Friday, June 23, 2006


We're home and fighting the twin battles of the bedtime and the unknown. The first battle is tough enough - most parents have trouble establishing a sleep schedule for their little ones.

The books available tell the tale - Dr. Ferber says put 'em to bed and keep them there, Brazleton says why can't the baby sleep with you? And a recent scientific study shows that, wonder of wonders, the middle ground between attachment parenting and ferberizing is your best bet.

Thomas is doing as well as to be expected. He gets sleepy around eight at night and wakes up around six thirty, and there's this window around four a.m. where he'd just as soon have a short conversation with us if we don't mind.

His naps are still all over the place, and there's where the second battle comes in. Obviously, most babies don't have to re-establish their schedule every two weeks after an extended hospital stay.

And most babies aren't going through chemo. And Thomas is our first baby. So we really struggle to tell when Thomas is fussy-sleepy, fussy-ten-months-old, or fussy-chemo.

We're working on teaching him sign language, but I haven't learned the signs yet for "I don't feel well because my blood counts are low," or "I'm developing an infection and you should worry," or "I'm moody because I'm experiencing new emotions as part of a developmental phase." Maybe Thomas's Aunt Shelia, deaf-ed teacher, can help with that?

All I know is I'm so happy to not be a single mom. Thomas was up with unidentified fussiness from four on this morning, and at seven I woke Scott up, took his pillow, and went to sleep before he left the room.

That's my sign for, "Your turn," and his for "I'm a good dad and I love you."

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At 7:31 PM, Anonymous Anonymous said...

So glad to here yall are home again.Hope all continues to go well,Ronee keeps me posted and I'm addited to this web site.My thoughts and prayers are with you daily,
Tricia Pernell (Jolly)

At 7:28 AM, Blogger sarah's_mom said...

As if being a new parent isn't hard enuf - at times anyway - it's mind blowing to realize just how much you guys have to deal with. I mean, I guess at some point you almost have to throw out the books that tell you what is "normal" becuase your life ISN'T normal. Hmmn, but wait ... perhaps it Is. It is "normal" for you guys cuz this is all you have known now for more than half of Lil T's life. It's up to the rest of us to figure out how to adjust. Yah, that's the way to think of it. lol. Aahh seriously, as someone who has been there with you and with Thomas in/out of the hospital, I am overwhelmed with a sense of peace at just how well you ARE adjusting to whatever we are supposed to call it. To those of us watching, it's clear that you two are OBviously doing it right. Thomas is a happy young man! All this in spite of the syringes, bags of nutrition, antibiotics, constant temperature checks, blood pressure cuffs squeezing his leg at all odd hours of the day/nite, the weighing of his diapers even (gosh, talk about pressure to perform????), or the several times a day that skinny tube is being stuck into the trachea to suction, or the limited area to play cuz of being hooked up to all these tubes and machines ........ Yeah, you are obviously doing it right because Thomas gives the best hugs and sweet kisses and smiles a lot. Y'know, perhaps you guys should seriously write a book! Then YOUR book could be The book other parents look to for "what is normal?" So, hang in there Mommy/Daddy. Thomas tells me you're doing it JUST RIGHT!! (i love you)

At 11:45 AM, Anonymous Anonymous said...

Why are you teaching Sign language? THomas isn't deaf.. its not logical. .

At 8:48 PM, Blogger Lizard said...

Sarah- That's great you are doing some sign language. We taught our second one some basic stuff and somehow it really did help him make a connection with language and he talked very early. It seemed logical to him. :)

At 1:21 PM, Blogger Thomas, as told to Sarah said...

There are two benefits to starting off with some basic signs, which is what we're doing right now-

1) Because of his trach, Thomas can't talk. He does have an attachment for the trach that will help him with that when he's a lot older, but we don't want to wait that long to build language skills.

2) Teaching kids the words for things, in any language, helps them connect words and objects. Hand signs are less complicated than speech. Baby sign language helps kids learn about language in general.

At 2:25 PM, Blogger kate5kiwis said...

hey gorgeous family :o)
thomas, our J10 loved the sign language we taught him, he talked later than his siblings and it was really helpful.
sarah, thanks for your comment about J10's star quilt on my blog... did you scroll down and try the princess bride quiz ??
it's just that i noticed you are a fan of the greatest-movie-of-all-time :o)
and that means we are kindred spirits *wink*

At 9:30 AM, Blogger Paula said...

We are praying for you. Congrats to you for teaching Thomas to sign. It is wonderful to be able to communicate with the world when you cannot talk. Thomas WILL do well in life because of you. Learning to sign will also give him a leg up in the world. We will continue to pray for Thomas and his needs as well as the needs of your family. (checking daily on his progresss)Just know this: IF HE BRINGS YOU TO IT HE WILL BRING YOU THROUGH IT.

At 11:55 AM, Anonymous "Aunt" Kaitlin said...

You all are so precious to me. I love our sweet & silly times together at your home and the hospital, enjoying the the gift of life unfolding before us in our darling Thomas.

I would love to learn sign language along with y'all so I can understand lil' T when he begins to use his hands to express all that he's longing to say. (I'm sure "I love you mom and dad" is at the very top of his list!)

All my love and chicken salad :),

aunt kait

At 12:39 PM, Blogger Rhonda said...

i love playing "where's the ball" in sign with Thomas. Its great to watch him get so excited when he finds it and throws it back at me! it makes me so proud to have an amazing family. I can never be more grateful enough for what a wonderful and loving family we have.


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