Overnight Camp

Eli and Maddux are in a magic summer of qualifying for two separate camps that are co-ed and target both of their ages for the same week/session. Given that each was a camp they both really wanted to attend, and their short overnight stays, we allowed both.

This past week found them at Woodlands camp in North Georgia. We were fortunate enough to line up our camp session with the Marshall boys (meaning all three boys got to bunk in the same cabin with 10 other boys). As it turns out, Maddux didnt' get to interact much with the boys at all, but she still had a blast. She hugged all of the girls (12 others) in her cabin before we left today, and she exchanged addresses with at least three so they could write each other. Maddux also told me that the girl in the bed above hers has a brother with Down syndrome. Apparently she had a picture of her family, and Maddux asked her if he has T21. What a cool connection!

Both kids went on and on about the fun time they had playing outdoor games and doing the water slide and the zip line and and and.... Maddux shared half a dozen 'cheers' with us that her team chanted each day; she was totally in her element.

Eli. He had a great time. Especially because he was with his best friend. I asked him about a photo I saw of a few kids sitting with counselors one-on-one. He smiled and said, "Oh yeah, that was for those of us that wanted to be saved."

Wait...what? We haven't really talked about that a whole lot. We've talked about baptism, but neither has expressed much of an interest at this point. They both seem 'good' with their relationship with God, and it wasn't something we have wanted to push at all.

Eli informed me that after chapel one day the counselors said that if you wanted to stay behind and talk with someone about being saved, you could. He opted to do just that. So so cool...he was all smiles talking about it. And now Maddux is asking about getting baptized. Life is good.

All four kids agreed that this was the most fun camp they've been to, and they want to return next year.

Gigi's Camp

What a week! Ruby and I were at Gigi's Summer Camp this week while the big kids were at overnight camp. Even though we were *only* there for four hours each day, I don't think it was any less action-packed than the overnight one the kids went to!

Ruby barely made the cutoff by turning three last week; I was able to volunteer since she could be an actual camper. Each day she did arts and crafts and music and movement with a 'buddy' and all of the other kids.

We had between 20-22 each day; plus one volunteer for each kid and a few extra 'floaters'. In addition to all fo the fun activites planned, there was a special guest each day, related to the circus theme. One day was a clown/juggler/magician (the little kids LOVED him), one day was a gymnastics troup, one day was story tellers/musicians....there was never a lack of entertainment!

Unfortunately, the week caught up with Ruby today and we had to leave Gigi's early due to exhaustion and a potential fever, but for her first summer camp experience, I'm counting it as a success!

Ruby's Three

Three years...that flew by! This girl has taught us so much about ourselves, our family, and the world around us in those three years. I have a good feeling that she's just getting started too!

The kids and I made her pancakes for her birthday breakfast and then she opened her gift from them (a matchbox car race ramp which she LOVES). We hung around the house playing with her water table and toys most of the day. After her nap, we had pizza (her choice) and then the real fun began.

For Ruby's birthday, we opted to not have a big blowout party, but because so many people love our girl, we wanted to include them somehow in the celebration. Rather than cake, we did ice cream cones (because they are Ruby's FAVORITE), and invited friends in our neighborhood to join us. Lehr also set up a live feed on Facebook so family and friends could watch online.

We had several families over, resulting in over two dozen ice cream cones. I think Ruby's favorite part of the whole night was the birthday song. She got SO excited when we started, and she totally sang her own version along with us.

Mommy Maddux Date

That girl.

I can't get enough of her.

When she was four, we would have "Mommy Maddux Monday" each week. Eli was in first grade and she was in preschool the other days of the week. But on Monday? It was just Maddux and Mommy and we would go to the park or hiking or for a walk or to lunch...just hang out.

We don't get that very often anymore, but on occasion, we will steal a few moments away together. This week I had my first senior portrait shoot and I wanted a test subject to practice on a few days before. Maddux was willing.

And very able.

I also let her bring my back-up camera and shoot for herself.

I could have taken photos of her taking photos all night.

 

After we finished, we had a quick dinner and I just let her talk. 

Oh the things this girl has to say....

Therapy Wrap-Up

What a week! We just finished school last week, followed by an extended weekend at the beach less than 24 hours later, only to return to a half week full of more than a regular week should hold!

This week was Ruby's last visits through Babies Can't Wait. As she ages out of that system next week, we had our final sessions with her speech therapist and physical therapist. Without intention, those sessions were back-to-back on the same day. This was bittersweet for us as Ruby has been with Sherri (her physical therapist) since the very beginning. Her first session took place when she was 5 weeks old! Sherri taught me so much throughout the last three years...the way she attacked PT with Ruby helped me shape how I handle all of her therapy, and I will forever be grateful to her for that. No breaks for our girl as she doesn't need them, and she's capable of so much if you just push her. Sherri taught me how to view every activity in Ruby's day as an opportunity for PT, and to this day Ruby is complimented on her form.

Paula came along later in the game, but she definitely gave us some great speech time. The main thing both Ruby and I took away from her is slowing everything down (Ruby tends to get very excited and amped up when playing new games in therapy). We will miss these women!

The day after we said good-bye to BCW, we had an appointment with one of the private therapists we love, Vivian. We are hoping to move to a more consistent, more often schedule with her, as she holds Ruby to her potential. She does for Ruby's speech what Sherri did for her PT skills. Our sessions with her are always full full full, and we are left with plenty of good stuff to work on. This visit found her happy with what she was hearing from Ruby. That doesn't mean she let her off the hook or that Ruby didn't have anything she needed to work on, but it is becoming obvious to everyone that Ruby's words are coming!

Beach Babies

We snuck away to the beach for an extended weekend by waking the kids up their first morning of summer and telling them to 'pack a bag'. It was so so so fun to surprise the kids with the trip...Eli said, "Wait, cuz my head is still not awake yet...are you serious?"

We arrived just after lunch on Thursday and headed straight to the ocean. Ruby LOVED the sand. She kept scooping up a shovel full and walking somewhere to dump it only to repeat the process. And she walked up to the waves on her own several times. When they rushed in a little too quickly or roughly for her, she would wave her finger at the water and say, "NO!"

Speaking of that, Ruby is the queen of 'NO' right now. No matter what you say or do, she will yell at you tell you "NO!"

The first morning we woke up, the kids were set for the beach again. Ruby was at least as enthusiastic, but even more independent (cue more 'NO!') Eli and Maddux had so much fun using the Beater Board (a smaller, foam surf board) and the boogie board. They spent the entire morning in the water.

After lunch, we put Ruby down for a nap and the big kids and I rode our bikes to play shuffle board. They love the 'hidden' court and the shade it provides during nap time.

Once we got Ruby up, we took an extended bike ride ending at the food trucks. Low and behold, we met friends there! (This was planned also, but the kids didn't know it.) We ate dinner and hung out on the green until a family movie started. Lehr even took the kids to get ice cream while we waited. (Best dad ever) Ruby was a really good sport and stayed up until about 9PM, fairly interested in the movie. At that point, I rode the two of us home because she was getting a little antsy. Before that, she was find, but she did like to play musical laps.

The following morning we loaded the car up (very unusual for us at the beach) and drove to the Marshall's condo so we could spend the morning with them. THe weather was overcast and a little chilly, surprisingly. Eli and Drew took turns on the boards and occupied themselves with getting pummeled by waves. Maddux and Davis and Emmaline built sand castles, and Ruby did a bunch of sitting. We drove home for lunch and then met them at the food trucks much later for dinner again. On this particular evening there was a live band on the green, so again we stayed and enjoyed the night.

Maddux and Davis and Emmaline also got very into collecting sea shells. They spent hours at the edge of the water, waiting for waves to break and then go back out so they could find pieces of sand dollars and other cool shells.  

The next two days were spent at the beach and pool and on our bikes. Davis and Maddux built a whole village of drip castles one day, spending almost the entire morning under an umbrella. Lehr rented a yolo board and took turns with each kid (except Ruby) on it out past the waves. The five of us had a really nice traditional last dinner of pizza on beach at sunset. One day during Ruby's nap, Lehr took Eli and Maddux around to each of the Watercolor pools (five?), riding their bikes inbetween them all. We found more music at sunset in a park one night, complete with strangers giving the kids their beach ball to play with. We may have indulged in more ice cream. We definitely got more than our share of sun and sand!

The day before we left, Lehr took Ruby to the park outside of our condo while the big kids and I got ready for dinner. He introduced her to the (for looks, not play) fountain, and she promptly went in. It might have been her favorite part of the trip.

We left after lunch one afternoon, making it home just before midnight. I had to drag the kids out of bed for their 9:45 swim practice the next morning, but they agreed that it was worth it.

Needed Time Away

To say our extended beach weekend was a welcomed change of pace would be a huge understatement. It was much, much needed time.

Time away from running from one therapy to another. Time away from driving frantically between doctor's office waiting rooms. Time away from worrying that Ruby is not meeting milestones fast enough. Time away from trying to wrap our heads around what her IEP notes really mean about the school system and her ability to succeed there. Time away from over analyzing evaluation reports. Time away from watching her with kids her age and unintentionally comparing her, and mindfully taking note of the areas she falls short. Time away from the daily catch-up game.

It was perfectly timed, perfectly given time away from all of that.

It was also much needed time watching Ruby be Ruby. Time watching everyone, EVERYONE, dote on her. Time watching her figure everything out on her own. Time watching her be fiercely independent because she CAN do it (anything and everything) by herself. Time watching person after person do a double take when they see her (not because of her Down syndrome or chemo hair, but because of Ruby), followed by a huge smile as they make eye contact and sincerely tell me, "She's adorable!" or "She's beautiful!" Time watching her play so well on the beach with anyone who occupied her space. Time watching her eat ice cream and watch outdoor movies in an environment that didn't magnify anything 'atypical' about her. Time watching her take in the sand, the wind, the waves, the sun, the noise...all in stride and with joy. Time watching her play on the green each night with kids of all ages, running around and doing somersaults on the grass as the sun went down. Time watching her in all of her glory without asterisk or exception.

It was perfectly timed, perfectly given time watching all of that.

IEP

We had our first IEP (Individualized Education Plan) for Ruby today. It's been a season leading up to this, full of evaluations by the county, transfer of services from the county through Babies Can't Wait to the school system, etc. Today's meeting was planned to do two things: determine eligibility and make a plan (an IEP) for the service(s) for which she is eligible to receive.

When Ruby had her evaluation about a month ago, I knew she did well. The evaluation occurred at 9AM, which is a great time for most kids because they are well rested and ready to go, and it took place in a new environment with new toys. Pretty much the perfect scenario to get the best possible results from my girl. So when I got her report last week, it didn't shock me to see high marks on there. I didn't expect them to be as high as they were, but I also don't really know anything about this process since we are just starting out.

The meeting today started out with determining eligibility. There are several types of services available to kids: special needs preschool, individual or group speech therapy, and community based support were the three we were anticipating. I thought we might have to negotiate how much special needs preschool Ruby would attend next year given our push for her to be involved in her typical preschool classroom three days/week. However, as they interpreted her scores for us, it became evident that she scored *too* high for most of the services. She did not qualify for PT, as we expected. She did not qualify for OT, which we knew was a possibility. (I asked several times if she would be able to qualify next year, even if she didn't this year and the answer was 'yes'. I fully expect that her delay will be more evident next year.) The only area she qualified for was speech, and that is only for small group speech therapy, not the full-on preschool. (That also means she cannot receive the community based support, which allows someone to come to her typical preschool and observe/help/support from time to time.)

Here's the thing: Ruby's scores fell in a small little gray area between the 'norm' and qualifying. That sounds like great news because we didn't know she was capable of performing at that level. However, if what you want is to receive those services, this is bad news. (Especially since a blood test on Ruby should be enough to qualify her based on her extra chromosome. Her delays will not be remedied with a little therapy or time to 'catch up'.) Her scores only qualify her for 1 hour of speech each week. Sounds crazy to anyone walking this road with us.

I am choosing joy in this moment. I am choosing to see this as a reflection of Ruby's potential. I am choosing to see this as the result of her hours and hours of hard work. I am choosing to see this as a byproduct of Ruby's motivation and desire to learn.

I went into this meeting prepared to fight for my girl. To fight for inclusion. To fight for her to be able to maintain as much exposure to typical peers as possible. Instead I got to hold on to my fight for another day. Should we see that she's not benefiting from the current plan (which doesn't start until the fall), we will call a meeting to reassess. Should we see that she needs more (OT, behavioral) therapy and we think the school can be a viable resource, we will call a meeting to reassess. Should we see that this particular speech therapy is really helping and she needs MORE, we will call a meeting to reassess. It just didn't seem to be the right move to fight hard for more services (that we really weren't sure about anyway) before we'd had a chance to test drive them to see if they were worth fighting for.

Sportsmanship

Eli.

That boy.

I love him with ever fiber of my being. And I know who is he. And who he is not.

Eli is a sports enthusiast. Give him a ball and a game and he will spend his day playing and practicing. Especially when it comes to baseball. We gave him a tee when he turned two, and he went to his first baseball evaluation the week he turned four. And even in those early EARLY baseball years, he would last through a 45 minute pre-game practice, an hour+ game, and still come home and want to go outside to hit and throw. His love for baseball has never been questioned.

But Eli is not the kid who will be team captain. His gift is not building other players up. His gift is not congratulating the other team, regardless of the outcome. And while Lehr and I struggle with that and try to 'grow' him in that area, it's just not his forte.

Today Eli was recognized by his team for a sportsmanship award. Each team in the league votes for a member of their team to receive this award (the players, not the coaches). We had some heads' up that Eli would be the recipient because a few of his teammates insisted he would win as we gathered for the practice following the vote. On the drive home that night, Eli and I talked about that and we had one of our most mature conversations to date.

Eli said he couldn't understand why the kids voted for him and thought he would receive enough votes for it. We discussed how many times, something that requires a 'vote' during your youth ends up being less about the actual award and more about people wanting to recognize you in general, so he should take it as a compliment that his team likes him enough to vote for him. He told me that he understood that, but he wasn't the greatest sportsman.

And I agreed.

I was completely honest with him and told him that while he is a very driven and motivated player who loves the game, he is more of the silent cheerer. And he is not always positive when things don't go the way he hoped on the field. Then I pointed to two other boys on the team who showed the 'sportsman' qualities 100% of the time. Eli agreed. He thought they should be voted in, not him. He said, "Not to put myself down, but they are WAY better at cheering on other people than I am." I wish I had recorded the conversation somehow, because it went on and on and was full of little gems.

It was a really cool conversation that showed some self-awareness that I didn't think was present. And there was an attitude of humility in our ten minute drive home that I have almost never seen with Eli. Big time maturity...made mama proud.

And on another positive note, throughout the game that immediately followed the recognition, I heard Eli speak up more in the dugout than I've ever heard him before. Oh so good....

Sick

Oye...It's crazy. Ruby has been consistently sicker this week than when she was going through chemo. How is that possible? (Actually, parents of kids who have fought cancer would not be surprised.)

Ruby has been on and off congested a lot this spring, due to pollen/allergies. At one point they worried she would develop an ear infection, so they gave her antibiotics (April). This week, she ran two random fevers that went away with one dose of Tylenol, not to return until the following day at fever o'clock (that's 5PM). After two days in a row of that, coupled with her sleeping in (unlike Ruby), I took her to her pediatrician's office Thursday morning. They confirmed that her lungs sounded fine, and her ears were clear, but with the blood tinged nose-mucus and puffy eyes, they suspected a sinus infection.

So now she's been on an antibiotic for exactly 48 hours, but it's not helping yet. Poor girl had a fever again Thursday night that took a long time to break, and she had the crazy chills/shivers at one point. Friday morning she slept in (again..third day in a row), and her poor eyes were puffy from tearing up all night. The good news is, they aren't pink-eye looking (infected), and she doesn't appear to be getting worse.

I did call the pediatrician again yesterday to inquire if we should come back in. They assured me that she needed a few days of antibiotics under her belt to see an improvement. If she is still not turning around by Monday, come in. Her energy is down, but she has spurts through the day where she acts fine, plays like her usual self, and (until yesterday around noon), ate at least as well as usual.

This feels all kinds of crazy...Ruby's already been sick a few times since her short time of being in remission. Her immune system numbers have always registered in the 'good' range since we were released, but during this allergy season, she's had to be on an antibiotic twice. My NOT-medically-educated self tells me that the overload of mucus from pollen season is overloading her system with yuck, helping things to develop into infections. That doesn't help us as we watch our poor girl with puffy eyes so miserable. And here's the thing, even though she sailed through chemo, and even though she is amazingly strong, what she's been through has messed  with her immune system and it's ability to react efficiently and 'normally'. So for our girl, I guess it's still not over.