Update: Fundraisers

So it's been a while (as you can see by the picture) since we've updated the site.

Jakari's 26 months old now. He weighs about 28 pounds and is 36" tall. He's a big guy and looking all grown up.

Since he's grown so much, he's outgrowing his stroller. Jakari has a stroller designed for special-needs; it's heavy duty, has special adjusters and is balanced so that we can (finally) put the vent and monitor underneath it without worrying about it tipping over.

The problem is, a new stroller will cost about $8,000. So in order to help pay for that, a couple of fundraisers are coming up.

First, a Krispy Kreme sale is going on right now. You know you love some Krispy Kreme! And it's for a super-great cause.

Second: on March 27, there's going to be a fundraising cookout: hotdogs, hamburgers and Polish sausage. (More details on this to come).

In other news, Jakari will be having another reconstructive heart surgery on March 15. He'll be in the hospital for a minimum of two weeks. All surgeries pose a risk; a heart surgery, on a child, even more so. Please keep all of us in your prayers as we get ready to face this challenge.

Thanks again for all your love and support.

Get the facts about the stability and security you get from health insurance reform | Health Insurance Reform Reality Check

Get the facts about the stability and security you get from health insurance reform | Health Insurance Reform Reality Check

Shared via AddThis

The Latest News

Jakari's been doing pretty well over the past month. We got him switched to a different tube feeding and made some small medication changes. Everything's been working really well.

At our visit to the GI doctor at Duke last week, we got the great word that he's right where he belongs on the height/weight charts. This wasn't really news to us-he's getting heavy!! Right about 25 pounds, and strong as a little bull. But it's still good to hear it from the doctors... there are still more surgeries to go and having him big and strong is going to be really helpful when it comes time for recovery.


One of the biggest recent advances Jakari's made has been in sign language. Speech has been working on signs with him for a while but it seems like in just the past few weeks he's caught on and is stringing them in sentences to let you know what he wants. His vocabulary is getting bigger all the time and he's picking up on new signs and ideas all the time. And even with the trach and the pressure from the vent, he manages to get sounds (with quite a bit of volume!!) out. It's more difficult to talk with the trach and vent, but he sings and hums and says a few words quite well.


In the near future we're also switching homecare companies. Almost all the current nurses are moving to the new company, so there will be great continuity of care and no major shakeups in that regard. The schedule is pretty good and solid these days. Mostly, the changes we're hoping for will all be on an administrative level, and just help to keep everything running smoothly.

As far as a car goes, we're still looking and hoping that something affordable comes along. In the meantime, we make do for appointments with a borrowed car that has enough room to get everything there and back. Hopefully it won't be too long before we've got a new one of our own. If there's any way you can help, we sure would appreciate it.

And that's what's the latest news!!

These are some pictures I've taken of Jakari over the past two months.

I Need A Ride

You can guess that Jakari has a lot of doctor's appointments to keep up with. We go to see pulmonary, neurology, cardiology, and gastroenterology doctors at Duke as well as keep up with ENT and regular pediatrics in Durham.

Traveling with Jakari is no joke. We have to bring all the equipment he needs everywhere we go. This means that besides the ventilator (and several oxygen tanks), we carry the suction machine, the oxygen saturation monitor, an Ambu bag (in case the vent stops working), an extra tracheostomy tube, and all the supplies we need to work everything. We also bring medications for emergencies. This is in addition to all the stuff every baby needs-diapers, wipes, and a change of clothes.

Carrying all this stuff requires more than your average stroller. Recently, Jakari was given a special stroller designed for disabled kids that has a heavy-duty shelf underneath we can park the vent and oxygen on. It is super-strong and totally adjustable so we should be able to use it for a long time.

It also requires a roomy ride. Just for a doctor's visit, we need room for two people, all the stuff (including the stroller) and a carseat for Jakari to be in while we ride. His brother Jerias is still in a carseat too, and JoEl is practically as big as a grownup. Family trips have been a virtual one-car impossibility-until they became an actual impossibility.

About a month ago, the car got totalled in an accident.

The insurance settlement leaves several thousand dollars of the financing uncovered, and that makes getting approved for a new car loan even more difficult.

What we really need is a reliable, efficient minivan. This way, all of Jakari's stuff (including the nurse!) can fit easily and the other kids can too. Duke is 45 minutes away-and there are several appointments every month, besides all the daily driving and things the other boys need.

If there's any way you can help, we'd sure appreciate it.