Jackson's First Video

For those of you who haven't seen it, here is Jackson's first video. Make sure you have on your 3D glasses because it's a 3D video....
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Jackson's first smiling and cooing video from Halle Whittington on Vimeo.

Not Long Now...

Thursday marked Jackson's final NAM appointment. Instead of taking the train down, my mom and I ended up driving, primarily due to the fact that Jackson had 3 appointments to make, the first one at 10am.

At 10am we met with his otolaryngologist (ENT - ear, nose & throat) to discuss the placement of tubes in his ears at the same time as his lip and nose surgery. This is common practice so that they only have to administer anesthesia once. Babies with clefts have an increased risk for ear infections and the tubes lessen the risk of hearing loss.

Directly following his ENT appointment, Jackson had a physical done with a doctor from the plastic surgery team that will be performing his surgery. Typically lip & nose repair surgery is considered outpatient surgery, allowing the baby to go home the same day. It turns out, however, that since Jackson was a preemie, the anesthesiologists would like to keep him overnight for observation.

Our final appointment was at 1pm - his final NAM appointment. It is crazy to think we are almost done with the NAM process. The results have been phenomenal! Jackson started out with little to no columella (the horizontal column at the base of the nose separating the nostrils). This is common in cleft patients and can cause the nose to appear 'smashed' after the repair. The nasal stint part of the NAM process helps to stretch the columella thus allowing for a much more normal looking nose repair. Having said that, Jackson now has 5 mm of columella (6-7 mm is normal length)! Not only that, his gum line is gap-free! We are so thankful for those of you who contributed to the NAM process for Jackson - at his appointment Thursday the NAM was "PAID IN FULL". We couldn't have done this without your support.

So now we eagerly await May 1st. We will head down south after Daniel gets off work on Wednesday, check into our hotel two blocks from the hospital, and wait for the phone call that tells us what time to arrive at the hospital the next morning for his surgery. The surgery, including tube placement, is calculated to take about 4 hours, then Jackson will go into recovery. We will be waiting with him in recovery until he wakes up. He will most likely stay Thursday night in the hospital for observation and we will head home on Friday.

It's crazy to think we will never see his face again as it is now. It's the face and wide smile we've grown to know and love. But we are also excited for this next, very necessary step. Please keep us in your prayers, praying that Jackson stays healthy this week (surgery will be postponed if he gets sick), that surgery will be smooth and Jackson's recovery will be quick. We will update again following his surgery.

Thoughts on God

Many people as of late have asked questions of us concerning our thoughts on God and what kind of affect what we are currently walking through has on what we believe. Daniel passed this post on to me today, and I find it communicates perfectly where we're at.

Moving

Today is our last day in our beloved Shell Beach condo. We are set to move into Los Osos with my (Halle) parents tomorrow for about 6 months. My parents have been gracious enough to let us, all 3 of us, live with them so that we can work on paying off the debt we've incurred through Jackson's medical expenses in the past months, placing ourselves in a much better financial position (as well as getting much needed emotional support). Thank you Mom & Dad!

So our address as of April 12th will be:
1778 14th St.
Los Osos, CA 93402

We have been so grateful to the Schlenkers for allowing us the opportunity to rent from them the past 2+ years in the most incredibly beautiful location. So many memories. We will miss you Shell Beach.

Poop Explosion!

Today was quite an eventful day for us (Mom & Jackson, that is). Why was today so eventful? Let's just say we have a very clever son. Jackson executed his first experiment in physics today, the physics of poop propulsion.

Exhibit A:

Yes, quite clever indeed. That kind of experiment makes for a hard day's work. Time for a break...

Exhibit B:

Syndrome

We received some pretty intense news today. They had done a few different genetic tests on Jackson when he was in the NICU. One of them only came back recently and it turns out that Jackson has Simpson Golabi Behmel Syndrome (SGBS).

It’s hard to explain all the details (the internet can help you out on that one) but the nutshell version isn’t all that pretty.

What that means could be an extremely wide range of things. First, he has several physical symptoms of the Simpson Golabi Behmel Syndrome (SGBS) (which is why they checked for it) like the cleft lip and palate, a sacral dimple, etc. But that is all that is noticeable. He doesn’t seem to have any of the other major physical symptoms as of right now.

It could be that what he has now is the full extent of what will “present” in this case and he will be completely fine, and you’d never know.

It’s also extremely likely that he will exhibit some degree of mental retardation in the next few years as he starts to develop. Again, he might not, or it could be extreme. There’s no way to know until the time comes.

On the other side, kids with Simpson Golabi Behmel Syndrome (SGBS) have a extremely high rate of tumors (usually in the kidneys), heart arrhythmias and other major problems. It is also a possibility that he could die before he even turns 2 years old with no warning or explanation due to heart issues.

If he does only exhibit the symptoms he currently has, then we have no idea what the mortality rate and life expectancy are. We’ll know more after we meet with genetic counselors at CHLA.

This looks like another one of our familiar scenarios where we’re presented with “either he’ll be fine, or he’ll have severe mental issues and die before he’s two” extreme options.

That’s about all we know right now.

Progress

So today Jackson entered the final step in the NAM process. The nasal stints were adjusted and seem to be much more comfortable as Jackson has been much happier today than he has been the entire past week. Now it's just a matter of maintaining until his surgery May 1st. We are already seeing incredible progress. Here's his current look:

Can you see him? He's hiding behind the tape.

Back when Jackson was in the NICU we guestimated what we would've owed without insurance. We were way off:

Thank you Healthy Families!

Surgery Date

This has been a bit of a rough week - I think it's safe to say that Jackson hates the nasal stints. I don't blame him. How would you like your nose shoved up against your face with two prongs, creating sores on the inside of your nose? Not fun. We just keep telling ourselves that it'll be worth it in the long run, and Jackson will end up with a much better repair. In the meantime, he's pretty unhappy and much more fussy than usual. And he doesn't like to sleep alone these days, just wants to be comforted.

The good news is that we now have his first surgery date - May 1st! So we only have to endure this process for another 4 weeks. Very good news.

As far as the hernia, Jackson will most likely be having surgery in the next week. Our boy is a rockstar.