When Your Toddler Doesn't Toddle

Fletcher has been diagnosed with Cerebral Palsy due to a brain injury he sustained as a result of his extreme prematurity. I still plan to back up and fill in some journal entries from his time in the NICU, and I will go into more detail in those posts.

Before Fletcher's diagnosis, pretty much my only exposure to a person with CP was Blair's cousin on the sitcom Facts of Life. In other words, nearly none. It has been a steep learning curve, and I still have much to learn, but learning about cerebral palsy and how it affects Fletcher has been my focus for the majority of the last year. Cerebral Palsy is hard to classify because it manifests differently in every person. The term cerebral palsy refers to any one of a number of neurological disorders that appear in infancy or early childhood and permanently affect body movement and muscle coordination but don’t worsen over time. I found that definition, along with a good basic explanation here.

For the last, 21 months, beginning mere weeks after Fletcher came home from the NICU, he has been doing what many consider "traditional" therapy to combat the effects of his cerebral palsy. He began with occupational therapy (OT) twice a month. After a few months OT was increased to weekly and physical therapy (PT) was added. Over time new therapies have been added and the frequency of others increased. Currently Fletcher has PT two times a week, OT once a week, vision therapy/early childhood special education once a week, aquatic therapy once a week, speech therapy once a month (increasing soon to two times a month) and sees a nutritionist once a month. Luckily for us all of these programs are paid for by our local early intervention program, Infant Toddler Services of Johnson County (see the link in the right hand sidebar for more info), and all but the aquatic therapy is provide in our own home.

We have seen Fletcher make steady progress with these therapies, but, for Fletcher, I feel like we need to be doing so much more. And there are plenty of alternative therapies out there. Problem is finding one that is right for your child, as each kid can respond differently to a particular therapy. Another CP momma, or should I say supermomma, seriously, this woman is an incredible mom and advocate for her son (and believe me, advocate is one of the biggest roles you play as a parent to a child with special needs), put together this therapy approach that illustrates all of the options her son has tried and others that she is researching. It is not an easy choice as it would be impossible to do them all because these alternative therapies are not covered by insurance, are not cheap, and often are quite time consuming with no guaranteed results. You can research all you want, but at some point you have to take a leap of faith.

I have taken my first leap and tomorrow begin a week-long program learning the basics of ABR.

Mission Statement

Up until now, I have been using this blog as little more than a photo album. As I have mentioned in the past, I have grander plans for it. In our effort to build our family, Trevor and I have been through many less-than-typical experiences. We struggled with our special brand of crazy genetic-based infertility and the ensuing IVF cycles, then I developed preeclampsia/HELLP syndrome and had to be hospitalized, next were Fletcher’s extremely premature birth and three month NICU stay, and finally, our daily life dealing with Fletcher’s special needs. All of these situations are not the norm, and each can be very isolating, let alone all of those challenges in the aggregate. These are not the topics of play date banter or water-cooler discussions at the office.

So, for support and information, I frequently turn to the Internet. It has truly changed my life. Instead of feeling like I am the only person dealing with these situations, I have found communities of people (well, mostly women) who have walked the walk, so to speak. I have learned so much from these women who take the time to chronicle their special children’s successes and set-backs, as well as their own, as special moms. In fact, as I type this, Trevor, Fletcher and I are on a plane bound for Montreal, Canada to pursue a new therapy I discovered through a fellow mom blogger.

I feel like it is finally time to start giving back. I am going to try to start posting a little more in-depth about Fletcher’s challenges and the way we are addressing them. This is not an easy thing to do in such a public forum, even for a fairly open person like myself. I have no way to control who accesses and reads this blog without “going private” and restricting access to only those I invite into the readership. But going private is not an option if I want this blog to be a resource, or at least small source of comfort, to people like me who hope to learn from other people’s experiences and feel not so isolated and alone. So, I am willing to step a little outside my comfort zone and really try to open up about the realities of our daily life.

National Pregnancy and Infant Loss Remembrance Day

Tonight I will light a candle in loving memory of

Owen Riley Slinker and Megan Nicole Russell.

The Lake

Over Labor Day weekend Fletcher and I joined my family at our grandparents' cabin at the Lake. It is a very small three bedroom cabin, but growing up we used to pack it full of up to 10 adults and 10 kids, the latter sleeping side by side like sardines on the floor. This time it was just my immediate family, so Fletcher and I got a bed all to ourselves.

Being an overprotective mom to a baby with poor head control and an oral fixation, I was a little hesitant to bring Fletcher swimming in the lake, should he inadvertently, or rather intentionally, if he got his way, gulp a few mouthfuls of the water (fresh spring water it ain't). On Friday I even brought a blow up pool and hiked up and down the hill from the lake to the cabin to fill it with tap water. However, I am trying to give him as many typical kid experiences as possible, so on Saturday I relented.

Here he is in a boat borrowed from one of his aunts (thanks Niki!). It didn't offer great trunk support, but the baby float I usually use has a much lower profile and he can get his mouth way too close to the water.

Drying off with Grandma.

I like to call this one "Everyone Loves Angie."

Because I am just that mean, the highlight of the weekend had to be when my mom fell, fully clothed, into the lake when trying to board the paddle boat. Being a good sport she just swam over to the the ladder on the dock, climbed back up and tried again. Luckily Fletcher and I boarded safely on the first try and he loved it. Hopefully next time we make it down to the Lake Daddy won't have to work and he will be able to join us.

Reaffirmation of Faith

Not too long ago Trevor, Fletcher and I became members of a new church (well, new to us). I was brought up in a different denomination, but had gotten out of the habit of attending services. Many things have come out of Fletcher's preterm birth, and one of them has been my new appreciation in, and reliance on, my faith in God. This particular church, while much larger than what I was used to, is a good fit for our family, in part because I really enjoy the senior pastor's thought-provoking sermons (he even has his own blog), but mainly because this church has a program called Mathew's Ministry, which serves people with special needs. Although I have yet to sign Fletcher up, I can't tell you how excited I am about this program.

We arranged a Reaffirmation of Faith ceremony for Fletcher during the 10:45 service last Sunday. Procedurally it was the same as a Baptism, however we had already had Fletcher baptized in the NICU when he was four days old. This was not a good memory for me. I was still very sick, my eyesight continued to be compromised from my preeclampsia/HELLP syndrome, I had not even been allowed touched Fletcher yet, he was so tiny and fragile although he was in his "honeymoon period" so temporarily on c-pap and doing well for the moment, but still under the billi lights (which they turned off for the ceremony) and we had only named him moments before (and in truth, because he needed one to be baptized, the baptism was the sole reason we finally settled on a name). The pastor had to wear gloves and with one hand reached into the isolette and using a syringe dropped a few beads of sterile water on his tiny head and dabbed it with surgical gauze. Don't get me wrong. I am so grateful that the pastor held this ceremony and that the NICU accomodated my request. At the time, although my head was so fuzzy I don't remember a word, it had a very calming effect.

More than anything, I arranged the Reaffirmation ceremony because I wanted to replace the memories of that scary, emergency baptism with celebratory memories. I wasn't disappointed. The ceremony was touching, as the pastor explained to the thousand people or so in the congregation (I told you it was a large church) about Fletcher's early birth and his fighting spirit and the grace of God that brought him home to us. He touched on his disabilities and asked for the congregation's support and praised God for Fletcher's life and blessed him. Afterward we had a brunch at our house for some of our family and friends (including Fletcher's therapists, who are practically like family now!).

I was really too busy hosting to get any great pictures during the brunch and no flash photos were allowed in the sanctuary, but I thought I would share a few.

Baptized December 4, 2006

Reaffirmed August 17, 2008

Family Photo from the Brunch

At the risk of making this last paragraph sound like an acceptance speech, I can't forget to thank Trevor's brother Todd, who flew in from Orlando, for helping to get our home party-ready. I had a big to-do list and Trevor was tied up cooking in the kitchen most of the weekend. Also, thanks to my sister, Angie, for being an awesome sponsor and also helping with the food, my mom for making the pastries, doing yard work, and watching Fletcher while I cleaned house, my brother Jay for helping Trevor in the kitchen, my brother Kenny for helping with some yard work, and my friend Kim for letting Fletcher borrow her son Gabriel's adorable christening outfit!

First Haircut

One of the items we bid on and won at the Friends of Infant Toddler Services Gala was a haircut at a local just-for-kids hair salon. This may seem like a luxury, but let me assure you, my poor scissor skills (seriously, I was reprimanded over this, in yearbook class, in high school) plus a kid with less-than-perfect head control, is a disaster waiting to happen. So, we decided to do it up professional-style for the First Haircut.

Before: My Wild Man

The First Cut: A Bit Apprehensive

Still Not Too Sure

Maybe It's Not Too Bad

After: My Handsome Little Guy

Never Enough Time

I have all of these grand plans for the old blog, really I do, but man, this parenting thing is a little time consuming, ya know? I really admire those bloggers who actually manage to post regularly. I really wish I could be that disciplined. My main goal for this blog is to have a record. To be able to look back and see what Fletcher was doing and when. Or, if I really get ambitious, maybe I would throw in a few observations or an explanation or two. For instance, I would love to do a post like this one, kind of summing up the little things, the memories that will fade in a few months or years or one like this, which does a wonderful job of expressing the mixed feelings of pride and sadness at seeing your child struggle to accomplish the things others take so easily for granted. I feel like this on nearly a daily basis, and maybe some day I will share these observations and feelings in this blog (by the way, could those boys be any cuter?? They were born the same day as Fletch at roughly the same gestational age, and I really enjoy this blog because it kind of gives me an idea of what Fletcher would like to be doing if his body was more cooperative).

Unfortunately, my main goal has yet to be accomplished. Since my last post we have done so many things. A big trip to Texas to see Trevor's family, including Fletcher meeting his Grandpa Smykay for the very first time, more botox, insurance woes, a golf tournament with Fletcher and me serving as honorary chairmen, the list goes on. I really do plan to blog about some of those things, eventually. Tonight, however, I plan to take a small step toward that goal. So in a year or two when someone asks me what age Fletcher started to self-feed, I can say, let me check my blog... oh, on July 8, 2008 he started to independently eat little crunchies.*

Okay, a couple of clarifications for purposes of full disclosure. I may be stretching when I say self-feed or independently, as I do have to position the crunchie just so, in a way where he is able to hold it but it still sticks out far enough to get it into his mouth. But, to me it is the first step to self-feeding, and the only one we may see in awhile as he is nowhere close to holding his bottle or sippy cup on his own, so I'll count it.

Here is a little photographic proof. I regularly encourage him to hold his finger food or utensils and he always tries to get them into his mouth, and sometimes does, but has problems holding them there (what I call a "feeding drive-by"). The first picture is when I first noticed he was actually managing to eat the crunchie, but I thought he was pinning his arm with the ball and that was how he was managing. But, to my surprise, I took the ball away and he was still managing to get the food to his mouth and keep it there long enough for the bite.

So, there it is, my first pseudo-real-time report about Fletcher's development. Hopefully there will be more timely updates to come.

Until then, I also just have to post my current favorite picture of the little guy. It is just an informal shot Trevor took while Fletch was doing a little stander time in the kitchen the other morning. First haircut is on the horizon, so enjoy the crazy 'do while you can!

* For you non-toddler-moms, a crunchie is basically a cheese puff, but by a different name so we can pretend that we are not feeding our kids junk food.