Wednesday, April 27, 2011

Pretzels, Sidewalk Chalk and Smiles

Happy Easter... and Unhappy Pneumonia.

Henry has been under the weather for a couple weeks now. To me, it seemed like the kind of cold that never lets go, leaving Hank with congestion and a cough. But as the cough persisted, I felt progressively uncomfortable and then within the span of two nights, it got pretty bad. The coughing turned into some fevers, lethargy and just a general 'ugh' look about him. Ron took him to the doctor's one day while i was working register (my new deviation from Sign Shop on occasion at Wegmans) and came to me immediately following and told me that Henry had been diagnosed with pneumonia and there was a "Game Plan" to deal with it. He had been prescribed some antiobiotics (in case it was bacterial and not viral (impossible to determine)), as well as some breathing treatments to open his bronchial passages. My poor little guy went from looking "eh, he's got a cold" to downright AWFUL and miserable. We had a follow up appointment the next morning to see how he sounded, check on his fever reduction and chest x-ray results.



The next morning, while i was at that appointment, Ron took Sam and Thom to have breakfast with the Easter Bunny at Wegmans (I swear that place is our second home, which is quite a nice second home). Henry's oxygen levels were a little lower than usual but nothing nuts and the doctor asked if he seemed better to me. It was hard to tell. I mean, his fever was gone. And his breathing didn't seem AS labored, but in general... no... not really. He definitely wasn't himself. She asked me to keep an eye on him all day and go with my instinct. Well... by 3pm that afternoon, my instinct was calling the weekend phone line at the doc's office and two hours later, i was taking Henry to be admitted to Arnot hospital.

From 1pm to about 3pm, I'll be honest with you... I was quite torn on what to do. Maybe it seems like an easy decision to you - and NORMALLY, to me as well, it would be. But i realized, with the help of my dear friend Natalie, that i had a fear of going back to the hospital, and specifically Arnot (which is a very good hospital, mind you) because every time we go there, we are LITERALLY airlifted back to Philly. I have rarely been an indecisive individual. But in that early afternoon, i was playing these little games with myself, and Henry, on his condition. Needless to say, choosing to go to the hospital was not only wise, but quite calming and affirming. I drove to the ER and they were waiting for our arrival. He was quickly admitted and settled into the pediatric wing. It was a full house. He was put on oxygen due to his level being low (60s). Normal for Hank is 83-86. The breathing treatments commenced fully on a strict four hour schedule and it made me feel good, personally, as a sometimes over-extended mother, that he would get the FULL attention he needed while ill.

... And so it went for the WEEK at Arnot. The last three or so days caused me to get restless and eager to return home. The drive is 25 min to and fro, and while it was doable during the week while the kids were in school, it got trickier for Ron and i to finagle coverage in both places on the weekend. If one of us was at work, the other was in the hospital, and we had the great help of our new favorite babysitter, our NEXT DOOR NEIGHBOR Sara. She. Was. Awesome. So eager to help and be there.

Arnot is very different than CHOP in that CHOP is all about giving the parent some rest and mental rehabilitation. They are also a 1:1 nurse/patient ratio. It is almost ENCOURAGED at CHOP for the parent to get away and get some rest. And that was easier to do with a newborn baby, as Hank was while there. But two things these days: One, Hank is older and growing more and more aware of my presence and absence. And two: the nurse to patient ratio at Arnot is quite different. There are 14 or so beds at Arnot and sometimes only 2 nurses on. Needless to say, parental presence is strongly encouraged. And i was okay with that. Of course. Also, with gas being $4/gallon, that little trek to and fro ate into the wallet a touch. But again - whatever.

Easter Sunday morning (exactly one year to the day that Hank was admitted last year!), I was given the okay for discharge. Apparently, i left a smoke trail in my haste to get the !@#$ outta there! :-) He was finishing a feed and as soon as that thing beeped, i turned it off, unhooked him and went to the nurses station to politely tell them that i was unhooking his leads in case their machines went haywire. FREE AT LAST! I had him and the room packed up in less than 18 minutes! ;-) And i drove home and surprised all three Telford Men by walking in with Hank! Within minutes i had all three boys on my lap with their bunny ears on.




Henry, as of this post, is doing well. Much better than a week ago. He no longer coughs most of the night. We are continuing the breathing treatments as time permits and he's all done his antiobiotic. Tomorrow morning i have an appointment and we'll see how he's doing, where his O2 is at, etc.

While in the hospital, Dr. Finnerty, his cardiac doc, 'hinted' at how MAYBE Hank might be ready for that MRI in Philly BEFORE his lip/palate surgery mid-May. He and the other docs in charge of him during that week speculate that Henry MIGHT have "re-set" his oxygen level with this latest illness. His baseline now appears to be in the 75-78 range. That might be noteworthy. "We Shall See." I trust the hands he is in, both here, Rochester and in Philly.

Tuesday, April 26, 2011

My Turn!


20 days after Ron's 40th birthday, it was my turn! On April 14th, my Wegmans girlfriends really did it up!!! Pam, Christa, Amanda and Mary came to my house at 6 in the morning and decorated my porch and the van! It truly was a surprise to me, despite Beegsley barking. When Beegs barks, i ALWAYS ignore it. The signs really had me laughing.





THEN, while that was truly enough to make my day (my day OFF, that is!), Ron surprised me a SECOND time by bringing me "out to dinner," which turned out to be a big surprise party at my Dad's retirement Community Center with all my friends, new and old. Many of our new church friends were there, as well as my old pals from Corning Inc., and of course the Weggies gals. My college roomie Kerry totally surprised me; the gal lives a mere hour away in Geneva, and yet, we go MONTHS without seeing one another. Ron totally outdid himself with all the wonderful and yummy food preparations; he managed to make everything on his day off when i was at work for 9 hrs one day. It was a very memorable, enjoyable and awesome 40th birthday. Thank you to everyone. I am truly blessed with such love surrounding me!


Wednesday, April 13, 2011

Where Has Time Gone?

Stars Rock!
I'm running out of excuses for not keeping up on the blog. Life is definitely rolling along for T5. I guess i should be more diligent in documenting such ROLLINGs...

The Telford Boys continue to grow in all respects. Thomas is in a healthy competition with Samson, lately, with Funniest Things Said. Some favorites:

Me: "Thomas, you are one crazy kid."
Thomas: "I'm not Crazy Kid... my name's Tommy Telford."

Sam, 10 min ago, "Mom... i gotta question for you." Then he asks question...
Thomas, 10 min later: "Mom... i gotta question for you!"
Me, thinking WOW... "Yes Thomas? What is it?"
Thom: *big grin, not sure what to say...* "Dora!" (Nice try buddy!)

Thom, as Beegsley snoops for droppings in kitchen at dinner: "BEEGS - OUT!" He's got the yelling tone and pointing finger towards living room DOWN PAT! Mommy's influence, guilty as charged.

Whatta Cheeser!
Needless to say, Thomas, while definitely developing his own words and personality, is a master at parroting. He repeats nearly everything Sammy says (and Sam likes to place nuggets in Thom's head too, for sure!). It's particularly funny when Sam is playing with toys and makes noises and is talking through his adventures out loud. If you listen and watch closely, there's a mini echo...

Our Sweetheart!
And Henry is quite the attentive audience member. Nearly every single time Sam comes up to Henry, no matter WHAT Sam is doing, Henry starts laughing hysterically. I've watched Thom go up to Henry and he does not get the same reaction, though he does receive a "ah, your my awesome brother" smile. There's just something about the bond between Sam and Henry. I love watching it.
Gazing at Mama

Henry is getting stronger. He often works his little ab muscles into sitting more upright, sometimes keeping that position for a couple seconds before resting back or toppling to the side; he's working hard to sit up on his own. He's also more intentionally transferring toys from one hand to the other, and his reaction time seems a little quicker than in the past.

Henry's eyes, since birth, have parted outright, a majority of the time, but not all. Under the direction of Dr. Morello in Elmira, we've started patching Hank's good eye for 2 hrs a day for the next 30 days. Dr. M. says this problem is corrected in 10% of the patients that try this procedure. Let's hope Hank is one of them. The alternative is a 20 min surgery, which I'm okay with as well.

At the end of March, two big things happened: Ron turned 40 (!) and Sam met Darth Vader!

The Saturday before Ron's birthday on 3/22, I managed to pull off a surprise party for him; he was completely in the dark about it up until the minute he walked in the door! I had him thinking he was doing a candle demonstration at the church for members and it was a dish to pass situation. Meanwhile, I had raided his Facebook friends list and invited a ton of folks to come to the Fellowship to celebrate the Big 4-0! It was a wonderful turnout, the eats that everyone brought were dee-lish, and I think everyone had a really nice time.

About a week later, Ron took Sam to Rochester's Strong Museum of Play to see a Star Wars exhibit, along with the rest of the COOLNESS that goes on there on a regular basis. They had a total BLAST and Sam got a kick out of posing with all the SW characters.

May the Force be with You!


Multiplying Samsons!

Some "big" news in our family, as a whole, is we joined the local YMCA with the benefit of their scholarship program, which is a great help to us. We've attended nearly every day in some form; Sam and Ron like to use the pool area quite a bit and I've gone to work out and stretch out in the evenings. I would LOVE to make this a daily routine. For that to happen, sometimes I would have to get up before work on some days. Now that's commitment! I'm workin' toward it!

The boys, enjoying Lilo & Stitch in the 'new' playroom.

Spring is around the corner!!! All three boys really enjoy sidewalk chalk out in front of our house. Thomas is VERY into drawing every family member and gets VERY excited with the creation of each one. Sam likes drawing all sorts of stuff. He loves coloring stuff any chance he can get (chalk, watercolors, crayons, marker, you name it!).

Wednesday, February 23, 2011

So Long Wispy, Baby Fine Hair!


I tried once to take Thom to get his hair cut, about three months ago. He wanted NO PART of it. Totally freaked just LOOKING at the clippers, not even turned on. So we bagged that and i thought "eh... s'just hair."

But it got longer, and wispier, and static-ier, and more of a pain to wash in the tub. So the other day, i gave Sam a haircut (he loves when i do it) and both of us kept saying to Thom "Hey Tommy... want your hair cut just like Sammy's?" And he'd say "YEAH!" followed quickly by a "No! Tommy keep hair on HEAD!" and cover himself like he was ducking for a bomb.



Yeah - the HAIRCUTTING BOMB that happened last night!!

I set him up with snacks and gave Sam the camera (all these pics are Sam's skills!) and plugged in the clippers and he immediately wigged out! Then i remembered, quickly unplugged them and said to Sam, "well... i guess i could cut all this with just scissors." I combed up the first chunk and CUT IT! No turning back now!!!



For the most part, he didn't give a hoot and cooperated pretty well. It's when i got to his neck and ear area that he started squirming and putting his hands up and saying, "Enough Mommy... ENOUGH!" And i would quickly say "I'm almost done Tommy... OOH TOMMY - - what songs can we sing? Wanna sing Rudolph?" And he'd forget and say "yeah." and I'd get a few more snips in. Between the songs, the replenished snacks (covered in hair, but whatdyagonnado?) and Sam's words of encouragement between clicks, we got 'er done!



For a first hair cut done by MOMMY, i'd say i did pretty good. There are a couple 'chunky' lookin' spots, but i just lick my hand and smooth it over with the other hair. :-D

Tuesday, February 22, 2011

Some Hank Updates

Recently, I've been getting a lot of questions about Henry and where he's at with his heart and lips/palate. Thank you, to everyone, for caring and asking. So let's chat, shall we?

First of all, Henry is doing excellent, overall. His heart and oxygen levels are sounding good and holding steady; it seems the pulmonary artery band that was placed on his heart in the second week of his life is doing its job quite well!

He continues to show improvements in strength and development. They are small steps, but noticeable, and his therapists are encouraged and pleased, as are we. Henry sits up quite nicely if held only at the hips, but has to be guarded for tipping over or throwing himself backward. He is starting to place weight, ever so slightly, on his legs, when you hold him from his armpits. He is reaching for toys quicker and holding them firmer and longer; I've even noticed him starting to switch hands with the toy, which is a great sign. Henry can roll from side to side and every now and then makes it over to his belly, which he doesn't so much like. From laying in a 45 degree angle on his back, he can lift himself up with his stomach mucles to sitting upright (with support). He also tolerates the Exersaucer for 20-30 minutes, even playing with the toys attached to it, all while singing or laughing to himself. And drooling. A lot. Still no signs of teeth though.

Hey there, Smilin' Guy! xo


He recognizes and turns to familiar voices and always shows joy and laughs out loud when family members come to him to say hi or tickle him, ESPECIALLY Samson. Sam is very easily Hank's hero. He is experimenting with his voice. His favorite sound to make is any and all variations of "mama." MAH-maaaa; ma-ma-ma-ma; MAHHHH-ma. And just lately, he's experimenting with the sound level. He quite often gets to "yelling" at us across the room or even in my arms. Even Thom will say "Henry yelling at us!" It's cute. Hank is very much the love-bug of our church as well.

His therapists have evaluated him, all factors combined, at about a 4 1/2 to 5 month age level. This is helpful because I've easily already forgotten where Sam and Thom were at with things. At this age, other children would certainly be crawling, pulling up on furniture or maybe even walking. As i explained to Shirley, with this genetic disorder (labeled "4q deletion"), we'll take what we get at Henry's pace. Many 4 "q-tees" don't sit up until past 2 or walk until 5. I do not spend a huge amount of time comparing Henry's development levels to those of 'normal children.' Sure, to a certain degree, for a guideline, but never with expectations or disappointments. Ron and i made a heartfelt agreement, late one night in the Philly Ronald McDonald House dining area, in those first few days of his life, that our only desire, to bring true happiness to us, was for Henry to smile and recognize us and to know and feel that he was loved. He has far exceeded that, and so everything else is a bonus!

We just went to Rochester last week to meet with his craniofacial surgeon, Dr. Girotto, whom i LOVE. He's professional, confident and has a wonderful friendly demeanor. I'd like to sit at a barbeque with him over a couple ice cold brews! Dr. G. was more than pleased with the result of Henry's first lip surgery, called a lip adhesion. He said the degree in which the maxilla was pushed back into his face far exceeded his expectations and i was THRILLED to hear his enthusiasm about this. He never had to break anything to achieve this and it will make Henry's palate and refined 2nd lip surgery easier. Dr. G. explained what he'll do and it sounds like a straight forward surgery. He told me that Henry's "whistling" look will be smoothed out and his lips will meet and appear as though nothing was ever wrong. I can't picture it. But then again, i could never picture it before his first surgery. In a year's time (or less?), we'll have to look at pictures to remember it. Just simply amazing.

With Henry's palate repaired, there will be no further surgery expected, craniofacially, for several years, until he's around the age of 10, when they'll take some hip bones to close in the gaps in his upper jaw. I'm not even thinking about that time.

Beyond the lip/palate repair, which is anticipated for sometime this April, there is talk from his cardiologist here in town, Dr. Finnerty, of scheduling an MRI down in Philly, to look extensively at his heart. To *SEE* how the PA band is doing and the rest of things as well. I cannot even predict what will come of that trip, so I'm not even going to toss it out. I do not know when that will be planned. May? I'd like the weather to not be a factor, ideally.

So there's our littlest member of T5. I'll have to take some video of him soon, doin' his THANG and bringing joy to our lives.

Saturday, February 12, 2011

Keller Williams!

Keller watching Keller.

Months ago, maybe even as far back as November, my college buddy Katie, who lives outside Philly, asked me if i was interested in coming down, and bringing Sam with me, to see Keller Williams in concert, performing a special kids' show! After exclaiming YES!, i forgot all about it until she reminded me a few weeks ago. With all the crazy snow Philly and the east have been getting this winter, i worried we could get dumped again the weekend we were supposed to head down, but then thought "eh... go for it." So i bought the tickets online and the weekend's weather was GREAT!


Coupla PB&N (Nutella!) Sammiches before headin' out!

I picked up Sam after school on Friday and within an hour, we were on the road. I set him up with a goodie basket in the backseat (we took Johnny New Car (read: '93 Toyota)). It was full of snacks, NEW Crayolas (*drool*), and the ever popular new addition to our family: the iPod Touch, loaded with folder just for Sam, full of games. He was the perfect travelin' buddy! We got to Katie's around 8:30, all the kids mucked it up in their PJs for about an hour, and soon everyone was in bed. Ahhhhhhhhhhh.....



The next day, we headed out around 12:30 and headed for South Street and the TLA (Theatre of Living Arts) where Keller was performing. We had time to get some pretzels and take in some sights before the doors opened. Soon, we were inside and within minutes, the coolest little drum circle was formed. Well, it actually wasn't so little; a company named Everybody Drum is touring with Keller's kids' shows and is quite a group. Djembes, bongos, and all sorts of percussion instruments were set out for the kids to see, try and enjoy! I was loving it as well; I'm a total sucker for a drum circle. In fact, i flattened out my wedding band! Shoulda taken a picture of it; nothing our buddy Don, who designed my ring, can't fix. Whatta good time!

Go for it, Sam! You Rock!

Soon... lights dim... AND HERE'S KELLER! Singing catchy and awesome sounding kids' songs that quite frankly, rock for any age! Keller is affectionately known as The One Man Jam Band. This dude can play ANYTHING, or at least play an instrument that can SOUND like any other instrument. He got his guitar to sound like a flute, piano and harmonica! And of course he records stuff and loops it, and within minutes (seconds?), he's got a cool little jam goin' that he can now sing to. I could honestly watch him for HOURS. I fell in love with Keller Williams fifteen years ago at a little music festival in Sherman, NY called OUR Fest. I think he might have just been starting out around that time. He came out on stage and made his mouth sound EXACTLY like a trumpet, and i was in love and in awe. *swoon*



Katie's kids Keller (yes!, named after the man of the hour), Maya and Charlie and my Sam each enjoyed the show in their own little way. "Little Keller's" eyes were glued to Big Keller the entire time. Sam didn't seem to give a hoot about Keller on stage but was ENTHRALLED with the myriad of balloons that fell from the ceiling and were floating about. Maya and Charlie just chilled with their Mom and watched everything going on.


Left: Keller, leading a "Trombone Train" at the end of the show. Right: signing stuff for Katie.

Thank you again, Katie, for thinking of me (and Sam) and inviting us to spend 36 hours (hehe) with you. Good times... good times!

The Crew: Charlie, Katie, Keller, Maya, me and Sam