Meet the McNeil Family

Meet the McNeil Family

Saturday, June 29, 2013

The Party Girl

Waverly attended her first school birthday party today. It was a very special moment for her. For me.

There are a few students in her class (4th grade mainstream class) that are particularly kind to her. They always come over to say hello. They talk to her as they would a baby which is quite enduring and nurturing of them. 

A few weeks before school ended one of the girls (I shall call her L) asked me if she could invite Wavey to her birthday party over the summer. I said of course, but not knowing how much follow through there is with a 9 year old. Then during the last week of school, L asked for my email address so she could email Wavey the invitation. Wouldn't you know it her mom included us on the invitation list and the party was this afternoon.

I was a bit nervous, given that the party was going to be a bunch of 4th grade girls and me assisting Waverly. Thankfully, most of the girls knew me and were genuinely excited to see us. Even some of the parents commented at drop off that "Wow, Wavey is here!". We stayed for about an hour. Watched the girls jump through the sprinklers and play with squirt guns. Wavey walked through the water and simply enjoyed watching her friends. She got lots of hugs and compliments on her beautiful hair. L opened her gift - lip gloss, purple glitter nail polish, emery board and a gift card to Target - before we left. She gave Wavey a big thank you hug and then we left.

It was such a simple gesture. I don't think many of the other girls would have ever even thought about inviting her. Or maybe their parents weren't sure it was a good idea. However, I love that L was determined to have her friend Waverly there to celebrate. And I am so grateful to L's parents for supporting their daughter and included Wavey. What a special day and a wonderful memory.

Wednesday, June 26, 2013


Waverly is starting to cry again. A lot. It is horrible.

As many of you know, Wavey has gone through periods of crying in the past. We have had MRIs, X-Rays, blood work, urine analysis, etc to try to find a reason. Each time we find some abnormalities, but nothing that the specialists seem to identify as the root cause. Eventually the crying subsides and we continue to move forward.

A few weeks ago the cry began once again. We try some things at home - tylenol or ibuprofen for pain, adjusting her positioning in her chairs and bed, more stretching and massage. Nothing worked. I called her new Pain & Palliative Care doctor (he is wonderful). He increased the Rx pain medication she is taking and for the first few days we thought it was working. However, the crying is returning - most especially in the afternoons and evenings. Crying with big wet tears, bucking in her seat and often the inability to pacify her.

I have grown tired to trying to find a cause. I simply want to treat the obvious pain and allow her to be happy & comfortable once again.

I am waiting for our geneticist to call so we can discuss how we can move forward.

Thursday, June 20, 2013

Last Day of School

Waverly & Oliver have finished another school year. I now have a 4th grader and 1st grader. (gasp!!!) I had to capture the moment, so I had the kids sit for a quick picture session before we drove to school. I snapped some better photos, but I just adore this one. Sassy big sister wanted her brother's chewy tube. And little brother just takes it - never raising a hand to his thieving sister.

I wish I could freeze time.

Field Day

Last week was field day at the kids' school. They spend the entire day outside doing various activities and games. Waverly & Oliver spent much of their time with their peers. I stayed with Oliver and his kindergarten friends. Here are a few pictures from our day.

Monday, June 10, 2013

Joy Prom Portrait

We just received Matt & Waverly's portrait from the Jill's House Joy Prom. They both look fantastic!!

Cape May Vacay

Last weekend we ventured to Cape May NJ for a few days at the beach. A very kind friend owns a condo there and offered it to our family. My parents came down to meet us and lend an extra hand. We had a wonderful time. We have been to Cape May a few times - once when Waverly was a toddler and again a few years ago with Oliver. Oliver is our beach bum. He loves to walk in the sand, but he especially loves being in the water. The ocean temps were a bit chilly still, so he only ventured up to his waist (although I am sure, had we let him, he would have gone in deeper). Waverly does not enjoy the beach very much - windy, sandy and wet. All things she dislikes. She had fun taking walks and shopping.