Krousehouse: Our Journey Through Parenthood. Oh, And Life In General

Bionic Man

2012-02-17T22:32:00.002-05:00

Today Charlie got measured and casted to become a bionic man. He's getting an RGO - a reciprocating gait orthotic - to help him stand and walk. We should have it in a month. This bracing is much more supportive, and much higher, than what he has now. It actually goes up around his trunk and helps him move his legs. Paul, who measured Charlie and casted him, said he hasn't done these for such a young before - but since Charlie is obviously ready mentally and physically, age is no reason to hold him back.

I am glad we are on the same page.

Shunt Watch, 2012

2012-02-16T20:44:00.002-05:00

Charlie has had a shunt to drain fluid from his brain since he was like 9 weeks old. Months ago, we ceased to think about this miraculous little brain-saver...it was working, there were no issues, and we put it out of our minds. Until this past weekend. For the first time ever, Charlie threw up, which for the millions of parents of typical children in this world signals a virus. For us, the first thing that comes to mind is not 24 hour bug, it's shunt failure. We were out to dinner and Charlie barfed at the table, again in the parking lot, again in the car...and by the time we got home I had spoken already to the neurosurgeon. She said she didn't suspect the shunt, because really the vomiting was Charlie's only symptom and a shunt failure bad enough to cause vomiting would usually also cause lethargy and extreme crankiness, among other things, none of which Charlie was experiencing. Charlie had no temperature, but as soon as we got home - things started arriving the "other way" too. This made things look less shunt related, because there is no correlation between shunt failure and poop-plosians. In the course of the night, I spoke with the pediatricians office, who advised me to keep him hydrated...and though the night was rough, by morning things were looking up. Charlie didn't toss his cookies all day Sunday, and ate/drank things that we didn't see again - either way - all day long.

He was fine Monday. He was fine Tuesday. He was fine Wednesday....and then he started getting the sniffles and didn't sleep Wednesday night except for when I was snuggling him (which means he ended up sleeping and I was up all night snuggling - totally worth it though I am TIRED). Then, this morning before going to get his wheelchair he was eating breakfast at school...and he threw up again.

I took him to the pediatrician after getting the wheelchair, and she said he looked great - no sign of shunt issue, she got a urine sample and dipped it - it looked perfect, but she sent it off for culture anyway just in case we have a UTI brewing (can also cause tummy issues). He's getting a cold but his ears are great and his lungs clear....so we go home.

And tonight, after not eating much dinner, Charlie threw up again. And so I am worried, and I am on shunt watch 2012. Either that or Chiari symptom watch, which is even less fun so I very much hope that is not the issue.

It's been so easy to forget Charlie has any medical issues other than some paralysis. I kiss his little behind the ear shunt bump all the time. But now some of those hidden worries are in the forefront of my mind, and it's really no fun.

Diagnosis, Not Definition

2012-02-16T20:32:00.001-05:00

I started this post weeks ago after Charlie's clinic visit, and much has happened since, so I am updating. The first few paragraphs are the original post, and interspersed updates throughout.

But in the meantime, I have to get this off my chest. Yesterday (Remember, I wrote this weeks ago) was Charlie's "clinic" day. Most SB families know exactly what this is, but for anyone not a member of the club - it's a period of time where you go to one location and sit in the same room while a series of medical professionals rotates through. In theory, this is a time saver...you don't have to haul to different offices on different days, etc. You just sit and wait, and everyone comes to you.

In Charlie's case, he see's his orthopedic doctors and/or nurse practitioner, the nurse who sort of oversees kids with Spina Bifida, his urologist, the orthotist (for bracing) and potentially - but not this time - the neurologist. Maybe a nutritionist gets tossed in if needed, and some x-rays (yesterday it was hips). We got there at 8:30 am. We left around 1. At most, 15 minutes was spent interacting with actual people. The rest of the time, we waited in a room and Charlie got bored and annoyed. But that is not really the point of this post, although it does sometimes make me wonder if we should forego clinic for individual appointments, where I think more time would be spend with each patient because there is no rush to the next room full of parents and cranky kid. I digress.

UPDATE: We have pretty much decided to go the separate appointments route for a variety of reasons. I have not done anything about it - like cancel clinic yet - but I am likely going to. If I want to take Charlie to multiple doctors in one day, I think I will just make appointments that way.

The thing is, I feel as if we got nothing done.

Part of that is that I feel the environment is too generalized to kids with Spina Bifida. When you are pregnant with a child who is diagnosed with Spina Bifida, all the medical professionals are quick to say they can't give you specifics about the prognosis because ever case is so unique. Then you give birth, and now I hear all too often words like, "Well, that's Spina Bifida for you" or "That's so typical of Spina Bifida" when I am looking, instead, for solutions to issues my son, Charlie (the individual), is facing. Because Charlie, while dealing with Spina Bifida as a diagnosis, is not defined by those two words - and really no kid is. But, although every single medical professional who deals with Spina Bifida will say to you that each case is different, those same people are all too quick to write things off as typical.

I went to clinic to discuss a couple of specific things. Top on the list - more supportive bracing because I think Charlie is ready for it. He needs this to pull himself to stand on his own, not in his stander. I addressed this last time we were in the office, because I knew he would be ready about NOW. And I was told we would address it next time. As in YESTERDAY. I brought it up, and the first concern was that his heels are too tight, and that, before he can get the bracing to stand independently, he needs a little procedure to loosen them up. This is surgery, under anesthesia, and while it is a very simple procedure, I am not looking forward to it. But the point is - we should have done this procedure already. They knew a few months ago he would need this (because these things are fairly evident), but it didn't get addressed until yesterday, when I wanted to talk about standing.

UPDATE: I talked with a few people, including Charlie's PT and the PT who helped us get his wheelchair, and determined we wanted a second opinion. We got that second opinion, and as we hoped, he recommended no surgery for now. This was our desire because, although surgery is what we want when it is needed, we don't want to do it for no good reason at all. The second opinion doctor said that, with bracing and standing, Charlie's heel could loosen up on it's own and that, if it didn't, we could look at surgical options. But that, since it could loosen on it's own, he would suggest we give that a try.

Then they said, "That will put him closer to two, which is what we generally want to be at before we go with that kind of bracing." Oh? Oh? Because typical kids are pulling up to stand at less than one, and my kid is desperately trying to pull to stand and he can't, and standing and perspective are important for learning and development, so I really don't get the need to wait until he is two, or even two-ish. Here's what I think it is - two things: 1) We go to Shriner's where care is provided at no cost to families. This is great, but not the reason we go there - we go there because we thought/think they are the specialists in this field for kids. But, I think they hold off on some bracing in order to not have to replace it as often. 2) Because they have created a standard - everybody at two - and they are not looking at Charlie as an individual. This pisses me off, frankly. So, that didn't get done, and we got a date for a surgery I don't want Charlie to need, but which should have been done already if he did need it.

UPDATE: The second opinion ortho, who we might as well just start calling the new ortho, also wrote a prescription for bracing so Charlie can stand, as well as night AFO's which will theoretically help with the lengthening of the tendon in Charlie's heels while he sleeps. Also, and we have not determined whether or not we will discontinue use, he doesn't really hold much stock in the CHO brace Charlie wears at night for his hips. He thinks it doesn't make much of a difference one way or another, most of all because with kids who have SB a muscle tone issue is the problem and it can't be helped with a brace.

They also aren't discussing wheelchair yet - which doesn't matter because I have already ordered it and it will arrive next week - but still...isn't it time for independence? I didn't even bring it up. But again - I think, holding off on equipment until kids are older and bigger, which allows the equipment to last longer and also simply creating a standard for everyone instead of looking at individuals.

UPDATE: See posts from earlier today, we have the wheelchair and love it. He has figured out independence and now screams if I want to go a different direction than he does. He sure is almost two.

Let me say - I'm am totally not against judicious use of resources to make sure the most can be done with what's available. I am all for using resources in a most efficient manner. But not at a sacrifice of great benefit...only when the cost/benefit ratio is negligible.

Next, urology came in, looked at his chart, realized he was due for a test and ordered it, and left. Well, that test should have been ordered and done already and we should have been getting the results yesterday. But whatever. We waited hours to hear this - you need a test, now schedule it for another appointment, and then we will need a followup. Great.

UPDATE: i will likely just schedule this outside of Shriner's at the hospital

List item number two. I had a question for anyone who would listen about a wound care issue that I won't detail here, but I basically felt as if they said "Ah, it's SB - it's gonna be an issue." Um, no. That is not an answer for me. It will need to be resolved. His name is Charlie, not SB, and this has a solution somewhere, thanks.

UPDATE: We finally got the name of and visited a wound care doctor. Personality wise, he left much to be desired. He basically inferred we were somehow neglecting Charlie's care, which cause me great offense. I'm glad Ryan wasn't there, because he might have decked the guy. And, he gave us a cream (you guessed it, we already have the cream) and told us the best thing is "off loading" the area, or keeping the pressure off Charlie's tail. Hard to do with a little kid, but we are trying, and the wheelchair should help because he will sit properly and be stable. The last thing he said at the end of our visit was, and I kid you not: You know, you need to get this taken care of. People DIE from things like this. Did I need that? Really? That's why I am here, thankyouverymuch. Jerk. He has no kids and mostly deals with old people, so that's his excuse I guess.

Summary of clinic: Four and a half hours. 15 minutes of face time. A surgery I don't want, but which should have happened already, no bracing for standing/walking, no good advice for an issue we have, no urology answers, more appointments.

UPDATE: So we are likely going to individual appt. route for a variety of reasons, but most important - for individual attention. At clinic the doctors and nurses are rushing room to room like herds of cattle, and I think there is less individual attention for Charlie. This is the most important reason we shall go individual with out appointments. Plus - we have so many specialists not seen at clinic - gastro, neurosurgery...seems we could make better use of our time scheduling on our own is all.

Twistin' in His Twist

2012-02-16T18:36:00.001-05:00

We Just Keep Rolling

2012-02-16T18:04:00.000-05:00

The wheelchair thing can be difficult for a parent to wrap their mind around. It was for us. It's easy to get caught up in the walking issue. Will he? Won't he? Shouldn't he? Why not? When we found out Charlie would be diagnosed with Spina Bifida, walking, for me, became a sort of holy grail. I really put a lot of weight on whether or not Charlie would walk functionally, and I was afraid he would not. At times I lost the big picture to focus on that tiny detail of walking. I wouldn't think of how healthy, smart, adorable, perfect, fabulous Charlie was - instead I wondered if he would walk.

Over the last 20 months, I have realized - and come to terms with - a few things.

One, Charlie probably won't walk functionally with current technology. He will probably (maybe) walk with lots of bracing, but it will be energy consuming and at a slower pace than his peers. The purpose of standing and walking for Charlie, at least for now, is not mobility as much as it is for bone strength and cardiovascular health. Maybe those exoskeleton walker things will become a real world possibility in Charlie's lifetime - maybe even in his youth - but for now, with what is readily available, we are pretty sure Charlie's best and quickest mode of regular transport will be a wheelchair.

Two, walking is not the holy grail. It's something most of us take for granted, but it's not the back and forth movement of two legs that matters, it's what that motion allows us. Independence. When we learn to walk as a baby, we are gaining independence to go where we want and when, to reach things that are on new levels, to stop relying on someone else for every little thing. I've found it's not walking that is the holy grail at all, it's independence. For Charlie, independence can start to emerge with a wheelchair in the same way another child gains independence on their own two legs.

Three, it's not about me. It was hard to come to terms with Charlie needing a wheelchair, but I realize it's not about what is hard for me, it's about what is best for Charlie. Having a wheelchair now, so he can be eye level with his peers and reach things and go places on his own free will - or wheel - is what's best for Charlie.

So, Charlie got his first brand new, all his, perfect fit wheelchair today. It's the TiLite Twist, and he is possibly the first kid in Florida to get this brand new model. It's red. It's (really) light. It's cute. It's fast. It has light up castor (caster?) wheels and super easy to roll tires. It was made by someone's hands to Charlie's specific measurements. And, because Charlie has been fortunate enough to have a practice chair at home and a Ready Racer at school, he is already a pro.

Charlie didn't feel his very best, which is another post all together, and he was tired because his nap was brief. Plus, he is refusing to smile for my camera these days. But believe me, when he was rolling we had some smiles. Video to come (soon).

Those are Mr. Gary's arms - he is with a local company called Custom Mobility.

Ms. Lauren, the PT who helped us choose and order Charlie's chair, gave him Choo-Choo stickers. She knows the way into Charlie's good graces.

Unsolved Mystery

2012-02-14T19:34:00.001-05:00

We had a very sad thing happen at the Krouse house last night. Our beloved pup, Buckeye, passed away. He was the very sweetest dog, although he drove me insane sometimes. OK, most times. But we loved him. I can't prove it, but I think his passing suspicious...remember a few months ago the chicken incident? Let's just say it's not outside the realm of possibility that the words of "Ned" may ring true. That if Buckeye was in his neck of the woods again, he might not come home. Buckeye got out on Sunday, and he did come home, but by Monday night he was displaying symptoms that he had never before displayed, and were they attributed to the natural progression of things I would have expected them to come on slowly. I could be wrong, and the truth is I'll never know. Maybe I am just a conspiracy theorist.

Regardless, Buckeye joined our first dog, Libby (Cancer), our cat, Cali (old age), and our African Grey, Waffles (still a mystery), at the Rainbow Bridge. I hope they are playing happily.

Well, it just passed me by...

2012-01-17T21:37:00.000-05:00

I just thought I would share something that, to me, is exciting and worth remembering. And it's something I barely remembered. Or, at least, it barely registered. The second anniversary of Charlie's diagnosis was just after Christmas. On that day I recalled the significance, but only because it was so close to Christmas. I really believe, had our anniversary been in, say, the middle of June, the date could have passed and I would have found myself thinking....hmmm...was it this day? Or that one?

Of course this is not because that date was not significant and life changing and terrifying. But simply because we are so busy with life, and the wonder that is Charlie, there was little time to dwell on those most terrifying moments. And, all I have to do is take a gander into those big baby blues my boy batts my way, and things are not nearly so scary after all!

On Target

2012-01-09T21:12:00.003-05:00

Or in Target, as the case may be. I got a few seconds of Charlie in his new dynamic stander when we let him loose over the weekend in the produce area of the Super Target. I only got a few seconds cause he wasn't hanging around for video. In this clip, an employee narrowly misses getting mowed down, but he got much better with navigation. By the time Charlie was done, he was rolling up and down aisles, turning corners and turning himself around pretty smoothly. He would get going pretty fast and one hand would get ahead of the other, which would result in a crash into shelves - but over all, he improved in that one shopping trip by a lot. Charlie didn't knock anything over though. He did wear his daddy out, because daddy chased Charlie while I knocked out the grocery list. Charlie loved the whole concept of going where he wanted - with the key concept being where he wanted...when we turned him, stopped him or redirected him, Charlie screamed in protest. He has a ways to go in the following directions and manners department.

We drove into the parking lot of Target, got out and strapped Charlie into his stander, and then rolled past parked cars, across the lane in front of the doors (looking both ways) and into the store as a family - all three of us on our own power.

As we headed up the ramp onto the sidewalk and through the sliding doors, a woman said, "He is so strong."

Soon after, as Charlie zoomed ahead past some fruit, another woman said, "Oh, how cute."

Now, a statement like that about Charlie being cute in his little stander, would bother some people, some parents. They would find it condescending and maybe it is, because it's not really cute that a kid needs something like that. It doesn't bother me though, because it's true. Charlie is so cute. In his stander, and out of it, and people are bound to notice. In fact, Charlie invites attention by saying "Hi" to everyone we pass. Also, the stander is little and cute. It's like a miniature, and everything miniature is cute, isn't it?

Of course, Charlie draws a lot more attention in a lime green contraption with huge wheels flying through Target at full speed than he does in the basket of the cart, and people are bound to want to say something.

They want to say something that encourages him and us, and when they don't know what to say, they say he's cute. And that's quite all right, I'll take cute.

However, I really loved when the first woman noticed how strong Charlie is - because he really, really is. We also got several people who mentioned how great he was doing and how fast and energetic is was.

We got one dirty look - well, more than one, but all from the same person - from a woman in workout clothes with her two kids and her husband. I think she was annoyed because Charlie was sort of flying about. I get it, but I don't really know how to teach him public wheeling etiquette without getting out there and learning on the job so to speak. I mean, we kept him from hurting himself or anyone else, and nothing got destroyed. He didn't even come close to hitting her or her family...but we were sharing the same aisles, and he would get louder sometimes. I just smiled at her and dared her with my eyes to speak up. She didn't.

This stander is a big step for us and Charlie, and taking it in public for the world to see what's supposedly wrong with my child is hard. It was also very freeing, and not just for Charlie who loved his independence. It was freeing for me too. I find that I will often tug Charlie's pant legs down to hide his braces from prying eyes, or bask in the fact that, in his stroller, no one is the wiser that Charlie can't walk. I left some of my hangups about people seeing Charlie as different in the car when we headed into Target this past weekend, and I realized something.

Charlie is different, perfectly, beautifully, blessedly so - and hiding it really does no one any service. The world deserves to see how different is fabulous, and might just run you down if you don't get out of the way.

Little Drummer Boy

2011-12-26T16:43:00.003-05:00

Charlie is officially a rock star. Grandpa Tom and Grandma Mary Beth picked this up in their travels for our little musician in the making. His dancing shows potential for groove, so it will be no surprise if he is a prodigy.

Christmas Day

2011-12-25T20:00:00.000-05:00

Ryan's family came over for Christmas day, and the kids opened gifts. Charlie has really gotten the hang of unwrapping presents! We went a little Thomas crazy with Thomas books, a whistle and a remote control Thomas. He took the whole thing very seriously.

Merry Christmas, Yall!

2011-12-25T19:53:00.001-05:00

I wasn't sure Charlie would have much of a reaction to Santa's leavings this morning. After all, he had no clue who Santa is, or that he was coming, in spite of what we had told him. But this morning on his way into the living room in his Christmas jammies, Charlie said, "Ohhhhhhhhh..." and took off for his new toys. This tent was deal, and he may just love it best of all. I personally love the little dog guitar...if you leave it alone it whines like a puppy! Daddy is a fan of the train set, which Charlie also loves. This is the beginning of his Thomas collection, and Charlie doesn't yet have the hang of running on the tracks. But he says, "Doo Doo" and chugs along.

Wild Wonderland

2011-12-23T21:52:00.004-05:00

I really wish I was a super photographer, or at least a great photo editor. Since I'm not, this is what you get. Ryan and I took Charlie to Wild Wonderland at the zoo tonight. For us, it was a little bit "is that all?" but for Charlie, it seemed truly magical. As we rolled into the entrance he was grooving to the Christmas music so much that his stroller was rocking side to side. As we strolled through the lights, all I could hear was Charlie exclaiming "ohhhhhhhh" over and over again, mixed the the occasional "balllll" when we passed a brightly lit ornament.

Waiting to go in...

The sugarplum fairies, which are an advertised attraction, were....plastic dolls. I don't know what I expected, but it wasn't plastic fairies. Oh well, Charlie was impressed!

He was checking on the carousel for the first time here, and he was fascinated. Love that expression!

At first he was thinking, what's the big deal...

Then we started moving and he grinned and giggled...and held on tight.

You know it's Christmas in Florida when you have penguins right next to the

decorated elephant tree and the...

pink flamingos.

There were also reindeer. We reminded them to stop by and see Charlie tomorrow night, along with Santa!

Playing With Cars With Boys

2011-12-19T20:52:00.002-05:00

I have a friend who wanted to hear Charlie say some words instead of read a list of words Charlie says, so tonight while playing with a new toy Nana and Papa gave Charlie for Christmas, I had him parrot some words so she cold hear his sweet voice. Charlie obviously has a mind of his own, and when he doesn't want to say something he doesn't...and sometimes he just says "no". Sorry for the poor lighting!

Also - notice how he gets on his knees. I will have to get video of this, but Charlie is desperately trying to pull up to stand. It's kind of sad that he can't, kind of inspiring how hard he tries...and we can't wait til we get to Shriner's in January to take the next steps for bracing. This kid wants to go. Also notice Charlie "reading" the directions before playing. That's totally what it looked like he was doing!

First Christmas Events of 2011

2011-12-18T18:33:00.000-05:00

My parents will be hanging with out of town family on Christmas morning, which we usually spend together (but I'm not bitter or anything), so we had Christmas morning with them today. My sister and her boyfriend, Atreyu (think Neverending Story), came to town and Charlie sort of got the hang of opening presents. He made out like a bandit, which is no surprise, and the big guy in red doesn't even arrive until next weekend! We don't want to spoil Charlie rotten, but we do want to spoil him a little. Here are some highlights:

My mom's tree was lovely, and so was her decorated home - of course it always is.

Aunt Sara's boyfriend, Atreyu, with Charlie

My mom always wanted a big bow on a car, like in the commercials...she got her new car a few weeks ago, but dad hunted down a ginormous bow to surprise mom...

I love this photo of my mom and Charlie. He was very tired by this point!

2011-12-14T21:48:00.001-05:00

A Step Forward? Or Maybe a Roll...

2011-12-12T20:39:00.001-05:00

I really thought this would be a sad, sad day. I thought the day I actually took my child to be fitted for his first wheelchair would make me cry. But so far? No tears at all. Is it the fact we have had a practice chair at home for a few months? That he has the Ready Racer at school? Who knows. Whatever it is, today Charlie got fitted for his first "all his own" wheelchair. One made just for him, and we should get it in a month or month in a half I think, depending on the speed of insurance.

There is the PT in Tampa who specializes only in wheelchairs and similar equipment for pediatric patients, and we were referred to her by a doctor a few months ago. I didn't have time to make the appointment until last week...or maybe I wasn't ready to make it. Either way, today was the day, and she is fabulous. We also met a rep from a local medical supply company who also specializes in pediatric equipment. Here is Charlie trying out a brand new chair. This chair isn't his specific one - his will be, for one, RED! And slightly bigger in the seating area. But otherwise, this is it. It's called the Twist and is made by a company called TiLite. Apparently, this chair is brand new - it was just released to the market within the last couple weeks, and Charlie may be the first kid in Florida to get one. What we like about it....it's super light. It's really cute. It has a single handle option for us to push it, so there is less to get caught on in the house. It has a single tip wheel instead of two. Did I mention it's cute? And he can maneuver like a rock star.

As I have mentioned, he has a cute little chair he has practiced with at home, for which we have been very grateful - but we are happy to get this one, as it is the perfect size, the lightest weight, handmade for Charlie. We expect him to grow in it, and use this chair for about five years.

While there, Charlie also tried out - and we ordered (as long as approved by insurance, which I am pretty sure it will be) - this dynamic stander. For those who know about these things, it's the Rifton, and Charlie's will be lime green. Once again, he took to this right away. He screamed when we took him out (which I partly attribute to lack of nap)!

Here is a video of his dynamic stander skills. Or should I say mad skillz. And really, this is before he got going. He actually ended up wheeling to the door of the large room we were in, and banging on it to go out. We didn't, because we don't want to create a little demanding monster, but he wanted to go, go, GO!

When I saw how happy he was, how he was squealing and rolling. How he wasn't sad, how he was....free...I couldn't be sad either. I was thrilled, thrilled for his independence, and his desire to seize life for himself.

Ol' Saint Nick

2011-12-10T16:36:00.001-05:00

Last night we trekked to the mall for Charlie's (2nd) annual visit with Santa. We got there at almost 6, and found that Santa was going on break at 6:30 for a half hour. We were second in line for his return at 7, so we decided to stick it out. We got Charlie some Chick-Fil-A and settled in for the wait. And we waited. And we waited. Santa didn't actually go on break until after 7! We thought, oh no...Charlie will melt down. But he didn't! Charlie was pure perfection the entire time, and we didn't see Santa until 7:45!

All fear that Charlie would scream on Santa's lap melted right away...as you can see, he was perfectly thrilled with the giant elf in red. Santa doesn't look super jolly though. I guess hundreds of kids on your lap all day will do that to you. Of course, I would have taken a screaming photo too...Charlie is a really cute cryer :).

Note: After I posted this I realized there is a little white spot on Charlie's tongue that I thought was light reflection...turns out, upon closer inspection, it 's CHICKEN. From Chick-Fil-A. Ha!

When we neared Santa's throne, we passed through the fake snow of this little winter wonderland hut, and we sat Charlie in the middle. He was quite amazed, right up until the little girl before us picked up a big handful and dumped it on his head. Then he was not amused.

Belated Thanksgiving

2011-12-04T10:13:00.001-05:00

We had Thanksgiving dinner a little late. My mom whipped up the traditional meal last Sunday. Naturally, all that delicious food was available and Charlie was interested in only a roll. Looks like he had enough because, as is the case for males in many homes, after our meal, he passed out on the couch.

Oh, Christmas Tree

2011-12-04T10:01:00.001-05:00

Saturday night we put up our tree while Charlie slept. It's really pretty and has my favorite Christmas tree attributes...it's full and fat. Now, I can only hope Charlie lets it stay upright and doesn't take it out in his wheelchair. Just in case, I switched to shatter resistant red and gold Christmas balls. Although, I kept the crystal icicles...

In other news, Charlie is enjoying the Christmas jammies Nana bought him, and I am enjoying the humor of them - Let it Snow? They sell these in Central Florida? Ha!

Note - Charlie only plays with this stacking toy, which he loves, when supervised. I absolutely recognize the potential danger associated with the base, and am extremely careful with him!

Moms Away From Mom

2011-12-04T09:39:00.001-05:00

My biological parents split up when I was little - like two - and I split many a holiday and regular day between two, and when my mom remarried my second dad, three, families. Now, I love my dads as much as the next girl, and am lucky to have two...but a dad is not a mom. So, when I was with dad number 1 and my mom wasn't there, I was lucky enough to have a couple of stand in moms....moms away from mom, if you will.

My dad has two sisters - Susan and Lynn, and they have always loved me like I was their own. At least, I feel that way. Charlie met Aunt Susu a few months ago and a couple of weeks ago he met Aunt Lynn. I guess to Charlie, they are great aunts. Aunt Lynn still gets down on the floor to play, and is as fun as ever. And I am reminded at how fortunate I am to have extended family to love us, and especially Charlie, so very much.

Giving Thanks

2011-11-24T07:31:00.001-05:00

I honestly do give thanks every single day for the most important things in my life - God's most precious gifts - Charlie and my little family, my husband, Ryan, and our parents and families. Also, good jobs with employers who care about us as individuals in addition to devoted workers, a safe home to live in, all the necessities and many luxuries, friends we love, doctors who are knowledgable and (mostly) compassionate, and more.

Sometimes I forget to give thanks for God's little gifts - like the fact that my child can squirm during a diaper change until I have control only over one foot, because I am holding him by the ankle, but the rest of his body in turned around and he is trying to get away. That he can crawl so quickly away from me that he is in another room and up to no good before I can turn around. That he has gained such independence that he refuses to allow me to feed him at all, even when we are in a hurry, and he wants his own spoon or fork. That he has such a voice that he will let us know he is happy or mad loudly, and increasingly with words - a loud "NO!" or a thrilled, "YAY!" or a demanding "BALL!" - even if we are in a restaurant and the other patrons are turning around. That there are many, many moments each day that I look at Charlie and don't think of Spina Bifida at all, because it fades behind his beautiful smile, sheer determination and his strength.

We planned to travel a couple hours away to be with Ryan's family, but as often happens with Ryan's job...our plans were thwarted. I had even made yummy desserts that I found recipes for on Pinterest. Peanut Butter Chocolate Eclair Cake and Pecan Bars...see below. They are so very delicious. I feel sorry for those who missed out.

Poor Ryan worked 24 hours straight and didn't arrive home until Thanksgiving morning, exhausted.
So we stayed in town and, when Ryan was rested and hungry, we went, just the three of us, to Cracker Barrel for a turkey dinner.

I also tried to get a few pics of Charlie in his cutie fall shirt, but he was pretty much interested in looking at everything else. And, I need to spray paint the wicker furniture, but that's beside the point. I think in the third photo down he was saying No-No!

Thanksgiving was also Charlie's 18 month birthday. The most amazing things he has done lately have to do with words - he is gaining words daily, and these are the words/sounds he has going right now with regularity:

Mama/Mom

Dada/Dad

Nana

No/No-No

Dog

Ball (favorite)

Choo-Choo (sounds like Doo-Doo, boy was I glad when I realized what it really was)

Bye

Hello (while answering "phone")

Meow

Baaaaa (like the sheep says)

Moo

Mine (another favorite)

He also says "nine" but I'm not convinced as to what he refers to.

Charlie's first sentence was "Bye Dad" week before last and I am pretty sure he is trying to say "I love you" (melt my heart) and a variety of things to the dog, like "Get down, Buckeye!"

His voice is the sweetest, and we can't get enough!

Today it is a Wednesday

2011-11-09T10:08:00.003-05:00

And Wednesday is a hard day.

Three years ago it was a Sunday. Elijah Vance Krouse was born, stillborn. Elijah would be three years old today had he survived. There is still not a day that passes that I don't think of him. Sometimes I still cry for him, though not as often. I still miss him desperately, and it still hurts inexplicably painfully. Sometimes I look at his photos given to me by the hospital, and sometimes I talk to his ashes. Charlie fills some of the void in my heart, but there is always a place for Elijah that remains empty, and I believe will never be full. I don't even want it to fill up, because I always want Elijah in my heart.

There are no words to adequately describe what it feels like to lose a child, any child. So, I will stop right here and say only that I wanted to recognize Elijah's birthday, and also his passing. I wanted to acknowledge that we have two children instead of only one. I wanted to say Elijah was planned, he was wanted, he was loved, he is still loved and we will meet again.

Until then, Elijah, watch over your little brother.
Love, Mommy

Monkey Business

2011-10-31T21:57:00.002-04:00

Our little man made the cutest monkey around. Well, for the two and a half seconds we could get him to keep his ears on anyway. This is on my mom's front entry. We bribed him with a bag of M&M's (to hold and shake, not eat) to keep his hands occupied and away from his ears.

He is racing towards my mom, with a rescue me from the mommyrazzi look on his face. Below, he was happier stripped down to his bare, um, feet, but not at all sure about the doorbell ringing. It rang just before I took this photo and he is right in front of the door. You can see, he took off into Nana and Papa's room - he wanted nothing to do with whatever was on the other side of the door!

HAPPY HALLOWEEN!

The Wheels on the Bus

2011-10-23T20:09:00.002-04:00

You wouldn't know what this was unless you knew what this was. Does that make sense? I guess I mean, you have to have the motions in context to know that Charlie now does the Itsy Bitsy Spider and the Wheels on the Bus. And they are distinctive, but similar, and only a connoisseur would know the difference. Nana and Papa are on the road and wanted to see this, which is why I am putting it online without getting a better take, it's just cute enough as it is.

This kid!

Exit the rear in an orderly fashion

2011-10-21T18:00:00.000-04:00

This is standard for photos these days. Charlie is in motion - a blur, really. And I love it. A couple weeks ago we visited with Nana and Papa at their house, and Charlie LOVES. HIS. PAPA. Papa gets down on the floor to chase Charlie all over their home, and Charlie laughs and takes off, and then peers over his shoulder to be sure Papa is in hot pursuit. It is a favorite game.

I want you to take note of that Smurf shirt. I loved the Smurfs as a child. I wanted to be Smurfette. And now they are back.

So, let's talk a little poop. To make a long story short, here is the background. Kids with SB have a tendency to get, ahem, backed up and that can cause all sorts of problems, not the least of which is a tummy ache. But, we didn't think Charlie was backed up because, well, the poop was coming all. day. long. So, when we were referred to the tummy doctor for a diaper rash issue and she asked about Charlie's, um, regularity, I was calm, matter of fact and sure he wasn't backed up. She wanted an xray, just in case.

And the xray said: My kid is full of it.

So, we needed to clean him out, they told us how to do it, and we went home prepared.

But, they didn't have an answer to the diaper rash issue so they send us to the dermatologist. Our appointment was on day one of the clean out. We didn't reschedule because we thought that was equally important. And how much poop can be in one small child, anyway? Right? RIGHT? Right!

Ha.

Now, to the funny story. I went to the dermatologists office that day with Charlie and two changes of clothes. We got called back into the exam room and told to strip Charlie down, and that we would soon be visited by the physician assistant. I smelled something foul afoot from Charlie's nether region and went about changing him. You know, so he would be fresh when someone came in.

So picture this: The exam table is in a chair position, because most patients probably sit up in that office, and it's covered with exam paper - that white roll paper stuff. I lay Charlie on the seat of the "chair" because I don't know how to make the chair lay back. I strip him down and start to undo the diaper. In the meantime, he gets tired of laying on his back and twists his body to crawl away, as he so often does these days during diaper changes. Or clothing changes. Or any other time. (I really do love that.)

Ok, Charlie's body is twisted so he is trying to crawl and I have him by one leg, with his diaper half off and wipes at the ready. When the diaper shifts just slightly and Charlie's "clean out" lets loose and poop, liquid, projectile poop, shoots across the room. I am not kidding. It hit the back of the exam table chair, soaked the exam paper, hit my hands. It hit the wall. It was everywhere, and Charlie was trying to crawl, and he was losing traction because his hands were slipping in poop.

And right at that moment, the door opened and in came the smiling, unsuspecting physician assistant and her tech.

Their eyes got big as saucers and I could see in their expression the question they were asking themselves: Can we walk out like we didn't see a thing?

Thank goodness they didn't. One person grabbed Charlie's front end to entertain/keep him still. The other got stuff to help me clean, and I wrestled Charlie's back end into a fresh diaper, cleaned the exam table, washed my hands and stood by with a wriggling fountain of poop water while the room was disinfected.

Before we got home, Charlie had gone through both outfits and was wearing only a onesie, no socks. We were out of the house only an hour and half, max. Fun times, memories that will last forever!

Charlie was a Race Car Driver

2011-10-20T20:45:00.000-04:00

This one doesn't end like the Primus song! Ya'll, I've got a lot to say. I have blogs in my head about all kinds of things, from poop to politics and back again. But right this second, I am basking in the glory of this sweetness in a hot, red convertible.

I may have mentioned before, there is this newer program in Hillsborough County that is run by the Children's Board - the goal is to get kids with special needs ready for school when the time comes. Traditionally services start when kids are three, but they are kind of experimenting with starting earlier to see if that makes any difference. They are only working with a few daycares so far, and Charlie's daycare is one of those. We had our first meeting when he was a few months old, and they have done things like provide toys that specifically help Charlie reach the developmental milestones he is working towards. For example, when PT wanted Charlie to reach for things, they bought toys specifically for Charlie to use (at school) that promoted reaching. They also pay for extra training for Charlie's teachers, review lesson plans for Charlie and contribute to them and other things like that. They have several kids they work with at Charlie's school, and I really feel lucky he gets to take advantage of this opportunity. The bottom line is, we can't purchase every last thing Charlie could benefit from, and we are not early childhood education experts...and I honestly feel Charlie is passing some of his typically developing peers in things like language development because of the extra attention (and his awesome teachers). Well, and the fact he is BRILLIANT.

This week, Charlie's new "toy" was delivered - in the form of a shiny, cherry red race car. It's a Ready Racer to be exact. It's made out of, well, soft foam of some sort, so if Charlie runs someone down, they don't get hurt. He ran into my leg today, so I can vouch for this. Charlie's PT recommended the Ready Racer, and the program purchased it, and now it's available for Charlie to use during the day at school.

Yesterday was his first spin in his new ride, and Charlie went around the halls visiting teachers and others. Ryan picked Charlie up yesterday instead of me, but when I got to school today the assistant director was ready with a video on her phone of Charlie from yesterday. Then she went and got the car for us to try it out. We buckled him in for another ride so I could check it out and take some photos (with my phone). We played in the halls of Charlie's school for at least a half hour, and he yelled when I took him out. He loves it. He's a bit camera shy these days, being coy...so he's not as talkative in the video as he was when I wasn't videoing. I don't know how, but this kid knows!

I think Charlie in this little red race car is the cutest thing I have ever seen. And all the employees of Charlie's daycare standing at the end of the hall cheering for him is a close second. I just love how they love him.

2011-09-24T07:36:00.001-04:00

This video is from several weeks ago, but it is pretty funny. Charlie rediscovered frosting while enjoying a mini cupcake, and he grooved throughout.

For My Memory

2011-09-11T20:29:00.001-04:00

As if I could forget. 10 years ago, I was driving to a speaking engagement for work. It was a meeting of elderly people, and they gathered at a local hospital in a conference room. On the way there, I heard the news of the first plane crashing into the World Trade Center. The reports were confusing, and I wondered how in the world someone missed seeing a skyscraper.

I did my presentation none the wiser as to what had changed that sunny morning.

When I left the conference room and headed into the parking lot, a young woman was sobbing in her mothers arms. We were at a hospital and I thought she may have been in such pain she couldn't walk, and I asked if she needed me to get a wheelchair or perhaps a doctor or nurse. She said no. She asked hadn't I heard. We had been attacked.

I rushed to my car and listened to the news on my way back to the office, and I cried at what I heard, although I didn't know even the half of it. Our office is pretty close to MacDill Air Force Base in Tampa, which is Central Command for the military, and, coupled with the fact everyone was upset, checking the news and yearning to be with our families, we were all sent home just in case anything happened close to home. Because, of course, the perpetrators of this evil act had spent quite a lot of time nearby preparing for that fateful day.

I sat on my bed watching the news all day. And the next day we were forecasted to have a hurricane, so my office was closed again. And I sat watching the news all day that day too, watching replay after replay of what had happened, and footage of people worried for their loved ones taping signs all over Manhattan, and listening to the awful details as they came out.

I will never, ever forget where I was 10 years ago when we were attacked on American soil, when thousands of innocent people died in a matter of hours, when husbands and wives were left without spouses, and children without parents, parents without children and so on. It's like when my mom describes where she was when she heard about Kennedy being assassinated, or how I know I was standing on my fourth ground playground in a purple shirt when the Challenger exploded midair above us. One of those things you wish you could forget, but you just can't, and how even now - all these years later - thinking them through brings back the emotions and tears that came during those first moments. I don't know how I will explain this all to Charlie one day.

We will never forget, and we shouldn't - not the lives lost that day, or the lives lost since in service to our country. God bless them, God bless them all, and hold them in his arms. May comfort come to the families who have felt this loss firsthand, and all the rest of our country and the world who mourn with them.

Oh, time flies...

2011-09-11T19:10:00.004-04:00

It's been a while. Here are a bunch of clips we have taken over the last couple of days. Charlie had his 15 month check up last week and it went great. He's doing absolutely everything he should be and, in our opinion - confirmed by the pediatrician - he is a genius. Well, maybe she didn't say that exactly. But she did say he is very bright! We'll take it. Charlie has both grown and slimmed out. At 12 months, he was in the 4th percentile for height and the 90th for weight. Now, at 15 months, he is at the 40-something percentile for height and 60-something for weight. So much better! And, because he has grown so much he already had to have his stander adjusted by Shriners.

Charlie at his 15 month check up looking cute. When the doctor left the room, she stopped at the door and looked back at Charlie and said, "You are just too cute." She's right.

Waiting at Shriner's to get his stander adjusted. Peeking around the corner, looking like he's thinking what we were thinking, which was, "Come on people!"

High fives after a great 15 month appointment. Or maybe during it...

Ya'll know Charlie is my first real experience with child-rearing, so I don't know what age all these things are supposed to happen. Maybe you're sitting there thinking, "Well, he should've been doing THAT months ago." I, however, am totally impressed with my kid. I literally watch him learn new things all the time, and that is the very coolest feeling ever. So, here's a quick rundown of some impressive feats by our little man. Some of these tricks can be seen in the videos. Lucky you!:

1. He's stacking blocks, up to three at a time.
2. You know those little buckets with the top that has different shaped holes? Like a star, square, circle, etc.? Charlie is getting the little blocks that match the holes up to the right spot most of the time. He doesn't always have it in the right position to get into the hole, but it's at the right hole. And if it doesn't go in, he leaves the block propped right on top and claps for himself anyway.
3. He waves bye-bye and sometimes hello.
4. He can find his ear. He also touches his ear when we ask about his nose...
5. He is pretend playing - he will put a toy phone to his ear and say hello. I only know he is saying hello because of the phone as a prop, because it doesn't necessarily sound like "hell-o".
6. Let's see, what else...Charlie plays games of his own making. I have to upload the video (it's not below), but he was at my parents house the other day and started crawling up to his Papa and lifting his arms to be picked up. And, when Papa went to pick him up, Charlie would throw himself over on the floor and laugh and laugh, like he was teasing Papa. He did this over and over.
7. He thinks he is Homer Simpson's child, even though he has never seen the show. He says "Doooohhhh" just like him. That is below.
8. He will ~~color~~ scribble before he eats the crayons.
9. Oh, and he is interested in puzzles. He mostly tosses the pieces, but he really likes doing it.

The first time we went to dinner and he didn't eat the crayons, but colored a little on the kids menu instead.

OK, here are the videos.

Charlie's Tricks

The Little Simpson

Dance moves cause he's cute

Standing Tall

2011-08-18T18:36:00.000-04:00

Do you think Charlie is gazing at me with adoration? Nope, that's his Papa he is loving as we wait to check in at Shriners this afternoon.

Today was a big day, physically for Charlie and well, emotionally for me. We picked up Charlie's stander today - which is awesome! My little boy stood for the very first time ever this afternoon, and I didn't miss it. I got to be front and center, and my dad got to come along too - after Monday night at the pediatrician I was totally not taking any chances, and brought reinforcements. I also had plenty of toys, snacks, water, diapers and wipes, and children's benedryl, just in case (I'm kidding about the benedryl). Turns out, Charlie ate a couple of goldfish and drank some water, but the toys were totally unnecessary. All he needed was Papa to keep him entertained! Charlie really loves his Papa, of course because Papa is nice to him, but I also think its because Papa isn't afraid to be downright silly. Any place, anything to make Charlie smile.

Shriners measured Charlie for his stander a couple of weeks ago at clinic, and today we went in to get it adjusted and bring it home. I did forget the camera - too often as of late it seems - so I have only phone photos of this momentous occasion.

Getting put in for the first time for adjustments and such. Dino, in light blue, is an experienced orthotist, while the other guy, whose name I forget but will learn, is doing his year of orthotics residency. He was very nice, they all always are.

Standing for the first time. Charlie looked everywhere! He was very interested in his new perspective.

I texted this to my mom and she worried Charlie was crying - he totally wasn't, he was cracking up. He loved standing!

I loved that Charlie loved standing, and I loved seeing Charlie standing. I felt oddly weepy at seeing Charlie looking like such a big boy, and at the fact he needed a contraption to do it. Don't get me wrong, I am glad he has the resources he needs and excited for the benefits he will get - cognitive and physical - but there is just a moment of sadness. Of course, sadness can't last long with a kid like Charlie - his smile and giggle can drown all the worry.

They Thought I Had Done Broke Down

2011-08-16T18:45:00.001-04:00

I do not know why I tell you people these things. Also, this blue border is totally random.

So. Last night I made a trip to the pediatrician regarding diaper rash, the never ending worry. There is a place where the skin is degrading, and I can’t seem to get it fixed. Appt. was at 5 but they were running behind. Charlie was super antsy, and getting more so by the second. He started crying bloody murder (I had nothing with me because this was an impromptu visit - a "can you bring him by for a sec" sort of thing) and it was 5:45 and still no doctor. Charlie threw his head in frustration and hit me in the nose, which hurt so badly I had to close my eyes and pray for patience. While drawing his head back from my nose, he hit his head against the wall (I was sitting in a chair next to the wall), which made him not just angry, but sad because it hurt. He screamed louder, with big fat tears coming down his cheeks. I knew he was hungry, and now he was mad and hurt.

And I burst into tears. As I sobbed I recalled some crackers in the car, and sobbing me carried sobbing Charlie down the hallway towards the lobby to go to the car for crackers, and passed a room where I heard a little boy say “That baby is a crybaby and he needs to go to time out.” And then start singing the Hush Little Baby song at the top of his lungs. That made me cry harder.

I got to the lobby, where the receptionist looked at me in horror while I tried to sob out what I was up to. Once they figured out I wanted something for Charlie to eat, three people sprang into action and I ended up with puffs, yogurt melts and apple flavored pedialyte.

Charlie started feeding himself the puffs hand over fist like he hadn’t eaten in weeks. He paused only when the doctor finally came in and he had to lay down and get examined, during which time he screamed. Then he ate puffs. I didn’t even dress him all the way before I ran out of there – He had on a onesie, but no pants, socks, braces or shoes. Then he screamed the whole way home even though he had puffs.

Then, he had the worst night of sleep I can recall. He woke up at 11:30 and every time he got back to sleep was only a few minutes, then he was screaming again. Ryan slept through the whole thing. Finally, after two hours, Charlie ended up in our bed and I was awake all night because he tossed and turned and snuggled so close to me I was almost falling off the bed.

This morning he was happy, but easily annoyed. Saw the neurosurgeon who was GOOD NEWS ALERT: pleased with shunt function and said he was just great and everything is right on track…except language development. WTH? I'm not sure I entirely agree, but it can't hurt I guess. So now he is getting an evaluation by Speech Therapy, and that stresses me out because it’s another thing to worry about and it feels like a personal attack on my child, though logically I know it has nothing to do with that. Feel like I want to cry again. Blech.

I Got My Panties In A Wad

2011-08-15T18:00:00.002-04:00

I'll just start out saying I am no shrinking violet. I have no qualms about speaking up when I need to, and will comfortably stand up for myself, my kid or even a stranger if I get amped up enough. Usually though, I like to go with the flow. This is one of those traits childbearing has brought me. Crazy patience. You accidentally ram me with your shopping cart? Whatever, I've got another shin. You take the parking spot I'm waiting for? OK, I could use the extra walk.

So today, at lunch, I'm hungry and have a very specific craving. Chicken salad. I want chicken salad. Not just any chicken salad, I need grapes in it. Very specific. So I head to the Fresh Market, where I know they have this variety exactly. I beeline for the deli and I spy the chicken salad, and, just as I am about to make my request, another woman jumps in and places her order. I thought to myself, maybe she didn't see me here. Ah, whatever, how long can it take???....

She wants mini pot pies. But there are none at the counter, says the gentleman serving me her. He has to head back to the freezer. Off he goes. So we wait. And we wait. And wait. And the lady looks at me and she says to me, "Now I feel really bad."

To her I said, "Why?"

And she says, "Because I jumped right in front of you, but I only thought it would take a minute."

So, she did see me. She just thought her need for mini pot pies superseded my need for chicken salad. Her quick request would take so much less time than my quick request that she should just put it in there first, but now that her quick request turned out to be a really long one...she felt bad.

OK. I tell her, trying to maintain my go with the flow attitude, "That's OK," when, inside, I'm thinking that's not ok at all. Why? Because, being that I am wearing a dress and that my hips are quite voluptuous, my undies have started to migrate. Down. This is a problem I have, no matter what the undies. My hips are the widest part of my body, after childbearing more than ever, and undies sometimes get a mind of their own.

So I am standing in the deli of the Fresh Market waiting for some pushy woman to get her mini pot pies and get out of my way so I can (finally) get my chicken salad and my panties are making a run for it. They are at my upper thighs. I try to subtly adjust them but an old woman walking by gives me a look that stops me in my tracks.

The pot pie retriever comes back at last, she gets her mini pot pies, I then get my chicken salad and I tip toe in four inch heels to the register hoping beyond hope that my unmentionables don't land in the middle of the pay by the pound candy bins The Fresh Market is famous for. I am wiggling to try to keep things where they are. Probably, it looks like I am dancing out of there. A spastic dance. I pay, waddle out the door and into my car where I vigorously and immediately set about to putting my underthings in their rightful spot. In the midst of this, I look up and see...a security camera. Oh well, I say in my go with the flow way, someone is getting a show they didn't pay for.

Now, I am headed back to work down a three lane road. I am in the left lane and see, ahead, indication that the road is closed for construction and everyone needs to get in my lane to turn into the detour. I am moving along at a decent clip, not too fast, not slow, and I don't have much traffic around me.

But, all the sudden there is a little toyota bearing down on me. It has shot up beside me from basically no where, and is inching towards me sideways while trying to outrun me in a race I didn't know I entered. And as I slow down to let the bat out of hell take the lead I look over. And who to you think it is? It's Mrs. Mini Pot Pies. Cutting me off, again.

To preserve my go with the flow attitude, I let her in front and she whips around the corner...only to find herself at a stand still. Because all the traffic from that three lane road is now on this little side street for the detour, and it's going to take a good while for everyone to make their turns at the next major intersection because there is no traffic light.

What do I do? Well, I decide to go ahead and enjoy my chicken salad while I watch the top of that women's head bob and weave and fume. I'm surprised it didn't turn right around in circles. Poetic justice.

The moral of this story, even if you get your panties in a wad, keep your cool and you'll get to have your chicken salad and eat it too.

Big Boy in a Big Boy Chair in a Big Boy Class

2011-08-11T20:23:00.001-04:00

Alternately titled "No we did not fall off the face of the earth"

We've been busy lately with mostly routine stuff, but there have been some important happenings at the Krouse house. First and most momentous - Charlie is officially no longer a baby, according to school. He has moved up to his next class, and to celebrate, he got a big boy haircut. This is his second full day in his new class, because on his first they surprised me with the transition and I had left my phone in the car. If you look closely, it appears Charlie is wearing his shorts up to his armpits. They put him in "hip helper shorts" to assist him in sitting in a chair. To be honest with you, he doesn't need those shorts for sitting in a chair, he sits in a chair fine, but I had no time to argue that morning.

That same day, I ran across this. Remember when he was teeny tiny and Easter Seals took some promotional photos of Charlie (and other kids) for fundraising and education? This is a brochure about Easter Seals services to the community. I can't even remember him that little!

Charlie has made another important discovery. Books are now for more than just eating. He will sit in my lap while I read, and help me turn pages. Charlie laid on his tummy tonight with this book (that he retrieved himself) and flipped all the pages, looking at the pictures.

Charlie is also now fully engaged with our pets. We have a dog and a cat, for those who don't know, and Charlie adores both. He giggles uncontrollably at Buckeye's (the dog) wagging tail and he wants to pet Max (the cat) desperately. My parents will die at these photos because they would prefer the baby and the animal never to meet, but we figure as long as he doesn't lick the cat or dog, and get's his hands washed after, bonding with animals is an ok thing and plenty of other kids even sleep in the bed with animals and are fine (Charlie does NOT sleep with the cat or dog). So, pipe down mom!

Max, well both animals really, tolerate Charlie really well, but we are careful to watch at all times. We don't want either Charlie, Max or Buckeye getting overly feisty, resulting in an accidental bite or scratch, or an injured pet. This is what happens when playtime with Max is over and Mommy says no more kitty. That's a mad face, and it's calmed down a little from the initial face, which I didn't catch.

Overheard at Work Today

2011-08-11T20:22:00.000-04:00

This was funny, and I want to recall it later:

My colleague (showing me a photo on her phone): This was the spider AFTER I dropped a dictionary on it.

Me (Looking at a photo of a HUGE dead spider): Did the dictionary kill it?

Her: Well, it did after I jumped on the dictionary for five minutes straight.

Clinic

2011-07-27T18:36:00.001-04:00

Charlie had clinic today. He goes to Shriners Hospital for Children and spends the better part of the day there seeing a variety of specialists. Today, he visited with urology, orthopedics, neurology and orthotics/prosthetics. Sometimes he sees a dietician, but he didn't see her today. Charlie has been seen at Shriners for a full year now, first for his club feet correction and now for clinic and all things orthopedic - we are fortunate to have this as a local resource. There are families who drive hours and hours to visit Shriners, and these hospitals are highly specialized to take care of specific pediatric issues AND no one gets turned away. They bill insurance if you have it (they didn't used to even do that) but if there is no insurance they provide treatment anyway. Charlie is well known by all the staff at Shriners, and everyone stops by to chat with him - or he calls them over. Ever the social butterfly....

Waiting with Daddy in the exam room for the first visitor, playing with Daddy's phone. All the rooms are sea creature theme - pretty cute and very kid friendly.

Back to clinic. We saw urology first. This was the only part of clinic that didn't go well today. Not awful, just not how I would have liked. I don't love Charlie's urologist. He seems to be a perfectly great urologist, and can even be kind of funny, but it's a personality difference I have with him. I feel as if he thinks Ryan and I are stupid, and treats us as if we are totally clueless. I may ask him a question I have asked before, because the answer or solution he provided the first (or second or third) time didn't work - and I try slip that in, that I am looking for a DIFFERENT solution, or that I have a suggested solution I have discovered and want a prescription for it. That happened today regarding a persistent diaper rash issue we have, and I had a solution I wanted to try, and I wanted a prescription for that product and he dismissed me. He suggested (again) that I use the suggestion he already made several times, and he doesn't seem to listen to why it doesn't work. Whatever. Charlie's pediatrician will give me the prescription, or - I actually think I can purchase the items I want without one...it's just less expensive with a prescription. I'll deal with one way or another, circumvent the urologist and take his advice with a grain of salt, as always.

This is significant, because Charlie hasn't really formed an attachment to a stuffed animal yet. This one, however, a recently gifted cow (from Nana and Papa) has sparked an interest and he snuggles it whenever we hand it over. The cow also keeps company in the morning when we are getting ready, which makes it ever so much easier.

Next we saw orthopedics - Charlie had another xray of his hips and we found there was no change from previous xrays. This is good news as Charlie's hips are both in their sockets. This is also bad news as one of Charlie's hips isn't as "in" as they would like it. They are changing up Charlie's bracing routine to try and correct it, but are not overly concerned and there is no reason for us to worry. Charlie's feet are as they should be, and that's great news - because it's time for him to start standing! They ordered for him to be measured for a stander (paraplatform is another name), for him to continue with his AFO's during the day as he has been, for him to continue to wear the Dennis Brown bar SHOES at night - but take off the Dennis Brown bar that goes between the shoes...instead, they will have him wear a COH brace...it's this stiff sort of diaper looking thing that goes outside his jammies and holds his hips abducted - or kind of frogged up. This will give his therapist a heart attack, as she hates abducted hips but whatever - the hips sockets need to develop. Charlie's nurse practitioner was very impressed with Charlie's sitting and crawling!

After orthopedics, we saw the neurologist. He was also impressed with Charlie's crawling and nice, straight sitting, and he further assessed that he thought Charlie was developing very well - and was cognitively and developmentally advanced past his calendar age of 14 months in most areas, except of course for gross motor...like walking. I knew Charlie was a genius :). He mentioned that, as best he could tell for a 14 month old, Charlie was bright, attentive and would likely do well, learn well and achieve well in a typical classroom with typical peers and society. That is part of the vision we have for Charlie's future, so we like this doctor and his assessment.

Finally - we were off to orthotics. At Shriners, they have an in house orthotics department to custom make equipment for their patients. They provided Charlie's Dennis Brown bar and shoes, his AFO's, the COH brace he will be wearing at night now, and they will be making his stander. Today they measured him for the stander and we pick it up in THREE weeks. I think Charlie will enjoy standing. At least I hope so...While we were hanging out in the orthotics department, they also replaced the straps on Charlie's AFO's because they were sort of filthy, and they handed over the COH brace.

Sometime else exciting happened!! We met one of our online friends who lives locally, and who was at clinic this morning as well! Too bad I didn't have my camera. I could have used my phone, and I wish I had thought of that. Poopsie.

Oh well, it was nice to put a face with a name.

This grasshopper was on the driveway when we came home. I took a photo because I could not believe how big it was. I wanted to put my foot by it to show you a comparison, but Ryan told me they bite so I stayed back. Mutant. Yuck. Thank goodness it's not in the house.

14 Months and Happy Shuntiversary!

2011-07-24T18:46:00.000-04:00

Charlie is 14 months old today! I think he looks like such a little boy in this photo (instead of a baby). At 14 months Charlie is an Energizer bunny of energy. I tried to take pictures this evening, but he was a blur - every photo was a whoosh of motion. This is all I got, and it was with my phone. He never stops all day, crawling everywhere, calling for Mommy or Daddy, giggling, smiling, chattering up a storm (gibberish). We think he says Bye and No, and maybe Baby, but those are pretty much unintelligible. He tries so hard to pull to his knees, which is a little sad because he can't really stay on his knees, but cool because he always tries again! We will be working on standing at clinic later this week, and I think he will love it! Charlie still entrances people everywhere we go - flirting for attention. He is still so good natured and friendly, pretty easy to take places. Our main problem is him getting a little loud, but not while fussing - he is usually celebrating.

Right now Charlie loves baths (still), rustling the shower curtain, trying to get things he shouldn't have (like cords), holding my cell phone, giving kisses and hugs - he hugs a stuffed animal when I say love the baby, dancing - he grooves all the time, even sometimes when he is fussing, barbecue sauce - he would eat it by the handful if I let him, cheerios in the morning, petting Buckeye the dog and reading books that you "sing", like Baby Beluga or Twinkle Twinkle Litter Star or the Itsy Bitsy Spider. He has an "up to something" grin, and loves to crawl out the door of whatever room, look back at you and then take off, trying to "out run" you.

Charlie has some separation anxiety, with me especially, but also with Ryan, and wants to be in sight of an adult at all times. He can pitch quite the fit if we walk away - it sounds like he is devastated and quite pitiful.

In other milestones for our family - Charlie had his annual re-evaluation for physical therapy this month, and while he will continue to receive therapy because he obviously has a delay in gross motor thanks to SB, he was proclaimed on time for everything else and even ahead on some things. That shouldn't come as a surprise to me, and it doesn't - but it is a relief to hear that from the professionals, because I am a worry wart.

I also can't believe I let Charlie's shuntiversary pass by without acknowledgment! I guess that tells you how the shunt becomes part of the family, and it almost seems as if he was here all along. Just over a year ago Charlie had surgery to place a shunt in his head for management of hydrocephalus. When we had Charlie, we hoped he wouldn't need a shunt...and we still wish he hadn't needed it. But, we are thankful every single day for the fact that shunt technology was and is available - because he did need a shunt, and that shunt protects his beautiful, developing brain. We are convinced Charlie does is the little genius he is today thanks to that shunt! I was so scared when we found out Charlie would be getting a shunt - and we have been super lucky (knock on wood) that we have had no problems with it at all, but if I knew then what I know now....But, isn't that always the way it is.

So, Charlie is 14 months old today, and we are more in love than ever with this most precious, most perfect, most miraculous little boy! What a wonderful life!!

My Dog Is A Vegetarian

2011-07-16T21:02:00.000-04:00

Ok, not really. But he doesn't eat live chickens. Even if he could catch one, he'd just lick it a little.

The suspect with two of his apparent accomplices

We were finishing up Charlie's dinner and about to wipe his hands and face when the doorbell rang. I don't typically answer the door when Ryan's not here, but thankfully he was home. Our neighbors down the street were on the porch, along with some random guy with only a few teeth. I'm not saying that out of disrespect, I'm being descriptive. We'll call him Ned. We don't know these neighbors well, and we don't know Ned at all but I have seen him sitting in the back of his truck drinking beer. I'm not kidding. Let me insert here that we live in a historic area of Tampa, but it's also what we call a "transitional" neighborhood. It takes all kinds...

Ryan opened the door and our guests immediately started carrying on about a dead chicken and a dog. I thought they had a dog outside they suspected of killing a chicken and wanted Ryan to arrest it and take it in for questioning. Seriously. After all, he is a homicide detective.

Turns out, they were actually vigilantes out on ~~witch~~ dog hunt and they thought the suspect was hiding in our house. A little brown, black and white dog. Named Buckeye. Our dog.

Ned claimed to be an eyewitness in the tragic slaying of the chicken. I have seen the chicken in the neighborhood, and , it turns out, ~~it's~~ it was our neighbor's pet. Yes, we live in the city. And, as our dog has gotten out on occasion, Ned claimed to have seen our dog before and was now ID'ing him as the culprit. The wife of the neighbor couple was blazing mad, I mean hopping, and her husband was trying to calm her down, unsuccessfully, while still maintaining our dog killed her chicken.

They were sure it was our dog. They would file complaints with the city about our dog killing their chicken. We were lying about Buckeye being home all day, snoozing, and about the fact that he was not covered with blood. Maybe we washed away the evidence to cover up his crime. Our dog was vicious, a wild animal, predatory, chased cats and also, obviously, chickens.

Ned went as far as to threaten, to my husband the cop, that if he ever saw our dog again not to be surprised if he didn't come home. That didn't go over well.

This went on for at least five minutes, maybe more. They went on and on, two people yelling and one talking rationally, but all three blaming us and our little dog for the murder of a pet chicken. Right there on our front porch. I couldn't make this stuff up.

Ryan walked inside and picked up the dog, and returned to the porch. The wife was stomping away, blond braids flying, screaming that she was calling the authorities. Ned was yelling it was our dog and none other, and that he would testify to such.

Then he looked at Ryan, and at the 14 pound, wriggling bundle of puppy love in his arms and declared, with the most astonished voice you can imagine...

"That's not the dog."

Yep, that's right folks. Buckeye didn't really kill a chicken and I really mean it when I say he wouldn't kill a chicken. Probably wouldn't kill a flea, that's why we do it for him. He would be afraid of the chicken and/or try to coax the chicken into open mouth/beak kisses.

The wife stopped in her tracks and turned around and Ryan said, "Did you hear what he said. This is not the dog. He'd like an apology."

She apologized and, red faced, whispered she was just devastated by the brutal loss of her chicken before running back to her house full tilt.

Ned was quick to follow, with apologies of his own, casting sideways glances at Ryan's unmarked car.

The husband stood there, silent for moment and then declared, "I know whose dog it was", before taking off himself.

I felt like I was living in an alternate universe. Only in Tampa people, only in Tampa. I tell you, it takes all kinds.

DISCLAIMER: Let me clearly state, I'm not making light of the loss of the chicken. Fact is, I'd be super upset if anyone or anything killed or even hurt one of my pets, and I'm not a fan of stray dogs (admission: Our dog occasionally gets out of our yard when we let him out and don't bring him right back in.) I even thought the chickens were cute, and pointed them out to my mom a couple weeks ago when they wandered, apparently out of their owners yard, down the street and into my front yard. I feel sorry for the chicken, and for the woman who found her chicken dead. I would never, ever hurt an animal, and if I thought my pet had done something like that (if he had shown up at home with "evidence") I would have been out of the house looking to find out what happened and take responsibility for it long before someone was on the doorstep.

Day Two

2011-07-10T19:01:00.000-04:00

With less than 15 minutes total in the chair, Charlie has figured out how to go forward. Now we have to work on steering and keeping those legs together.

Where Kids Are Free To Be

2011-07-10T14:38:00.000-04:00

We went to Freedom Playground today - a "boundless" playground, for all kids typical and special needs, to play together. I'll be frank, it was over 90 degrees at 10:00 am, so we didn't stay long. But the park is amazing and Charlie will have such fun there one day. The play structures are accessible, with a wheelchair ramp to all the fun stuff, which includes slides, a huge sand area, gigantic musical instruments and more. There are swings for babies and big kids, and swings for kids who can't support themselves and need more of a "chair" swing. The floor covering is soft and friendly, and everything is bright!

Wheelz

2011-07-10T14:25:00.001-04:00

Typically parents of a child with Spina Bifida aren't worried about wheelchairs until their kids are pushing two or later, and that's pretty much where we were last week. We weren't thinking about a wheelchair for Charlie, he is 13 months old, crawling and soon to be standing, but I have to get myself mentally prepared for the things to come so I started asking questions about wheelchairs of my mommy friends, and of our friends Doyle and Natalie who I have mentioned here before. I wondered when we should start thinking of wheels for Charlie, whether or not it would deter him from the weight-bearing he needs to do, and walking if he chooses to, crawling etc. One of the answers I got was completely unexpected, though by now I should simply expect the unexpected. Doyle emailed me that a chair is considered whenever a parent is ready to give their kid a bit more independence and a kid is ready to explore a different way and, in fact, he had one hanging around - a demo model - even though the company he works for no longer makes pediatric everyday wheelchairs. And, Charlie can have it if I want, for free.

I was immediately excited...and sad...and worried...and unprepared. I was excited because Charlie wouldn't get wheeled mobility for a while if left to us and insurance, because they will only replace the chair every so often and he will grow too quickly to start now. I was sad because it's hard to face the fact that your child will need a wheelchair, even if you already know it in your mind and even want it for him someday. I was worried because I don't want to do something too early or too late. And I was simply unprepared for it all - it takes me a while. None the less, we decided not to hold Charlie back based on my hangups, and that, while Charlie has plenty of on the floor exploring, standing and maybe walking ahead of him, it won't hurt to get a head start on the wheels as well.

If Charlie LOVES it, we will simply put some guidelines in place - and maybe only use a chair at times Charlie would otherwise be strolled.

Yesterday Doyle and Natalie came over with the chair.

Charlie watching Doyle adjust things.

Charlie appears to be waiting impatiently, but he was really yelling at Doyle to get a move on.

Exploring his seat cushion with Daddy.

Enjoying a back scratch to keep him happy while waiting.

Playing a game of peek-a-boo with Natalie

And sitting in his chair for the first time. We left the seat back, supporting his legs, so this looks way bigger than it is, though it is a little big. The seat could potentially move way forward and the foot plate way up, but we have it this way for now. We are so very grateful to have something Charlie can get started in - and it's a pretty cute aqua blue, too!

Here is Charlie's first ride. The video is kinda long, and involves much coaxing from all four adults, but I am leaving it as is for Charlie's family from far away. I will tell you there is a cute high five at the end, but a lot of it is repetitive - us all trying to get Charlie rolling. This was a big experience for us. I know I am biased, but I have nothing to compare to, and it seems to me Charlie got the idea that the wheels move the chair pretty quickly for a 13 month old. Naturally I think he is a genius. He has to figure out how to let go so they keep moving forward...UPDATE: Today I put him in for the second time and before I could realize it he had gone about 6 feet using the wheels properly. I backed him up and pulled out the camera to film....and he wouldn't do it again. Oh well, I'll be prepared next time.

THANKS DOYLE, NATALIE and Invacare/Top End!!

Mama

2011-07-08T21:25:00.001-04:00

Oh, that word I have so longed to hear has finally graced my ears with the knowledge he knows exactly what he means, and who he is referring to, when he says it. Music, beautiful perfect music. Even while eating spaghetti naked. Not me silly, him.

Life in Phone Photos

2011-07-08T18:21:00.000-04:00

I have been neglecting the camera for the last week and but took a few photos with my phone. On Saturday, Charlie and I met Ryan for some breakfast while he was working a weekend shift. Then, while Daddy worked and worked and worked all weekend, Charlie and I spent the night at Nana's and Papa's house. Charlie raided Nana's tupperware cabinet (with her permission and encouragement), splashed in a whale shaped pool while we grilled and we all went out to eat at Charlie's favorite restaurant, Cracker Barrel.

Do you notice the horns of hair on Charlie's head here? Those were indicative of his mood that day. Somebody had woken up on the wrong side of the crib.

Here he is enjoying a morning nibble on Mommy and Daddy's bed, and then today - it was raining cats and dogs in Tampa and I took the opportunity to stuff Charlie into his fireman jacket raincoat. He refused to look at me for a photo once we got to school - he was way more interested in hitting the floor and finding some toys to play with.

Hoppin' Fish

2011-06-28T18:56:00.000-04:00

Charlie is a problem solver in the making. He likes to shove an entire hand full of goldfish or cheerios or whatever into his mouth all at once. To prevent him from doing that and choking himself, we used to place a few at the edge of the tray where Charlie couldn't reach and slide them over one or two at a time. He has long since figured out how to circumvent that little obstacle.

Disclaimer: The bruise on Charlie's hand is IV related from his recent surgery. We are not smacking his hands with rulers!

So, I'm not making lists but...

2011-06-24T22:23:00.000-04:00

There are some things I want to specifically remember from Charlie's first month as a one year old.

Charlie is totally off bottles. He goes all day sans bottle, and goes to sleep without one as well. I tried to get him to take a bottle of milk the morning of his surgery to have his tummy full before he was cut off of everything but water and apple juice, but he wouldn't take it. He drank some apple juice from a bottle after surgery. That's the only chance at a bottle Charlie's had in weeks, and he is doing fine.

Charlie is totally on table food. He eats what we eat, and sometimes things we don't eat. For example, we went out to a Mexican restaurant with family for Uncle Nate's graduation and we fed Charlie a spinach and tomato quesadilla. Neither Ryan nor I like spinach, but I want Charlie to like it. Ryan said he would never eat it...but he did and he loved it. He eats nearly everything we offer, at least tries it and when he doesn't like something he shakes his head "no".

Charlie says Mama and knows what it means. There is nothing like hearing it, and knowing he wants me. Nothing in this world.

Charlie has started making the silliest faces and knows he is being funny. His personality is so FUN.

We took some photos tonight after Charlie's bath, just before bed. I spent quite a bit of time making Charlie's birthday banner, so instead of tossing the whole thing or packing it away, I saved Charlie's name and hung it from the curtain rods.

Charlie is everywhere. I was trying to hang up clothes in his room and he kept taking off. So we used a pet gate. He was trapped like a rat.

Funny face by Charlie.

Toothy grin.

He got this chair for his birthday. As he can't really get in and out of the chair, he really only uses it right now when I put him there and watch to make sure he doesn't tumble out head first.

But he sometimes reads in his chair.

And like all men, he keeps the remote all to himself.

He is two days out from surgery and obviously feeling just fine!

SB Awareness

2011-06-24T13:15:00.000-04:00

First, I really need to take some photos today and post them. Second, please read this post. Especially if you are one of my non SB mommy friends.

In Canada it's SB Awareness month, and our friend, Kingsley, and his mom, Jill, are Canadian. She touched on something today that I think about often. Of course, my son was born with Spina Bifida and I wish he did not have to face the challenges that go with SB. But, I'm thrilled he was born! Let me explain.

Charlie is beautiful, smart, hilarious and, even with Spina Bifida, healthy and strong. Very few ~~babies~~ people could bounce back from surgery the way he has three times in just over a year, pull themselves across the floor using mostly only their arms and rarely have to visit the doctor for an actual illness (usually well baby or crazy mommy worries, or just check ups from specialists). Lots of perfectly "normal" babies without SB are sick all the time - but not my kid.

However, all the awareness campaigns about SB focus on prevention (which is important - it is no cake walk and SHOULD be prevented when possible) and imply that every baby born with Spina Bifida is somehow a failure of the system to prevent another birth of another sick baby. Though I am sure this isn't the idea the creators of these messages intend to send, what they want to do is create urgency in women to do what they can for prevention, it is the unintended translation - especially to mom's like me who are parenting a miracle with SB and might be a wee bit sensitive.

It would be nice if just some of the messaging out there let people know, if they do end up with a prenatal (or postnatal) diagnosis of SB, it really can be ok. Perhaps these messages could take the place of some of the pushing in the termination talk that Jill references, so that the parents to be hearing the news can see other options. Because, as Jill also mentions SB births have decreased. Some of that is thanks to prevention campaigns. And some of it is not - my doctor had told me about 50% of the people he diagnosed terminated their pregnancies. I get that needs to be an option, but seriously - having a child with Spina Bifida isn't even in the realm of as bad as they say. Given the choice, I would take SB over lots of other potential issues parents face with their kids.

Sigh. I'm on a soapbox. I'm not really saying it well. I like the way Jill said it, so read her post.

A Little Surgery

2011-06-22T17:25:00.000-04:00

Charlie had his surgery today and it went well. Thankfully, this was an outpatient procedure and Charlie gets to recover for the next week at home with Mommy's tender, loving care and Daddy's too, at least for the first couple of days.

I have got to tell you, I can't believe what an incredible blessing our child is. He couldn't eat after 5:30 this morning and his surgery was scheduled for 12:30. He WOULD'NT eat at 5:30 this morning, so he really had no food at all since last night. He could and did have apple juice until 9:30. In spite of being hungry and then probably thirsty too, Charlie was his usual love the entire time. Even when his surgery started late, even when he was poked and prodded, even when he was carried off to the OR by someone unfamiliar, Charlie smiled, flirted and was a general sweetheart all morning long.

The procedure really had nothing to do with SB, and that's all I am going into about that. There was supposed to be an additional procedure tagged on, but they ended up not doing that one at this time. Regardless, Charlie was in the OR a couple of hours, in recovery no more than an hour - he did great, drank a bottle of juice and was proclaimed ready to go home. He didn't even cry and fuss when waking up from anesthesia. He just snuggled.

We are home now, and Charlie is drinking pedialyte and eating graham crackers. I can't believe what an incredible kid I have, and how lucky we all are. Thanks for prayers, I am certain they worked.

On another note...

2011-06-18T22:22:00.000-04:00

Charlie has to have surgery this coming week. Nothing major, it's a urologic procedure that, because Charlie will one day be a teenager and then an adult who probably doesn't want every last detail of his body shared for the world to read, I will not describe further. It's supposed to be an outpatient thing, in and out the same day, but it does include general anesthesia and we will be home together for the week after. A week of snuggles!!!! Please keep him in your prayers, and I will update with how he is doing.

A Country Affair

2011-06-18T21:03:00.000-04:00

This past week has been rough on me. I had to fly way, way, way out of sunny Florida to Denver to present at a conference, which meant I had to leave Charlie for the first time ever. He has spent the night away from me a couple times with my parents, but this was different because I wasn't 20 minutes away. I was gone for three days and by the time I got home, I was yearning for some Charlie snuggles. He obliged happily. What people say about having children equating to spending the rest of your days with your heart walking around outside your chest is true. Charlie was in good hands between Daddy and daycare (who smiled and reported he came to school not matching one day, and wearing an ENTIRE outfit of long sleeved (it's 95 degrees peeps) camo print the next). Ha. Mommy is good for something!

Tonight our local Easter Seals had an event at this super cute ranch in a nearby town. There were hayrides, pony rides, games, fresh squeezed lemonade, BBQ and more. It was also insanely hot. This event would be better held in the fall, frankly, but it was a nice time. Charlie was an ambassador, which basically meant he wore a special t-shirt and looked cute, he socialized and his photo was on some tables and other decor.

Charlie received the wagon to end all wagons as a gift from a friend, and tonight was it's inaugural tour. Charlie declared it a hit! He lounged like a prince. Seriously, this thing has seat belts, a side that comes down to make a bench, drink holders and places for snacks, hidey holes for other things, a COOLER on the end AND an umbrella for shade. It's an amazing ride. It even worked as a diaper changing station. Here is Charlie entertaining himself with these keys I found in the bottom of his diaper bag.

A storm was rolling in, as you can see - and the lightening sent us back to the car, and back home.

It's a very nice place - nice for a FALL event, when the weather is cool and everyone is feeling very hayride-ish. Also, would be great for a country themed wedding or similar.

Swimming with Daddy

2011-06-14T18:47:00.000-04:00

More fun than lessons!

School Pictures

2011-06-14T18:45:00.000-04:00

Not so great, so we didn't purchase. But here is a peek.

Rockin' and Rollin'

2011-06-05T18:19:00.000-04:00

Charlie's fave birthday gift is his rocking horse, Charley Horse. Here he is rockin' and rollin'.

Smash!

2011-06-05T18:17:00.000-04:00

Charlie's entire smash cake video is pretty long...I just excerpted a few seconds. It's pretty anticlimactic, actually. He daintily ate bits of icing and cake the entire time.

Where the Wild Things Are

2011-06-03T10:38:00.000-04:00

Ryan and I have taken a few days of much needed vacation this week. Some days, Charlie went to daycare so we could do some things around the house...or just go to a movie, which we did on Tuesday. But yesterday, Charlie took vacation too and our little family went to the zoo. This was Charlie's first time, but it won't be the last because we live just down the street from the zoo and are now the proud owners of annual passes.

We saw...

Orangutans and many other primates

Fruit bats and black Cockatoos (which I didn't even know existed)

(Doesn't Charlie look thrilled?)

Giraffes

Elephants

Camels

Even penguins - the South African kind that like hot weather

A gorgeous, but injured so he has to live in captivity, Bald Eagle

A mama Wallaby and her super cute baby

these most adorable meerkats and much more. We saw some turtles doing something that looked akin to action I don't feel comfortable posting on my family friendly blog. Of course I am not sure of what they were doing, but the photo just leaves things open to, um, interpretation. Yet...Charlie's favorite things were...

This fan

And this grass. Sigh. He did smile and giggle at the monkeys.

And when we got to the manatees, where you go through a nice, dark, cool tunnel where it is quiet and soothing....

Charlie passed out.

I think this visit to the zoo was more fun for Mommy and Daddy than for Charlie, but I feel sure he will enjoy it as he gets older. In the meantime - it will be a great place to get out of the house and walk around for the next year!

A brief moment of anxiety

2011-06-01T21:37:00.000-04:00

Typically my posts are full of the optimism I want to project, and honestly do feel, when it comes to raising my son with Spina Bifida. He does amaze me, endlessly. He is gorgeous, full of personality, charming, sweet, smart, strong, happy, loving, energetic, easy going, healthy and fabulous in many ways. I would be remiss, however, if I didn't admit that, sometimes, there are moments of anxiety, doubt and worry. They are brought on by the strangest triggers.

Today, Charlie went to the doctor for his one-year-old check up. He got three shots in his thighs, and for those he screamed, which made me - once again - the only mother in at least four counties thrilled with her child's cries this afternoon. His head was measured and his shunt is obviously working. Yay! He got weighed, and is still at the very top of the charts - though he has come down to a mere 90th percentile...he's getting downright skinny. Ha. But that is not what triggered my worry.

The girl who did the weighing and measuring of the head, also measured height. Then, once we went into the exam room, a nurse came in to measure Charlie's length again - he was very short in the first measurement, she said, and there was suspicion she had done it wrong.

I watched the first measurement. She didn't do it wrong. Her measurement was accurate, just like the second one. And they showed Charlie is now in the 4th percentile for height.

Dr. Lewis told me not to worry, because she could see the wheels in my brain turning, just behind my eyes. This was not another issue, she said, she was sure. This was certainly related to Spina Bifida, because the growth plates aren't stimulated in his legs because he isn't weight bearing, and the muscles are triggered to move them, and so on and so forth. I'm sure she is right. Her explanation is certainly logical. Frankly, I don't know why it didn't occur to me before that this was a possibility, that Charlie was simply be, well, short. When we were told that Charlie's shunt tubing, which sits curled in his belly waiting to be unfurled, could accommodate him growing to 6 feet tall, that is sort of what I pictured. Charlie's dad is 6 feet tall. I'm not, but I'm not remarkably short either.

From looking at him, Charlie's upper body appears to be growing at what I would think is a typical rate. In fact, I would have bet good money that Charlie had grown quite a lot in the last couple of months. I would have lost that bet.

Don't know why, but this makes me sad. I am having one of those moments in the midst of my otherwise beautifully optimistic life, where I am worried for Charlie's future based not on issues with cognitive development but on, of all things, height. Something that never before even crossed my mind.

Last List

2011-05-30T18:22:00.000-04:00

I am done with formal lists after this month, because I have obviously had a hard time keeping up with them for the last, oh, six months or so. But here goes:

1. Charlie did his first media interview this month! And he made the front page with a totally positive story. I wish all my media interviews were so successful!

2. Charlie has given up all but one bottle, at least at home. I think his teachers have a harder time saying goodbye to the bottle than either Charlie or I do, because I have noticed no resistance from Charlie at home - I just feed him a morning and afternoon snack instead of a bottle.

3. Speaking of snacks, Charlie eats lots of things now. He has had all kinds of new foods this month - he loves baked beans best right now, but also canned peaches. Oh, and goldfish! He now eats Cheerios and has tried (and not gagged on) fish, a hamburger, chicken prepared various ways, Eggo waffles, grilled cheese sandwiches, peanut butter and jelly, hummus, mac and cheese and much more. Unfortunately, Charlie likes to shove all the food in his mouth at once and doesn't wish to eat "one at a time" ever. He fills his chipmunk cheeks.

4. Charlie is drinking whole milk now. He is a bit confused at the fact that it is coming from a cup instead of a bottle, but is getting used to it.

5. When Charlie is done with whatever he is eating or doing, he shakes his head "no". It's so cute!

6. Charlie can get a spoon to his mouth on his own. No promise, however, that the food is on the spoon by the time it gets to his mouth. I have a lot to say about food this month!

7. Charlie crawls everywhere. All over his room, all over the house. He now likes to go room to room, army crawling. He is fast.

8. Charlie has taken a liking to a bad habit - biting people. He doesn't seem to be doing it from frustrations or meanness - it seems to feel good on his teeth and he thinks it's funny. No one else is amused and we are trying to break the habit. Needless to say, Charlie now understands the word "no" and when we say it, he yells back.

9. Charlie still wears a size four diaper and is wearing 18 months clothes, and will soon be moving towards 24 months too. We are now purchasing only 18-24 months or 24 months clothes now.

10. When I leave the room, Charlie screams. This hurts my husbands feelings, but I am certain is just a phase and will soon be over. He will probably then scream only when daddy leaves the room.

11. Charlie is super vocal, but doesn't use many actual words yet. He says a lot of Dada still. And we think he says "hi". He makes lots of noises and sounds as if he is talking his own language. He doesn't really say Mama often...I'm trying...

12. Remains the happiest of babies, and so sweet and darling. He is also asserting himself more - we are going to have quite the stubborn cutie on our hands!

7 Years

2011-05-30T12:47:00.000-04:00

Ago I married my best friend. We have have made so many memories over these years, wonderful moments, hard ones and sad ones too. We are strong today thanks to each and every moment, and together with Charlie we are the family I dreamed of. We are celebrating quietly with our baby, who is our pride and joy. It's hasn't always been easy, but has always been worth it. Cheers to many more!

It was a beautiful Sunday afternoon, Memorial weekend 2004. It was oh so hot! We had an outdoor ceremony at a beautiful historic hotel beneath a tree that had a heart shape grown in. We danced in an overheated ballroom because the air was broken! We ate about one bite of delicious cake that was talked about for weeks after...we were too busy to eat more.

I can hardly believe our tiny flower girl, Madison, is headed into middle school, and Ryan's best man, now Uncle Nate, is graduating high school next week. Time sure does fly.

Cowboy Charlie Turning One!

2011-05-28T17:52:00.000-04:00

I always say this, but I'm saying it again. I can't believe how time flies. At this rate, in the blink of an eye Charlie will be 18 and I will be old. We celebrated this weekend with a party theme of what else but cowboys, of course!

This year has been the most joyful and joyfully exhausting of my life. One year ago, in the weeks before I delivered Charlie, if I had known what I know now, I would have had so much less worry in my heart. But, isn't that the way it always is with hindsight.

Charlie is everything I imagined he would be and so much more, and I am thankful today and always for each day I spend with him!

Charlie got a new horse named, um, Charley Horse. He loves it! Bounce, rock, bounce, rock! Thanks Nana and Papa! He got all kinds of new toys to play with, including a farm set complete with mama and baby pigs.

Everyone got decked out in hats, bandanas and sheriff stars and munched on Pioneer Woman's baked beans and potato salad, hot dogs and hamburgers, chips and queso and veggies and dip, along with lemonade and tea.

Charlie's birthday banner.

Cookie favors that didn't turn out exactly as planned. Less like cowboy boots and hats and more like, well, go go boots and red hat lady hats.

Charlie had the very coolest smash cake ever! Aunt Kay Kay made him his very own cow print number 1 cake.

And this was Charlie's other cake, for everyone to try.

Uncle Nate smashed the Pinata. Yes, the grass is dead. It's Florida, we have water restrictions and oak trees, what can I say.

First taste.

Getting into it.

We had a quick bath after this...and a nap.

Happy birthday baby Charlie! You are certainly the most wonderful blessing I ever imagined, and I love you more each day!

Dynamic 'Sensei' is a wheeled wonder

2011-05-22T09:06:00.000-04:00

Dynamic 'Sensei' is a wheeled wonder: "He's a strawberry blond Buddha on six little wheels."

Charlie and Doyle made the front page! A while ago, so long ago that by the time we got contacted I had forgotten about the whole thing, I sent in a response to our local paper to a call for hometown hero stories about our friends Doyle and Natalie Mann. They have been such an inspiration for our family and many others. I didn't know, when I did this, that we would be involved in the story as well. Much to my surprise, Charlie was interviewed last weekend at the Miles for Moffitt event, and he and Doyle made the front page of The Tampa Tribune this morning.

Marathon Runner

2011-05-16T19:12:00.000-04:00

Well, let's be honest. More like fun run walker. Charlie and I did our first "event" this weekend - the Miles of Moffit (Cancer Center) with a bunch of my coworkers. Being that I am very forgetful, I forgot to pull out the camera. All I got were these. The top two, someone else took and sent to me. The third, I took with my phone of Charlie, who was tanked after his strenuous ride in the stroller. Well, he did have another activity after the walk (before swimming) but he's keeping that a secret until this weekend at least.

Yep, Charlie was trying to pull our friend Natalie's hair while we tried to get a photo. And that is our friend Doyle in the middle - he did the wheelchair race, I think on a hand cycle, and won first place!

Charlie in his shades. He was a little low key this weekend.

Tuckered out. Hard work riding in that stroller. Check out Charlie's shirt. I got him one to match our team - the LifeLink Legs. The next group event is in November and I, gasp, am going to put a serious amount of effort into getting ready for that and participating in the longer event instead of the fun run.

Birthday Preview

2011-05-09T20:30:00.000-04:00

Chick Magnet

2011-05-09T20:28:00.000-04:00

Ready to wow the ladies at daycare...Charlie chills on our bed while I finish getting ready in the morning.

My First Mothering Mother's Day

2011-05-09T20:23:00.000-04:00

For some, a Mother's Day with a baby to hold is something they have been dreaming of all their lives. Not me. There were years I thought I didn't want to have children of my own, and many more years during which it never crossed my mind at all. But once it did cross my mind, once I realized I wanted nothing more in this world than to have a child, and once it became so obvious that having a child wasn't going to be as simple as I had always assumed, the dream of a Mother's Day with a baby in my arms took on real and intense meaning. Yesterday my dream was realized for the first time, and Charlie didn't disappoint. Just being with Charlie is a gift I enjoy every single day - and I spent most of yesterday living in the moment and loving the perfection that is my baby boy.

We got up together and played, Charlie ate some yogurt and then we did my very favorite thing. I let Charlie take a nap in my arms. Oh, I love that snuggly sweet baby body, all squishy and warm, in my arms while he sleeps! I stripped him down to a diaper because he was messy from a snack - and wrapped him against me with a blanket. Pure bliss. We woke up Daddy with a kiss. Then we went to visit Grandma and Nana - which meant driving from one end of the Tampa Bay universe to the other. That was exhausting, but it was my day and I decided I didn't want to decide which grandmother got to see Charlie, leaving one to wish she could him. I chose both, and that made me happy.

By the time we returned home last night I was not relaxed, and I was so very tired, but it was totally worth it. Charlie was passed out in his car seat - thankfully he had a bath at Nana's house and got some jammies on - and he was transferred into bed without even a peep, which is amazing. All that lovin' wore Charlie out. Here's our day in phone pictures:

Look at him go!

2011-05-02T21:07:00.000-04:00

Charlie will do about anything for a cell phone. Or a remote control. Or the house phone. Here he is really moving. He uses his arms and his hips to shift left and right and move forward. And he is fast! I tried later to get footage of him coming towards me (well, towards my phone) and he had my phone and was moving backwards with his capture before I could even get focused.

Charlie is quite intrigued by things like this - he opens, looks behind the door to see what is making the noise, and shuts. Opens, looks, shuts. Repeat. It feels like he is trying to figure it all out.

Stop the Mommyrazzi

2011-05-02T21:01:00.000-04:00

It is way harder getting photographs of an 11 month old than it was getting photos of a newborn, that is for sure. And I love it! We are going to have to get more creative - not that I am complaining. I am so proud of how Charlie is getting around, never holding still enough for more than a quick snapshot. Hopefully we will try some outdoor lighting this weekend. This, in a nutshell, is what Charlie thought of 11 month photos:

This is the current mode of transport for Charlie's toys while he moves around.

Charlie might as well have a "Will work for cell phone" sign.

He also loves this.

Oh My! Eleven Months Snuck Right Up On Me!

2011-05-01T19:46:00.000-04:00

Alternately titled: Photos to come, I promise.

Whoa! Charlie's 11 month birthday was Easter Sunday! Though I realized on that day Charlie was turning 11 months old, I totally ignored it. I think I was trying to sweep it beneath the rug, pretend for a moment more that I had a 10 month old...not a baby only weeks, mere days, from being a full year old. He is so quickly trying the leave baby Charlie behind and become little boy Charlie.

We had a big month.

1. Absolutely the most remarkable thing that occurred is that Charlie started to crawl forward. He uses his arms and shifts his body to move towards what he wants, and it is AWESOME. My baby is most amazing. He is now cruising all over the place in pursuit of what he wants, and what he wants most is always the television remote, the phone or a cell phone and the laptop.

2. Charlie has an astonishing four teeth, up from only one at 10 months old. And those little razor blades are SHARP. His mouth is an "enter at your own risk" zone. He has cut out a bottle on his own - he no longer wants or will take a morning bottle and is down to three a day - we are cutting another soon. (In fact, as I type this a full week after Charlie's 11 month birthday, tooth number five has broken ground.)

3. He is eating lots of things. He doesn't like creamed corn or cheese ravioli, but he eats chicken, baked beans, black beans, butter beans, toast, eggs, pasta, green beans, yogurt and more. He's not much of a fan of fresh fruit yet, still preferring the pureed fruit in a jar.

4. We are back to sleeping all night without screaming, and Charlie pretty much gets himself to sleep at night with little or no fussing and snoozes til morning.

5. He is still the happiest baby ever. Really. Ever. Everywhere we go, doctors offices, daycare, church, the grocery store...Charlie is making friends, happy, friendly and social. When people walk by in restaurants without talking to him, he looks at them like they have totally lost their minds. His laugh is bliss.

6. Charlie was baptized this month, and enjoyed his first Easter.

7. Charlie now hates swimming lessons. I don't know what happened. One Saturday he liked it, the next he hated it. He screams the. entire. time. They assure me he is more protesting than sad, and that he participates while screaming, that this is normal and will get better (but probably worse first). So, we are sticking to it. Now that hurts a Momma's heart.

8. On that note, Charlie vehemently expresses his pleasure or displeasure, whichever the case, with whatever is going on. Boy can he scream and turn on the water works when he is angry. And he likes to have his Mommy!

9. Charlie kisses all the time now! Big, open mouth kisses. He seeks out kisses, leaning in with his slobbery mouth - never for your cheek, straight for your mouth - and we love it. My mom spent several minutes trying to get him to kiss her cheek recently, and Charlie had none of it. He wanted to lay a big smacker on her lips or nothing at all.

10. He hugs too. He will fall into your snuggle with his face in your neck and his arms out. He doesn't tighten' up, but he is obviously seeking and enjoying the affection.

11. Charlie takes things out of and puts things in containers, and truly empty containers thing by thing, tossing each thing one by one to the floor. He picks up tiny things and puts them in his mouth (we are baby proofing) and is amazed by his hands, and strangely - my feet. If I am sitting on the floor with him he will look at the top of my feet, then the bottom, top, then bottom, as if intrigued by the difference.

Preeclampsia

2011-04-26T20:36:00.001-04:00

You all know that Charlie came to us the hard way. Before we could bring him into our family, we had to lose baby Elijah so I could get diagnosed with the blood clotting disorders Factor V Leiden and Homozygous MTHFR. Those two disorders are treatable, if you know you have them...but if you don't know, they can sometimes lead to a couple of very serious conditions in pregnancy called Preeclampsia and HELLP Syndrome.

I was diagnosed with HELLP Syndrome and very severe, life threatening Preeclampsia when I was in my 23rd week of pregnancy with Elijah. I was diagnosed during a routine doctors appointment, because I had chalked up my symptoms to simply being pregnant. My blood pressure was through the roof, my liver function was declining, my kidneys were not super happy and the clotting factors in my blood were low. Elijah had to be delivered right away to save my life, or we would both very likely die. After days of induced labor, Elijah was delivered by c-section, and he was still born.

In this modern world, where we can genetically engineer human beings, transplant faces and clear aneurysms in tiny blood vessels in the brain with little coils, you would think my story would, at worst, be unusual. You might be surprised to find that it is not. Every year, about 300,000 women and babies are impacted by Preeclampsia. Around the world, 75,000 women and and 500,000 babies die annually. They die.

In 2008, one of those babies was named Elijah. And one of those women could have been me.

I am so lucky to have lived through Preeclampsia and HELLP syndrome, to have been diagnosed with "a reason" and to have Charlie today. But, there needs to be more research - research to prevent Preeclampsia from occurring, to cure it if it does - and to stop the impact this often silent, but devastating, disease has on families everywhere.

I have placed a button on the right, see? It's pink and blue and totally doesn't match my blog but I don't care. Because if you click on the button you go to link for the Promise Walks that will be marching around the country, marching to find a cause and a cure for Preeclampsia. If there is a walk near you, perhaps you will walk.

Whether or not you walk - take a look at the signs and symptoms of Preeclampsia so that if you or a loved one is ever pregnant and experiences any of these indicators, you can get help quickly. Women with the disorders I have aren't the only ones who are get it. In fact, most women who get Preeclampsia have no identifiable risk factors at all. 1 in 12 pregnancies feels the impact of Preeclampsia, don't let it be someone you love.

Thanks.

Wheeeeeee!

2011-04-24T18:59:00.002-04:00

Turn up the sound and listen to him giggle!

Happy Easter!

2011-04-24T18:35:00.000-04:00

We took Charlie to church this morning and my parents joined us. As expected, the sanctuary was packed! And there were services going on simultaneously in the activity center! We had to go all the way into the balcony, and Charlie was loud so Ryan ended up taking him to visit the bookshop. We really have to start getting there in time to get him to the nursery so Ryan can actually stick around for the sermon. Then we had a delicious brunch at Daily Eats, and Ryan tried unsuccessfully to figure out how to take a photo of the Tampa Bay Lightning players who were dining behind us, apparently celebrating their win from last nights hockey playoff game. We wanted some photos of Charlie, and went to a park. It didn't go as I planned, cause the grass wasn't as green as I like and Charlie wasn't sure he was in the mood, so here we are. Charlie also went swinging for the first time and LOVED it. I have video to post later. Priceless!

Take Me Out to the Ball Game

2011-04-24T18:11:00.000-04:00

Friday I had a work thing at a local baseball game, and Ryan is a baseball fan so he and Charlie came along. Charlie dressed for the part in this super cute outfit Nana found, and he ran across an unexpected new friend...an Easter Bunny in a Detroit Lions jersey.

Mode of Transportation

2011-04-20T20:35:00.000-04:00

Charlie came home with a note from school today letting us know HE CRAWLED FORWARD!!! He uses his hands, pulling one after another, to go forward. Tonight, we got him to do it twice - and I barely caught it on video. I'll work for a better one, because this is totally out of focus and way too close. I must of hit some sort of blur and zoom button in my excitement. I also am posting a video of his most popular method of getting around - scooting backwards.

Mom's of babies who have SB are obsessed with movement. Did he move? Did you see that? Was that his leg? Get him to do it again? Do you think he moved? We are asking these things all the time, like a full time job. Here is an example of some of his leg movement we often see on the changing table. He pulls his legs up at the thighs but I couldn't get a great video of that today, but I did get him flipping his legs, which he loves to do, and playing with his feet.

Hi, Baby!

2011-04-20T20:25:00.002-04:00

Only a Mother's Love

2011-04-17T11:07:00.001-04:00

You might think this post will be about something like sweet baby breath against my cheek in the middle of the night while soothing Charlie back to sleep when he awakes. But it's not. And not only because we let him "cry it out" last night when putting him to bed. Though we did. Back to that in a minute.

This post is about a moment I will never forget. Last night Ryan, Charlie and I met my parents for dinner at Carraba's. Yum! We are trying to transition Charlie to table food, so we ordered him dinner too. Cheese ravioli with the sauce on the side seemed a smart option. At the time. He enjoyed a few bites with no problem, seeming to like it. So I got braver, and gave Charlie a bite with a bot more cheese, dipped in the red sauce. And that was my mistake.

Charlie got a look on his face. "Oh, you don't like that honey bun?" And then he gagged. "Uh-oh!" And then he wretched. "Ummmmm..." And then, without even realizing I was doing it, before I cound think about it (obviously), my cupped hand was in front of my Charlie boy. And he was throwing up in it. My hand. It was substantial.

There was a time that would have made me, in turn, wretch. Though I doubt my mom would be extending a cupped hand at this point in my life! But it didn't. Matter of factly, I made use of a napkin, advised the waiter it should go directly into the laundry (or trash) without further ado, and got on with our meal.

Next time we will go with the grilled chicken.

Acting silly, pre event.

Perhaps the bite that started it all.

No worse for wear, after.

Now, back to bedtime last night.

Charlie used to be an excellent sleeper. We could plop him in bed and he would gaze lovingly at his glowing seahorse and drift to dreamland. Then teething happened, and it all changed. Charlie demanded to be rocked to sleep each night. I won't lie, at first I loved it! Snuggles with my boy! But then it got to the point he would wake up when I tried to put him down, and he would scream, and I mean SCREAM like he was being tortured! I would pick him back up, and he was immediately back to sleep. Down. Scream. Up. Sleep. You see it was a cycle. And once I finally snuck him into bed and snuck out of his room, he would wake up in the night, screaming. Probably shocked to find himself in his bed asleep instead of in my arms.

We were tired. Toothpicks in our eyes tired. And so, while I am no fan of hearing Charlie cry and the sound, in fact, makes me nauseous, we decided to experiment with a variation on the Ferber method of sleep training. I say variation because I have not read his book, we just went with what I had heard.

While it was awful hard during the crying, in retrospect it the process last night (at least) wasn't so bad. We went in regularly to let Charlie know we loved him and had not abandoned him, and he was asleep inside 30 minutes and slept all night again. What a relief! Charlie awoke this morning well rested and happy to see me. He loved me still! He smiled at me right away! And I hope we are on our way back to simply putting Charlie in his crib, saying good night and drifting off to sleep.

This one is for the Mema...

2011-04-17T10:56:00.000-04:00

Because she is in North Carolina and I am in Florida, Mema didn't get to see the beautiful flowers she and Papa sent me for my birthday in person...so I took a photo. So pretty, Mema! Thank you!

I have been trying to load this photo for days Mema! Finally it worked!

Preacher Man

2011-04-10T18:51:00.000-04:00

Today was a truly wonderful day. Ryan, Charlie and I got up on time, got ready at a good pace, no disasters happened and we made it to church early! For Charlie's baptism. Charlie was, as usual, a star. He was also a chatterbox - but who is surprised about that?! We had a couple of songs before the baptism, and Charlie spent that time flirting with the ladies across the aisle. Then, when we got called up front for the main event, he chattered at everyone during the responsive reading. So much so that one of our pastors declared Charlie would someday be a preacher! Charlie took the whole water sprinkle thing in stride, and enjoyed is walk down the aisle to greet the congregation. Then, as we turned to go to our seats, Ryan was holding Charlie so he was facing out, and at the perfect time - Charlie started clapping. The whole congregation "awwweeeddd" and laughed.

Our favorite pastor, Bernie, did the deed. He also helped us lay Elijah to rest a couple years ago, so this was like "full circle" for us. Poor Bernie, Charlie was also the heaviest baby!

Pastor Bernie, Pastor Jim and Pastor Matt - with Charlie.

We sprinkle instead of dunk.

Looking as if he wondered whether or not he was going all in.

Greeting the congregations - his friend Lucy, just a little over a month older than Charlie, also was baptized today.

Afterwards, we had brunch at a fun neighborhood restaurant called The Front Porch...which is in an old house with, you guessed it, a big wrap around front porch. The food was yummy but the service was slllllllooooowww. We had plenty of time to visit. Charlie got his first Bible, which you see below. It ended up on his head!

Aunt Mandy holding Charlie with cousins Matt, Mitch and Madison.

Mitch and Charlie - this is the best photo I got of his outfit. We didn't do the traditional gown. Charlie would have looked like a Thanksgiving turkey wrapped in a wedding dress.

Paul Schulte's Real Life

2011-04-04T18:08:00.000-04:00

2011-04-03T19:37:00.000-04:00

I am obviously making up for lost time with posts today. We tried to do a photo session on my mom's green, green grass today, because ours is, well, not green. And covered with oak tree leaves. Charlie wanted nothing to do with it, and we had to beg for a few moments of cuteness. I was surprised that any came out at all. Even those that didn't are still pretty cute.

35 Years Ago...

2011-04-03T19:22:00.000-04:00

...Next Sunday, I was born. My parents had us over for lunch today, so my mom could make my favorite things from childhood - including my traditional birthday cake, which is devils food cake with seven minutes icing. Or at least, when I was little, it was called seven minute icing because that's how long it took to make with boiling water and sugar and such. Now it's called fluffy white and you can buy it in a tub in the cake aisle of Publix! Of course, when I was little - my cake was also shaped like a bunny each year, which my mother made from two eight inch round cake layers, complete with ears and bow tie. Now it's a traditional layer cake - but it still tastes awfully good! Yum! My parents did my birthday meal today because my actual birthday will be Charlie's day really, because he is getting baptized next Sunday.

My mother likes to have meals in her dining room - now that my sister and I have moved out, they don't get to use the formal rooms all that often. Pretty Easter-y flowers!

I am truly trying to get adventurous with Charlie's meals, and less terrified of choking. He sampled green beans, which he has had before. But he also had, for the first time, mashed potatoes, butter beans, creamed corn and ham. The creamed corn was NOT a hit. In fact, it was a miss. At least Charlie didn't miss my mother's hand when returning it to her. Charlie seemed to enjoy everything else and even danced while eating the butter beans!

I've been asking for a few weeks for a photo of myself as a baby. I wanted to see how alike Charlie and I look. In the process of digging for things - my mom found my baby book.

And in that book there were all kinds of memories. Like when I was made a member of my faith congregation. My family went to, and many still do go to, a Quaker church - but we don't call it church, we call it a meeting of friends. Quakers also don't do the baptism thing. Or communion or any other of those type of rituals. It's not that they think it's wrong - just that they think it's unnecessary. For example - the Quaker baptism is simply accepting Jesus Christ as your savior....

For babies, at least at the congregation we attended, we were added to the "Cradle Roll" which was sort of like saying the whole group promised to support my family in raising me a Christian. Here is my certificate in a little book of prayers. Now I go to a Methodist church, and participate in all the rituals...

I also found some old doctor records. Which explained a lot! Like why my mom was worried I was starving Charlie when I didn't feed him solid food at four months old. Because, my mother was instructed, by my pediatrician, to give me rice cereal and pears or applesauce at only 1 MONTH OLD. One month. Says it right there at the top. There were notes from my first year - meats were to be offered at four months, and I was to be eating meats and veggies twice daily by five months! Look below - the nine month note had me weaning from bottles one per week, to be done by ten months old. And I was drinking whole milk!

My mom also made notes of many milestones. It's funny how similar her handwriting is today to how it was 35 years ago. It's still nearly illegible.

And here I am. I need to do some side-by-sides to see myself next to Charlie. But I think nose and mouth wise we are very alike. Another thing - my mom's notes mentioned I was always smiling and laughing. Another similarity to Charlie.

Off to Nana's We Go

2011-04-03T18:29:00.000-04:00

But first Mommy wants more pictures!

Sunlight on Sunday Morning

2011-04-03T18:25:00.000-04:00

Beautiful blossoms blooming, bubbles abounding and babies babbling.

Dancin' Fool

2011-04-02T20:24:00.001-04:00

Charlie has been grooving for a few weeks now. One of his moves is a "hand in the air like he just don't care" along with a head weave side to side. The newest move, seen about halfway through this video, appears to be rehearsal for his hip hop career.

By Any Other Name

2011-04-01T21:16:00.001-04:00

He's still our Charlie. But we have lots of other names...Poor boy is so gonna be confused.

Little Man
Charlie Chaplin
Charlie Chan
Tater Tot
Tater Baby
Sweetie Tater
Munchkin Nugget
Munchkin Morsel
Baby Man
Bubbitt
Bubba Boy
Pumpkin Muffin
Lovey Bug
Stinky Pete (I bet you can imagine when that applies)
Tinker Butt
Whiney Hiney
Charlie Marley Munchkin Man
Tiny Tot
Chubba Bubba
Snugglet

I need this list to one day mortify Charlie in front of a girlfriend or two. Check out those guns!

What Makes a Woman?

2011-03-30T20:36:00.000-04:00

I have thought so much about this question lately. Is it, like Maya Angelou says? The fire in my eyes,
and the flash of my teeth, the swing in my waist, and the joy in my feet? Is it, my maternal instinct, my propensity to nurture? My high heels, my makeup? My biology? The fact that I crave chocolate regularly, will pay anything for jeans that fit well and cry at sad...long distance commercials?

Does my womanhood reside in my uterus and fallopian tubes, in my ability to procreate? I never thought so before. I sure don't think a breast cancer surviver loses her womanhood when she has a breast, or both, removed to save her life. Women with no children, whose uterus has never housed a tiny human, are women none the less. Before I ever wanted children, and even when I specifically didn't think I ever would want them at all, I never considered myself unwomanly. I have always considered myself very much a woman. Curves, red lipstick, big hair, high heels and all.

My reproductive organs never entered into that equation. Not until lately. I have some decisions to make, and I feel like my body is rushing me. I won't go into the details, but lets just say I am having some unpleasant girl things going on that are far too often and last too long. This is personal, I know. Sorry. Why these things are happening, nobody knows - and it seems nobody (perhaps due to the fact my doctor is not a woman?), but me of course, is in any rush to find out. Because, whatever the cause, the treatment options are the same.

1. Live with it.
2. Take birth control pills.
3. Have surgery which takes away my ability to have children from my body ever again.

So, live with it. Um, no. Not for long, anyway. It's uncomfortable, inhibiting and unpredictable. Why is it that I feel certain there is intense research going on somewhere to cure male patter baldness, yet I can simply "live with" something that apparently impacts plenty of women in their mid-30's?

Birth control pills. They won't prescribe them, thanks to my compound blood clotting disorder. There is this one other medicine without estrogen that may be safer. But it may not be. And it actually doesn't solve the problem, just helps...regulate it, and not all that well from what I hear.

Surgery. Well, that's quite permanent isn't it?

Some people would say, and I might even agree, that I shouldn't have any more children from my body regardless. Between blood clotting issues and preeclampsia and HELLP Syndrome and side effects from shots and gestational diabetes, and c-section risks and not to mention Spina Bifida which is actually the least of my pregnancy worries, there are just a lot of things that my body doesn't agree with about pregnancy. And I need to not take any super unnecessary risks, because I have people who need me around. And frankly, who I need to be around to see grow up.

And more babies? There are plenty more people, or perhaps the groups overlap, that figure I have my hands full with Charlie and that another baby would get too little time because of Charlie's needs, or that, perhaps, Charlie would suffer because of having to split attention and money with the new baby.

You could think to yourself, or even comment on this post, why not adopt? What about surrogacy? But don't, because I know about those things and they may, in fact, be options though cost prohibitive. The issue at hand is, while I could do those things and I know I would love an adopted child, and it would be AWESOME to have another biological child that someone else carried, had morning sickness with, got swollen feet thanks to and then delivered...and handed over to me, my heart aches over my feelings about my own ability to build another baby and bring life to this world, regardless of logic. I know.

This has nothing to do with how lucky I should feel (and, incidentally, do) to have Charlie after all we went through with Elijah and when there are women all over the world who would give anything for just one child but can't even have that. I know.

There is no need to tell me I don't need to think of this right now because there is time and I am young and so is Charlie. Yes, I know.

For the record, Charlie is so enough - he is perfection. But the problem with that is...he makes me want more kids. If he was a holy terror I might not be in this conundrum. I might be begging someone to sterilize me...

I just love being a mom so much. So much more than I imagined, so much more intensely than I could have predicted. Who knew? No one, it's an indescribable feeling until you experience it. And then, I really don't know if every mother feels this way. Have you seen the news - some woman left her toddler home alone for the weekend recently! I don't recall where, but she clearly does not feel the way I do about being a mother.

I feel my hand is being pushed by my body, a body that has already betrayed me on at least one important occasion and that I feel is not pulling through again. Making a decision just seems so...final. I am not ready to stop dreaming of that little girl to go with my little boy. (Yes, I know I could get another boy.)

Of course one detail, or one set of details even, doesn't make me a women. Its so many things in addition to my X chromosomes and all that other stuff. I know that having surgery that would rule out another pregnancy wouldn't make me less a woman any more than the breast cancer survivor without her natural breasts or uterine cancer survivor without her uterus, or heck - the post menopausal woman - is less. But that doesn't stop this crazy train of emotions.

Gosh I wish I were more logical sometimes. But then...isn't that part of being a woman?

What 10 Months Looks Like

2011-03-29T20:59:00.000-04:00

Photo time seems to have a variation on this, every time, these days. Constant movement, mischief and grins...but no sitting still or holding that pose. The moment he gets the perfect expression is the moment he wiggles away!

But check out that second tooth. You can (barely) see it emerging right next to the first.

And how about that expression. Like he's shocked!

Big News!

2011-03-26T16:51:00.000-04:00

No, I am not pregnant. No, I did not win the Power Ball drawing. No, Charlie has not been offered a multi-million dollar modeling contract (although - he should be, he is so cute).

However - Charlie did KICK HIS LEGS IN THE POOL TODAY! Danielle, Charlie's instructor, was excited to report when she handed him back to us that he independently kicked his legs during swimming lessons this morning, at least 20 times. Maybe more! This is the first time he has made a "kicking motion". Ever. Charlie can pull his legs up at the thighs, and we know he feels those upper thighs (thanks to shots and screaming fits), but he has not kicked. Until today. Here is video of Charlie practicing swimming.

He went farther on his own after this but we didn't have the camera out still.

Also, last week Charlie got his underwater picture made. I had no idea how they would turn out, and I wondered if his eyes would be open and, frankly, I wondered if they would be full of terror. They were selling them this week and I purchased a hard copy (all that was available) for an insane amount of money for a single printed photograph, but whatever. So, this is a photo of a photo. But check out my little fishy!

I will be scanning the actual photo for prints, grandparents, so don't you fret. And I will be framing this. And Charlie's lips are insane, they are so precious. The actual photo is almost luminescent, with the light and Charlie's porcelain skin, strawberry blond hair and blue eyes against the blue pool water. Gorgeous.

10 months old

2011-03-24T21:27:00.000-04:00

Charlie is 10 months old today. I am amazed that 10 months ago about this time we were probably going to see our baby in the NICU for the first time since his arrival, and the first time since the major surgery to repair his back! Oh, if I knew then what I know now, my mind would have been so much more at ease! Charlie amazes us each and every day with his incredible joy and accomplishments. Oh, we are so fortunate.

Here's a view of Charlie's 10th month:

1. As you can see up top, he is clapping. And watching Wheel of Fortune. But he clap, clap, claps all the time. We hear those sweet little palms slapping together first thing in the morning and as he goes to sleep at night, and all day in between. He cheers while claps quite often, saying "Yaaaaaaaayyyyyy" throughout. I have not yet gotten tired of this sound, I could listen to Charlie clapping all day long. Ignore me in the background acting like an idiot.

2. Charlie is dancing! I have not caught this on video yet because I pull out the camera and he freezes. But he will groove his little head back and forth and it's so cute. We were out to dinner one night a couple of weeks ago right after he started it, and he was doing it for all the other patrons, who each stopped by to chat with the cute little rosy cheeked butterball.

3. We still have only one tooth.

4. Charlie sits without supporting himself with his hands, and he uses those free hands to play with toys.

5. He still moves only backwards, and rocks on his knees and does pushups. He rotates in circles. He leans on one hand and reaches across his body with the other to get something he wants.

6. Charlie can push himself (up between his legs) into a sitting position, and get down from sitting to his tummy.

7. Charlie has found his voice and he is LOUD. He has an opinion and has started to grunt at things he wants or doesn't want.

8. Charlie is slowly eating table foods. I am still a freak about choking, but he has eaten tiny pieces of chicken, carrots, peas, tortilla, cheese, corn....let's see...green beans, soft apples. And, he has eaten baby finger foods like puffs and those little gerber things that look like cheetos but are not. He loves mum-mums. He is proficient with his sippy cup but tosses it like a Viking when he is finished with a sip.

9. We had our second clinic appointment - and the neurologist who saw Charlie said, and I quote, "If current development is any indication of future intelligence, we will have a smart little boy on our hands." Also - everything else checked out for the best - urology, orthopedics...all good for now. We have a minor urologic surgery coming up pretty soon, but that has nothing to do with Spina Bifida.

10. Charlie had his first MRI, and did great - and his shunt was working beautifully. The neurosurgeon said he was progressing beautifully. I know that!!

11. Charlie swam ON HIS OWN for the first time this past weekend. Not far, but still. One instructor put him under water and sent him on his way, and his little instincts kicked in and he paddled his arms to the next instructor. He did this several times. His rear kept floating up because of the lack of muscle and extra padding in his rump, but he was so cute and loved it!

12. Yes, we are in 12-18 month clothing now. Sigh. It's just the way it is. The dietician at Shriners says we are doing everything right. He is a cute little chub. Size four diapers!

Charlie's sweet disposition and gleeful outlook continue to amaze me. Charlie is like a tiny ambassador who loves everyone he meets. People try, but they can't walk by him without a smile on their faces. Most stop and greet him no matter how they resist his charms - he simply wins them over. And he is a love to us, his family. He grins from ear to ear when we walk into daycare to pick him up, and he leans in for hugs. And he gives open mouth kisses! I am so proud of our little man, and he makes Ryan and I proud of the parents he allows us to be.

I have not taken his 10 month picky sticky photos yet - but here is one from yesterday being silly with a two headed alligator head rest ~~I wasted money on~~ was suckered into purchasing for him to sleep against in his car seat. We don't use it for that, because it is worthless. We use it to play with!

And here he is showing his "no hands" sitting skills.

SHUNTisfaction

2011-03-15T20:17:00.000-04:00

Charlie had his first MRI today to make sure his shunt was doing it's job of keeping Charlie's brain healthy and happy. And it is! Good shunt! Really, this was a baseline for all future shunt questions, a look at how things are today - as they should be - vs. how they might look another day - perhaps how they shouldn't be. Charlie's neurosurgeon remarked at how well he sits without even supporting himself with his hands, and was overall impressed with his development. She declared him perfect (as if I needed her to diagnose that) and sent us on our way.

The procedure was a rapid sequence MRI, which was super fast and required no sedation, but oh how Charlie hated it. He hated being restrained in a blanket, with straps around him and basically a clamp holding his head still. He HATED the loud noise of the MRI machine, and how he screamed! Bloody murder. It broke my heart and I tried to comfort him, but I am certain even if he could have heard me over the deafening clang of the action he would have felt little comfort from my assurances it was ok and he was such a good, big boy. Thankfully, it was really only a couple of minutes including prep, and the actual MRI was something like 30 seconds long.

Once it was over I was trying to rip him out of the restraints for soothing before the tech returned to the room. He thought I was nuts, but it wasn't his baby bawling, terrified strapped on a table! I couldn't get the head cagey thing off and I think the tech thought I was going to gnaw through it before he could release it.

To tell you the truth, I was dreading this MRI. I was dreading it, because in my crazy mommy mind, I figured that, though he was showing no symptoms at all and I had no reason to think so, I was sure it would reveal a shunt malfunction. Of course this makes no sense. Because if there were a shunt malfunction going on to be revealed, I would want to find out about it and have it corrected. But in my crazy mommy mind, no MRI would equal no malfunction, hidden or otherwise.

If I could only turn my worry off for a few days, that would be very, very nice.

Just to document - these are from Charlie's very first visit to church weekend before last. Yes, we are heathens and our son has not been to church for the first nine months of his life, even once. But now he has been, two weeks in a row, and we have even taken the Baptism class and have that particular sacrament scheduled for next month, on my birthday actually. My Quaker ancestors are probably turning over in the graves right now with the whole baptism thing, but we go to a Methodist church now and it's a nice compromise between my Quaker roots and Ryan's Catholic ones. Could we be any further apart!?!

This is obviously not during service, because Charlie is perched on the table of the activities center while we waited for friends to join us for lunch. And, to say we went to church that day is to speak the truth, because we did go there and go to a class, visit the bookstore and the activities center, talk with friends and mingle...but we made it so late that we didn't actually go into the sanctuary during service. I should have been Catholic with my compulsive need to confess!

Back to the Renaissance

2011-03-12T21:26:00.000-05:00

Did I mention it's festival time in Florida? I was not kidding. This weekend we had to choose between the Renaissance and Crawfish Festivals. We decided to go with history over mudbugs this year, and who knew the renaissance included fairies, knights, crusaders, wenches, victorian strollers, pirates, island wear, kiss me, I'm Irish shirts and green beer all rolled into one big people watching fanfare?!?! And the weather is simply perfection - gorgeous mid to low seventies today with sunshine and a light breeze. These are the days Florida is a pleasure..right before we roast to death starting in June.

Oh, and little toad stools. Check out that garden gnome...

These sunglasses lasted about four seconds, which is actually about three seconds longer than I thought they would.

I firmly believe, if you go out in public like this you are asking for people to take photos of you. So I snapped away. Here is a viking warrior princess and her knight - he is the one drinking the green beer.

Some, um, musketeers?

If you have never been to a Renaissance Festival, it's quite an event and the people who really get into this type of thing, really get into character. They talk with fake accents and call each other m'lady and m'lord. They drink out of great big steins and horns and obviously wear period costumes of one sort or another. And you just never know who you might see. You are just as likely to run into your dentist or lawyer trussed up in tights with a jester hat on or cinched in a corset as anyone else. But you might not recognize them....I'm truly not trying to make fun, not in a mean way, it's just interesting how very, very real these events are for some people. They come back every weekend for the entire run of the festival, and are their character all day, without breaking it. Except when I bought a water today, the serving wench (her choice of words, not mine) accidentally let her accent fall when asking what I wanted. She asked a plain ol' "What can I get you." By the time she delivered the goods, however, she was back calling me m'lady...

Even the little guys get into it - this kid is cute in his kilt. This festival runs for several weeks and each weekend has a theme of sorts - this one was based around the St. Patty's Irish thing, hence the kilts. There were bagpipers too.

There were ax throwing, knife throwing, star throwing and archery contests. Here are Charlie and Daddy after Daddy was awarded a gold ~~sticker~~ medal and some ~~plastic beads that probably contain lead~~ royal jewels for being a master ax thrower.

Our friends the Martin's, affectionately referred to as the Martian's as long as we have known them joined us with their daughter. So, Charlie had his first age appropriate date with Lucy who is two months older than Charlie.

There is even jousting. And human chess.

And, smoking fairies. It's hard to see, but this scene was just such an oxymoron to me. Ladies all dressed up as fairies and medieval wenches lighting up a couple of Marlboros. I wish I had taken a closer shot but I was trying not to be obvious.

Strawberry Shortcake, Chocolate Dipped Strawberries, Strawbe...

2011-03-12T10:02:00.001-05:00

The Plant City Strawberry Festival started last weekend and we took Charlie for his first "taste" of festival life in Florida. We like to go to all kinds of local festivals to be outdoors during this time of year. And the Strawberry festival is jam packed with one of my favorite things - strawberries! Every way you can think of them, and some ways you never dreamed. We personally sampled the famous strawberry shortcake that everyone MUST have at the festival and strawberry crepes - did you know over 3/4 of the nations mid-winter strawberries come from Plant City, Florida? Yum!

Charlie did wear sunscreen and didn't get burned. He also stayed hydrated and had a fabulous time!

Strawberry deliciousness!

No fair like festival is complete without Elephant Ears! They even had red velvet ones, and strawberry of course...

The Strawberry Festival has a queen, but she has nothing on this little prince! The photo would have been better but I was rushed by the line of people waiting to stick their kids in the giant paper mache strawberry chair. So, it was like sit, snap, run.

A Shopping We Will Go

2011-03-02T19:22:00.000-05:00

Gimme' Five

2011-02-27T13:18:00.003-05:00