Tuesday, May 24, 2016


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.

Sunday, May 22, 2016


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....

Saturday, May 21, 2016


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.

Saturday, May 07, 2016

Ruby Updates

Speech Therapy
Ruby is doing better in speech therapy. She is performing the 'tongue to the top of her mouth' task we ask her to more consistently. (Not to be confused with the 'tongue behind the teeth' task we are really after.) She still isn't able to keep it up there when she makes the 't' sound though, and we've been banging our heads against the wall working on that for over a month. Thankfully, her myofunctional specialist gave us a new assignment this week: L. So instead of the 't' sound, we are working on the 'l' sound. Much better because Ruby is able to make that sound with her tongue securely in her mouth. We are hoping to hit the 'l' hard and eventually transition it to the 't' through words that contain both (lot, light, etc.)

Ruby really does know her colors, but if you hit her when she's not in the mood, she will not demonstrate that skill for you. It has happened on more than one occasion when she and I have been in an evaluation, or with a teacher or therapist and they have asked her to point to or pick up the item of a certain color, and Ruby will not correctly comply. However, I bought a new therapy tool game for the two of us to work on this week and on her first try, she nailed it. Not just with two basic colors, but with six colors: red, blue, orange, purple, yellow, and green. And then she totally matched colors, and even shades of color within the game. Smart cookie.

I realized the other day just how many letters Ruby does recognize. While sitting on the potty for no real reason hanging out, I pulled out a handful of random foam letters and tested her. She's on it.

Occupational Therapy
I picked up small tongs this week for Ruby to work with in an effort to improve her fine motor skills. I would still like to see her use her pincer more often than not (she still 'rakes' to pick up cheerios or nuts on her high chair tray when she gets tired). I picked up a pack of cotton puffs for her to practice picking up; she's a pro. I need to find something harder for her to pick up, I guess.

Physical Therapy
We don't ask Ruby's PT to come by very often anymore. Ruby still has some delays in that area, but much less than any other, so it's not our first priority right now. Ruby is close to running (coming down the driveway or our street, gravity helps her and she gets some serious 'run stride' going). She isn't jumping yet, but we are working on a few strategies to try and encourage that.
She loves the stairs. Ruby will NOT let anyone help her with stairs unless she is certain she can't do it herself. This adds much time to my day, but it is worth it to see her trying to be so independent. Her other favorite thing to do is ride one of her bikes down the driveway. As soon as the garage door opens each day, Ruby hustles over to a bike and pulls it outside. She rolls/drags it to whatever height on the driveway she desires and then sits down. Most of the time she needs to use her legs to propel herself forward. This helps her strengthen her hamstrings, so I love it.
You know what else I love? How 'typical' she looks when she's motoring around so fearlessly on those bikes.

Sunday, May 01, 2016

Date Night

It's crazy for me to think that we seemed to be more consistent with individual date nights with the kids while Ruby was in the hospital. Nothing like no extra time on your hands to make you more intentional!
Last week Maddux and I grabbed dinner one night, just the two of us. As usual, it was awesome because my girl talked and talked and talked. While I find my dates with Eli allow more conversation where I end up pouring into him (not sure how much he hears) without interruptions, with Maddux it is almost entirely the opposite. If you let that girl go, she will tell you anything and everything.

And I love it.

During this date night some of the random topics that came up were:
  • Dating (She said, "No till I'm 18, mom. Cuz dating is to get married and even 18 is too young for that.)
  • Kissing ("If I do that when I'm in middle school, then I won't have saved my kisses for 'the one'.")
  • Boys as friends and how dating can mess that up ("I don't understand why girls try to hug boys when they catch them during 'tag'...")
  • Maddux told me about a friend whose sister had a baby at 19 ("That must be hard because you're not even old enough to be a mommy yet and you probably don't have a husband when you're 19.") She then filled me in on how Mary was only 12 when she had Jesus and 'That's Crazy!'.
It's amazing what she'll share with me when I just sit back and let her without trying to control things. It's also so so so cool to me that she has heard some of the things I've tried to pour into her about boys and dating and marriage and purity. That was the biggest shocker for me that night: the things she told me without any prompting at all.