The Future

This article came out last spring, yet I didn't read it until about a month ago. I immediately started this post, but it's taken me forever to get all of my thoughts out..... Head's up: they are still jumbled!

As with anything in the medical field, new drugs, new technologies, and new studies are continually affecting life as we know it. Sometimes it's for the better, and sometimes, not so much. A new drug, RG1662, has been found to improve memory in mice, which in turn allows for improvements in their ability to learn and retain new knowledge. Scientist and doctors hope that clinical trials on adults with Down syndrome will provide the same results.

This sounds like great news, as improved learning and thinking can only improve overall cognitive functioning. However, no change comes without consequences. In a perfect world, improvements in medicine and technology offer only positives to the individuals who are affected by them, but how often is that the case? Many times side affects come into play. With this particular drug, there have already been tests on humans which resulted in no side affects. But sometimes those side affects are not as cut and dry as symptoms like headaches or decreased appetite. Sometimes the side affects are behavioral. Sometimes the consequences are changes that can't be undone.

Don't get me wrong, this could be really, really great. If this drug helps people with Down syndrome integrate into society more readily so that 'typical' people can be touched by their awesomeness, rock on. In addition, if this drug gives adults with bad stereotypes and questionable judgement a better feeling about those with Down syndrome in general, therefore increasing the chance that they or someone they know will choose to NOT terminate a pregnancy suspected to produce a baby with Down syndrome, resulting in an increased amount of awesome Rubys in the world...double bonus.

But I have to think about the 'what if'. My main concern with any of this is how will it affect Ruby. Even at her young age, she spends so much time intently studying those around her, especially those she loves. And she gives kisses so freely and lights up at the mere chance of a snuggle or hug. I have to think that's because her love is totally unfiltered, even more so than my other babies' love was at this age. I know with them, that love has remained awesome and 'more' than most adults I know, but it has slightly changed and become more guarded, less 'free'. Many things point to Ruby's love not changing in that way; she will likely love freely longer than her siblings. What if the improved cognitive ability she gains from this drug or another like it causes her to see the world differently? What if her new thinking leads her to the same slightly jaded view of expressing love that most 'typical' people have? Not trying to perpetuate the stereotype that all people with Down syndrome are happy and love to give hugs, but most people would agree that, in general, the Rubys of the world are a loving bunch. How sad would it be do compromise that amazing quality?

So here I sit, on the fence. Excited about advances, but scared about how far their effects will reach. Pandora's Box....

Maddux and Flat Stanley

Just before the holiday break we got an email from Maddux's teacher. Seeing an email from her teacher didn't raise any red flags immediately because Maddux's teacher often checks in with us about various things via email; it's one of the many things I love about her. Once I read the email though, I have to admit that my instinct was to chuckle rather than get mad...that girl....

...for our reading assignment, the kids were to pick books to read that are on their level, yet still challenging....She chose a Flat Stanley book. We did the same thing before she started reading and I felt the book would be okay for her to try and read independently. When she went to fill out the story elements for the book, I was amazed! The vocabulary and spelling were not what I usually see from Maddux. Come to find out…. She copied the summary on the back......When I asked her about it, she said she had trouble with the book and could not remember what happened or she did not understand.....Of course I will not force her to read a book that she does not comprehend, but I also want her to persevere and build that reading stamina. I want her to learn that if she starts something she needs to finish it, even if it is challenging. With that being said, I am going to send the book home with her to read with you guys......I will also send home a story map for Maddux to complete when you guys are done.
 
When Maddux got home I had a serious talk with her about this and explained the concept of plagiarism to her; my choice was to assume that she was ignorant to the concept and meant no ill-will. We then talked about her consequence, given by her teacher: she was to read the whole book and complete the homework for it over the break. Maddux didn't like that, but I reminded her that had she done what the teacher asked, she would have completed it in class over the last week or so instead of on her time off from school.

While Maddux has shown a lot of progress with her reading, she definitely gets distracted easily while around others. If she's in her room reading books, I watch her read one completely and then move onto another, never breaking her focus, but when she's in the classroom full of other kids, I know she doesn't quite know how to 'tune out'. And she is perfectly capable of reading most anything she wants, she will pretend to struggle sometimes if she doesn't feel up to it. Too bad Mommy's on to her.....

Let's All Go To The Movies

With two weeks off from school, and a few visits from Grandmas (to help after Lehr's surgery), I thought the holiday break would be a good time to steal away with the two older kids without Ruby. Don't get me wrong: that girl is a rock star and has yet to limit our ability to go to the park, the river, even the movies. But with her nap schedule falling more solidly into place (and there being only two of those each day), I thought it would be fun for Eli and Maddux to hang out, schedule free.

A few months ago when I took the kids (all three) to see "Planes", we saw a preview for an upcoming Disney movie: "Frozen". They asked me right then and there if we could see it at Christmas. So today found the two 'big' kids and I at the theater! What a fun movie; Eli and Maddux LOVED it. (So did I!)

As with most outings with the kids, funny things were said and realizations were made. I think I noticed them more because I was less distracted without Ruby.

• Eli saw some random preview over the summer and commented that he thought the actor that played some part was the same one from another animated movie we saw, just with his hair cut. Kinda funny, since he wasn't saying that the voice was the same, but the actual person (animated) on the screen. When Frozen started, Eli leaned over and said, "I think that's the same actress as in Rapunzel, just with shorter hair." Smart boy, as the two movies do have the same drawing style for the faces, but once again, I was reminded of my little boy's innocence.
• We had to park rather far away due to the large number of people who had the same idea as we did for the day after Christmas. As we were walking (and walking and walking!) to the ticket counter, Maddux chatted along the way but stopped when we got within throwing distance. "Mommy, I'm going to look to see if I know anyone here." That sounds about right because Maddux is *slightly* social and does tend to know a lot of people. Then wihtout missing a beat she said, "Oh, HEY ADDISON!" Yup....of course she saw a friend right away.
•  If you've see Frozen, you know there is a scene at the end that hints at the main character's death. This storyline plays out for about 1 1/2-2 minutes. Just long enough for Maddux to totally tear up and lean on my shoulder. When the character starts to 'melt' and come back to life, I watched Maddux wipe away her tears (many, many tears) and smile. Love love love that sweet girl.
• This one is unrelated to the movie, but it was awesome and I don't think I blogged about it yet. A long while back we were having a conversation about horses and unicorns (and maybe some other horse-ish animals). While we talked, I made some comment about unicorns being horses, but with a horn. Maddux insisted they were not the same at all, horn or no horn. We went around and around about it, but in the end Maddux's defense was that they are different because 'horseys are giddy-up' and unicorns aren't. I guess that's that!

Christmas 2013

Lehr had surgery two days before Christmas this year, so our holiday break didn't look quite the same as years past. No Christmas Eve service and no family bikes or hikes, but we still had a great time. One of the biggest highlights for me, as always, was the kids' gifts to each other. As usual, they picked out great gifts that they knew would be well received: Eli got Maddux a bow and arrow and Maddux got Eli a basketball. The older kids both picked out clothes for Ruby, which was odd but completely their choice, and Ruby got them each a framed picture for their rooms.

We did the Jesus stocking a little differently this year. Instead of me collecting all of the ways we've served in the name of Jesus this year and going through the items on Christmas day, I had the kids work with me leading up to Christmas. First, they helped me make a list of things we've done to be the hands and feet of Jesus. Then on another day, they wrote and drew on a piece of paper for each item. We never actually went through it on Christmas because I felt the prep time had been more impactful. Lehr and I planned to also make our annual Samaritan's Purse or Buy Less to Save More purchases online with the kids on Christmas Day this year, but between Lehr's knee and me feeding Ruby, we ran out of time.

While we weren't sure if it would be the case or not, we did have the magic of Santa for another year. The kids wrote him notes and left him cookies, and Maddux even left him a chalkboard note in the backyard. She seemed more skeptical than Eli this year, asking several times, "Is he really real?" Ruby woke up at 1AM on Christmas and when I walked to her room, I noticed Eli's bed was empty. Immediately I heard scampering up the steps and Eli's sheepish face appeared. I told him to go back to bed, but didn't follow up with him until later the next night. He said he was just so excited and he had to look. I asked him what he'd seen and he detailed the scene left for the kids by Santa. I do love the innocence in that boy's heart.

The kids had a great day, playing with the gifts they'd given each other and their two other homerun gifts: a skateboard for Eli and roller skates for Maddux. We played a few family games with Mom-Mom and finished the night with our traditional spaghetti and meatballs and birthday cake for Jesus.

Traditions

The kids and I have a bucket list every holiday season.

We don't call it that, nor do we physically make a list, but in the months of November and December we always:

• fill some Operation Christmas Child boxes
• make chocolate covered pretzels for teachers, bus drivers, my OBC instructors, and a few others
• watch typical Christmas specials (Charlie Brown, Christmas Carol, Prep and Landing, etc.)
• complete a wish list of holiday gifts for a child with an terminal illness (and their family)
• address holiday cards with decorated envelopes
• cut down our own tree
• prepare cards or notes for our Jesus stocking
  
• house decoration
• drive around and look at lights at least 3x
• make gingerbread house and cookies
• read our many Christmas books, again and again
• write notes to Santa on Christmas Eve
• make homemade spaghetti sauce, meatballs  and pasta for Christmas dinner
• put Jesus in the manger on Christmas morning
• purchase items for others on Samaritan's Purse or Spend Less to Give More
• make a birthday cake for Jesus for Christmas dessert

We love going through each of these items, and the kids always remind me of ones we have yet to do. This year we missed a few, but kept the tradition going for the majority. I love love love that both Eli and Maddux already know the tradition of how we do Christmas in our house, and I love love love that they look forward to it each season.

Gifts From The Heart

As we are in the season of Christmas, gifts are on everyone's mind. Because Maddux is who she is, she thinks at least about giving gifts to others as she does about receiving. This, I love.

When it came time for me to make my annual chocolate covered pretzels for my instructors, Maddux and Eli always ask to give some to their teachers as well. This year I asked if they could think of at least one other staff at school to give them to, preferably someone who may not have a specific class that would be showering them with gifts. As expected, Eli didn't think of anyone, but Maddux immediately asked to bring some to 'the lady in the lunch room that always helps me'. This could mean any number of people, as I have to imagine that Maddux receives help many times each day. But Mad Dog did have one specific woman in mind: the cafeteria staff worker who consistently helps my girl with opening her milk or her orange or her cheese stick or anything else packed in her lunch. Love it. Of course we made them for her and Maddux delivered the next day.

While Maddux made a card for her teacher and we sent in pretzels, the day before the holiday party found Maddux scurrying around for another present for her beloved teacher. She took one of the plastic bags i used for the pretzels and found a variety of gems from around our house that Ms. W may like. The items that made the cut were (overly) scented lotion (only used once by Maddux), two unsharpened pencils, an eraser, and a small page of stickers. While inwardly I cringed at the gift, especially the (overly) scented lotion, it warmed my heart to see Maddux thinking so intentionally about what her teacher may like or need.

When Maddux got home from school I asked if she'd given the gift, and if Ms. W had liked it. Of course, she did. When I touched base with her teacher letter, she sent me this awesome note:
Ah it was absolutely precious. Maddux is one of the most precious children that I have ever met. She may drive me up the wall at times, But I love her more and more each time. She has a beautiful personality and an even bigger and more beautiful heart. Not to mention she is as cute as a button. You and your husband have done an amazing job with her. I wish you all a very merry Christmas. Enjoy your Jesus cake and spaghetti and meatballs :) Maddux wrote a beautiful and very structured story of your special family tradition. I was a very proud teacher!

Therapy Update

Ruby has officially entered the phase of NOT liking therapy. She does great with me or Lehr, but when the Babies Can't Wait physical therapist comes, she has started crying close to the whole time. Not fun. Especially for Mommy, who knows that Ruby is not a fussy baby at all, and she really doesn't have 'fits' outside of the therapist's time.

The main focus in therapy right now is encouraging Ruby to bear weight on her straightened arms, like in an up-dog position. She has been up at 90-degrees on tummy time for months, but only on her elbows. And she often shifts her weight to use one straightened arm, but she rests on her elbow with the other arm. This will not help her crawl or cruise, so we are working on it. But she doesn't love it, nor does it come naturally, so much much much is to be done.

The specific exercises we do daily are:

• her chest over my lower leg with arms underneath her. (I'm bearing most of her weight on my leg, but it allows her to be in the correct position and get used to it.)
• side sitting on the balance ball. (I sit her flat on the ball and then shift it to one side, which throws her hips to one side and her body to the other, she then has to lean on the 'other' arm. She does not like this one.)
• supported sitting on the ground. (We sit Ruby with a couch or other supported surface behind her and she must use her arms to 'catch' herself as she tips forward or to the side. She does ok with this going forward, but still doesn't catch herself to the side.)
• ball rolling. (This is the most fun and she usually 'gets it' towards the end. I put Ruby on her stomach on the ball and roll it away from me. I roll her until her head is just inches from the ground. The goal is to trigger her protection instinct, as in she should throw her hands out to touch the ground before her head. She does not do this initially, but after I show her a few times, she will do it on her own.)

We also have a fun little arm 'splint' that the therapist left with us. It gets wrapped around one arm and it prevents her from bending at the elbow. We alternate which side it's on so she gets equal opportunity to have to weight bear on straight arm(s). The problem with this is Ruby will just lie flat down (no arms) and just raise her head to play (like a superman position). That girl's crafty!

Basketball

We've talked about some of the perks of an 'off-season' that we've realized in our family, but now Eli is enjoying a different kind of perk: a new sport. By the time we are done with baseball most Novembers, we are so ready for a breather that basketball is not even up for discussion. This year, however, we decided to let Eli give it a shot.

The church up the street has a great league that only has one practice and one game/week AND the schedule is totally laid out at the beginning of the season. Eli's never played formally, but he does a lot of one-on-one (with next to no rules) and shooting in the neighborhood.

As expected, Eli is not in line to be the team's center, but he can dribble and shoot at least as well as all of the other boys. Practice has been great for him, teaching him some of the positions and strategies....and he always looks forward to the next practice. This afternoon was the first game. Eli was point guard 3/4 of the time and did fairly well. The sense of urgency of the game took him a bit by surprise the first time down the court, and he had the ball taken from him by a few more seasoned players, but he loved every second of it.

RSV

Wow. What a fun title!

Ruby has been so healthy since she was born. No colds, no sniffles...nothing. Unfortunately last week that changed. On my way to bootcamp Monday morning, I heard Ruby cough on the monitor and it did not sound good. That morning I called the nurse and walked through what was happening, but based on no fever, no runny nose, no anything other than a few random coughs (that sounded HORRIBLE!), she told me to wait it out and not bring her in yet. Reluctantly I agreed, but Tuesday morning I was at the doctor's office before they opened. Even though she didn't have any big symptoms, those coughs were just not 'right'.

Ruby and I got in to see the doctor pretty quickly; she checked her all over and asked me a bunch of questions. Nothing set off any alarms with her, but she said they'd swab for RSV, just to be sure, and then send me on my way because Ruby was fine. As she walked out of the room, Ruby finally coughed and the doctor turned around immediately and came back in. She checked a few more things (still fine) and said that they'd swab, but it was likely RSV, based on the sound of that cough. Sure enough, the test came back positive.

Since this was our first experience with RSV, I read all kinds of things about it on my phone every time I sat down to feed Ruby. I kept watching for all kinds of other symptoms, totally aware that there was a possibility of Ruby's cough developing into bronchitis or pneumonia. Yikes. My biggest fear was her breathing and the possibility of us ending up in the hospital. My other big fear was an ear infection. With Ruby's ear canals being so small, the doctor cannot see her ear drum to see if it's inflamed or not. I'd asked the doctor a bunch of things about that, so I knew what to look/listen for, but at 11PM, your mind plays tricks on you. Lehr and I spent more time than we probably should have watching her breathe, watching her sleep, just watching her..... The doctor also told me that she would likely 'peak' around day five. We waited those five days, but her cough only got slightly worse; no other symptoms. After seven days her cough was significantly better and by Thanksgiving, there was no trace of it. Glad to have that behind us.