to do. This house is a great fit for our family, but I cannot keep waiting on an unknown.

Tuesday, October 18, 2011

Dragon Mom

The article below was in the NY Times on October 16th. I am very proud to be a Dragon Mom. 

Emily Rapp is the author of “Poster Child: A Memoir,” and a professor of creative writing at the Santa Fe University of Art and Design. 
Santa Fe, N.M.
MY son, Ronan, looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means “little seal” in Irish and it suits him.
I want to stop here, before the dreadful hitch: my son is 18 months old and will likely die before his third birthday. Ronan was born with Tay-Sachs, a rare genetic disorder. He is slowly regressing into a vegetative state.  He’ll become paralyzed, experience seizures, lose all of his senses before he dies. There is no treatment and no cure.
How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?
Depressing? Sure. But not without wisdom, not without a profound understanding of the human experience or without hard-won lessons, forged through grief and helplessness and deeply committed love about how to be not just a mother or a father but how to be human.
Parenting advice is, by its nature, future-directed. I know. I read all the parenting magazines. During my pregnancy, I devoured every parenting guide I could find. My husband and I thought about a lot of questions they raised: will breast-feeding enhance his brain function? Will music class improve his cognitive skills? Will the right preschool help him get into the right college? I made lists. I planned and plotted and hoped. Future, future, future.
We never thought about how we might parent a child for whom there is no future.  The prenatal test I took for Tay-Sachs was negative; our genetic counselor didn’t think I needed the test, since I’m not Jewish and Tay-Sachs is thought to be a greater risk among Ashkenazi Jews. Being somewhat obsessive about such matters, I had it done anyway, twice.  Both times the results were negative.
Our parenting plans, our lists, the advice I read before Ronan’s birth make little sense now.  No matter what we do for Ronan — choose organic or non-organic food; cloth diapers or disposable; attachment parenting or sleep training — he will die. All the decisions that once mattered so much, don’t.
All parents want their children to prosper, to matter. We enroll our children in music class or take them to Mommy and Me swim class because we hope they will manifest some fabulous talent that will set them — and therefore us, the proud parents — apart. Traditional parenting naturally presumes a future where the child outlives the parent and ideally becomes successful, perhaps even achieves something spectacular. Amy Chua’s “Battle Hymn of the Tiger Mother” is only the latest handbook for parents hoping to guide their children along this path. It’s animated by the idea that good, careful investments in your children will pay off in the form of happy endings, rich futures.
But I have abandoned the future, and with it any visions of Ronan’s scoring a perfect SAT or sprinting across a stage with a Harvard diploma in his hand. We’re not waiting for Ronan to make us proud. We don’t expect future returns on our investment. We’ve chucked the graphs of developmental milestones and we avoid parenting magazines at the pediatrician’s office. Ronan has given us a terrible freedom from expectations, a magical world where there are no goals, no prizes to win, no outcomes to monitor, discuss, compare.
But the day-to-day is often peaceful, even blissful. This was my day with my son: cuddling, feedings, naps. He can watch television if he wants to; he can have pudding and cheesecake for every meal. We are a very permissive household. We do our best for our kid, feed him fresh food, brush his teeth, make sure he’s clean and warm and well rested and ... healthy? Well, no. The only task here is to love, and we tell him we love him, not caring that he doesn’t understand the words. We encourage him to do what he can, though unlike us he is without ego or ambition.
Ronan won’t prosper or succeed in the way we have come to understand this term in our culture; he will never walk or say “Mama,” and I will never be a tiger mom. The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice.
NOBODY asks dragon parents for advice; we’re too scary. Our grief is primal and unwieldy and embarrassing. The certainties that most parents face are irrelevant to us, and frankly, kind of silly. Our narratives are grisly, the stakes impossibly high. Conversations about which seizure medication is most effective or how to feed children who have trouble swallowing are tantamount to breathing fire at a dinner party or on the playground. Like Dr. Spock suddenly possessed by Al Gore, we offer inconvenient truths and foretell disaster.
And there’s this: parents who, particularly in this country, are expected to be superhuman, to raise children who outpace all their peers, don’t want to see what we see. The long truth about their children, about themselves: that none of it is forever.
I would walk through a tunnel of fire if it would save my son. I would take my chances on a stripped battlefield with a sling and a rock à la David and Goliath if it would make a difference. But it won’t. I can roar all I want about the unfairness of this ridiculous disease, but the facts remain. What I can do is protect my son from as much pain as possible, and then finally do the hardest thing of all, a thing most parents will thankfully never have to do: I will love him to the end of his life, and then I will let him go.
But today Ronan is alive and his breath smells like sweet rice. I can see my reflection in his greenish-gold eyes. I am a reflection of him and not the other way around, and this is, I believe, as it should be. This is a love story, and like all great love stories, it is a story of loss. Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is.

Thursday, October 13, 2011

Yet Another House Update

5 months in and still no decision on the house. Our realtor warned us that short sales were difficult, but I would never have expected it to take this long. We received an update last night.  The sellers have 2 mortgages on the home. The first bank has approved the short sale, but the second bank has yet to send their approval letter. They have had more than enough time to make a decision. The approval letter could come through today or a month from today. At this point, I just want a decision to be made. I am tired of waiting and being in limbo.

Big Boy

Oliver and his blue tube

Monday, October 10, 2011

New Orthotics

Oliver had another successful day with the blue chewy on Friday. He went the entire school day without a pacifer. I am incredibly proud of him and his teachers. Hopefully, we will be able to incorporate the chewy at home this week. 

I took Waverly & Oliver to Children's on Friday to meet with their physical medicine doctor. Thankfully, she didn't see any changes in Oliver. This is wonderful news. All of his physical therapy, stretching and shoe inserts are working. Waverly is a different story. Her heel cords are incredibly tight, even with daily stretching and PT. Her walking has deteriorated - she is walking on her tip toes, with her feet turned in. The doctor recommended we use orthotics during that night that can stretch that heel cord as she sleeps. She didn't think AFOs would be helpful and would only serve to impede her walking. I hope the new orthotics will help keep her on her feet for as long as possible.

Thursday, October 6, 2011

Embrace the Chewy

Those of you who know our kids, know that children with Sanfilippo have an insatiable urge to chew. 

It started when Waverly was about 3. All of a sudden, after never mouthing as an infant, she began putting books and toys in her mouth. It was an incredibly frustrating behavior. We thought she had pica, because she would chew the corners off all of her books. When we moved to London and Waverly started preschool with an OT and speech therapist, they began using a yellow chewy tube. To me, it was a huge sign that read "special needs". (This was all pre-Sanfilippo diagnosis.) Eventually, I embraced it. It was easier to redirect her to the tube, versus having her chew on everything she could get her hands on. Since then we have yellow tubes, red tubes, chewelry necklaces, cheweases, etc. We always have one handy for her, whether worn around her neck or clipped to her bib. 

We have embraced the chewy.

Now Oliver, on the other hand, has been a mouther from birth. He was in the NICU for his first 2 weeks of life and was introduced to a pacifier there. (Waverly would never take one.) He loves his pacifier still and we have allowed him to use it as needed. For the past few months, he needs something in his mouth constantly. However instead of sucking on the pacifier, he is chewing them. We are going through one per day, because once they are chewed through he doesn't want them anymore. That gets expensive! And it really isn't safe. I worry he is going to choke on a piece of the silicon. We have tried to transition him to a chewy. He thinks they are all for Waverly. He will chew on them for a short time and then deliver them to his big sister. (She is always thrilled. He will place them right in her mouth.)

I spoke with his teachers and speech therapist at school. They thought getting him a chewy that we do not currently have and introducing it to him at school, without Waverly, may help him transition. Yesterday, they pulled out a beautiful BLUE chewy tube (we don't have any blue ones for Wavey). They attached it to him using a beautiful ribbon pacifier clip. And to get him started, they dipped it in maple syrup (yesterday was pancakes for lunch day). He went the entire school day without a pacifier. When they saw him chewing his hands, they would put the tube in his mouth. Today was day 2 of "Plan Oliver & the Blue Chewy" and another successful day. No pacifier for the entire school day. I am truly proud of my little boy.

I am also so incredibly thankful for teachers, IAs, and therapists within the school. They came up with the idea, implemented it and are working to redirect Oliver to a new normal. We are so fortunate to have such incredible people in Waverly & Oliver's lives.

Tuesday, October 4, 2011

Prayers for Megan

I just spent some time reading a little girl's Caring Bridge site. She has Sanfilippo and is in the final stage of the disease. Her little body is shutting down and she has been sent home with hospice. She is 11 years old. Please keep her and her family in your thoughts & prayers. 

I am 3.5 years into my Sanfilippo journey. This news never gets any easier. I cannot help but calculate Waverly & Oliver's ages - wondering how much time they have left. I am trying to recenter myself, focusing on the here and now. Hoping for a miracle cure that can intervene and extend my time with my babies.

Monday, October 3, 2011

Quiet Weekend

We had a quiet weekend cuddled up indoors, safe from the chilly rain. Waverly had a cold, so it was the perfect excuse watch movies and bake. We had our own little Oktoberfest celebration on Saturday and finished the day with homemade apple dumplings.

Still no news on the house. My fingers and toes are crossed that we will learn something this week. I really hope to share positive news with you all soon.