Pic du Jour

Thomas, you're gonna need to work on your Blue Steel...

Henry Huggins

Perhaps Henry's "Blue Boy" antics might have actually been a blessing in disguise. It seems as though the anti-seizure medication he's been put on, Keppra, has allowed Hank's development to BLOSSOM! I am not able to find any articles on Google supporting this theory (can you?), but in talking with a couple of his therapists, it has been their experience as well. They work with many children with many varying delays and development levels on many varying drugs. A couple children have been put on anti-seizure meds as well, like Henry, or had an existing dose adjusted, and developmental growth has become obvious. Needless to say, I am thrilled. Not only is he back to himself, but dare i say even MORE SMILEY. Maybe because he's figured out WHY to smile and not just as 'something to do.' Either way, who cares? It's great!

Squinty smiles are awesome!

Here is where Henry is at. He'll be 18 mos. old on July 28th (time's a-flyin'!):

• Henry rolls actively from side to side, and now, within the past week or so, forcefully rolls onto his tummy with ease. He'll even hang out there and SMILE at me (unprecedented). He does not prop himself up with this arms, but he does lift his head up to a 45-60 degree angle. There is some strength there. I also believe he's able to smile at me while in this position because he's figured out how to get out of it easily. He looks up, arches, and POP - back onto his back. Good boy!



Ooooh... chilly!

• Henry sits up very easily, strong and steady with the assistance of his Bumbo chair. He does this without getting tired or restless, for 20-30 min increments. Without the chair, he cannot sit up independantly yet; I'll toss out that he is doing this within 6-10 months (purely guessing here, zero pressure or anticipation).
• Henry can wiggle, rock and roll (!) 180 degrees in the span of about 30 minutes. That is, he's laying on his back in one direction and is in the other when i come back. Oftentimes at night, we lay him one way and he's the other when we wake up - or 'better yet,' his legs are hanging out through the slats. Tis only a matter of time before he cries about that cuz he's stuck. I remember Thomas got his legs stuck ALL THE TIME!
• Henry can reach out, grab an object, hold on to it, and often transfer it to the other hand steadily and keep holding on, between one or both hands, for 10-20-ish seconds. This is working on his fine motor skills. He's quite intent with his DESIRE to hold the object - you can see the concentration in his eyes - but his fingers are a little slow at catching up to HOLDING ON to the object. The more 'fun' the object, the longer these numbers tend to be. As with most kids, a large bottle cap, or hair clip is way more appealing than a purposeful rattle.



Yum Yum!

• Henry is starting to EAT! This gigantic gradiose milestone is being performed in baby steps. We can thank Shirley for pushing forward on this and it paying off. I truly believe his Keppra is helping with this development as well. I believe his brain is allowing him to process The Steps to Eating the way he should. So far, we have tried bananas and he coos throughout the feeding. The feeding goes like this: touching his lips with banana on the spoon, a mild objection, then submittance with a slight opening of the mouth, and then a very slow processing of the food. Surely some comes back out, and there is sometimes a mild difficulty in swallowing, but nothing too alarming. The amount we are giving him, per spoonful, is smaller than the size of a pea. And we give him about 10 of these per sitting. My goal is to do this 3-5x a day. At the end of this week, i will migrate to applesauce slightly thickened with rice cereal. We do not want it too watery, and we do not want it too thick. It will be quite some time, i believe, before there is talk of removing his g-tube. Perhaps years. But that is fine with me. However long it takes, i'm cool.
• Henry is clapping! I've seen him do it on command a couple times, with prompting, and i've seen him mostly do it on his own, out of the blue. It is so incredibly sweet to witness, because it's totally clumsy, hands all backwards, but he's talking while he does it, and usually smiling. And speaking of "doing things on command," his therapists (all three, Speech, Physical Therapy (PT) and Occupational Therapy (OT)) are all working on getting Henry to mimic, or copy, what they do. By saying "you do it," the goal is to get Henry to gain new skills while also learning to listen to commands all in a playful manner. I can almost get him to clap by simply saying, "now YOU clap!" Almost. :-)
• Smiling is nothing new to Hank, but as i hinted at above, now it seems as though Henry is more purposefully responsive when smiling, or cooing. My friend Natalie swears that Henry immitated a barking dog the other day. It was a yippy dog and the next thing she knew (I was away from him, swimming), he started saying quickly "meh meh meh meh." She's probably right! When people walk into a room and say "Hi Henry," he turns his head to greet them with a purposeful and sometime recognizing smile. He DEFINITELY knows his Mommy and Daddy and brothers. Sammy continues to make Henry smile instantaneously. That said, its a good gauge to know whether Hank is having an off-day. If there is a delay or lack of smile, something's up; that is the first indicator I used the Sunday he turned blue to knowing he was off.

I feel the most confident since Henry's birth that things are moving in the right direction with proven success! With his newfound strength and focus, i can almost SEE him walking in the future. I can see his little tongue coming out, for concentration and balance, and him looking over to smile at me as if to say, "See me Mommy?! I'm WALKIN'!"

I also wanna take a little second here to acknowledge everyone's LOVE of Henry. I think the amount of people who have fallen for my little guy simply through this blog and his photos extends beyond my comprehension, and to YOU GUYS, i humbly say Thank You. To those of you that actually interact with him, are watching him grow, have watched his face transform, and are watching him outgrow the car seat we still buckle him into - I thank you as well. It's so truly heart-warming to know our family, and especially Henry, is surrounded by such kind, caring loving people. You guys ROCK! :-)

Gazing into the Big Bright Future!

Maine Vacation 2011

Right off the bat, lemme say what an INCREDIBLE time we had in Poland, Maine, from July 2 through July 10. It might easily have been the best time, since the creation of T3... T4 and T5! Just awesome. Now - to backtrack...

Since the addition of our wee ones, we've chosen to make this trip through the night, for several reasons. Usually, it's cooler driving temps. Ahh. Less traffic (even with trucks) and of course, the idea is that the kids will (mostly) sleep through the night since they would be anyhow. So we fired up that plan again. This year, instead of Dad following us in his car, we consolidated the whole crew into our van. Since that meant adding the seat we normally have out, for Dad, that also meant packing ultra conservatively. And that didn't seem to be a problem either, which was great! I did not bring things like a Pack-n-Play (one there!), the double stroller, or lots of bouncy seats or play toys. Each kid had a small suitcase, Ron and i had our big one, and Dad's small one. Aside from other odds/ends IN the van, we had a roof pack that held all our towels, blankets and Hank's Bumbo seat. We done did GOOD for a party of 6.

A view of the... ahem... CAMP!

The drive was rather uneventful. We didn't get lost (we shouldn't, at this point!), gassed up a few times, and the kids (either both or one) only woke up now and then. Henry was a DREAM traveler, either sleeping or cooing or smiling. He was a happy guy.

Dad, ready for his big excursion!

[Quick side Henry Update: His anti-seizure medicine seems to be doing the trick. After a rough first week of adjustment (read: crotchety, cranky, ansy and whiny - poor bugger (poor us!)), he was back to his normal, cool, smiley cutie pie self. No more blue, no more sleepies. Maybe this is what he needed.]

CJ

We pulled into 'camp' around 9am and it was a beautiful day! The water looked AMAZING. The house was HUGE on a nice mowed lawn. We all checked out the nooks and crannies of the house. Despite it not meeting several expectations (which i will not get into for the purpose of this blog), we took some documenting pictures and made due. It was incredibly roomy and easily accomodated the 10 of us; my cousin Kathie and her family, who we always get together with on our annual vacations, joined us later that morning.

Warmin' up with a popsicle

Throughout the week, we had an awesome time swimming in the lake, playing with water balloons, roasting STUFF on the fire, taking bike rides to town (with bike-rack-on-the-van pickups!), puzzles, games, naps, grilling, EATING (!), and just plain enjoying our time together.

Sam and Thom were introduced to bunk beds for the first time, and took to them like seasoned pros. It was GREAT, and as a consequence, we've attained a great bargain on a sturdy good-looking set of our own, which is already up and being used (we don't fart around!). Thom is still in the process of potty-training and had many successes with a couple accidents; only 1 tub wash-down! Sam practically lived in his swim trunks and swim shirt and was getting more and more comfortable with the water. By the end of the week, he no longer felt like he 'had' to wear his float vest AND innertube combo. He was sans gear and getting thrown into the air and going under like it was his job. Not even holding his nose! Good boy. I'm betting by next summer, or soon thereafter, he's honest and truly swimming! I can't wait.

Sam. Is. Pumped!

Now THAT'S a boot!

 On July 4th, we took a side-trip to Freeport to visit The Searle's, family friends of Ron's. Bill and Jacquetta have always graciously had us over for lobsters and nice conversations. This year, our visit was a little more brief, and we brought Kathie's family too, but not without great stories and a full yummy spread of burgers, dogs, lobster, shrimp and corn! YUM! After our visit with them, we headed over to LL Bean (the original!) for their fireworks display. Several of us got Ben & Jerry's ice cream and enjoyed the crowds and some folk music. Their fireworks were good and Tommy sat on my back in the Ergo oohing and aahing and yelling "SEE THAT ONE MOMMY?!?!?!" Folks thought that was funny.

Sam's got the Gift.

Posing before the Big Ride to Town.

Suds Monster!

Kathie's mom Marge and her husband Dick had us to their house for a big roast dinner on Friday night. Even Tommy liked the meat and Sam couldn't get enough green beans (don'tcha LOVE when your kids want seconds and thirds of VEGGIES!?). Marge came over to our camp almost every day to hang out, sun and swim, being that she was only 5 min away! She was in love with Hank and was lookin' for snuggles!

On our last full day, Dad's 1st cousins Denise and Jean-Marc (and his wife Rita) drove an hour to see us. I have not see, these guys for about 12 years and they hadn't changed AT ALL to me. It was awesome. They were loaded full of memories of Dad and his brother, their parents, as well as my mom. I really enjoyed chatting with them and we talked them into joining us for lunch. I used the excuse that they were helping us finish up food, but that was only half-true! Ron, in true awesome-cook fashion, whipped up left over burgers, dogs and sausages.

L-R: Dad, Jean-Marc, me, Rita (back), Marge, Denise, Kathie

Hank and the LAAADDDIIIEESS.... *meow*

Saturday was spent casually cleaning and packing. Kathie and her gang headed out by evening to go home (Lewiston is 40 min away) and we decided to sleep until about 4am, being a little more refreshed for the drive back. That worked out well. The kids napped often and there were only a couple little screaming/ansy sessions. I think Dad was quite ready to get back to his space with peace and quiet. :-)

Next year, we're not sure if we'll be in NY or back to ME (due to Kathie's husband John's employment situation), but either way, we're sure to have fun again!

[For more pictures, click on Dad's FB album, ours, or Kathie's.]

The MAINE Gang!

Brown Bear, Brown Bear!

Brown Bear, Brown Bear, by Eric Carle (of Hungry Catepillar fame!), as read by Thomas Magnum Telford:

My Big Boy

I've been thinking about and observing Samson a decent amount lately, for some reason. I'm watching him grow into A Big Boy before my eyes. I'm listening to his words and phrases, the matching expressions on his face. The way he "quizzes" me on Star Wars trivia and then when i get it right, the patronizing, but approving eyebrow-wag while saying "Pretty good, Mom... I'm impressed." Pair such comments with the innocense and naivety to the knowledge that I've been on this planet for FORTY YEARS and definitely know that Princess Leia is Luke's sister, and the whole thing is priceless and heart-warming. Sam often puts down what he's doing to go out of his way to hug me, a lot of times out of the blue (read: he doesn't ALWAYS want something!). Samson's eyes get large and concerned when he sees me crying, and the way he gently caresses my face and says, "Don't cry Mom" seems almost surreal and way beyond his years...

On the other side of this coin is Samson, the biblical icon who flies into a rage when he's angry. [He does not, like the story, cause too much of a rukkus when I go to cut his hair - quite the opposite really.] Sam boldly talks back, only occasionally showing TRUE regret for his outbursts. But mostly, he seethes beneathe a deep furrowed brow, giving me a look quite resembling Jack Nicholson in The Shining. I think most of it is for dramatic effect, given the nature of Sam in the paragraph above, which actually makes the whole incident kind of comical and endearing (in retrospect, as these things go). Sam "tests the waters" like a true champ. When he's on his game, i could strangle him... with a SMILE!

"How DARE you talk to your mother like that?!"
"Samson, don't you push Beegsley like that! That's RUDE! He didn't do anything to you!"
"Sam, don't step on your brother's foot and then try to tell me it was HIS FAULT it was in your way! I'M NOT BUYING IT!!!"

Already, a mere 5 years have passed, and so many milestones and cute little moments have become a blur to me. My friend Natalie often reminds me of things Sam did, and i look at her, befuddled and embarassed, that i cannot remember such memorable events. I am thankful for this blog, for documenting, both in pictures and words, but i think, if i am going to use this as a reference tool, i need to write more anecdotes. More stories of things said and done, the things that seem oh-so-unforgettable at the time, but have a way of becoming dust-bunnies in my brain, forgotten under other thoughts and concerns.

Samson Vonnegut - i daydream all the time of the many steps you'll take to becoming a self-sufficient man. When you told me last night, very matter of fact, that you'll do me a 'favor' and put yourself to bed, i responded, very matter of fact, and casually with, "Okay Sam." You said, "Yeah... you get Tommy all settled in, and you can be all concerned with him, but i'll just sneak out and tuck myself in. It'll be cool." And then we proceded with story time, both boys, snuggled into Mommy, laughing and playing and sneaking hugs and kisses...

... and when it was TRULY time to get into bed, i checked and said, "So Sam... you still wanna put yourself to bed?"
"No. You can do it. I want you to put me to bed, Mom."
And i smiled... and said, "Sure, buddy. I'd love to."

I'll tuck Sam in for as long as he'd like. But i draw the line if his wife is lying next to him in bed. Then she can do it. ;-)

We Are Home

To start: Henry and I are home. :-)

To back-track: Thursday evening, a couple docs from Neurology returned to re-hook-up Henry for a second EEG study. Once again, the RoboHead look. Yuck. I hated it the first time, i was definitely not pumped for the second time. For two main reasons: 1) This study greatly limited my freedom of movement with Henry. If i thought he had too many wires before, this made it look like nothing, and 2) the first study left several sore spots and some scabbing, from reaction to the electro-gel used to conduct the study. Poor lil bugger's sensitive head did not like that. And now he had to go through it all again. But i understood why, and supported that reason...

And so fast-forward... it was now Saturday morning, and Henry had shown zero activity. Again. Murphy's Law, as they say.

Right off the bat, Sam does his "usual" and makes Hank SMILE!

It was also Saturday morning that Ron, the kids, Shirley and Dad were coming to visit. That was a nice time - albeit slightly stressful. The kids were great, actually, being themselves and quite behaved for the closed quarters. But Ron and I were a little off, and so it made for some slight tension. Shirley happily volunteered to stay in the room and rock Henry while the rest of us went out for the day. That, unfortunately, turned out to be more than she had bargained for. Because of Henry's new anti-seizure med, he was irritable and squirmy. Nana was not able to console him like she usually does, so the afternoon was spent just trying make everyone comfortable. He never did take a nap, like he so peacefully usually does.



On our end, Ron, Dad and I took Sam and Thom to a place called Adventure Landing, that my friend Julie recommended. It's basically a big play center for kids. There's a "Wow Factory!," with foam balls everywhere, and outside, were four Bounce Houses - those big inflatable 'jungle gyms.' Those were the two places we focused on. We had also purchased tokens to use in the arcade, but the arcade sucked. Mostly car-racing games that Sam's short legs couldn't reach, or games that won you MORE TOKENS, which i certainly didn't want. Even the skee ball was a little run down. But boy!... Sam and Thom wore themselves completely out between the Wow Factory! and the bounce houses. It was sheer joy watching them smile and enjoy themselves. At one point, Thom was playing a game outside - bounce in a house, come to Mommy for a hug... bounce in another house, come to Mommy for another hug. I could have played that lil game for an eternity.

We returned to the hospital to hear of Shirley's day (ugh!) and as it was late, decided to get everyone together and head out. I held on to Sam for a ridiculous long time and started to cry, to which he petted my head and then gently stroked my cheek: "Don't cry Mommy." Eek!!! I just missed everyone so much. Soon they headed out and I was left once again, just Hank and me. He didn't fall asleep until 8:45 (for the first time, really, all day!). I went back to the Ronald McDonald House and conked. All week i had been frequently awoken in the middle of the night with horrible leg cramps. That night was no exception. And i was eating my bananas! Man, they hurt.

Sunday morning, i was greeted with a fussy Hank. No smile hello, just whining and crying from the git-go. I held him, rocked him, sang him the Alphabet Song... nothing worked. In between these moments, neurology visited to say they would remove the EEG monitor later that day. With no activity for close to 72 hrs, there was no sense in keeping the wires on his sweaty little head. I couldn't agree more. Closer to wireless FREEDOM! The neurologist on call for the weekend also agreed that with no seizure activity or blue spells in all this time, there was really no reason to stay, and so he was going to recommend discharge. Again - i was in agreement. The floor physician also agreed, and so discharge was in the works; she's also the one that told me that his GI study results were negative of anything unusual happening with this nissen, the surgery to control the reflux. By 4:30 pm, i was signing the papers and we were ON OUR WAY!

I checked out of the RMH, gassed the car and hit the road. I wanted to surprise Ron, who had to work, by stopping by the store with Hank, and surprise him I did!!! It was really nice to be back in town. Both boys greeted me with HUGE hellos and yelling "MOMMY!" when i got outta the car. Ahh... HOME!

So since being home, over 24 hrs now, there has been nothing. Nothing, that is, except for Henry's very noticeable altered demeanor. I originally thought it was teething - he's been highly irritable, ansy, arching and wiggly, and just an overall ICK. But then i recalled reading all of these behaviors are side effects of the Keppra, the new med in his life. I put a call into neurology and waited all day for a return call. In the meantime, Henry just cried and whined and was particularly clingy all day. I was unable to easily leave him, put him down, etc. Dr. Augustine returned my call in the evening to say that there is an adjustment period of about 2 weeks. If Henry is not better at the end of next week - more himself - we will definitely look into changing to another med. But i'm hopeful that he needs that time to adjust; Keppra is known for being relatively 'kind' to one's system and other organs, and existing heart condition, such as in Hank's case. I look forward to the gradual return of Sweet Henry Huggins. I miss him immensely!

Until next time... here's to blue-free Love and Laughter...