Dear Jake & Josh fans,
With Mother's Day on Sunday and Jake & Josh turning 2 on Tuesday, we figured this was the perfect time for an uplifting, update e-mail.
Before we detail the good news -- and the pictures -- we want to invite everyone to an informal birthday celebration.
It will be Saturday, May 15, from 3 p.m. - 6 p.m. at our house (address & directions are at the end of this e-mail.) Think of this more as an open house than a party. Come over for a short visit or a long one, we just hope you can stop by to see how fabulous our miracle men are doing.
Bring your whole family because a bouncy house will be part of the fun.
Considering how their lives began, every birthday is a milestone to be treasured. This one is especially significant because it is widely considered the major "catching up" point.
Until now, we've been using their "corrected" or "adjusted" age to evaluate their development. That basically meant subtracting four months, which is how premature they were, from their actual age. So when they were 20 months, we compared them to where a 16-month-old should be. Once they turn 2, that crutch is gone.
The best news of all: We haven't needed that crutch in awhile.
Jake & Josh are simply two wonderfully normal kiddos who just happen to get their meals through feeding tubes and who spend most of their weekdays going to therapies, plus have a few more doctor visits than others their age.
And, despite being twins, they continue to be as different as day and night -- from their looks to the lingering effects of their extreme prematurity. They've even developed differently, with Jake excelling at verbal skills first while Josh focused first on his motor skills.
Jake, who gets listed first because he was two minutes older, is our little chatterbox. He counts up to 14 and down from 10, says the alphabet and knows many songs. He constantly pretends he's talking on the telephone, especially while gripping the TV remote control. He's also a big peek-a-boo player. His favorite method is by leaning around a barely open door. Sometimes he'll enjoy it so much that he gets on uncontrollable laughing fits and we have to let air out of his feeding tube!
His most remarkable achievement is walking, something one doctor told us he might never do. His skill and confidence are growing with each step, aided by a game he's invented that could be called, "Where's Jake?" He'll go out of view until you call for him, then he scurries back, smiling and giggling before he even sees you.
His last hurdle is eating. We know he'll eventually get there, but it'll be at his own pace. He's still guarded about letting anyone put anything into his mouth. Getting food onto his lips is usually all he'll tolerate. There was a minor breakthrough earlier this week when he opened up for 15 spoonfuls of pudding.
Picking Josh's biggest feat is more difficult because he's made such tremendous progress in two areas -- feeding and vocalizing.
Just this week, he had a day when he ate three straight full meals, meaning he didn't have to be hooked up to the tube from early in the morning until late at night. To understand what an accomplishment that is, consider that he had only eaten two full meals ever before. He followed up with two more the next day and has continued to gobble at least one per day.
Josh's ability to speak was limited because his windpipe was about 50 percent blocked by scar tissue caused by breathing tubes back during his NICU days. We were told that the more he grew, the less the scar tissue would be an obstacle. That was reassuring, but we still had to hear it to believe it.
His silence was no big deal to us, but it was unusual to other people.
For instance, he bawled throughout his first haircut, yet barely made any sounds. The woman cutting his hair was practically in tears, saying it was the saddest thing she'd ever seen. That was in February. Well, a few weeks ago, we were trying to put the boys to sleep and Josh was being so loud that we actually were afraid he was going to wake up Jake.
That's when we realized how far he'd come! Now that he's found his voice, and has learned he can get what he wants by using words, his vocabulary is increasing rapidly. We've also started hearing him laugh, which was very emotional for us.
As for Josh's personality, he's a precocious, fun-loving Wild Thing. He runs, jumps, climbs and even dances. Among the games he's invented are "What Can I Stand On Next?" and "Pull Books Off The Shelves In Daddy's Office."
It's tough to discipline him at times because he can be hilarious -- and he knows it. Yet he also has an obedient side. Tell him it's diaper time and he lies down on his back. When he wants to be read to, he brings you a book, then turns and plops into your lap.
Both boys have sweet, happy demeanors -- just like Zac -- and all three get along great. (Josh looks more and more like Zac every day, while Jake remains the one who favors his mommy). Josh tends to show his affection by giving hugs that are really more like head-bangs. Josh also uses his strength to often take toys from Jake, but we recently saw Jake fight back, which was great to see.
Zac gives them plenty of love throughout the day and they soak it up. He recently began playing violin and even pulled it out one night offering to play a lullaby when they were having trouble falling asleep. (A picture of that is among those below)
While Jake & Josh deserve a lot of credit for how far they've come, they also have benefited greatly from all the love and attention of their various therapists and doctors. We're all shaped by the people we interact with and these boys have been blessed to be in the care of some truly wonderful folks, all of whom share the joy we feel with each milestone Jake & Josh reach.
High on that list is Claire Foster, the au pair who joined our family in November.
She's been very instrumental in helping both boys reach their goals, from patiently feeding Josh to encouraging Jake to stop crawling and start walking. She's also become a better authority figure than us parents, especially at bedtime. She can get them snoozing within five minutes (less, if we're not in the room), while it can take us more than a half hour!
Having Claire also has made it easier to take family outings, even.
While having to hook them up to the feeding tube every four hours has been somewhat limiting, we've become pretty adept at arranging our schedule around them. We look forward to the day when the boys can fill their tummies with table food - although by then they'll probably be such handfuls to deal with that eating out will be impossible anyway!
Although our boys become more "normal" every day, we don't take anything for granted. We realize what miracles they are and what a special journey we've all been part of. We're so appreciative of everyone who has helped along the way and we're very eager to do what we can to help others thrust into similar situations. We've talked to several families dealing with their own NICU crises and hope to be able to reach out to more through the story Jaime is writing for the wire. The absence of the Mavericks and Stars from the playoffs should open up some time in the coming months to finally get that project rolling.
Thanks again for whatever you've done to help. Whether you're one of the caregivers or just a well-wisher, we couldn't have done it without your support.
We hope you enjoy the snapshots and that you'll be able to see the real thing on the 15th.
Lori and Jaime