Washington DC Trip

For Eli's 10th birthday, Lehr and I gave him a weekend trip to DC. Instead of it being just Eli and Mommy though, we opted for the whole family to go, since we know the next six months will be a bit up in the air. Eli was thrilled, and Maddux was pretty excited too.

 

We landed in DC at 9AM Friday and left at 4PM Sunday, so the trip was short, but we managed to fit in as much as possible in that time. Lehr got us a hotel close enough to see the Washington Monument out of the window, and we walked and took the Metro everywhere. 

The first day we probably walked seven miles...we went to the Spy Museum, the Washington Monument, the White House area, and we walked the whole thing: no Metro. Ruby napped when she could in the stroller. After we grabbed dinner, the girls and I settled in for the night and Lehr and Eli went to rent City Bikes and see some monuments. This was very cool for our boy. He got to see Lincoln that night, and he read the Gettysburg Address.

The next morning we went to Ford Theater which was by far my favorite. We then walked and Metro-ed the rest of the day to hit a tour of the Capital and the Museum of Natural History. After dinner we followed the same protocol (after a quick dip in the pool), and Eli and Lehr hit the Jefferson Memorial.

The last day only left time for one thing, so Eli opted for the Air & Space Museum. The kids loved it! About halfway through, I took Ruby outside for a walk so she could nap, and I hopped into an art museum for a minute or two. There are so many amazing things to see and do in DC!

Eli was adamant about recording everything...he kept his journal with him and wrote a synopsis and/or review of everything we did. Love that boy!

The plane rides were uneventful. Ruby did fairly well; Lehr kept her quite entertained. On the way there, the pilot pulled Eli and Maddux into the cockpit as soon as they boarded the plane....so cool! And on the way home, one of the flight attendants gave me a goodie bag of food - she was tipped off from a friend of mine (who also works for Delta) that we would be on the flight. Amazing!

A Pause

I am still in a good place reagarding Ruby's diagnosis. Honest. But this post is about the pause that I need to take to be sad for a minute before continuing on the journey that God is walking us through. This is not the feel good post...this is the poor me post. The one that complains and struggles and can't stop the tears. This is the post about school.

When Ruby was first diagnosed with Leukemia, I realized that her treatment would interfere with school. It choked me up, but it was far enough away that I could still bury it. This week it has come out of hiding and it is a full reality. Today was Ruby's last day at school until who knows when. She could go back in a month, or she could go back after the holidays, or she could not return at all this year. Between the hospital stays and compromised immunity and not wanting to disrupt the class with her sudden return(s) randomly throughout the year, everything is up in the air.

School is a big deal for me. When Ruby was born we quickly learned about the delays and what we could likely expect from her regarding milestones. The gap(s) between her development and that of other children her age grows with time. When she was less than six months old, it wasn't noticeable, but by her first birthday it was starting to show. So we worked with her on everything we could to get her to keep that gap at a minimum. And because Ruby is a rockstar, she has exceeded expectations: she walked earlier than most kids like her do, she's very interested in learning new things, she's curious and social and easy to work with. So when I started looking for schools, I knew all I had to do was find one that would give her a chance because she would rise to their level.

Lots of phone calls and visits and emails exchanged with one school in particular last fall and spring before we finally committed. Then we met with the specific teachers twice before the school year started, to allow them to meet Ruby and ask any questions they had. I was heartbroken when Ruby then had to miss the first day, but she came back on the second day with a spring in her step and wowed everyone. The loved her and told me every chance they got how great she was doing.

Ruby has been to school a total of four times, but that girl loves it. She lights up when I say the word 'school' and she smiles when she sees her school bag. She waddles down the hall to her classroom, holding my hand and pointing to all of the cool things on the wall. Then when she gets there, she finds her picture and points to it before pointing to those of her friends. And to top it off, she says hi (sometimes) to her teacher and then walks confidently into the room without looking back. Ruby is learning routines and manners and social awareness and all of the things little people her age should be learning. And she loves it.

So when I think about how much I hate cancer, it's not because of the scary factor or the chemo side affects (which I'm sure I will hate soon enough). Right now my hatred of cancer is due to it robbing Ruby of experiencing this awesome class she was given to thrive in. Right now I'm furious with cancer because it is stealing from her the chance continue her start with other kids who, while not delayed like her, are starting something totally new also. Right now I'm mad at cancer because it is taking away a time where she was able to do something that had nothing to do with Down syndrome. Right now I'm grieving the window of opportunity we had by starting with full inclusion at a time when she was the same age as other typical kids, still operating at a similar level. Right now I can't complete a sentence about school without my voice cracking.

I just sat down with Ruby's teachers and told them the news. I was shaking the whole time, trying to hold back the tears. I succeeded until the very end when they told me how great she was doing in the class and how proud I would be of how well she's learning the routines. The minute they started talking about her in that environment, doing what I prayed she would be able to do for so long, I couldn't hold back the tears. Her teachers were amazing, ARE amazing, and I hope she returns to them soon.

Locker Room

We just had our final appointment with the Leukemia team before chemo starts. It very much felt like the last minute review of the plays before a big game. Or rather a whole season. The good news is, our Team Captain is the star quarterback with JC on his jersey.

The short version of our pregame talk in the locker room:

• Kids under age 4 with Ruby’s type of Leukemia are prescribed six cycles of chemo. Each cycle lasts 28 days, so ideally, we are done in six months. However, things that can stall her restarting every 28 days are infection, low blood counts, fever…. So there is a high probability of delay in this schedule at some point.
• The plan right now is for the chemo to start next Wednesday, but we are waiting on confirmation.
• Ruby will go in the day before chemo starts to receive platelets via IV and then come home. The morning of her chemo, she will be admitted to the hospital. She will be put under and then have surgery to place her port (in her chest), where she will receive her intravenous chemo throughout her entire treatment. While she is under they will do a lumbar puncture to administer chemo to that area and gather a sample of spinal fluid. Later that day they will start her first round of chemo which will go in through her port for 96 hours. She will also take chemo orally 2x/day for the first 4 days.
• The first round of chemo is monitored incredibly close for everything from allergic reactions to adequate tolerance to desired effectiveness. This monitoring includes many blood tests and another bone marrow biopsy, as well as many machines and nurses keeping very close watch over her.
• (Here's the doozy) Ruby will stay in the hospital for at least three weeks for the first round of chemo. She will have many other overnight stays, likely 2-5 days each, throughout her full treatment, but hopefully this will be the only long one.

So.... Go Team Ruby! Fight! Fight! Fight! We have the winning team, the best cheering section; we just need to stick to the plan and listen to the wise words of our Team Captain.

Staying Afloat

I don't want to focus on chemo or sickness or hospitals, so this is what I'm focusing on these days: swimming. Since swimming is not my forte - in fact, I often say that I never learned how to properly swim - it seems to parallel the journey we're on since I've never learned how to parent a child with leukemia.

If you've ever seen a 5-year old swim in their first swim meet, you've probably seen more splashing than forward movement. This is likely what I look like when I swim in open water; I'm way more worried about not sinking than propelling my body forward.

So while it's obvious that my body knows nothing about swimming, I do understand how it is supposed to work. I know that my body will float if I calm myself. I know that stretching my body out will allow my arms to pull my body through the water. I know that thrashing and kicking actually slows me down and exhausts me at the same time. I know that if I just use my arms and legs in the way a swim coach would guide me to, I will get to my destination safely and efficiently.

So I'm going to try to continue swimming. I feel like so far Lehr and I have been in the shallow end of the pool with God right next to us, holding us up if we dipped below the surface. But we are approaching the time when we will be swimming in deeper waters, without floaties. God will still be with us, guiding us with His words, but we will have to rely more on what He has taught us because so much else will be clouding our confidence. We will have to resist flailing our arms, we will have to resist fighting against the reality of the 'water', we will have to calm ourselves and allow God to lead us through.

Triathlon

Eli wanted to do a triathlon again this year. This would make #3: last year we missed it for some other event, but he was adamant about getting back to it. (Maddux opted out.) He even trained a few times, doing a full 100m swim, 2 mile bike and 1 mile run two weeks ago. (All by his own motivation.)

This morning's event was predicted to be a wet one with thunderstorms likely throughout the entire morning. When we arrived at 6AM, the skies were clear and they remained that way until Eli transitioned to the pool to start his race around 8:30. Sprinkles started during his bike and then drops fell through his run. The real fun started just as he crossed the finish line: thunder, lightning and hard rain poured on us for the next 30-40 minutes as we tried to find cover, then get his bike and gear out of the transition area before walking to our car across the highway. All of the while, Eli was smiling; he even said, "Hey, it's not like we can get any wetter!"

Eli did really well, passing several kids on the swim, keeping up with road bikes (he has a mountain bike) and passing several on the bike portion, and running just off of his fast pace for the final leg of the race. He didn't beat his best friend, but he definitely had a good race and he's already asking when his age qualifies him for longer distances.

Double Digits

Ten whole years. A decade. That's how long you've been giving us memories, Eli.

It feels like a whole lifetime ago, the years before you were born... They have been filled with fun and baseball and drums and wild hair and books and soccer and music and laughter and all sports and history and smiles. Mostly smiles. That is what everyone knows about you: you always have the biggest smile on your face!

This last year, your tenth year, has been another great one: you recently told me it was your best one yet! So I thought maybe we'd make a Top Ten List of the best parts of the last year.

1. Soccer: You played two more seasons, sharpening your skills and becoming a better aggressor on the field. 

 

2. History: You read anything about the Civil War you can get your hands on and you love listening to podcasts about all areas of history. At the end of the school year last year, you won a poster contest for your poster about Benjamin Franklin, which sent your poster to the state level. You went back to the Atlanta History Center for a camp this summer, and you've told me a few times that you may want to be a historian one day. 

3. Ruby: You are a great big brother to her, always thinking about her, playing with her, and supporting her with your Team Ruby shirt at school. 

4. Winshape: You and Drew went back to Winshape camp this summer and you enjoyed five days and nights away from home; can't believe how grown up you are.

5. Golf: As expected, once the Masters rolled around, your interest in golf was rekindled and you watched as much as we'd allow. You even created a golf course in our  front and back yard. You, Grandpa Jim, and some of your friends played it for over a week.

6. Running: You ran your first official 5K this year: you, Ruby and I completed the Gigi's 5K on World Down Syndrome Day. You were steady on the course and you ran the entire thing, even through some really tough hills! 

 

7. Maturity: So many ways you have shown your maturity this year, Eli. You bring home assignments from school and complete them all on your own with minimal help from us (your safety unit, your Ben Franklin poster, etc.). Your interest in your sister, Ruby, and her cause is showing in your interaction with others. You stood up in front of your entire class and talked about her and Down syndrome and then asked them all to participate in WDSD this year. Amazing. 

 

8. Swim: You continue to love the summer swim season. Your favorite event is the one all other kids dread, and you smile through every practice and swim meet. 

 

9. Boundaries: You've earned some freedom with your responsibility in the areas of where you can go without us and how long you can stay. One freedom you seem to love is the ability to ride your (bigger) bike all around the neighborhood, checking in via walkie talkie every once in a while. 

10. Innocence: Sorry, but even as grown up as you seem at times, you are still amazingly innocent when it comes to so many things. (In a very good way!) I love that you still play with legos, and that I find you in your room setting up army men for hours. It warms my heart when you ask for family movie night or a date with mom or dad. From your movie selections to the way you play with your sisters and friends, you are still an amazing kid, and I'm so grateful for that.

The Calm Before The Storm

Just four days after Ruby's bone marrow biopsy the first level results came back, confirming the presence of Leukemia in her bone marrow. Even though we expected this, getting these results was a necessary step in the process of confirming her diagnosis.

Speaking of diagnosis, her official one is AML/M7 (Acute Megakaryoblastic Leukemia/M7 Acute Myeloid Leukemia). I can go into a Google explanation for you, but since I only understand half of what I've read, I'll let you do your own research and I'll fill you in after we've had the sit down with the doctor to go over everything in detail. We will meet with Ruby’s 'team’ of doctors next week to go over all questions/concerns we have and discuss the plan for treatment. Assuming we have no new developments between now and then, she will start chemo in two weeks and she is estimated to undergo this treatment for six months.

Good News:

• God is good. Again and again…can’t say it enough. 
• Ruby is still well: she's showing no physical symptoms (fever, bleeding, paleness, lethargy).
• AML is the most common type of Leukemia for kids with Down syndrome. (That means this team of doctors has a lot of experience with it.)
• Ruby will have a low-dose chemo treatment plan, as that has proven to be the most effective with this type of Leukemia. 
• Ruby’s blood work, outside of her low platelets, looks good. Even the level of Leukemia in her marrow is low enough to allow for the doctors to allow a little more time for full test results to come back before starting treatment.
  
• Kids, especially with Down syndrome, tend to respond very well to this treatment and have a high rate of remission.

As crazy as it seems (at least to me), Lehr and I have remained calm throughout this process, including the news yesterday. Maybe God is allowing us to save our strength and worry for when we will need it, as the diagnosis is only the beginning of this journey. Maybe He has used Ruby's first diagnosis to grow us to handle this type of thing in stride. Or maybe we are just trusting God because it's all we can do.

First Day

Ruby started school this morning.

Cannot tell you how cool it is to see that sentence in print!

Starting late last fall I researched and read up on local preschool programs that might take Ruby once she turned two years old. The one I landed on is inexperienced in children with T21, but they were/are very open to including her in their regular classroom. I met with the director last winter, then Ruby and I met with her early in the spring before signing on for a 2 day/week program this fall.

Two weeks ago Ruby and I met with her teachers to answer any questions and let them meet Ruby, then last week we attended the formal Meet-n-Greet with the other kids. Last week's official first day was a no-go for Ruby due to pre-op appointments. But today, oh today, she went into a room with nine other kids (all typical as far as I know) and rocked it. I helped her hang up her bag outside of the classroom, right after we put her cup and diaper in the appropriate bins. Then she walked into the room all by herself (teacher preferred method). It was all I could do to not stay and peek in all morning, but I knew she would be fine. Three short hours later I came back and walked down the hall to find one of the teachers at the door, releasing kids as their parents approached. Before I knew what was happening, Ruby walked right over to me. The teacher said she did great.

Could not be more proud. Could not be more excited. Could not be more hopeful for what this means for Ruby and inclusion in general.

So What's Up?

So here we are again. Another (almost) diagnosis, but two years more experienced and (hopefully) wiser.

Each year Ruby has a full panel of blood work done. It's one of the many things that is just standard protocol for kids with Down syndrome to help detect anything from celiac disease to ITP (don't even ask me to define it, let alone spell it). After Ruby's tests earlier this summer, one of her nurses called us to schedule a re-test. 

Fast forward to the day of the retest: the nurse came in and told me they needed to run the platelet count again, so she pricked Ruby's finger to draw some blood. Ruby flinched only slightly and then we waited patiently while the blood took a while to pull into the small vile. She put a quick band-aid on Ruby's finger and told me that the test would only take about ten minutes, so she'd be right back with the results. When the nurse walked back in, it was obvious that she never hit it big at Vegas. She quickly told me that our Doctor was not in yet, but that she'd give me a call when she arrived to give me the results. Ruby and I walked out (waving like we were on the red carpet the whole way...they treat her like a celebrity there), and drove to speech therapy.

That drive is about 40 minutes long. Enough time for me to float around in my head a little bit, especially because Ruby was busy reading books. My 'spidey sense', as Lehr calls it, was already honed in on Leukemia. We've had a full CBC and other blood work run twice before for Ruby, but everything has always come back clean. However, one of the things that I've been trained to worry about with Ruby is childhood Leukemia, so pair that with the low platelet count and the wheels were already starting to turn for me. I honestly put it out of my mind during speech; I didn't even bring my phone into the office with me. But when we returned to the car, I was greeted with a voice mail from our pediatrician saying we should expect a call from a hematologist to schedule an appointment.

This is when it became a reality for me. This wasn't my overprotective mind running away with some random symptom....we were going to see a hematologist and oncologist.

The crazy thing is, the very first emotion that washed over me was gratitude. Immense and overwhelming gratitude. For Ruby, for the last two years, for her first steps, for her laugh, for living in Atlanta with doctors that help me remember how to be proactive, for her relationship with her siblings, for her work ethic, for her crooked smile, for the many hours I've been able to spend doing therapy with her, for her joy touching everyone we know. It wasn't a bittersweet gratitude, or a weird preemptive celebration of a life lost....it was pure gratitude just because. I know without a doubt that it was not because I am a strong person or someone who always finds the positive in things either; that was the Holy Spirit in that moment putting blinders on me and pointing me directly at what I should focus on.

There have been tears though, even some within an hour of that reality, but not many. Not nearly as many as I had in the first 48 after Ruby was born. That's another gift Ruby has given me: the ability to process things quickly and get to the 'now what' stage quickly. It's like she has taught us that things are not always as they seem, but even when they get hard (as we know they will), dance your way through it because it's coming regardless.

So where are we now.... We met with the hematologist (two, actually), and they took more blood. Then they ran a quick test AND did a smear to look at some of the actual cells under a microscope. We stayed at the office while they did that, so before we left, they could discuss the results with us. Ruby's platelet count and white blood cell counts were low still, and the doctor did see some concerning things in the actual cells. The next step was to send the blood to another expert to do another smear (that would be the fourth time Ruby's blood was looked at by at least four sets of medical professional eyes within a month). We received those results the next afternoon. The smear did, in fact, show Leukemia cells. Ruby will have a bone marrow biopsy next week to determine the architecture of the cells (?) and to get an official diagnosis and plan for treatment.

Where is the good news?

• Ruby is a rockstar who defies the odds. Duh. 
• She isn't sick at all...this is all coming about because of standard blood tests; she has shown no other symptoms so far. 
• While kids with T21 may be more likely to get leukemia, they also respond very well to treatment.
• The percentage of cells that Ruby has showing the leukemia is low. Not low enough to ignore, but still low.

Finally, the best news of all. God is good. I mean that wholeheartedly. Lehr and I have been very at peace through this whole thing. Even in my moments of weakness, I have never felt despair or like I was alone. My moments of weakness have come from the place of grieving my expectation. A mid-life issue of 'entitlement', if you will. ("But she's supposed to go to preschool this fall and skyrocket to the head of her class", "But I didn't have chemo on my schedule for September". "But this wasn't part of my plan").

God is walking us through this and I know He has great plans for this next stage.We sent this information out to our amazing friends, family, and prayer warriors and Lehr put it best:

We are all in a good place and know a few things. 1) God is good. No resentment, anger, or 'why us' here. 2) Ruby only knows one gear: and that's to kick ass and she plans to keep doing just that. Her words not mine. 

 

First Day of School

The kids love summer, but they love school as well. They didn't talk too much about it until our Meet-n-Greet last week. From that point on, Eli and Maddux have been very excited/anxious to return. Maddux was assigned the same teacher Eli had for 3rd Grade and Eli was placed with a teacher that I think will be a great fit for him.

Our first day at the bus stop picture has changed so much over the last few years, but this one is at the max: next year we will start to lose our elementary friends, starting with Eli.

Week of Eli

Maddux was at Winshape for five nights, so it gave me a lot of time for one-on-one that I wouldn't normally have with Eli. The week started with a really fun night: Eli joined me for my weekly photography group.

So. Much. Fun.

Eli and I grabbed a quick dinner right before at a restaurant that we rarely get to, but he loves. Then Eli, armed with my back-up camera, joined me and two other women as we perused the Marietta Square and took photos along the way. Eli really got into it and it was a great opportunity for me to work with him on some things that I never get to normally. At the same time, it was a great 'sticky faith' moment for Eli and one of the other women. We finished off the night with a quick ice cream cone.

Eli, Ruby and I spent much time at the pool also. We only had friends with us a few times, so it provided more family time. So cool. It was great to see him spend time with Ruby without Maddux in the mix too. She makes the BEST big sister, but that definitely doesn't allow for much chance for Eli to get in there.

Finally, the two kids and I went to Ruby's therapy group on Thursday. Eli has been to Gigi's before, but this may have been the first time he went with just me and Ruby. He did a great job, playing with Ruby and also interacting with a few of the other kids.

Overall, this week was a nice calm week. Maddux, in no way, is the reason for the chaos that often is our daily life with three kids, but Eli definitely responds in a great way when there are less people vying for my attention. It was nice to slow down for a week and notice the other side of him.

Winshape

Maddux was so disappointed when we realized she was not old enough to go to sleep away camp last year, so this week at Winshape has been a loooong time coming.

Before she went, we got to choose some activities for her to focus on while she was there. Of course there would be swimming and outdoor games and dance parties and bunk shenanigans, but in addition, Maddux chose to learn more about rock climbing, wet'n'wild fun and arts and crafts.

To say she had a good time is an understatement. We all drove up to Young Harris college campus to drop her off: Eli was all eyes, comparing the girls' camp to his camp. Before we left her, he and Ruby dressed up in some props with Maddux to take some pictures.

We brought Maddux up to her dorm room, which she shared with three other girls. We met her main leader, who stayed in the room adjoining Maddux's and another room with three or four girls. They shooed us out rather quickly so they could get the bonding started.

Each night she was gone, I checked the site for photos including Maddux. Every one told a story of fun and smiles. Her leader sent us a postcard raving about Maddux and her ability to be a caregiver to every girl in their group.

When we picked Maddux up at the end of the week, she and a few of the other girls were absolutely inseparable. Moms' numbers were exchanged, as some live in the Atlanta area, and hugs were given freely. I think Maddux has caught the camp bug!

Therapy Update

Ruby has NOT taken the summer off. Some weeks have even found this girl with four seperate therapy appointments (plus her work at home). She is a rockstar!

Physical Therapy:
We don't need this therapy as critically now that she's walking, but we are still working to strengthen Ruby's core with rotation exercises. (She will sit between my legs on the floor and I'll have toys on either side of her that she needs to transfer across her body, sometimes leaning, sometimes not.) We also strengthen her trunk and arms with monkey bar-like grabs and holds (using a broom stick). For the same reason, we have some soft weights that Ruby moves around the downstairs: from couch to couch, from floor to table. She really loves this! Finally, we are still working on her walking over obstacles (small ones like bumps or sidewalk cracks, She usually doesn't want to slow down to step over these things, but the good news about that is that she is learning how to deal with the uneven surface(s) without falling.

Speech:
Rock and roll. Some days she gives us oh-so many word approximations. Some are recognizable just to me, but many are recognized by others even without my presence. Ruby is working on and can mostly say: eat, more, I did it, mama, dada, eggs, book, yes, i love you (you'd have to really pay attention for that one), I want, please. She makes animal sounds for a cow, dog, pig, monkey.....and Daddy snoring.

Inclusion

Since having Ruby we've become much more aware of the importance of inclusion. The concept is not a new one, nor should it come as a surprise to anyone who thinks about it that kids - ALL kids - benefit from inclusion. When the word came up in our home recently, I tried to explain it to the older kids by using their milestones as an example. Eli walked a little later and he spoke on a somewhat typical timeline. But Maddux walked early, spoke more sooner, developed her motor skills faster, potty trained earlier...mostly because she had Eli, someone her size already walking and talking and climbing and feeding themselves.

And how does it benefit 'typical' kids to have Ruby in their class? I can only site the ways I've seen it affect my kids and others that are around Ruby:

• Ability to love - she lights up the room with smiles and hugs for everyone.
• Patience - seeing Ruby work so hard to accomplish something helps others around her slow down and give her (and themselves) time to succeed.
• Acceptance - once you connect with and see the world through someone else's eyes, you can't help but look at everyone differently.
• Celebration - working with Ruby on a task or milestone makes you root for her. Seeing her hard work, and then seeing it pay off makes you want to celebrate even the smallest of accomplishments. It has made my kids stop and take note of their own 'small' accomplishments at times when they otherwise would not have.

We have been hoping and praying for opportunities to have Ruby participate in full inclusion as long as it's still a mutually beneficial situation. While she's not always in her age-appropriate class at the YMCA, I take her to the childcare there when I go to the gym. And we found a preschool that is including her this fall in a class not tailored to her, but to the typical young 2-year old. Best of all, our church has always welcomed her with open arms into a class on Sunday mornings. The volunteers are always so happy to see her and they assure me that she fits right in with the rest of the kids. We could not be more grateful for our community...especially since they recognize that Ruby being in the class benefits the other kids and teachers at least as much as she receives benefits from them. They celebrate that she is part of creating Moments of Awesome.

Lemonade Sale

Maddux and our friend, Virginia, had the idea last year to have a neighborhood lemonade sale to raise funds for Team Ruby for the Buddy Walk. We supported their efforts, but never expected the success they had. This year we planned a little more, prepared a little more, and had a great turnout.

For months, the kids and I (emphasis on "I") have been making loom bracelets for the sale, trying to focus on more red and white ones (the kids say those are official Team Ruby colors). We made some cookies, mixed up a bunch of lemonade, and the girls made new signs for down the street and at our stand. I put out the info on Facebook for the week leading up to the sale, in an effort to bring in some extra traffic.

We only held the sale for two hours, but we brought in double the profit from last year! We were humbled by the amount of friends and family that traveled from all over Atlanta to come and support Ruby and the Buddy Walk. It was amazing to see the cars pull in and park....every time someone else showed up it was like a party. We wore our shirts, and some of our patrons wore theirs also. In addition to our far away supporters, we had a few people from the neighborhood stop by and ask about our cause. Very cool.

At the end of the day, we brought in $350 AND had a $200 donation to add to our efforts; over $500!

Overnight Weekend

Maddux is attending a 5-night overnight camp at Winshape this year which she is very excited about. As much as our family has enjoyed Winshape day and overnight camps though, they do come with a big price tag. We have been able to allow both kids to go for the last two years because each year we got a 50% discount for first timers. Next year, however, we are exploring other options for them. One of the camps we are interested in is North Georgia Christian Camp. Some of the girls that our kids have gotten to know well through church are on staff there, so it was a no-brainer to have Maddux test-drive it last weekend.

The camp is very bare-bones and affordable. Love. That. Maddux got to go swimming, kayaking, have a camp fire, sleep in a cabin...this camp has all of the things summer camp should contain. She said the counselor that slept in her cabin even had a guitar and played it until they fell asleep each night. And while she didn't use her own Bible much, she came back with some new worship songs and a new verse memorized.

Oh yeah, and of course Maddux had a great time, loved every second, and had no problems being away from us. (If you know her, you understand the 'of course'.) She started out on the top bunk, but moved to the bottom to help comfort a friend who was struggling a little each night. That's another bit of unshocking news to me. This girl loves large.

Away From Home

Eli went to Winshape overnight camp again this year. Last year he did the one-week (5 nights) camp, and he opted to not extend this year, which made me very happy. He and Drew both went the same week, just like last year. They were not in the same bunk, which wasn't a surprise, but they also were not in any of their track choices together. I think this may have made Eli nervous last year, but he was fine with it this time around.

When we dropped Eli off, he settled right in. What a difference a year makes! This year's camp was at a different location, so the boys stayed in dorms instead of cabins. Eli and three other boys shared a small room with bunkbeds, and they shared a bathroom space with four more boys. Their entire squad, Hydro, was on the same floor. This made for cool decorating in their squad colors. Their was also a carpet ball table on each floor for the boys to play in their downtime.

Throughout the five days he was away from us, Eli learned how to make a teepee fire, worshiped at sunset on a hill, learned a handful of new games involving a ball, met new friends, and had an overall awesome time again. He and his bunkmates won the Honor award for their squad because they kept their room the cleanest each day (What?!?!), and Eli was recognized for his squad in his sports track.

My favorite part about the day we went to pick Eli up was when we entered his hall and called his name, he turned around and he and Maddux ran to each other and hugged.

Week of Maddux

Here we are with Eli gone at overnight camp; just me and the girls all day everyday. I intentionally signed Eli and Maddux up for their overnight camps to not overlap so that I could get some one-on-one with each over the summer. It already feels like it flies by so fast, and when they are here, whether bickering or getting along, it can be hard to slow down and have those intentional moments.

So we did a lot of not-so-memorable stuff together that was fun: made bracelets, ran errands and got lunch, went to Gigi's. Those things were still full of good conversation and the such, but they were more run of the mill activities. The bigger events for us included going to see sunflowers, the girls going for a play date when I was at the dentist, only to be followed up by a long pool play date, meeting Daddy for a lunch date and King of Pops, and going to one of Maddux's favorite parks.

Last year I took Eli and Ruby to see the sunflowers while Maddux was at Art camp. It was awesome and Maddux definitely wanted to go, but the season was so short that we never made it back. I planned for us to go while Eli was at camp because it should have lined up with the beginning of the blooms. Unfortunately, we drove all of the way out there only to see no blooms. The good news was, there was a nice walking trail about a mile before the sunflowers, so I unloaded the girls there to walk around a bit before getting back in the car for the lengthy ride home. Maddux and Ruby walked along the bridge and I got some great pictures of my girls; a great day indeed.

 

The park and the pool had some great moments too, but no pictures. Mostly I tried my best to talk about what Maddux enjoys talking about (which is not easy for me as we are opposites in many ways). Lots of family game nights with her and Lehr after Ruby went to bed, and at least we snuggled on the couch and watched Nature shows.

Therapy Update

The days and weeks pass so quickly now that I forget to keep everyone in the loop. This girl is still tackling everything head-on, though she is definitely 'two', and will remind you of that (loudly) when she sees fit.

Physical Therapy:
Ruby is still walking everywhere. She can now walk up and down our sloped driveway without assistance. She doesn't always fall, but balance on an uneven terrain is still a challenge. She is building up her endurance too; I challenge her to walk up the hill on our street at least once/week. We use a push-toy, even though it doesn't offer much stability, just to help her feel like she has a purpose in the walk. She's getting higher and higher up the hill every time before she runs out of steam.

Ruby is walking backwards all of the time too. I remember that was one of the things to keep looking ahead to, but Ruby decided to teach herself how to do it. She's also dancing. This mostly consists of her waving her hands and 'stomping' her feet, but it's cute as can be. She'll hear the music and immediately make eye contact with you and start shimmying.

Finally, Ruby is fearless and a climber. She will climb into or over anything she can. I have to imagine this is good for her, so I try to give her opportunities for it as much as possible.


Speech:
Ruby is making some real progress in this area. A while ago she mastered her "ooooh" sound, and then her "oooo" sound. Then she started giving us different faces, specifically mouth shapes. She will give me five faces: funny, sad, happy, scared and mad. These little exercises are great for speech!

Ruby is currently 'moo'ing like a cow and 'woo-woo'ing like a dog and 'oo-ooo'ing like a monkey. Her current words are:

• yes (ess or yesh)
• Hi
• Bye-bye (bah bah)
• mama
• dada
• Maddux ('icksss')
• eat
• more (still a little bit 'mohh', but there is more 'r' most of the time)
• I love you (work in progress: 'eyeee lah oooo')
• want ('oo-waah' - this only comes when I prompt her)

Ruby still sees three different speech therapists (in addition to PT every other week and Gigi's a few times each month): one weekly, one every other week and one every 4-6 weeks. She is a busy busy girl! It is paying off though… She now will repeat most things when I ask her to, to the best of her ability.

ER x 2

So Ruby decided to visit the ER twice in less than two weeks. Not really bragging rights, if you ask me!

The first visit was due to a small fall in the house. Ruby has always tried to be faster on her feet than her balance with allow for which means she needs to put her hands down to steady herself from time to time. (read: she falls, but catches herself with her hands instead of going all of the way down.) That's what happened while I was at a photo shoot one Saturday morning, but on the way down, her mouth hit the safety gate and her tooth sliced a deep gash in her upper lip. I walked in to Maddux hysterical on the floor, cleaning up a pool of blood and Eli trying to explain to Lehr exactly what happened.

Ruby stopped crying after a little mouth clean, but we still took her to the ER. Even though we knew that mouth injuries heal very fast, we didn't want to take the chance of something healing incorrectly and interfering with all of the hard work she's putting in at speech.

Lehr took both girls while Eli and I stayed home; since Ruby was not in need of comforting, we figured the less commotion at the hospital the better. In the end, Lehr paid for a very expensive Children's Healthcare of Atlanta Popsicle and got sent home.

Ruby's second visit happened just before the fireworks on Independence Day. We were loading up for an errand and Ruby got her pinky shut in the car door. It wasn't slammed and she recovered quickly, but the finger looked bent and swollen, so away we went again. They did an x-ray and examined her; clean bill of health again. The doctor was confident everything would return to normal quickly.