Monday, July 30, 2007

To D.C. and Back Again

So you may or may not know that Mike and I were going to the D.C. area this past week, first to a conference and then on to see friends. You also may or may not know that Thomas was diagnosed with an extremely rare syndrome back in January. We found out while he was in the PICU, in fact the geneticist chose to break the news to us actually in his hospital room. It was really a good time, but another story I will not go into now. Well, this conference was for families of boys with this syndrome. We were very wishy washy about whether or not we wanted to go back when we found out about it. My parents were very encouraging of us to go, offering to keep the kids, and a friend I have meet through the Internet who has a son with the same syndrome was going, so we decided to go for it. (The fact that we would also get to spend a couple of days sightseeing and hanging out with our closest friends who moved to the area earlier this year was a huge bonus.)

About the conference. The main speaker/presenter was a woman with a practice in the Annapolis area. What I read on her website before the conference indicated that she works with families to write the best possible IEP (individualized education program) for her patients and then helps get the best possible and most effective services (like therapies) to bring that plan to fruition. Sounds good to me, especially as an educator, but I was a little skeptical. She charges a lot of money, and I mean a lot. Could she really provide what she offered, which to us was expertise, or was she praying on our desperation and profiting? We decided not to take Thomas, he had been through so much this year and traveling is never easy with a baby. Mostly we were going to check it all out, and our hope was to get some information that was more accurate than the doom and gloom picture that our geneticist painted, one we already knew Thomas would best.

You must understand this syndrome is rare. None of our doctors have seen it, there is little information out there, even with this vast arena we call the Internet. A boy has a better chance of being struck by lightening, probably twice. Well, the rarity really hit me we when found out there were 13 families at the conference, 3 from other countries. And our "expert" had data to share on 10 boys she had evaluated. This conference was going to bring her numbers up to 25. I must say that left me feeling lonely and also chosen. Maybe that doesn't make sense, but I don't know if I can elaborate.

I liked the doctor. She is the kind of person you are drawn to instantly. Her presence is felt, she seems important. She wants to help kids. She wants to help families. She wants to change the doom and gloom picture. I am for it, as it is not fun to hear what we heard about our son's future and from what I saw of the boys at the conference, it is not a good depiction. I want to do what we can to help.

The conference was a good kick in the pants for me. It reminded me that I need to be doing more of the things I used to tell parents to do when I was a teacher. This is serious. This is forever. This is my son's life and, really, both my kids are depending on me to set them up to be as successful as they can be, aren't they? I can be doing better. Now, don't feel you need to call or write and tell me I am doing good, or so much already or whatever make me feel better thing you are thinking. The truth is I can, and so I will. I will do the best I can.

The rest of the trip was great. Mike and I needed the time together, and we really enjoyed ourselves. Annapolis was a fun town. Lots to do and see. We walked around the Naval Academy and my respect for my brother-in-law, a graduate, grew 10 fold, which wasn't easy considering my already high level of admiration. We were able to see and eat dinner with old friends from church which was fun and refreshing after the long day of doctors and presentations. Of course, I took no pictures of our night with them, so there are none to post here.

On to D.C., where we stayed with my best friend Mary and her husband (again, I took no pictures). I miss her so much and being together is always the breath of fresh air I need. We did a lot of the tourist sites which was hot and tiring, but completely worth it. I did take pictures of this, however I am sure nothing that you haven't seen or could google.

I will admit here and only here(which means I don't really want to talk about it) that there were low moments . As we walked around the Naval Academy I thought about how my son would not go to school there. It would not be an option. Am I being harsh? Am I supposed to be a Polly Anna who believes anything can happen and smiles naively through it all? After hearing about brain capacity, speech delays and behavior issues, I just didn't have it in me. I fact is stared me harshly in the face. In reality, who cares? We are not from military families, this is an elite school, so many kids would not be going there, but it would have been fun to dream, you know? It was just like the Future President onesies we saw in kiosks. It felt like the dream of anything is possible has been taken.

At the end of the conference one of the dads made a DVD of snap shots taken of the kids and families. He ran them to the song Anyway by Martina McBride. There is a line in the song:

You can chase a dream
That seems so out of reach
And you know it might not ever come your way
Dream it anyway

Maybe I am not alone in feeling this way.

My new dreams are for walking, running, playing a sports. Talking, yelling, calling a friend on the phone. They are enough. They would be amazing.

The conference really confirmed to me that Thomas is who HE is, and not defined by this. He has a great personality with likes and dislikes and he lets us know both. He adores his sister and thinks his dad is hilarious. He is happy and he is healthy. He is my son. I wouldn't change a thing.

Sunday, July 22, 2007

Happy Birthday to You

Happy Birthday Thomas (on Saturday!)

What a year it has been! I am so excited to see what this next year brings for all of us.
Thomas' party was a great time. He got to swim, try cake for the first time (which he liked) and try ice cream for the first time (which he LOVED). Olivia fed him almost her entire bowl of vanilla. It was so sweet, a memory of my two kids and their special bond I hope I never forget.
The party was especially great for Olivia. Her cousins were here, the closest thing to a celebrity in her life, she spent hours in the pool, again there was cake and ice cream and she loved all his presents. Score for her. This having a brother thing does have its perks.

Tuesday, July 17, 2007

Hard Hat

We picked up Thomas' DOC band today. He was less than thrilled. As soon as the therapist put it on he looked at us like we were crazy. Within minutes his head was soaked. Man that kid is a head sweater, and this is his worst nightmare. At home we would see the trickles of sweat running down his cheek. He fussed his way through dinner, was inconsolable until we took it off for an official head-check and bath. He was too tired to care when we put it back on and fell asleep during his bottle. I guess that extra 6 oz. will take some getting used to.

I hate to say it, but I hope he adjusts quickly. This kid has been a dream patient through everything (okay, except needles, but do those count? Nobody likes needles.) rarely crying or getting fussy. He had one bad day after heart surgery. One bad day. I think that it what makes it harder for me to see him have a hard time with this. What makes it worse is that we really went through some changes trying to decide whether or not we wanted to even get the thing. His flat spot is not that noticeable, he has gone back to sleeping on a flat surface, maybe it would self correct. It was the stinking insurance company that turned on the final Jeopardy music causing us to make the appointment. They wouldn't pay once he turned a year old. He turns a year old on Saturday. Love you Aetna!

So now we will be doing our best to keep that boy in air conditioning. No parks, no walks, no hot cars. I signed him up for this torture device, the best I can do is make it as comfortable as I can for him.

Really, I know it will be fine, that he will adjust, it was a bad night, whatever. The truth is I think that after this appointment I used all my remaining brain cells. Over the past 8 months I have taken in so much new information about medications, feeding strategies, neurological disorders, muscle tone, Scottish Rite (let me in!), heart defects, more medications, exercises, car seats, cornea myopathy, chromosomal mapping, and more that I fear I have no more brain cells to give. Unfortunately we start a whole new topic with testosterone therapy on Thursday so I better start clearing out space. I mean, what would happen if I was illiterate? Uneducated? Had to work full time outside of the home? What would happen to my son? Maybe he would be just fine, maybe none of this matters and it would all work itself out in the end, or maybe I really am increasing his chances for success, quality of life and access to the world around him. Probably I will never know, but I hope. I mean look at this adorable face, I would do anything for him.

Some pre-helmet cuteness:

Post helmet and just as cute!

Monday, July 16, 2007

Doggie Vac

Before we had kids, I remember Mike and I wondering could we ever love our own child as much as our dog? There was no way that he or she would be cuter than Dexter. Not to mention his loyalty, his companionship, his charm. We were in doggie la-la-land, and he had it good. Treats, long walks, tummy rubs, sleeping in our bed. It was doggy utopia.

Then Olivia came. Dexter who? Treat money was spent on diapers. Long walks were now with a stroller not a leash. Tummy rubs? I had to hold the baby. And the few precious hours of sleep I got were not going to be spent with a smelly dog, for we no longer had time or money to groom him as often ourselves or professionally. He knew his position in the food chain had changed (there was rarely food in the bowl), and thankfully never took it out on her, instead he started running away.

It was fun, driving the streets of our neighborhood in my pajamas, on four hours of sleep, hanging a squeaky toy out the window and yelling with my newborn in the back seat. Good times.

Well, thankfully life has improved greatly for Dexter over the past three years. Olivia learned to throw a ball. She started walking and later holding the leash herself. She loved to be outside and even moved to a big bed where there was plenty of room for Dexter.

But best of all was when she started eating. Food fell from the sky in what must have seemed like a dogs version of those raining Skittles commercials. A regular smorgasbord for Dexter, and I was never going to complain for I never had to sweep.

Then came Thomas and it is was like Dexter knew there was a light at the end of the tunnel. He loved on Thomas from the beginning, licking his toes and head, laying next to him on the floor, letting Thomas pull his hair. Never once has he run away, even when the dog bowl was empty. And now it is time for the pay off. Cheerios, black beans, crackers, veggie puffs, cheese, banana bread. Dexter is in dog heaven. And I am glad, for he deserves it. He's a good dog.

Sunday, July 15, 2007

Helmet Head

We are going to get Thomas' Doc Band helmet on Tuesday. The casting was a couple of weeks ago and I think it is a positive sign for how he will handle the actual helmet that it went great. He hardly whimpered.

For some reason, I could not stop giggling when he had the cast on. I mean how cute are those puffy cheeks and only the pacifier sticking out from the mesh?

I am amazed how much stronger he is since his surgery. He is holding that heavy cast up while sitting practically on his own. What a stud!

Wednesday, July 11, 2007

Give me your tired

Being a mom makes you tired. At least it does me. I take a nap almost everyday now, and boy do I feel lazy. Sort of. Dr Pepper, who used to be my best friend, is now my alter ego, and ironically most likely the cause for my constant sleepiness. Yes, mom I am taking my vitamins and and eating fruits and vegetables. Yes, I am even taking my calcium.

In this house we are sleeping the best we have in awhile. Unfortunately, those under 4 feet tall like to awake with the sun. Without fail, there is a three year old at my bedside or calling for me from hers by 6:15. Shortly there after I hear the thump thump of Thomas kicking his feet against his mattress. I beg for more sleep, offering books, polly pockets, even my own bed, but she will not be thwarted, and by now the kicking in the other room has turned into a yelling/calling sound. I must get up and tend to those I am responsible for. I mean three is a little too young to be teaching her how to make her own cereal bowl and turn on the DVD, right?

We found an appropriate song for our little early bird by Trout Fishing in America. It is called My Hair Had A Party Last Night.

Surely, those who wrote it have a child with curly hair.

I guess my sleeping in days will have to wait until my kids are teenagers, until then, feel free to call or pop in before 7. We're up.

**P.S. Parents, you do not have to succumb to nursery rhymes and kid sing alongs as your only source of musical pleasure when with your kids (however we do enjoy those, too). There are a bunch of great artists out there that are making good kids albums, like Trout Fishing. Sara Hickman, Lisa Loeb and Dan Zanes are a few of the ones we really like. AND, for those of you from my generation, They Might Be Giants even has a kids album, and it is not bad (we may be late on this since we do not have cable and therefore do not watch the new Mickey Mouse show which it appears they wrote the theme song for). Oh, and for those who enjoy a little flava, Andre 3000 (of Outcast) has a kids album, too. And apparently a show according to itunes. Check it out.

Sunday, July 8, 2007

Rain, Rain, Go Away

Our lunchtime conversation:

"Has it been raining three years or five years mommy?"

"Feels like it has been five years."

Nothing like having a pool party to go to, something the whole family would love, and looking up into the sky to see those luminous grey rain clouds. Oh but wait, now it is sunny, now we can go! Oh, check again, it is raining. What is up with the moody sky?

Plus, Olivia has an extreme fear of thunder. When we were getting out of the car after church, she was walking up to the house when the thunder started rolling. She immediately started crying and running in circles, for she didn't know if she should run to me or the house. It was cute. Where was the greater safety? Mommy's arms won out. It's great to be a mom.

Despite the rain we have had some outdoor fun.

Swimming (Thomas' first time):

Bike Riding (Olivia's first bike! Thanks Kate for passing it along.):

A visit to the Nasher Sculptor Gardens (which BTW is free the first Saturday of the month):

We hope you too are finding time for some outdoor recreation. To quote the late, great John Denver, "Sunshine on My Shoulders Makes me Happy".

Tuesday, July 3, 2007

This is Dedicated to the One I Love

SIDE NOTE: I started reading "mommy blogs" shortly after Thomas was born when my friend Kim (Hi Kim! I miss you!) turned me on to a few. I always thought it would be fun to have one. I also was so surprised to see that people were paid to have blogs. Yes, paid. You can check it out yourself if you don't belive me at I thought, paid for writing in a journal? What? How hard is it? Obviously much harder than I thought being that I can't even post once a week. Oh, the things I think I would be so much better at than those who already do it. Much like when I was a waitress and I said I wouldn't let my child eat french fries when we went out to eat. How hard is it when all you have to do is just not tell them they are on the menu? Yeah right.

I digress...

Our family was so excited to dedicate Thomas this past Sunday. We originally had the service scheduled for January 24th. Being that Thomas wasn't released from the hospital until January 17th after that nasty bout with RSV and we were basically told not to let him around anything that could possibly carry or breed germs besides ourselves, we had to cancel.

It was a special time for Mike and I. If nothing else, this experience with Thomas has taught us that this life is not about us. We are not in control, of anything. Despite our best efforts. Thomas' life is for God. We are here as his shepherds and we are so honored to be chosen. We are dedicated to be the parents God wants us to be to both our children. This has proven to be so much different than we thought it would be. And it has proven to be so much better.

We were thankful to celebrate afterwards, at what my great uncle called Thomas' Post Surgery Coming Out Party, with friends and family (we had over 70 of you stop by! Wow!). We fear nothing now, as we know God will carry us through, using those around us when needed. We are blessed with so many who are willing to be used.

Unfortunately, we took only a few pictures at the party. Here are a few from the church and after at our house. Oh, and I will throw in some cuteness that occurred while Mike's sister and brother-in-law were here with their baby. She is adorable, and believe it or not, her personality is even cuter.

CUTE, CUTE, CUTE. And yes, Olivia has on bug pajamas. They are her cousin Aiden's and I don't think she will be giving them back willingly. I tell you, the girl is coo-coo for anything with 6 or more legs...