Monday, September 29, 2008

Another Accountant in the Family

So today, Connor totally blew me away. I mean, some days he gives me a surprise kiss on the cheek and that is really nice, but this was earth-shattering. He woke up from his nap, and in his usual pattern he started to tell me about everything he saw and everything he remembered that happened before his his little short 25 month old sentences. So then he sees a business card on the floor (one of our collection of doctor's cards), which he immediately identifies as a "blue coupon." So I tell him it is a card and that there are more on the counter but that one just fell off. So then he looks up at the counter and says, "Other coupons. One, Two, Three, Four, Five." I couldn't believe it!! Of course I've been counting things to him as long as I can remember, and I knew he could identify that there were up to three of something, but I had no idea he had all that memorized and could count in order! So I immediately call his dad to tell him what a genius child we have, and while I'm rehearsing the story I get to the part where I'm describing his counting and as I get to "five" he yells to me, "Six!" from across the room.

I guess it makes sense because Adam is a math genius (cause you know he didn't get it from me who cannot add basic numbers without a calculator) and an accountant, so I suppose it's just like father like son. But seriously...I don't know why Ernst & Young hasn't called for Connor yet.

Friday, September 26, 2008

A New Halloween

We are now in the process of trying to decide what Connor should be for Halloween. I think this is the last year where I really have the choice, so I guess we should make it good. I was looking back through old pictures, and I saw the pictures of Connor from last Halloween. His "Gram" (my mom) has decided it is her job to furnish the Halloween costumes, and last year we got a good one--he was a cute little monkey. But it still seems so strange to look at the pictures now, because in those pictures he is actually standing up. It wasn't until closer to Christmas last year that we started noticing a problem. And now I can hardly remember him walking. Some days I want to delete all these pictures and never remember our life before we knew what the rest of his life would be like. But fortunately, his little face is so cute I just don't have the heart to do it. And sometimes I wonder if he'll ever want to see these, or will that just make it harder for him? Sometimes I really am clueless about how to handle everything. I was really just hoping to reach "An Okay Mom" status before all this, and now I'm not sure I even know what that is. What a blessing it is that it takes awhile for our kids to figure out that we're not gives us just a little more time to try to at least look like we know what we're doing.

Wednesday, September 24, 2008

Results from the Final Frontier

Yesterday we drove Connor up to Cincinnati Children's Hospital to see the team of specialists there. This was our last effort at finding anybody "local" (an hour and a half away) to treat him. We have seen specialists here in Louisville, but since SMA is a rare disease, it is hard to find doctors that have true experience with these kids and aren't just making their best medical guess based on something they went back and read in an old textbook. We'd been referred to Cincy Children's by quite a few SMA families, so we had our fingers crossed.
And it really was a great experience. Days before we even came, the "nurse concierge" called us several times to make sure everything was done and ready for our visit and to answer any questions we had. They sent us about 3 different maps to get there, and a welcome letter, and info specifically on our specialists. We got there at 1:00, and left at 5:30 having only seen two (neurology and physical therapy) of the three people we were supposed to see. That sounds bad, but the reason is that they were very thorough with us and just spent tons of time with us going over things and answering any questions we had. In the waiting room there were tons of toys and people to just play with your child (no joke--I think they were students) we could sit and relax for a few minutes. Then they had a toy cart with lots of toys in the hallway by the rooms so you could keep your child happy.
Neurology was great--Dr. Wong has seen lots and lots of SMA kids and told us "the type 1s usually react this way to this, but the type 3s do better with this." Physical Therapy made some great suggestions on his walking, and said with this specific adjustment to his braces they have seen some type 2 kids walk that never walked before--sooooooo exciting. Connor did walk and can with his braces now, but with this new part they said he would hopefully be able to stand alone without the walker. The third specialist, nutrition, is going to call us on the phone, and they are going to do some more labs and x-rays that they're going to let us complete here in Louisville and have sent up. Halfway through the appointment, Adam looked at me and said, "Well, I think we've found our new doctor" and I truly agree.
The only downside is that they suggested a power wheelchair for him, instead of a manual, so we are just back to the drawing board on that. But I guess we'll figure it out somehow--just like all the rest of this!

Sunday, September 21, 2008

A Pirate & My Other Car is a Jeep

This past Wednesday was our weekly storytime at the library. It was pirate week so all the kids got to dress up in costume. Due to our Ike windstorm, most of the public schools in Jefferson County were out of school for a week so we were pleased to have Aunt Jenna accompany us. Connor bestowed upon her the special honor of wearing the free hat they gave us, since he already had his own.
I have to say that I truly love the library here. The children's librarian is absolutely wonderful with Connor, and has made us feel really at ease there even though he's not able to move around like the other toddlers. We read pirate books, pinned the eye patch on the pirate, and made a bag of gold...which unfortunately involved glitter (which I don't particularly care for) so Aunt Jenna stepped in and saved the day.
On Saturday, we had yet another person look at our house (still crossing our fingers), and afterwards just wanted to relax a little, so we took Connor out back for a ride in his "other" car, which he refers to as his "jeep." The tricycle is great for rides in the park because it folds up and mom can control where he goes, but with his jeep he's free to roam...with daddy trailing behind.

Thursday, September 18, 2008

"The Call"

Today we got some very interesting news that made my heart skip a beat. As many of you know, we have been trying to make a decision about whether or not to enroll Connor in a drug study at Washington University in St. Louis. The theory is that this drug would help stimulate the gene that "backs up" the gene he is missing to produce the protein the cells in his spine need. The drug was FDA approved for sickle-cell disease, and didn't have any dramatic known side effects besides the fact it sometimes makes people smell fishy. Our dilemma was that it has a horrible, horrible taste and he was going to have to take it with very little to disguise it, every 8 hours for about 3 months. That means waking up in the middle of the night to put something nasty in his mouth, and then trying to get my 2 year-old to go back to sleep peacefully. (Riiiiiiiiight.) And then there were the 8 or so 5-hour (one-way) trips we would have to make to St. Louis in that time period.

In short, it was really a dilemma. On one hand it all sounded like 3 months of horrible days, and on the other you wonder if you are keeping your baby from one of the few possibilities you have that might actually help him a little bit retain some of what he still has. We had prayed and prayed and talked to everyone we knew and still come to no conclusion. We finally decided to see one more doctor next Tuesday and then we would make a final decision.

Then today, I got "the call." I expected it to be the call from St. Louis saying now that Connor was two, a slot was open for him in the study and we needed to get there as soon as possible. I had been expecting that call for a week or two. But what they actually told me was quite different. The therapist there said they received an email from the drug maker that they were closing the study to SMA Type 2 and 3 patients because those patients were having so many adverse reactions.

I hung up the phone and my first reaction was relief--now after two months of worrying about this the decision was taken away from us and we didn't have to even decide at all!! Then I thought about how it was sad this option was taken from us, but hopefully there would be more, and better safe than sorry. And then the "sorry" started to really sink in deep, and I realized just how close we might have been to doing something to our little boy.

Sometimes all this SMA stuff really sucks--a lot. What might really help just happens to be the same thing as what might really hurt. So you can do nothing or you just have to gamble with your child's health. How incredibly grateful we are that we have the Holy Ghost to guide us. We would never take any chance without a firm answer that it was the right step for Connor, and how grateful we are today that no answer ever came.

Monday, September 15, 2008

Ike Strikes...Kentucky?

Sunday was a strange, strange day for us. We walked out the door to go to church and thought we would get blown away. The day was right out of Mary Poppins--you know, the scene--"Winds in the east...mist comin' somethin' is brewin'...about to begin..." Well that was the strange part--nothing ever came, not a bit of rain. But that horrible, strong, strong wind never died down, not until about 8:00 that night. And by the time it did, 60% of Louisville and the surrounding area was without power. While we were at church, a branch fell on cars in the parking lot and the roof came off the building next to us--no tornadoes, just from wind. We go to church just on the other side of our little suburb city of Shelbyville and it usually take us about 10 minutes to get there, only because of the stoplights every block. But coming home took us about 45 minutes because there was tree after tree across the main four-lane road. And this poor tree fell down into our very own front yard. Luckily we and all our property were safe. And, Louisville's "up to 75 mph winds" made the national news!

Saturday, September 13, 2008

Sweet New Ride

Yesterday, Connor and I took a little trip to Sams Club. We were supposed to be getting just milk, bacon, and these tasty Healthy Choice Cafe Steamers (which sadly btw Alyssa are NOT $6). But, of course you cannot walk out of Sams without spending at least $50, and we certainly did not make that escape yesterday either.
So I walk in the front door and what do I see? This! A bright red, black, and yellow tricycle! Connor immediately starts yelling, "Bike! Bike! Get bike! Buy bike! In cart! Get bike! Bike!" (Continue that on for about 5 minutes.)
Why, do you ask, am I, a supposedly grown-up adult-type person so excited about this strange little tricycle? Because this is the most SMA-friendly bike I have ever seen! It has a button to disengage the front pedals so you don't actually have to push them (because he really can't) foot pedals that flip down where he can rest his feet (he can do that), side supports that pivot from the back to wrap around him and snap together in front of him to give him lateral support (a must have), a seat that curves up a little in the back to give lower-back support, a mom-push handle that can actually turn the front wheel, and a mommy foot brake that will lock the back wheel. Plus, its theme is the Disney Cars movie and it makes cool noises.
I think everyone in Sams thought I was a crazy woman that I was on the verge of tears over a Disney tricycle, but I just never really thought he would be able to use anything like a bike! We are so excited!!

Wednesday, September 10, 2008

Cousin Friends

A month or so after we told the family we were pregnant with Connor, Adam's sister, Beth announced she was pregnant, too. (Actually, I found out Beth was pregnant when one of her boys asked if the baby in her belly wanted a snack in church.) We soon found out that we would be having a boy, and after two boys, Beth's family would now be having a girl.

As well as being his cousin, Elsie is one of Connor's very favorite friends. Any day that involves Elsie is happier, and anything Elsie does makes that thing that much cooler. When Connor saw Elsie wearing a necklace, he insisted on putting everything he could find around his neck. And when he actually did find a sparkly, purple, beaded necklace in an old hatbox he demanded he be able to wear it to Wal-mart. Unfortunately, we somehow "lost" it in the van before we got there.

Connor also thinks everything Elsie says is "cool." He had been calling Elmo "Jo-Jo"(with a very cute high-pitched voice) for as long as I could remember, until one day he went and played with an Elmo toy at Elsie's house. Then the next day all of the sudden it was "Elmo" and "Jo-Jo" was no more. (I was pretty sad about that one.)

And most recently, I had been trying (please don't ask me why because I don't know why it is important) to get Connor to say the "sss" sound at the end of"ice" for a month or two, but he just wouldn't do it. So Elsie came over to play and said "ice" once and then of course Connor was perfect at it from then on.

Family is always a blessing and we feel grateful to have so much family so close to us who love and support us. But we feel especially blessed that we have family that we can truly call our friends.

Thursday, September 4, 2008

Plantation Vacation

This last week we took a little trip to see some old friends of ours, the Genhos. They live on a large ranch/farm that sits next to the Shenandoah National Park in Virginia, so it is acres and acres of rolling green hills, with bursts of forest here and there. They have goats, chickens, mules, horses, and lots and lots of cattle. (Connor still asks me to "see goats" every day.) It was just what Adam and I needed to relax after the last six months we've been through.

The main house on the property is an old plantation home. I tried to tell Adam how big it was, but he was still amazed when we got there...and I have to admit so was I. It is rumored that Colonel Slaughter still haunts the house and left a treasure somewhere. Unfortunately, we left with no ghost stories or treasure, but with a lot of great memories.

While we were there we got a chance to run up to Washington, D.C. a see a few of the sites. Somehow, despite drizzly weather, we still managed to have a great time. I guess it matters most who you're with.

One of Connor's favorite memories was definitely canning peaches with "Wemmie." I woke up from an afternoon nap to find Connor sitting on Lynnie's counter top, stirring a pot of water and "helping" her can some peaches. He was covered in stickiness, but blissfully happy. Though I thought Adam would never stray from his precious strawberry jam, Lynnie's tasty peach jam made him a believer that there might just be more out there. The fact that there was homemade wheat bread, scones, and biscuits to smother in it didn't hurt too much either.

While we were there, Connor also had his second birthday. I was afraid he might decide he needed cake at every family gathering after that since he had just about had it by that point, with that already being his third birthday party. But luckily so far he only starts saying, "Cake! Cake!" when anyone makes the mistake of saying the word "birthday" aloud. This was our little party.

Lynnie and Ava made some tasty "pupcakes" (Connor's new word). Somehow Connor decided that he needed to bring his mouth to the "pupcake" instead of the other way around. Luckily, he cleans up easy.

We had a great time in Virginia and love the Genhos even more that before, and hopefully we'll get too see them again soon!