Saturday, July 7th
We made it! Madison and I arrived in Michigan yesterday at 9:30 in the morning. All things considered, our
trip went quite well. It was quite an undertaking traveling alone with this little girl and all of her "stuff",
so I am feeling quite accomplished! The airport and airlines were not as helpful as I was hoping, but I was able to
(begrugdingly in some cases) get all of the assistance that I needed. The hardest part of the trip was getting Maddie,
her walker (gait trainer), her stroller, and her car seat to the correct gates. And since we had a layover, we had to
do that twice. I was so glad I insisted on bringing the gait trainer with us to the gate, though, as she was able to
get some exercise a tootle around in it while we were waiting. It was either that or let her crawl all over the airport,
and that just wasn't going to happen. The airline staff wasn't too thrilled about checking her stroller and
gait trainer at the gate, but I had made arrangements for them to do so beforehand so they just had to deal.
Our flight left at 11:30 pm on Thursday. Derek and Savannah drove us to the airport and we all had fun together.
Savannah LOVED being at the airport, and didn't get too sad when we had to say goodbye. A cookie and a ride on
Daddy's shoulders did the trick. Surprisingly, the airline let Derek and Savannah walk us all the way to the gate.
We had asked for assistance to the gate, but they said if we'd rather just have Derek help, they would allow it this one time.
The biggest thrill for Savannah then was that she was able to go through security - take her shoes off, put her stuff in the
container thing, go through the special machine, etc. She was adorable. Madison, however, was not that impressed.
When she saw the security lady come towards us with her rubber gloves on, she completely freaked out. (Rubber gloves
remind her of doctors and she hates doctors.) She screamed like banchy all the way through security.
Derek and Savannah got us to the gate safely and easily. While we were waiting together, Maddie choked on a piece
of cantaulope and Savannah fell backwards in Madison's car seat and all of her cantaulope went flying, but those are stories
for another day.
Unbelievably, Madison slept through the entire first leg of our trip - from SF to Chicago. She fell asleep during
takeoff! She's always loved loud noises and vibrations, so the airplane was a great place for her. I tried
so hard to get sleep myself, but I just couldn't get comfortable...
The rest of the trip wasn't easy - she was cranky, it became harder to get help, but I never felt overwhelmed.
We got our rental van (thank you for the rental, Simon!!!) and set off to find our new digs. Forturnately, our little
apartment is only about 10 minutes from the airport, and it was very easy to find. The apartment is cute, but a little
more dingy than I would prefer... It will do though, and we have all the amenities of home - except for a dad and
a sister.
We spent the weekend exploring the area, shopping, and taking walks. There are geese, ducks, and water all around
us in our apartment complex - it's quite beautiful. We even saw our first fireflies! Michigan seems like a lovely
place (I love the accents!), and I'm happy to be able to experience another part of the country.
Maddie starts her therapy on Monday, and I'm getting very nervous. It better be darn good and amazing! It's
hard not to wonder if we did the right thing at this point. I am feeling very far away from home and I pray that it
is all worth the trip out here. I think Madison misses Derek and Savannah immensely, and since she can't put her feelings
into words, I think it is that much harder for her. Her and Savannah are attached at the hip at home, and Maddie
is having a hard time playing without her. (Playing with mom just doesn't measure up to playing with a big sister!)
Thursday, June 12th
It's day four of therapy and things are going quite well! Days two and three were hard on both of us - reality
set in and I think we both realized that this experience is going to be a whole lot of work. Maddie cried a lot for
the last few days, and it was hard keeping her motivated. Today was much better, though, with much less crying and a
lot more smiles.
It is very hard to explain the therapy. I've tried to get a few pictures, but it has been hard since I am so involved
in it. I think I will be able to get some pictures in the next few days. The most significant part of the
therapy, I think, and the part that Madison had a very hard time adjusting to is that she has to walk everywhere...
She has to walk from the door to circle time, from circle time to the exercise area, from the exercise area to the potty,
etc. If she crawls, they make her go back and walk! This sounds a bit cruel, but really is not, and I think it
is so good for her. She is walking using a variety of methods. They have special chairs with rungs on the back
that the kids push around the room. They also have a walker for Madison (very different from her gait trainer - absolutely
no support...) and sometimes she just walks with assistance from the teachers and me.
The biggest reality check for me, so far, is that they told me that they don't think Madison should be using her gait
trainer any more. Her gait trainer is like a walker, but it has a seat, it has a strap that goes around her chest, and
it gives her tons of support. They believe this support might be hindering her body in figuring out how to eventually
walk independently. They want her in a more traditional walker, and I have been consulting with her physical therapist
back home (thanks Amy!) to help me make this decision. It's a hard decision, though, because Madison is finally sooo
happy in her gait trainer (it took a year!) and we finally all feel very comfortable with her using it. But in Madison's
life, the minute she feels "comfortable", I guess that means it is time to move on to the next thing. This can be hard
to accept sometimes. Change is not easy, especially with this little girl.
Another major milestone is that I took Maddie to get her haircut today and she didn't cry at all! ;-) Getting
Madison's haircut is usually a huge fiasco and she usually screams bloody murder. I talked to her a lot about it beforehand,
explaining that haircuts don't hurt and I think she is understanding so much these days, she really took it to heart.
But the Skittles and the nice lady could have had something to do with it!
We have been having so much fun exploring Grand Rapids. We haven't ventured too far, but we have seen a lot of
neat things. On Tuesday we went to Frederik Meijer Gardens, which is a very famous garden and sculpture park.
They also have an awesome kids area and Madison had so much fun. I also enrolled Madison in an afternoon Gymboree music
class and she absolutely loved it! I think she was just happy to be with some "typical" kids, and to just be herself
and not have her mom make her body do crazy, uncomfortable things. She was able to have a lot of free play there, also,
which I think she desperately needed (maybe her mom needed that too???).
Fortunately, Madison has adjusted to our little apartment quite nicely, and she is sleeping like a champ!
It could have something to do with the endless hours of exercise she is getting each day... I have enjoyed
four full nights of sleep, and I feel like I am finally recovering from my jet lag (or taking a red-eye lag...)
If you have gotten this far, thanks so much for reading and being so interested in our journey to Michigan. After
a lot of doubt, I feel very, very confident that we made the right decision to come here.
Saturday, July 14th
I am so proud of this little girl! She is working her tail off... We are really enjoying our time here together,
and I feel very lucky to have this one-on-one time with Maddie.
Madison had a very hard day of therapy on Friday. She was just so tired - it was like working with a little wet
noodle! When she was up in standing, her legs would just buckle out from under her, and even sitting up seemed to be
a challenge for her. I am happy that she is getting a break this weekend. By the end of the day, though, she was
doing quite well, and walked the distance of the parallel bars (about ten feet) twice, with a lot of success and smiling.
She is definitely very proud when she knows she has accomplished something new!
I am having a great time working with Madison on other things, as well. She had a lot of bad habits that needed
some working-on. For instance... Madison is the messiest eater you have ever seen. A lot of her food ends
up on the floor. About half of this is because of her condition and her uncontrollable movements, but the other half
is definitely behavior and habit. We have been working hard on this, and I'm seeing some great improvements. In
the hustle and bustle of our busy life back at home, I was never quick to correct this, or even understand what was controlled
and what was not. She did not throw food on the floor in a defiant way, it was more of a I-don't-really-like-this-so-I'm-going-to-get-rid-of-it
kind of way. She is now learning to just keep that food on her plate, or at the very least, hand it over to me.
We have also been working hard on getting her to drink out of a cup. This is difficult for her, because she just doesn't
have the hand control to do this very successfully, but we have to start somewhere. After some positive reinforcement
(bribery???) I'm getting her to drink from a cup several times a day. It's a mess, and she doesn't like it, but at least
it's a start.
We have also been working hard at recognizing her colors. I felt like she was starting to get a grasp on this before
we left, but with some help she is definitely starting to master this. Through some very messy color-specific art projects,
she is having fun learning about her colors! This was our "blue day", and by golly, she now knows blue 100% of the time.
It is a amazing what a little work can do! It is hard teaching these skills to a nonverbal child, but it can be
done. I think this is definitely a sign of her intelligence, which has been highly underrated by some in the past.
We went to another Gymboree class today, and I love to see how she thrives in this "typical" environment. With
all of her delays, her social skills have always been very high, and it is so much fun watching her play and interact with
all of the children. Who knew Gymboree would be such a significant part of our Michigan experience? We just didn't
have the time for all of this "fun" stuff between all of her therapy appointments back at home, and the craziness of
our everyday life. I can't wait to get back to that crazy life, but I am definitely relishing every moment of our time
here. I am also gaining some valuable perspective on what our priorities need to be when we do return home.
Sorry for the strong detail, but for our own sake, I want to get this all in writing before it leaves my very forgetful
mind!
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Maddie and her friends sitting at the edge of the "plinth" (she's in the back of the picture). |
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Maddie sitting nicely playing w/ her favorite ducks. (Her back should be against the chair, though!) |
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Derek & Savannah helping Maddie at therapy. (Sorry about the top of your head, shot, Derek!) |
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The kids putting ducks in water. Look at all of the great high-kneeling! |
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Big sister showing off the sign in front of Maddie's school. Future Vanna White??? |
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Look at Maddie's "gait trainer"! We stripped it down, and now it is officially a just a "walker". |
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Having so much fun picking Grandma and Grandpa up at the airport! |
Tuesday, July 24th
We finally had a couple of really good days of therapy again. There was definitely still some major fussing, but
it seems to be going better. Maddie is getting better and better in her walker as each day passes. The only thing
she needs help with is controlling it. She can push it and take a few steps, but if someone is not stablizing it for
her, she tends to push it too far forward and loses control. We even have the wheels set on a very slow setting, but
I think with time she will get it.
Yesterday, we were done with therapy, and she walked all the way out the door in her walker (with a little help), and
then I was going to pick her up and take her to the car. When I bent down to get her, she started fussing. I asked
her if she wanted to be "all done" or continue walking (with signs). She pointed straight ahead! She wanted to
keep going on her own, and I was amazed. She has a new look of determination on her face that I have never seen before.
It is the most precious and beautiful thing in the world! It took at least a half hour to get to the car, (it was about
15 feet away!), but we weren't in any rush to get anywhere...
We have made some amazing friends here in Michigan. We have had several "playdates" with the families from Maddie's
program, and it is so nice for the kids to be together and not have to "work". One family had us over and took us to
an amazing park right by their house, and another family had us over for swimming and hotdogs. We so appreciate everyone's
hospitality here, and it will be very hard to say goodbye when it is time to go...
Grandma and Grandpa arrived today, and it was so exciting! Maddie was so thrilled to see them, and it was fun showing
them around our new place. They are staying in the same apartment complex as we are. Fortunately, their apartment
is very, very nice and, yes, we are a bit jealous. ;-) Their apartment is on the third floor and it is very
bright and airy. We'll say they live in the castle and we live in the dungeon! They are in the building right
next to ours, so it is a perfect set up for all of us. Grandma will be joining us for therapy tomorrow, and I think
Madison will love having her there.
Derek and Savannah left on Sunday, and that was a tough goodbye. However, they are safe and sound in Texas now,
having a great time with Derek's sister's family.
Saturday, August 4th
I can't believe our journey is about to end! This has been such an incredible experience, but we can't WAIT to get
back home... We had our last day of therapy yesterday, and we leave bright and early on tomorrow morning (that would
be at 5am!)
This last week went quite well, and I am very pleased with all of Madison's accomplishments. All of these accomplishments
are hard to put into words. Some things would be very slight and unnoticable to someone who doesn't know Madison very
well. But, as her mom and to the people who see her on a regular basis, those accomplishments are huge. For instance...
she can go down stairs on her belly feet first, she can slide off of a bed and put her feet on the floor, then bend at
her knees and get down. These things might seem inconsequential to some, but in Maddie's life, they are huge
accomplishments. There are other things to, things that are hard to describe. All in all, Madison just
seems a bit older and a bit more stable. She seems like a different little girl than the one I brought here.
Because she has not been wearing her braces, she actually seems a lot less steady in her walker now than she did a week
ago. However, as the teachers explained to me, she is learning a whole new way of walking and it will take a while to
get used to this. Though she was more sturdy in her braces, she was walking incorrectly. She would lock out her
knees and swing her legs around to walk, landing on her heels. Now she is bending her knees and landing on her feet
correctly. So though she does not look very steady while walking now, she is walking correctly, and this is (obviously)
hugely important.
Her language skills have improved greatly. She is verbalizing so much more now. She is mimicking some sounds,
which she didn't really do before. We had a very exciting moment on Wednesday morning! Maddie was sitting
on the carpet making the "bu" sound. I was busy in the kitchen I was just kind of talking back to her with the
bu sound. However, she wouldn't stop and then I noticed she was firmly pointing to the carpet. I looked
and sure enough, there was a teeny tiny bug on the carpet! I almost started to cry! We might have to say
her first "official" word is bug. That's an interesting one... She is also saying bye, bye, and
pointing out lots of other things that start with a b. She has also started to say Momma, however I've only
seen her do it out of distress! When her teacher at school was working with her, she would point to me and dramatically make
a "ma" sound. Though she was crying, it was music to my ears! Today I was having her help me pack up the
animal magnets that were on the fridge. There were at least 20. I named each one and had her hand them to me.
She knew every last animal, with 100% accuracy! Everything from billly goat to panda bear... She also has several
new signs, including the very useful one of pinching her nose when she poops! (Thank you to her new friend, Drew who
taught her that one!)
It will be interesting to see if her new verbal skills remain with her once we are CA and not in such an intense
situation. She's been known to have a few "first" words before, only to suddenly stop saying them. (She
used to say "bubble" and "dada" about a year ago...) I have confidence all of this new stuff is going to stick...
So I have hugely mixed emotions about leaving. I'm not quite sure how I feel - happy, sad, relieved,
overwhelmed, excited, nervous - so I kind of just don't feel anything at the moment. I can't seem to organize this entire
trip in my head. From the decision to come, from the whirlwind of all of the fundraisers, to actually getting here,
to all of the therapy, and now, it's over. Just like that. This whole thing, from beginning to end has been one
of, if not the hugest, most amazing experiences of my life...
All of the mixed emotions aside, I do know one thing. I'm very, very excited to get home!!! It has been
extremely hard being away from Derek and Savannah for so long. We have a lot of unexpecteds when we get home, though,
so I guess I'm a little nervous about everything that awaits us - Savannah starting Kindergarten (on Tuesday!), Maddie starting
her new school, my sister having her baby who knows when (she's been dilated 2cm for 2 weeks!!!), a busy week of VBS and lots
of fun family functions, Derek painted the entire family room (keep your fingers crossed that I like it!), etc. etc.
So we are not going back to life as we knew it, and that gives me a bit of an unsettled, but very excited feeling.
Thank you to all who kept up with our trip. We felt so supported and loved the entire time we were here. Thank
you for all of your prayers, good wishes, and to the many who wrote, called, and e-mailed. (Thank you for all of the
beautiful cards, Barbara and Myrna - they've been a great decoration for our little apartment!) I certainly don't feel
too out of touch with our world, and I'm very grateful for that. When I get home, I hope to post the last of our pictures
here, if you'd like to take one last look. Then, I'll probably take a bit of a website break and do an update in a couple
of months...
Wish us a safe, uneventful trip back home... I'm packing up the computer now - see you in California!
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