tiny hands + tiny teeth= lots of love

Miles has discovered his hands. It took awhile, but he is making up for lost time. In fact, he has discovered all hands. Feeding time has become a constant competition between his hands and the bottle. I have to use my left arm to block his on-going finger puppet show just so he will eat. It's like going to a dinner theatre- at every meal. My right arm must hoist the bottle and also lend a finger to two to Miles- so he has something to squeeze. He is so amused by his tiny digits; he gets a surprised expression, wide mouth and bright eyes, every time he locks his hands together and raises them up. Additionally, Miles is working a double-shift on trying to suck his thumb. Last week he use a double-fisted approach- one fist had the desired thumb extended while the second fist was used to push and steady the first fist towards his mouth. Genius!

Miles will grab my fingers and pull them up to his face. Sometimes he is giving them a close inspection; other times he just wants to chew on them. Little Man has become particularly fond of his Grampa George's knuckles. Miles latches on to Grandpa G's hand every time he visits. I bet there is Moon Pie and RC cola residue that Miles has detected on Grandpa G, and he is hooked! Dr. G, our awesome pediatrician, thinks Miles is starting to sprout teeth. This would be viable explanation for his increased fussiness and new attraction to refrigerated chew toys. Miles really bites down on those chilled toys- like that Bond villain Jaws, the metal-mouthed dude featured above. I can testify to his chomping strength because I have gotten my fingers caught in the path between his needy gums and that soothing treat. Ouch! Yesterday, while Miles was enjoy a fillet of my pointer finger, I may have felt tiny teeth bumps- two separate locations where baby teeth might be trying to poke out. I can't tell how excited I am that Miles is going through a normal baby phase; I almost didn't believe Dr. G when she suggested this teething hypothesis. Since Jesse and I are getting used to coasting from crisis to crisis, news this normal fell on momentarily deaf ears. Certainly his behavior change was an indication of something more significant, or that's what I initially thought. Now that the tooth dust has somewhat settled, I am beginning to accept this development as a pure baby moment. An event that is honest and simple. I know that 90% of my daily thoughts are centered around Down Syndrome. Our new adventure into teething feels like a mini-vacation for my brain. I don't have to over complicate the teething, not yet. I know that we will potentially face orthodontic issues in the future, but right now I am going to enjoy the sprouting teeth. Even through all our difficulties, his new teeth buds remind me that Miles is still a baby- a sweet-smelling, "ah-goo" saying, finger ravenous baby. I feel much more grounded; I have a new happy thought to focus on. God bless baby teeth!

"He's got a good shot."

I just got off the phone with the on-call cardiologist. Last night I was wrestling with the idea of reporting some recent concerns I have to Dr. F. Jesse said I should make the call since I would stress about it until I spoke with a doctor. Miles only gained 2 ounces this past week; it should have been about half a pound. He is taking in the same, if not more, amount of food. However, his little heart is working even harder now, so he's burning off too many calories. Also, Miles is fussier at nap times, and by fussy I mean screaming, writhing and crying for a good ten minutes. He'll do this at least once or twice a day, and it always freaks me out. He's even upset when you hold him; comforting doesn't seem to help. He just has to work through it. Now, I wouldn't stress over his fussiness except it is listed as a potential sign of heart failure. We got a checklist from Dr. F- a list of behaviors and signs to watch for in Miles. That awful checklist is seared into my brain; I am on constant watch.
OK, so I didn't speak with Dr. F; I spoke with another doctor in her practice, and he was delightful. I rambled out all of my concerns, stammered over inappropriate weight gain and increased states of agitation. After a few minutes of dodging my real question, I finally asked it. "Will Miles make it to his surgery?" Make it. . .will he still be alive by July 25th? It hurts so much type that- it hurts even more to have that question rattle around in your brain. People constantly ask me how Jesse and I are coping. It's simple; we have to live in the moment. We have to feel the experiences for what they are- good and bad. Being honest about our emotions allows us to deal with the nightmares and to celebrate the victories. Victories range from small dealings (not eating the bubbles during bath) to monumental experiences (a good check-up with any doctor). After speaking with the doctor I found myself a poor state; the moment was awful and black. Knowing that my son's heart is slowly failing, and there's nothing I can do to make him healthier is beyond metaphors and analogies. The fact of the matter is that Miles' heart can't support his life. There is nothing I can compare to it; it simply is what it is. But it's that kind of reasoning that gets me through each day. I'm not living day to day; I am living moment to moment. Before the doctor called, I was in a good moment. Miles was into his second nap of the day, both which he took without a fuss fest. And then WHAM! I get the call, and the doctor answers my dreaded question with, "He's got a good shot." Miles has a good shot of surviving until his surgery. Good is not great, but good is also not bad. I wish we had better odds. When I started typing this entry, I was in a very bad moment. Now, just 15 minutes later, little man Miles is awake and in my arms helping me finish this post. We are now sharing a good moment filled with snuggles and kisses. I am also sniffing his head because I can never get enough of that baby smell! That bad moment, which reeked of failure and sickness, has retreated for now; it can't compete with the sublime joy of being with my son. I guess the Yin & Yang symbol comes the closest to describing my situation, which I think I've mentioned in an earlier post. Natural order does have balance, though it's scale is not always in sync with us. Like the Yin & Yang symbol, in my brightest hours, there is always the threat of sadness and fear. And in my darkest moments, there is always a glimmer of hope and love.

Just because. . .

I took this picture last week. Love that smile of his!

Breakfast of Champions

Miles and I breached the cereal threshold this morning. His pediatrician gave me the green light to start experimenting with solid (solidesque) food- basically, bland old rice cereal. I wanted to get a head start on solids because I am worried that Miles will have a harder time with the proper muscle coordination for eating. My motivation came from reading something yesterday said some child with Down Syndrome don't eat solids until after their first birthday; this really threw me for an unpleasant loop. Even if Miles doesn't master rice cereal anytime soon, he'll at least be exposed to the spoon. the bowl, and the yummy glue-like snack. I want to give him a chance to try solids. Most children start eating rice cereal around 4 months of age. We just took a few weeks head start. Hopefully, this early beginning will help keep us on par for reaching his developmental milestones. Since it is going to take Miles longer to learn how to eat, I simply introduce the concept sooner- seems logical, right? This culinary venture made me feel like a teacher again. My goal for eating solid foods is to scaffold the process. Bit by bit, and bite by bite, Miles and I will build his knowledege base every day. This was more of an exercise in task analysis rather than a simple mid-morning snack. But hot damn, my boy opened his mouth when he saw the spoon! He stuck out his tongue in anticipation of the food. And best of all, the majority of the cereal remained inside of him- for now. I am so pleased and encouraged. Baby steps. . .I know. I was able to snap a couple of pictures in-between bites. He looks so much older, sitting up in his Bumbo chair, with his rice cereal doubling as lip gloss. Can you believe he is already 3 1/2 months old???

Go Big Blue- but wait for me!

I am very bummed that Miles' surgery is falling on July 25th. Aside from the catastrophic event of having my child undergo open-heart surgery, I will be missing my 10 Year High School reunion. While I sweat things out in C'ville, part of my heart will be in Hopewell with my many beloved friends as they relive years of adventures over the cash bar at Dockside Restaurant. Guys, we really should have held it at Waffle House or Denny's- to be true to form! For starters, I loved high school. Honest, I loved high school way more than college. Better people, better music, better parties! In fact, of the 6 people I keep in contact from W&M, 3 of the 6 also came from Hopewell. Go figure.

The class of '98 from Hopewell High School was a rare breed. We were wild, sarcastic, hilarious, rowdy, combative at times (me included), quite intelligent, loyal, and fiercely proud of our town. Heaven forbid is you attended Thomas Dale (the true enemy), Colonial Heights (the snobs), or Prince George (our frenemy). Now, when I write that I miss high school I do so with rose colored contacts shoved into my eyes because 10 years back I couldn't wait to blow that pop stand. And it's true, you can never really go back home- since you change, the town changes, and the pieces never quite realign as before. I have a bit of a Twilight Zone tingle when I drive past ol' HHS- especially since I almost took a teaching position there 2 years ago. But missing the reunion means missing my friends I haven't seen in years- some even 10 years have passed. Man, I was really looking forward to retelling some of triumphs, escapades, heartbreaks, and catching up with some of the greatest people I have ever met. I stink at keeping in touch with people, but I want all the '98ers to know that I think of them often. All my girls from the tennis and soccer teams, my friends who date back the elementary school and even daycare (Hi, Wesley), my lifelong friends how have reached out to me lately- I mean, folks I haven't hung out with in years are sending their love and support to my family. They already love Miles, and they haven't met him. So on the night of July 26th, I need the following stories retold in my absence:

1. The leadership conference in Va Beach- Monkey, that teacher in her teddy, where I wore the balloons on the ride home, saving Angela's lip smackers from the hotel roof. . .

2. The senior trip- esp. the possessed pinball machine and the 20 hours on the bus

3. Mr. Fitch getting Flo-Be haircuts

4. Mr. Mac and his cats

5. The time Jennifer tried to convince Kristin Royster and me to steal the soccer bus at the Varina game

6. Every time we told our parents we were going bowling (Hi Mom and Dad!)

7. Riding around listening to Wu-Tang- every weekend

8. 80's day at tennis practice

9. "Go Netta"- Jennifer, that is especially for you!

10. senior year breakfast club- best reason to have study hall

11. Our last day school, when we ditched classes, and I got stuck in the display case on the Voc/Tech hallway, and we took pictures in Mr. Denzler's Jeep and in the back of Coach Henderson's truck

12. Oh- our awesome ice cream lady who made the homemade peanut butter sauce

13. When we all caught pageant fever- 11th grade

14. Mrs. Bell's class- and how the drug search dogs would always poop outside of her door

15. Going to visit Mr. Whip after hanging out at Klingman's house

16. Any every whack experience from Cater Woodson- especially our Earth Science teacher showing us "The Ring of Fire" 27 times and her inability to say "nickles" without sounding like a body part

17. Mr. Jones as the over-enthusiastic soccer coach and Coach K as the coach who wanted me dead

18. While driving Stuart to school one morning, I saw a UFO over the James River. He didn't see it so he can't vouch for me- but it's true!!

And on, and on- if you were there in '98, post your memories below!! I am craving nostalgia; I am jonesin' for a HHS flashback!

Aside from this never-ending list of highlights (ESPN 4 eat your heart out), I have billions of memories that happened on a much smaller scale, but will remain with me forever. I love you all, and you have no idea how sad I am to be missing our reunion. I hope we can have another get-together before we reach our 25th anniversary.

Tee Time Equals Me Time

I've got a two minute window to type our "hello." Miles is sitting, yes- sitting, in my lap just waiting to holler for attention. His diaper might me moderately moist and his tummy is gurgling for an afternoon snack. We just wanted to share the news that mommy has found a new escape. With all the crazy developments in our lives- a little vacay time is needed. However, vacay time and means is not currently in the picture. Now, I've tried all fun things to brighten my spirits- new hair colors, retail therapy, Guitar Hero marathons (naps permitting). Sadly, those sources of entertainment are fleeting and often leave my head an awkward shade of orange. However, this weekend I found a new, true source of Zen on a driving range. YES- golf is my new therapy. Never have I ever swung any type of club in my 28 years, but you wouldn't have known it. I owned the 2 iron- and by owning I mean I could launch that tiny ball an average of 175 feet- consistently and in a straight line. I am hesitant to bandy about the term phenom, since golf simply runs on both sides of my family. This is more like manifest destiny. Before each swing, I would empty my thoughts, focus on my posture, review the lengthy proper swing checklist, and relax my mind. And by Jove, it paid off in spades. After Jesse and I shot a collective 200 balls, I professed that golf is better than. . .well, you fill in the blanks. Obviously, that last proclamation is a bit of an overstatement, but I truly haven't felt that good in weeks. In swinging that 2 iron, I was able to block out my constant nagging fears of Miles' upcoming operation, the dread of learning new bad news based from the MRI, and all other related bad mojo, since fear is trying to be my unwelcomed but constant companion. My second thought, after learning how awesome golf really is, was- we need to find a set of infant clubs so Miles and I can hang at the range all day. One would think the appeal of the driving range is releasing pent up anger by smashing those balls with all your might. For me, the experience is not an exercise catharsis. Transversely, hitting those balls is a form of meditation. I can focus on my form, and ignore all else around me. Granted, if I can score baby clubs for Miles, I promise not to ignore him. He'll just have to hang out in the Baby Bjorn when it is my turn to swing. His added weight should add some help ground my back swing.

Hello from Miles

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Somebody found the Caps Lock. I was worried that I would have to censor him with a couple of those "FCK" letter combinations. Who knew an infant could have such a salty mouth?? Ha!

So many developments, so little time to type

Okay- We have hit the ground running, and kicking, and rolling over from our tummies to our backs. It's much cuter when Miles does it; he has real finesse. Let me just share our news in list format.

1. The surgery has been scheduled for July 25th. We are going up a few days earlier to have a pre-op meeting.

2. Just found out today that his surgeon, Dr. Peeler, wants an MRI prior to operation. We are going to C'ville on July 17th to have that done. They said Miles can't eat after midnight prior to procedure, and we take him in at 6:45 am. I am predicting a rough morning. Any suggestions on how to tell Miles we are withholding his food for medical purposes? When this kid gets hungry, all the stops are pulled at our house. He is Audrey II in infant form, "Feed me, Seymour!! Feed me all night long!!" See below.

3. Miles IFSP was written yesterday. His evaluations went amazingly. An IFSP is like an IEP for a family. Leading up to his surgery, Miles will receive OT (occupational therapy) weekly, per his IFSP. The service provider will come to our house in 45 minute time blocks and work with me and Miles. As of now, it looks like he doesn't need speech therapy. Though speech will come into play when Miles starts eating more solid foods- same muscle group. Of all the areas of development measured, he was on par for everything!! Miles rolls, babbles, tracks with his eyes, socially smiles and giggles- we are doing OT to ensure that he continues this phenomenal development. I worry that we will loose time following his post-op recovery, which could last from 6 to 8 weeks. We are working with a local agency called CDR, Child Development Resources. CDR conducted the evaluations and will provide the related services in the IFSP. Though they are not technically affiliated with my school division, they do have a close working relationship. In fact, they will help write a transition plan for Miles when he approaches school age. And in my division, I can have him placed in a program by age 2. Right now, I am super thankful that I know the in's and out's of special education. One can get easily lost in the acronyms alone- IEP, IFSP, FBA, BIP, IDEA, LEA, FAPE. . .it truly never ends. Please check out CDR's website; we couldn't be luckier to have them in our community! http://www.cdr.org/

The program which are working under is found at the following link: http://www.cdr.org/?q=node/30

To learn more about IFSPs and the Infant & Toddler Connection, check out this link: http://www.earlyintervention-va.com/overview.html

Happy reading!

Yesterday- almost 3 1/2 months old

Miles in front of a mirror I painted- lots of fun!
Same mirror- different view
Playing with his new stacking toy- thought it would make a cute hat of sorts.
His sophisticated grin- looking pleased and appeased.
Preparing for a Daddy kiss! My favorite, too!

Moment of Zen

Last night, after writing my post, I realized just how bummed I've been lately. I've been suppressing a lot of my anxieties, fear, and anger. As we all know, shoving those negative feelings down inside never accomplishes any good. Writing last night was so cathartic. As I left the computer and joined my husband and son in the living room, I still had the tear track marks fresh on my face. But sitting with my two favorite people, telling Jesse exactly what I've been going through, and watching Miles and his Daddy play began my healing process. However, my true moment of Zen occurred later that night. As I was putting Miles in his bed, he let out a real laugh. Not some weak babyish coo, but a real belly laugh! It actually startled me because he was asleep. I decided to sit back down with him and watch him for a few more minutes. Sure enough, not two minutes later he cracked a devilish smile and let loose with a wild laugh. Craziest and most special moment to date- it was like he knew I needed that laugh. It made my day and night- heck, it has made my month. His slumbering laughter is a riot- so loud and strong, like someone just whispered to him a dirty joke. This is not some timid, childish chuckle- this is a barroom gut giggle, a laugh that makes other people laugh. I can't wait for the rest of the world to hear it! It's true what they say about the healing power of laughter. . .I feel a billion percent better!

More trouble for Miles' ticker

We got some more troubling news from Miles' cardiologist today. She diagnosed him as having Right Pulmonary Stenosis ( http://www.americanheart.org/presenter.jhtml?identifier=1321. ) Immediately following the news, she chortled and said we probably never thought we would learn so much about medicine. And know she was trying to be nice, but I wanted to slap her. To her defense, there was no harm intended- her timing just stinks. It just that my heart has become so heavy worrying over my son's heart. The doc said a stint can be placed during the surgery for Miles' VSD ( http://www.americanheart.org/presenter.jhtml?identifier=1306 ). I broke down after the doctor left the examining room. Thank God Jesse was there! The hardest part of the visit was hearing about where Miles' will be post-op- in the PICU (pediatric ICU), and that we can only see him for a few minutes at a time with only 1 or 2 people going in. His room will be in isolation- no roommates. The thought of my tiny little man hooked up to tubes and wires, all alone in a cold ICU room is too much for me at the moment. Knowing I won't be able to hold him as he recovers has me in tears right now. We will know for certain when the surgery will take place by the end of this week; it will probably be sometime in July. I really wish July would get here so we can put this behind us. The surgery, though I dread it in some regards, will ensure a much stronger and longer life for Miles. I am very "pro" surgery, and I am becoming very "con" waiting for surgery. Waiting for the surgery is turning into a real struggle; I am always on constant look-out for cardiac failure, for signs his heart is starting to fail. It is hard being strong for your son when you are so scared on the inside. Fear aside, Miles is still growing at an amazing rate. His weight and strength astounded the cardiologist- she sees no external signs of cardiac distress. Looks like all the distress is coming from me.

3 Months and Counting!

Miles with his Grandaddy- this picture was taken a week ago, so he's even bigger now. On Thursday, he weighed 10 lbs 14 ounces. A week prior he weighed in at 10 lbs 3 ounces. Miles is in the midst of a growth spurt. Notice his adorable smile- which he flashes all day long! This coming week we are meeting with the cardiologist. Hopefully, we will learn more about his upcoming surgery- surgeon's name, time, date. . .basically everything. I am getting anxious; it looms over most of my days. The unknown can be hard to ignore- especially when you have an overactive imagination.