Time Flies

Okay, so that is more than my attempt at explaining why I haven't posted in so long. It is also an observation fueled by Mac's 5th birthday (!), the fact that I enrolled both kids in school this week (!!), and the sheer lack of time that I have in any given week (so that come Friday, I look back and wonder what I did all week).

Yes, Mac is 5. It seems so weird (how can she be that old), but also very appropriate. Perhaps because we have been building it up for so long, 5 seems to be the perfect age for her. Not to young, and not too old. We celebrated her birthday with a trip to Uptown Playground, and indoor play area. She and Oli had a lot of fun. It was great, because it was clean, almost empty, had the coolest climbing equipment ever, and lots of free room for Oli to get around in his walker. Then we had Chili's, and Cold Stone ice cream cake with grandma and grandpa. A great day. We are just having her parties this weekend. This is the first year that she is having a "family" party and a "kids" party. The kids party is kind of small, since she doesn't have a lot of friends outside of karate, and those friends that she does have outside of karate can't make it. But 5 or 6 of her karate friends are coming to the school for an afternoon of pizza, activities, and G-force. She is excited, so I am excited. But also so nervous -- I don't want it to be a loser party. I want it to be cool! I guess it will be no matter what if Mac is involved :)

We registered Mac for Kindergarten last week, but in true Lisa style, I couldn't find her birth certificate. So she isn't fully registered, but at least they know that she is coming. And Oli's EI (early intervention) case manager set up a meeting with the school district to start his registration, as well. He is transitioning out of EI and into an integrated preschool when he turns 3 (which is conveniently in August, so he doesn't have to enter mid-year). From what I can gather, he qualifies for a free spot in preschool based on his diagnosis, but they still have to evaluate him twice (perhaps that is why NJ is in so much debt!!). Ruth, his EI PT, was at the intake meeting, and mentioned that he will probably need a wheelchair. I felt kind of blindsided, b/c I thought we were making good progress with his walker. Admittedly I might be in denial, since he only really walks @ 20% of the time, and crawls the other 80. And we hit a lot of roadblocks, as well. For example, he just spent the last 2 weeks out of his HKAFOs (big braces used with the walker) because of a pressure sore. But I figured since he can walk, we just have to up his game a bit. But her argument is that if he isn't completely at ease with his walker, it will hold him back and he won't be able to keep up with the other kids. I'm afraid that if we introduce the wheelchair too soon, he will come to rely on that too much, and never really be a walker. So it is a real dilemma. I am going to call CHOP and see what they have to say.

So, time does fly, but it does involve progress. That is a good thing! And even though I feel crazed and busy, I almost always remember to cherish the moment. How could I not?

Sister and Brotherly Love

Quite fortunately, we have had a relatively calm new year so far. Our milestones are coming in the form of small things, like Oli's new words, Mac's always developing sense of humor, slowly expanding Oli's range of mobility by taking his walker to new locations like the library and the bookstore, karate testings, new vegetarian recipes that the kids only like every 4th or 5th try, and movie nights. Here is a perfect example of how Mac and Oli pass the time on any given day.



They crack me up when they play together, especially when they think nobody is looking. Also note in this video Oli's outfit. He got the Jet's gear for Christmas, and they won every game when he was wearing the outfit. It was a joke for a few weeks -- right before game time, I would get him suited up. Unfortunately, the "magic" wore off last week, but it was fun while it lasted.

Starting off the New Year Right

We had our spina bifida clinic appointment on Wednesday, and got good reports across the board. While we didn't see neurosurgery, because we just saw them in November, we did see all of the clinic regulars (pediatrician, orthpaedist, nurse practitioner, and physical therapist), as well as NOPCO (orthotists), and urology. While neursurgery used to be the appointment I most anticipated, now it is physical therapy. I am so eager to be sure that Oli is on the right track, and to figure out how we can help him along in his journey to walking.

Overall, we learned that he is in the 5th percentile for height and 55th for weight, so we have to make sure that we make smart food choices for him moving forward. He is a slight 30 lbs., so it is no emergency, but still something to watch for. We most likely have to up his Miralax (laxative) and keep up with his daily enemas (to get him on a bowel management routine that will enable him to be socially continent). He is on the right track walking, but not nearly ready for reduced bracing (bummer, because I can't wait to get rid of his HKAFOs), and his feet remain "tight" (wanting desperately to go back to the club foot position) but manageable. Perhaps most importantly, we learned from his renal ultrasound that he has "normal bladder and bilateral kidneys" (direct quote from his u/s report). While we knew we weren't having any problems in this area, it is always nice to have a medical confirmation. All this, and we were in and out in just about five hours. That sounds like a lot, but is a best-case scenario for clinic day.

What a great way to start off the new year!

Happy Holidays!

After a fun night of opening gifts, hanging with family, and eating traditional pea and potato soup at Grandma and Grandpa's for Christmas Eve, the kids were wiped out. Mac managed to get up by 7:45, but Oli wouldn't budge.

Oliver slept in while Mac opened her stocking.Meanwhile, his stocking waited.


After the gift extravaganza at home, off to Christmas with Grandpa George and Grandma Pat...


After Christmas with Grandma and Grandpa, we went to Nanny and PopPops. Tim has those pictures, but you can imagine a true gift opening extravaganza.
And finally, a few days later, Christmas at Aunt Beth and Uncle Mike's. We are truly a blessed family to have so much fun and love in our lives!

Taking Our Show on the Road

Mackensie has been performing in quite a few shows, lately. We go to a wonderful church, with a wonderful youth program. They give the kids lots of opportunities to get involved and show their skills. This hasn't always worked for us in the past - I'm sure everyone remembers last year's Christmas show that involved Mackensie running from stage to audience a record number of times and ultimately taking and throwing one of the necklaces meant for baby Jesus. I was going to keep her out of the play this year just to be on the safe side -- Mac is a great performer, but a bit unpredictable in the behavior department. However, they asked her to be in it, so it's on them. In the meantime (I suppose gearing up to the holiday performance), Mac has sung in two different church performances over the last three weeks. The picture is from the first performance, in full choir get up. The video clips are from this past Sunday. It was a surprise to me and Mac -- we had no idea she was going to sing. But she picked up the words quickly, and gave it her all. One of the other parishioners even said she was the "most enthusiastic." Check out clip number 3, "The Finale" for her most enthusiastic performance.
The Opener

The Middle

The Finale