Elefun

We have owned this toy for 8 years. I bought it when Waverly was 3. I thought she would love trying to catch the falling butterflies. I remember her holding the nets, saying "Catch! Catch!" over and over again as I turned on the elephant. The trunk filled with air and eventually a bunch of butterflies would come flying out. I would try to help her move her net in order to catch them, but inevitably it was pure luck if any were caught. She loved watching them flutter to the ground.

It has been years since we have opened the box. For some reason, in all of our moves and purging of unused toys, I cannot bring myself to getting rid of this game. I tried last week. I cleaned out the closet in our spare bedroom and found Elefun on the top shelf. I put it in the giveaway pile, but eventually put it back on that top shelf. Maybe another time . . .

Summer Update

I cannot believe we are already one month into summer. We have had a lovely time thus far. It is so nice to have a break from school (truly a break from getting up early and driving in 66 traffic). We were able to take a short trip to Ohio to visit Matt's family which was a lot of fun. The kids are super travelers. They have also attended a week of day camp at Jill's House, with a few more on the calendar throughout the summer. Below is a picture of Ollie showing off the sun visor he made.

Waverly is doing well. Her walking is deteriorating and she can no longer stand on her own. She needs full adult support to walk and can hardly use her walker anymore. She has also been struggling with edema in her legs and feet. She had her annual cardiology appointment and thankfully everything looks fine. The swelling is simply a result of inactivity. So we are using pressure socks, elevating her legs, changing positions and walking with support.

Oliver is still having a difficult time. The new medication, which is a pain med, seems to be helping. He still has bouts of whining/crying, however it is much less dramatic than it has been. He is pacing a lot more - wandering the house in ways he never has before. I have noticed that if I can strap him up in one of his chairs after dinner, he calms down. It is almost like his body simply cannot stop moving, unless we force him to sit.

Refresh

The blog has finally been updated. I have been waiting for some great pictures of the kids and my friend, Megan, came through for us. She lives in Ohio, so while there for the 4th of July holiday we made a point to schedule a photo shoot with her. I have adored her pictures on Facebook over the years and I knew she would be a wonderful fit for our family. We had a lovely evening at the Wegerzyn Gardens. The kids were amazing (which given Ollie's recent behavior was a miracle). I am beyond excited to have new pictures of the kids. What a wonderful opportunity to capture our family in the moment.

If any our of Dayton area friends are interested in a fantastic photographer, please consider our friend.  Click HERE for her website. 

Sad Oliver

I am sad for this little boy.

Oliver has been having a very difficult few months. Each afternoon he begins to cry and whimper for hours. It lasts all afternoon, into the evening until bedtime. He then will go to bed just fine and sleeps all night. We had him checked out by our pediatrician and geneticist to rule out any obvious causes. He doesn't appear to be in any pain. The crying definitely looks anxiety driven or simply neurological regression.

We have been down this road before with Waverly. It was six months of crying and fussing - highly unusual for Waverly. We met with every specialist she has for blood draws, x-rays, and MRIs. We never found a cause, but we finally met with a Pain & Palliative Care doctor. He couldn't find the source of the crying, but was willing to begin treating it. In her case, it seemed like pain. After a small dose of a pain medication, she returned to her normal self.

We returned to Pain & Palliative Care and are working to find what medication may be able to bring him some comfort. Thus far his behavior seems much more like anxiety rather than pain. We are on our second medication and hopefully we will find one that helps him.

It is an awful feeling to watch your child cry for hours and be unable to provide him relief.