Meet the McNeil Family

Meet the McNeil Family

Tuesday, July 30, 2013

Summer Changes

I didn't realize it has been 2 weeks since I have updated the blog. We have been busy with summer day camps at Jill's House. They have been wonderful for all of us. The kids love being there. What's not to love - playground, indoor pool, gym, bouncy houses, library, movies, sensory rooms. It is a great way to keep them both active and socialized during summer. And it gives me a chance to do something as well.

This week we are taking the week off from day camp and staying home. It has been nice to stay in pjs all morning while cuddling on the couch watching Disney Junior. The weather has been superb, so Waverly & I spend some time on the front porch or enjoying the backyard.

The kids are both doing well.

Oliver is changing. Forgetting. I forgot how much I hate this stage. He struggles to remember how to climb up onto his bed or step into his chair for meals. Typically when I tell him it is time to go, he will go to the front door. Now he wanders around looking lost. And when we go out to the car, he would simply go to his door and climb in. Now he wanders. Thankfully he isn't getting frustrated with the confusion. But it breaks my heart to see him unable to do the simple tasks that were once routine for him. 

Waverly is doing well. Her crying seems to have subsided thanks to her new pain medication. She is slowing down though. Her walking is becoming a bit more labored than usual. She is beginning to cough/choke on her own saliva. She also has been unusually tired the past few days. On Sunday, she even fell asleep in her stroller while we were at a friends' house. She never does that. The sleepiness scares me. I know from talking with parents who have older children with Sanfilippo that they begin to sleep more as their body slows down. Her simple cat nap on Sunday filled me with fear.

Monday, July 15, 2013

Finding Nature



Matt and I love being in nature, especially mountains. While the DC area has a lot to offer, natural beauty is not necessarily one of them. We decided to drive out to the Shenandoah National Park and travel down Sky Line Drive. It is about an hour away to the north entrance. We packed a picnic lunch and off we went. There are lots of look outs along the way, visitor's centers, walking trails and picnic areas. The kids enjoy car rides and love being outside. The mountains provided an escape from the heat and humidity - it was a beautiful 75 degrees up there. It was a fantastic day trip and we all had a great time.

Thursday, July 11, 2013

Just Breathe

Waverly has been doing much better the past few days. The increased medication seems to be addressing her pain and making her much more comfortable. Thankfully she isn't experiencing any side effects from the drug and is her happy, cuddly self.

Last night, I went in to hook her up to her feeding pump. She wasn't asleep, just drowsy. She gave me some wonderfully goofy grins as I connected the tubes and starting feeding her. As soon as I walked out of her room she cried. I knew that cry. It is a lonely cry. A "mom, please stay with me until I fall asleep cry". As soon as she saw I returned, she greeted me with a giggle and settled down. I sang a few favorite songs, stroked her hair and kissed her forehead. As I looked down at her beautiful smile, I was overcome with anticipation of loss. One day I will not be able to head that silly giggle or see her toothy grin. I cannot imagine the pain.

I sat down on her bean bag chair and cried. 

Eventually the rhythmic sound of her breathing calmed me. I love that beautiful sound.

Monday, July 8, 2013

Pain Managed

Waverly & I spent most of the day with her doctors. We met with her geneticist and her pain/palliative care doctor. We have been desperate to discuss Waverly's crying episodes that seem to be a response to some kind of pain. After a thorough exam and lab work, we are all confident we ruled out many causes. The pain could be hip and joint related, since we know she has issues already in those areas. She is also having circulation issues with her feet, resulting in swelling. That could also be a factor. After many hours, we all agree she is in pain and we need to address it. She has been on a low dose pain medication for the past few months and we have seen some benefit. They have decided to add an additional dose in the afternoon, when the crying seems to begin. They are also going to give us an additional medication that we can use as needed.

I have been frustrated these past few weeks over the inability to get her doctors to understand the situation. I left her appointments finally feeling like they get it. There is absolutely no reason she should be crying from pain. Our common goal is keeping her happy and comfortable in the safest way possible. Success!!!

I have watched Waverly lose so much because of Sanfilippo Syndrome. I refuse to allow it to take my happy little girl's warm personality from us as well.

Friday, July 5, 2013

Her Eyes

Beautiful girl. 

Her eyes speak volumes in this picture.

She has so much to say and she always finds ways to express herself.

Monday, July 1, 2013

Happy Half Birthday, Oliver!!

Yesterday we spent some time celebrating Oliver's half birthday. His birthday tends to get lost in the week between Christmas and New Years. We are usually away from home and unable to host a party. I thought we would start celebrating his half birthday with things he loves. Pancakes and ice cream.