Puppy Love

We have been talking about getting Lucy a puppy for quite awhile.  Since she turned two, probably.  We thought we could start researching it then, and by the time she was older, we would know what dog to get her, and that she would be able to appreciate it a little more. 

I did my research on and off, and had narrowed it down to a breed I thought sounded the best suited to our lifestyle, and to be a companion for her.  The problem was that these dogs were upwards of $1,000, and were rare breeds only available in certain areas of the country - and nowhere close to us. 

On the website for these dogs, though, I noticed that the breeders handled another breed of dogs - Coton de Tulears.  I looked them up and found that they had many of the qualities we were looking for; they have hair, not fur, so they are hypo-allergenic, they are calm, gentle, friendly, highly trainable, and are great companion dogs.  Still had the same problem, though - they were over a thousand dollars, and a bit farther away than we could travel.  I put it to rest.

On and off, I looked at puppies as Lucy got older.  I always came back to these Cotons, but everywhere I could find them, they were just too expensive.  As I was searching through the local classifieds online late one night, I saw a small white puppy, called a Havaton (a cross between the Havanese and Coton de Tulear) - for much less than $1,000!  AND the breeder was less than an hour from our house.  Bingo!

We contacted them and found they were going to have a litter of pure Cotons available at the end of November, so we set up a day to go visit them.

Well, hello!

 

We headed to Mueller's Woodville Kennels today to check out their litter of puppies.  Four furballs were brought in for our inspection.  Two were squeaky, one was rambunctious - and then there was this guy.  Quiet, still, calm.  I picked him up, and he didn't clamor to get out of my hands like the others did.  Just quietly, calmly stared at Lucy.  

 

So fuzzy!

 

The whole time I held him, he was calm.  I put him down to see how he interacted with the others, and he was calm.  No yipping, just a little sniffing around.  We found our match.

 

At the very end, he was a bit more sprightly; hopping around and getting his head stuck in the baby gate.  That's good, because he's going to need to be a bit of a clown to entertain Lucy.  She was all about the yippy ones - yippy puppies are her favorite ;)

We have to wait another month, as they are too young to leave their mother yet.  But he's marked as ours.  I can't wait to officially add another member to our family.  I'm hoping he's the perfect match for our Lucy.  Stay tuned - in a month we will have a formal introduction!

 

 

Oh Yeah... It's D-Day!

Another year farther away from the day we were told that Lucy had SMA.  And where are we now?  Lucy is in school (at home, we're not that brave yet ;)), she is rapidly outgrowing her 4T clothes (giantess, much?), and life continues on in our normal.  No illnesses to speak of, though there has been a little more loss of movement.

 I sew Lucy pajamas, and what does she do?  Try to outgrown them immediately.

Almost forgot about it this year!  I was thinking about it beforehand, but today I didn't remember until halfway through, then kept forgetting.  I'll take that as a good sign :)  Lucy is three.  What's up now, Dr. Montgomery?

She's also very good about smiling for pictures now!  Diva.

Unfortunately, there are still scores of kiddos diagnosed with SMA that don't make it this far.  It's not fair.  Please keep their families in your prayers, and help us fight back against this cruel disease.  Check out the"How You Can Help" tab above for ways to make a difference.

Crazy for Crafts!

I'm addicted to Pinterest.  Is there a woman out there who isn't?  It's a fun way to pass time while I pump for Lucy - yes, I'm still doing that :) 

Anyway, Pinterest happens to be a very useful way to spend that time; recipes and craft ideas abound there.  I have a board specifically titled "Things I Will Never Get To" full of fun things to make, and one called "Fun For Lucy," which is pretty self-explanatory.  During the summer, we're out and about so much that we don't really have time for arts and crafts, but now that we're pretty much locked down... there are hours to fill ;)

I had a few different things I wanted to try for Lucy that were fall-themed, so I decided to combine them into one big fall tactile extravaganza!  Lucy is not a huge fan of tactile sensory exploration, but she did okay with this one.  It was good because it had to be done in several steps, so it catered somewhat to her short attention span.  No idea where she got that from.

Meet - our leaf mobile!

It turned out pretty close to what I had envisioned.  There are three different types of leaves on here: felt/fabric paint, wax paper/crayon, and coffee filter/watercolors.  Most of these ideas came from links on my beloved Pinterest.

First we did the coffee filter leaves.  It's exactly what it sounds like - you wet down a coffee filter and paint it with watercolors, letting the colors run into each other for a really pretty effect.  Lucy is having a harder time moving her arms, even in slings, so her leaves are a little whiter.  We only did one small filter - remember, short attention span?  If I were going to do it again, I'd give her a bigger brush than the dinky one that came with the watercolors.  Also, the wetter the coffee filter, the easier the paint will spread.

Then we started the felt leaves.  I helped Lucy spread the paint around on one side (going for that tactile experience), and when that side was dry, I drew out a leafy vein pattern on the opposite side.

Last were the wax paper/crayon leaves.  I was pretty excited about these!  Lucy cannot use crayons in the conventional way, and I loved crayons as a kid.  I happened to have a tiny cinnamon grater in my utensils drawer, and it worked perfectly for crayon grating.  As I have never grated cinnamon in my life, I haven't attempted to clean it, so I don't know if it's something you want to do with your only grater.  All the yellows together, all the oranges together... you get it.  For this, I had Lucy lay on her side and use her slings to help me stir the various shades of each color together. 

I was hoping for a lovely mottled look - that didn't happen.  We sprinkled each color on a sheet of wax paper, pretty densely, then covered that with a second sheet of wax paper.  The tutorial I read about it said to cover that with a thin layer of cloth before ironing (think cheesecloth or those old, thin, white kitchen towels.)  I had a chunk of thin scrap fabric that I used.  You don't need a high setting; I used wool and could probably have done lower.  Those crayons melt fast!  Then I cut leaf shaped from my huge melted crayon sheet of wax.  If I do this again, I will get the crayons melted to the thinnest layer I can - I thought the color wouldn't be as nice, but in the few thin ones I got, it's still good and they are prettier in the sun.  The thick ones have become very brittle, the wax paper is starting to peel off, and I fear for their future.

Then, the assembly!  I used the inner ring of an embroidery hoop.  We tied on strings of bakers' twine and embroidery floss.  For the felt leaves, I threaded those strings through a needle and stuck the needle through the top of each leaf, looping it around and tying a knot at the top so they would stay put.  We did all the felt leaves first.

Next, we filled in with the wax leaves.  I had some huge ones cut out, so I taped those to the hoop with boxing tape - nothing fancy here.  I taped the rest at intervals on each string.  Same with the coffee filter leaves, which I cut really tiny.  You can see the tape, but we just aren't the kind of people who care.

Done!  We hung it above our TV, from a random hook that has been in our ceiling since we moved in.  If I had a decent place to hang it where the sun would hit it, I would much rather hang it there, since the crayon leaves are so pretty in the light.  As it is, we had a few left over and hung them from the front window.

Thanks to Pinterest for bringing so many great ideas to a central location!  I never would have thought of these things on my own, and they are something different for Lucy, too.  Hopefully we'll have a whole fall and winter full of fun things to make!

Baby Be Blessed Giveaway!

I love cloth or knitted dolls for Lucy.  The plastic ones aren't easy for her snuggle with, and cloth ones are light enough to lay on her arm without bothering her (she has a real thing about anything resting on her!) 

She has a Blabla dolly that she sleeps with every night, and a cute mini-me doll from HenAndChick - complete with aqua glasses!  I'm always on the lookout for cute handmade dolls to add to her collection.  I saw someone post about the "Baby Be Blessed" dolls on Facebook, so I had to check them out.

What wonderful little dolls!  And perfect for our family, as they include Bible verses right on the tummies :)  They are having a giveaway right now, so we are entering to win one.  Please keep Lucy in your prayers to be the blessed recipient!  It's so hard to think of one verse to put on, but for Lucy we would have to choose 2 Corinthians 12:9.

"But he said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me." 

Perfect, right?  We were thinking about ordering one for Lucy for Christmas, but they are so busy making their orders that they aren't accepting any more Christmas orders.  So we're hoping that Lucy will be chosen for a sweetie of her own.  Praying that it works out!

How We Are Doing

A woman came up to us while we were eating lunch today, pulled out a chair, and sat down to talk to us about Lucy.  She had noticed the feeding tube, and thought that Lucy might have had what a friend's baby had had.  We told her it was SMA, and she was surprised that Lucy was as old as she was.  She mentioned that the expected lifespan for Lucy's type was 6-8 months, which surprised me - we don't often run into people randomly who know anything about SMA.  I explained about Lucy's breathing treatments and BiPAP usage, and she thought that was great.  She then asked if we believed in Jesus, and we said yes.  She said she was glad, because then she could see Lucy in heaven someday.  I believe she was under the impression that we were just counting the days until Lucy passed.  So much has changed since her friend had her baby with whatever diagnosis it had, and we don't talk about that kind of stuff around Lucy, so I glossed over those statements.  Lucy's ears work just fine ;) 

Then she asked us how we were doing with it all.  That's a question that I don't often think about, so it kind of caught me off-guard.  I get the impression that people think that we are just putting on a brave face, but are just really crumbling and miserable on the inside.  It seems like even the most positive, the most spiritual of people look at us with their pity just barely masked.  I don't blame them; I'm sure I would react the same if I were in their shoes, not knowing our life.

That's the thing, though - that's what this is for us.  Our life.  After she walked away, I really thought about how I could honestly answer that question.  First of all, this diagnosis is almost three years old for us - which was something else that surprised her.  It's not new news.  And while certain aspects are still painful and frightening, those things are not what is at the forefront of our minds every day.  The closest way I could think of to say it is that it's not part of our lives; it is our lives.  It's not something I can choose to not be okay with.  It is an aspect of Lucy's being.  In my mind, it is the equivalent of her having a speech impediment, or a food allergy, or needing glasses (not to downplay its obviously being a very serious situation) - it's something we mold our lifestyle to accommodate.

Now, everyone deals with and feels about SMA in their own way, and there is no wrong way, this is just what I feel - at least, this is the best way I can think to put it.  As a guide to conversing with us, I'll put this out there - there is no need for pity, please don't assume that no matter what we say that we're barely holding it together, and - most importantly - don't repeat over and over how lucky we are to have our daughter here.  We know.  And she can hear you.

Awareness and Ice Cream

August is SMA Awareness Month, but I'm all about awareness at any time - and not just of SMA, but of children who are different in general.We often walk with Lucy to Gilles, to get her some ice cream tastes.  This time, a mom and her two kids sat on the other side of the picnic table we were at. Her little girl was maybe a year older than Lucy, and leaned across the table and started to ask her mom loudly, "Why is that little girl laying - " Before she could finish, her mom poked her under the table to silence her.

I turned around and smiled, and said "This is Lucy. When she was born, she was born with really weak muscles, so she has to lay down." I could see the girl processing this, and then she asked, "Why?" I said "That's just the way she was born," because she was too young for me to really explain SMA (and we were getting ready to walk home :)).

It wasn't even about raising awareness of SMA, but rather letting that little girl know that there are kids out there who are born with different abilities. My responses to questions from kids are usually tailored to what I think they will best understand (and sometimes to the situation as well), but never will I be offended or bothered by an honest question from a kid. That's the best thing we can do for this society - teach kids early that not everyone is the same, and that's nothing to be ashamed or afraid of. Shushing your child when they have an innocent question about someone with disabilities, to me, sends the message that it's something we should not talk about - and that's the farthest thing from our goal. If you're ever in doubt, you can always politely ask the parents if they are willing to answer a question!

 

Lucy enjoying some ice cream - ignore the snowflake hair clip; that was all Daddy.

 

 

 

Clinic Day!

Since we are so blessed that we have Dr. Schroth only a little over an hour away, Lucy goes in for clinic days four times a year.  These days usually include updating her stats, blood draw, seeing Dr. Schroth, seeing the dietician, having the RT check her bipap... I think that pretty much sums it up.  Not only is that a fair amount of stuff to have done, it's not like they're all coming in one right after the other.  There are wait times in between - usually.  Not this time!

Lucy's AFOs have been giving her bruised heels, so she needed new ones ASAP.  We called the orthotics clinic - also in Madison - to see if we could sneak Lucy in on the same day as her clinic day for castings for new braces.  If you have to pack as much equipment as we do when you go somewhere, it pays to cram as many things into one trip as possible.  The receptionist said that James was supposed to be on vacation that day but was coming in to do some paperwork, so they could squeeze us in.  The only problem was that the time he was in was a scant two hours after our appointment with Dr. Schroth and crew STARTED.  No way have we ever been out of a clinic day that fast!  I was skeptical.

The receptionist suggested we get to our clinic day appointment an hour early, to get out earlier.  So, for us, an hour early means getting there on time.  Seriously.  We sped in and catapulted Lucy into her stroller, zipped up the elevator, and - since we've been hearing that the whooping cough and other awesome sicknesses have had record outbreaks in Wisconsin - we slapped a mask on Lucy to frighten away would-be infection machines.

 

We were so happy we got to see another SMA family as soon as we got to the front desk - the always handsome Garrison, sporting an awesome hat, and his awesome mom Angela.  No sooner had we made introductions, though, than we were called back.  It was so fast, I didn't even get a picture!  And if you know me, you know I am a picture FREAK.  Better luck next time.

Lucy was immediately on edge when we got back there.  She's no fool; she knows she's going to get poked and prodded, and she hates it.  She fussed when they took her blood pressure, and was just generally ornery through everything.  We got Lucy measured and weighed (up an inch and an astonishing 5lbs since our last visit!) and started a clinic day like no other.  Everyone was in and out, we skipped the blood draw since our favorite blood whisperer phlebotomist Noni wasn't there (which garnered a smile from Lucy, when we told her she wasn't getting poked), and bing bang boom, we were out!  We are going to have to set up appointments on the tail end of every clinic day from now on :)

We raced over to the orthotics center (well, as much as a Econoline van can race through insane road construction) and made it only a few minutes later than we had agreed on, which actually worked out great.

Lucy was casted for AFOs and a TLSO.  These braces help keep her ankles from getting too tight and contracted into the ballerina position (AFOs) and keep her back straight when she is upright in her stander (TLSO.)  She took it like a champ - probably mostly because she was engrossed in Sesame Street on her iPad :) 

Lucy in her body sock.

Almost done casting!

 Picked out a fun pattern for her boots, and we were out the door!  The receptionist even told us a back way to get out, so as to avoid the construction, and we also avoided going through Madison at rush hour.  Shaved a good half hour off of our drive time! 

I had prepared myself for a hugely long day, and was pleasantly surprised to get home when we normally do.  Another successful clinic day!  We got to hear multiple times how good Lucy looked, and tweaked the settings a bit on her bipap (and she's sleeping a bit better as a result), along with making some adjustments to her diet.  Still pinching myself to make sure that we are really so blessed to be so close to such a supportive SMA system!

August is SMA Awareness Month.  Please, feel free to take Lucy's story from our blog and share it with everyone you know.  The more people know about this condition - one that is carried by 1 in 40 people, and affects 1 in 6,000 babies - the more urgency will be felt to end it.