I Need a Moment

Actually, I need more like a month. Technically, that might be what summer was, but I was still working then. I need a month where I don't have to think about anything but getting our house and lives in order. Specifically, I need a month to take care of business for Oli. I haven't done horribly; in the last few weeks I have ordered, gotten, and started using his cone enema. I have ordered and gotten his forearm crutches. I have talked to the insurance company twice, and left a few messages for the billing department at Children's Specialized (which never calls back). I have met with Case Management, a follow up service to early intervention. I have talked twice with his school physical therapist. But each of these items off of my list is just a link in the chain...there is so much more...and he needs me to get it done:

1. Medicaid: I need to get secondary insurance. We need SSI or Medicaid or something. I don't even know what -- that is how far outside of the process I am. I should have started the process a) when I knew Oli's benefit for PT was going to run out and b) when it was summer. But nope. When I met with Case Management last week, they gave me the number for our local SS office and DDS (disability services) and told me about a Medicaid loophole we might be able to use. In importance, this task rates a 10 out of 10. In terms of being confusing, this task rates a 10 out of 10. So it sits untouched, at both the top and bottom of my list. Since I am a master of both procrastination and denial, your guess is as good as mine as to when this will get done.

2. Ditto to DDS.

3. Figure out existing insurance: We are still working on an appeal for more PT visits for Oli. This one really isn't my fault -- Children's Specialized just got the August bills over for them to reject, so we could only kick off the appeal process in the last few days. I found out yesterday, and called Children's Specialized right away. Of course, Oli's therapist, who has to start the ball rolling, is away until 10/11, so this is something that stays on my plate.

4. Figuring out the cone enema: I might have bought it, but I have no idea how to use it. That's not entirely true -- I have tried it following the directions, but it isn't working out too well. I contacted CHOP and they gave me the contact information of a mom who loves the cone enema for her daughter. I need to find what I did with her email address and then e-mail her asking for help. I also need to contact the company and make sure it is latex free. The whole line is supposed to be, but it looks like there is a rubber band around the tip of ours. Of course.

5. Sign Oli up for swim lessons: or some sort of physical activity. He only gets school PT, no outpatient, and he needs something. The neurologist recommended swim way back over the summer, but Oli still isn't swimming. Add it to the list...

6. Get new AFOs: He has grown out of his little braces. But this should be easy. I made an appointment for next Tuesday. We just have to get there.

Did I mention the house? Laundry? Floors? Cobwebs?

Luckily, because I am a master of both procrastination and denial, we have still been doing our usual day to day stuff. School, work, dance, karate, church, shopping, going out, hanging out. And I know it is good to have balance. If I could just have a month where I didn't have to split my attention between work and home, I feel like I might be able to catch up. I think the best I can do is work on my balance, and realize that no matter what, all is way better than nothing.

How was school today?

The Price of PT and other things that aren't fair

Insurance: a necessary evil. So glad to have it, but maddened by limitations. And we have been pretty lucky so far. Considering all of the doctors visits and equipment, we haven't been denied much. But now we are being denied physical therapy, and Oli really needs it. Our only other option is to pay out of pocket, but at $156 per session (and that is the reduced rate) we just can't afford it.

On top of that, I'm now being told that our insurance is denying claims from October of last year. If that is true, we are in trouble, since he also had sessions in November and December. Why am I only finding this out now -- almost a whole year later?! If we have to pay that, it won't be pretty. Of course, the hospital billing department, which has been ridiculously unresponsive as I've repeatedly left messages over the last month, is again not returning my call. Between an inflexible insurance company and an unresponsive billing department, I'm not getting anywhere but frustrated.

The only good news on the PT front is that Oli started his PT lessons at school this week. His new school PT met with him in gym, and apparently they had a great time! He's been using the scooter and loving it. And he walks everywhere in school, which is such a new concept for him. However, he is really making a go of it. And to top it off, I just ordered his new equipment, which is forearm crutches. I'm a little intimidated by them, since they offer so much less support than his walker, but it would be GREAT if he could start to use them. We had started with them in his PT at Children's, but he hasn't used them since we stopped going a few weeks ago. With his own set, he will be able to take them to school PT and really get started.


Maybe I should send the insurance company this picture. Would you deny this little face?

School Days

School has officially begun in the Chewning household! I can hardly believe it, but the kids are entering their third week of school (and I use the term "week" loosely, b/c they have not had more than 2 days of school in a row yet). The verdict: they love it! Mac more than Oli, but I think they both enjoy their time out in the world. There was a lot of misinformation leading up to the first day of school, especially concerning Oli's programs, but once the first day came, it all worked beautifully.

Here is Mac showing off her back to school style. She was so happy with her Hello Kitty outfit and backpack. As a side note, I also would have enjoyed that outfit circa first or second grade. Everything old is new again!



Here are my two little ones getting ready for the bus. After much debate, we ultimately decided to let both of them take the bus. Unfortunately, they are on separate buses, but each seems to be enjoying his or her own ride. Right now, Oli is the only one on his bus. Hopefully, he will have other kids with him in the future.



Here is Mac getting on the bus. Even though I had prepared for the first day of school, I couldn't believe that I was actually expected to let them get on the bus on their own and then trust that they would get to school okay. It seemed unfathomable to me. Luckily, b/c of the bus/school wanted us to teach them about Oli's braces, we were actually told to follow the bus on the first day and get him on/off. When we pulled up to the school, there were buses everywhere! Once I found his bus, I also found the school social worker and Oli's teacher there waiting for him, too. Oli had a long way to walk, and almost got run over by the hordes of kids entering school. Luckily, they now are willing to drop Oli off in the back, where he has a shorter walk both outside and inside. So I was spared the agony of just putting them on the bus and letting them go until day 2.



Finally, here is Oli fresh home from his first day of school. Although he was not too verbally expressive about his day, he had a sort of confidence about him that told me he enjoyed himself. He asked for chocolate milk, and downed it like it was a shot. Then he slammed his cup down. It was pretty funny. He's just that kind of guy!



I'm very proud of my kids as they take this large step forward in their development. Although I am sad that this marks the end of their "baby era," it feels very right and natural that they should be going to school. I am so excited to see what this year brings, and the kids that they will become as a result.

The Most Wonderful Time of the Year

Yesterday, we reached one of the mommy moments that I have been waiting for -- back to school shopping. To me, there is very little that is more exciting and satisfying than fresh notebooks, backpacks, and new pens. Since I came to terms with my inner nerd (and its not buried too deeply) about 30 years ago, I fully embrace back to school time and all that comes with it. As an aside, I am a little less enthusiastic now that it is my job, but I still enjoy the freshness of it all.

With both Mac and Oli starting school in a week and a half, Aunt Beth (one of the only other people in the world who gets as excited as I do about school -- not surprisingly, she is also a teacher) and I decided it was time to take the kids school shopping. I have been saving my 10% off coupon from Target, along with some coupons. Armed with the coupons and giddy excitement, we headed shopping...

We started out at Chipotle. Tim came along for that part. Delicious and successful. We were coming off of a horrible doctors appointment in which Oli got his dreaded MMR shot and Mac had to be restrained for her shot. So, lunch was a much needed break. Since we were at the mall, I decided to look for pants for work. Big mistake! Mac was so excited to go school shopping that she could not make it through my pants browsing. Into the car and over to Target.

Our first round of school shopping was not all I had hoped it would be. Mac way hyper, Beth and I were exasperated, and Oli just wanted to look in the "robot aisle." We loaded up our cart with the designated supplies (and then some), but the trip didn't quite feel right. We decided a trip to another, better Target, was in line.

It actually worked! Mac calmed down, Oli took a nap, and the next Target was much better. We finished up with a cinnamon pretzel and coffee. Mac played "kindergartner" while Beth and I enjoyed our coffee. Oli had a little trouble with his pretzel, but it was all okay in the end.

And here is a picture of just some of the spoils..

Happy Birthday Oliver!

Oliver is three! For all of our work and worry, he is progressing very nicely. He can walk and talk. He has an amazing sense of humor and a sweet little personality that melts my heart every time. He is a true blessing, and I am so proud to be his mommy!

We decided to do his birthday a little differently this year. Usually, we have a traditional big birthday party. However, it is increasingly difficult to get everyone together, and our house increasingly needs work. Between extreme hot weather and extreme business, our backyard has gone from "overgrown" to "jungle."

So instead, we had an Oli day. First, we went to Toys R Us, and Oli was given free reign to pick whatever he wanted. A dangerous concept, I know, but he was really good about it. After some fun browsing and debate, Oli wound up going with some Super Hero Squad figurines and their helicopter headquarters. In the last few weeks, Oli has gone from a Cars guy to a Super Hero guy. I have to say, I think the SuperHeros are more fun.

Then, we went to the Rainforest Cafe for dinner. Since a very fun trip with Aunt Beth a few weeks ago, the kids have been begging to go back. So we decided to go for dinner. Once there, Mac got her "unbirthday" gift -- a stuffed monkey she has been thinking about since our last trip.

The next morning, Oliver's real birthday, he woke up early and immediately asked for his new toy. We spent the rest of the day visiting some of his grandparents. Here is a video of Oli hauling in the Iron Man loot at Nanny and PopPops:

Then we went to grandma and grandpa's for dinner, and we still have a fun day of celebraton at the shore on Sunday. When all is said and done, we will have celebrated with  three cakes, fun gifts, and lots of love!

Last Week in Pictures

Greetings from the Jersey Shore

It has definitely been a week of both relaxation and running around. But I think that is always the way. My Aunt has very generously offered to let us use her house at Point Pleasant while she is away this week, so Tim, the kids, and I have been going back and forth between the shore and home. We came down Sunday night, and spent all day Monday on the beach. Mac LOVES the ocean, so she and Tim spent hours in there on Monday. Oli is less enthralled with the water, more enthralled with the sand, so he and I spent our time going between dry sand (blanket) and wet sand (waterline). There is a cool cafe/restaurant near the house/beach, so we had lunch there. Lesson 1 of the week: mid-day beer at home = drinking problem, mid-day beer at beach = relaxing (at least that is my interpretation. Who knows, maybe mid-day beer at beach also = drinking problem?)

Tuesday, Oli had a neurology appointment at CHOP. He has been episodes where he tenses up and looks around, or sometimes gets tense and waves his arms around for quite a while now. I have gone back and forth between thinking they are problematic and thinking they were just "baby excitement." So, finally, I made an appointment and took him in. I hate adding yet another doctor to our repertoire (this was neurology, not neurosurgery), but I felt it had to be done.

Oli had an EEG in the morning and an neurology appointment in the afternoon. We had about 3 1/2 hours in between. However, we are very good at passing time at CHOP. We spread out lunch (ice cream for Oli, thank you very much) and then went to the lobby. The lobby is pretty cool and has some large mechanisms in which balls are shuttled and -- a fish tank! Oli loves fish -- they have a cool tank at Children's Specialized, where he gets his PT. We spent over a half hour just at the fish tank -- Oli played peek and really talked to the fish.

In his appointment, we learned that he is not having seizures, but rather, self-stimulating behaviors. I have always heard this terminology paired with autism-related behaviors, but the  dr. said this isn't necessarily the case. He might be expressing the extra energy that other kids bounce out or run out, but he can only really use his upper body. They said that if he is still doing these behaviors at 4 or older, it could be more of a problem b/c he should be better able to articulate what is making him do it by then. They also mentioned, almost as a throw-away, that his eeg was "slow" but that should be expected b/c of his diagnosis. Um, huh? As always, they said this may or may not mean anything. At that point, I was just so happy that nothing was wrong that I let it go at that.

Wednesday: a tour of the kids' new school (can't wait for september), color belt testing, and dinner with aunt beth at the Rainforest Cafe. Even our down days are fun!!

Thursday: Back to the shore! Our friends Dana and Matt met us there with their girls, Emily, Sarah, Megan, and Chloe. What was suppose to be a full day on the beach was sidelined by some bad weather, but we had a great time! We spend the whole day on the boardwalk -- the rain held off just long enough for us to ride some rides, play some games, eat some snacks, and finally go on the beach. Just as Dana and Matt were packing up to go home, it started to pour. So we ran the few blocks back to their car. Funny how we will spend a whole afternoon in the pool or ocean, but the run from the rain.

The sun came back out just 2 hours later, and we went back to the boardwalk for dinner. A great day and night! Today is beautiful, so we are off to the aquarium and then the beach. Although the locked-up fish make me kind of sad, Mac has been begging to go all summer. And it is an educational experience, so it is hard to say no.

I may not be getting much work done this summer, but I shore am having a good time :)

Blog Makeover!

Okay -- nothing gets me excited like a good makeover. So here it is -- a makeover for my blog. Yay! This marks my re-dedication to blogging on a regular basis. I know -- I've said that before. But this time I mean it. I waste so much time online already, I might as well be talking about myself :)

How does it look?

I hear the secrets that you keep...

When Mac was a toddler, before she could really articulate what she was thinking, I used to wonder what she dreamed about at night. If you don't have language or grasp abstract concepts, how do you dream? Babies don't have a sense of narrative or time (right??), so what do they dream about?

Lately, Oli has been talking in his sleep. A few nights ago, he said "No, not my biggies." His "biggies" are his HKAFOs, or the braces that go up to his hips. He has been giving me some resistance to wearing them lately,probably b/c they are cumbersome and make him really hot. But he needs them to walk, so more often than not, he has to wear them. I guess it really bothers him, b/c he sounded really distressed in his sleep :(

This morning, while he was sleeping, he said "More jello beans," with a big smile. "Jello beans" are jelly beans. I thought it was so funny, b/c he was so expressive, even though he was sleeping. He loves jelly beans and hates his braces -- I guess his conscious and subconscious are not that far apart...

This from the boy who is in speech therapy. Actually, he is having his (last) 6 month evaluation for Early Intervention tomorrow. We are recommending that he drop speech, and add a second PT session. With school coming, we want him as ready to go as possible. Speech hasn't really been working out, so this is a welcome move for us. It turns out that Oli is so good at talking that he can do it in his sleep.

Weird Things My Kids Say

In the last 24 hours, my kids have said:

"I a big bird. I take you down, mommy."

"Don't throw me in the garbage. Okay, just my head."

and

"I feel alive!" (said in a triumphant yell)

This brought me to 2 realizations:

1. My kids sound like the foreign exchange students who learn English by watching movies.
2. I probably can't send them to school, because there is a good chance we will go to jail based on the outlandish things that they come up with.

So, without meaning to, I let too much time slip by between my last post and now. So much has happened, and I haven't really had time to sit down and reflect on it all. Something that I don't think I've mentioned is that my mother in law was diagnosed with cancer in November and had surgery in February. Surgery went well, but she has had other complications, which is dragging out her post-operative treatment. Luckily her prognosis is good, and it is only a matter of time before she is through this ordeal. We are trying to strike the appropriate level of disclosure with the kids, letting them know that something is going on, without too many of the scary details. Because Nanny is still recovering, Tim and I have divided up our time with the kids, forming an ad hoc childcare/work schedule. The wonderful piece that has been added to our puzzle is my Aunt Patti and grandma, who come down every Wednesday to watch the kids. It has been great getting to see them every week, and watching the kids' relationship with them grow. When I was little, my grandma used to take care of me and Beth every Wednesday. It is beyond special to me that she is now getting to do the same with my own kids.

Because of everything that was happening, we delayed Mac's birthday parties until the end of March. For the first time ever, she had a kids party and a family party. The kid party was (where else) at the karate school. I was afraid that it wouldn't be fun, because only 6 kids could come. But once her first guest arrived, I realized that Mac was so excited that she would have fun with just one kid. Luckily, more showed up and it was a great time. Tim did a wonderful job keeping the kids busy, and we had an awesome princess cake and cupcakes.

Mac also made her Easter Play debut at church. Following her triumphant performance in the Christmas play (which really just hinged on her not throwing anything at the Baby Jesus this year) we decided to let her be in the Easter show. It was an exciting showing, and watching her become friends with the other kids in the program has been a real blessing. I am so happy that we have a good church where she can learn and grow.

We are gearing up for a busy few weeks. Not only is it the end of the semester, but the karate school is also hosting the regional tournament for April. Tim has lined up a lot of special guests, and extended the event into a nighttime tricking gathering and a tricking seminar the next day. It will be a busy, but hopefully lucrative and educational, weekend.

Meanwhile, while Tim is hosting the seminar, the kids and I will be heading to Sesame Place. Each year, the Variety Children's Network rents the park and opens it free for kids with disabilities and their families. We went last year and had a great time. I can't wait to go again.

Walking Ahead

I talked to CHOP and they strongly discouraged getting a wheelchair that this point. They told me that the window for kids with SB to learn walking is really 2-5 years old, so he is on the early end of the curve. If we were to get him a wheelchair now, he would probably choose to be in the wheelchair over the work of learning to walk, and we would probably be more tempted to put him in the wheelchair, too (it does take him quite a while to walk from point A to point B, but that is more because of distraction than ability). Additionally, they said that if we send a wheelchair and walker to school, the teachers would always put him in the chair over the walker. So after talking to CHOP, and then to his PT at Children's Specialized (outpatient PT, aka "Baby Gym"), we are going to hold off on the wheelchair for now. I am comfortable with this decision.

Now that we've recommitted to walking, I have had Oli walking everywhere. To and from the car, from the karate school to the pizza place, and even around Party City (which was maybe more than I was ready to tackle). He is doing great, and seems to love it! We get really positive reactions from people. He did fall once yesterday, which is a big fear of mine since his knees are locked so he can't really break his fall. But he was able to put his arms out in time, and it wasn't so bad. I guess he has to fall a few times before we are both comfortable.

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!