The Bald and the Beautiful

We started January out with a bang. New Years Day was spent at none other than Primary Children's Hospital. Our home away from home! Jackson's picc line got a crack in it and that means nothing can be infused. The radiologists were nice enough to squeeze us in on a holiday/Sunday. We knew we would meet our deductible quickly, but never imagined this quickly!

He has to be heavily sedated for the procedure and he use to wake up very mad and feisty. But now he wakes up pretty mellow and in la la land. He was so content to play with his blood pressure cuff and other hospital toys. We were only there for about 5 hours. It's so much nicer to be an outpatient at PCMC rather than an inpatient.

The radiologists(ones who place the picc lines) know us by name, as we see them so often. The one guy was joking that they should have a punch card where you buy 10 piccs get a free trip to disneyland. If only....Jackson has been through about 7 or 8 piccs but luckily we have not been admitted to the hospital since Halloween. That is a record for us. It feels so good to say that his days out of the hospital are greater than his days in!

This is what 2011 looked like in regards to medical bills and/or insurance statements. I naively got this little file folder thinking we could keep everything filed nicely inside.
We know 2012's stack of forms will be even bigger but we are so grateful to have such wonderful insurance. Once we meet our out of pocket maximum everything is covered 100%. And while the out of pocket max can seem steep, we know it could be much higher. We estimate Jax's bills to be about $700,000 by now. Lots of people say they would never trade their kids for a million bucks. And I really wouldn't....I'd be losing money!!

January brought a change of diet for Jax. For the past 8 (almost 9 months) I have been pumping 5-8 times a day to give Jackson "the best of the best." For awhile he wasn't tolerating any formulas or additives they tried to mix with the breastmilk. I feared I would be stuck pumping for the rest of my life. Luckily we decided to try the formula above. This was our last option(or so we thought). Neocate has NO allergens in it (milk, soy etc...), is hypoallergenic and has all the proteins already broken down. Your body doesn't have to break anything down, it's done for you. We started the Neocate by mixing it with breastmilk with the plan to increase formula and decrease breastmilk. This formula has the worst taste/smell in the world. All formula smells bad but this was far beyond that. Jackson hated the stuff. You've heard the line "A baby will never let themselves starve to death....." I'm here to tell you that is a lie. If they are forced to drink Neocate, they would rather starve than drink it.

I battled Jackson with this formula for 2 weeks. It consisted on him drinking about half the ounces he is suppose to. I would give him an 8 ounce bottle and it would take him about 3 hours to drink 5 of the ounces. By that time it was almost time for another bottle. The dietitian suggested mixing a tiny pinch of sugarless Kool-aid into the milk. That did not appeal to him either.

Long story short we found out that he can tolerate AND likes regular soy formula! So we've switched him to that full time and he loves it. And insurance is probably glad we've switched as well. The Neocate formula costs about $900/month!! You would think with something that expensive they could make it taste a little better.

Jackson is so close to sitting up on his own. This dragon ball popper is going to be his main motivation to mastering it. He giggles and squeals when its on.

Here is an action shot of Jackson in pure excitement mode. When he gets excited about something his whole body tenses up and he shakes. It is the cutest thing.

Jax is now rolling stomach to back and back to stomach. He's slowly figuring out that he can get to different places and things by rolling around. Carter is a little wary of his new tricks because it means his things are no longer "safe."

Jax and his binky.... The love of his binkie may be the death of me. Jackson doesn't suck on a binkie. Jackson plays with a binkie in his mouth. He can't keep it in by himself. He won't suck hard enough on it to keep it in by himself but yet he almost can't function without it. This "problem" has resulted in me being very creative with the placement of his blankets to try and keep a little pressure on the binkie. Luckily he has become able to hold his own binkie and so it's no longer a problem. I go in a see him just like this every sleep. Holding his own binkie. FINALLY

Mr. Jax really loves to eat. You really can't eat in front of the boy without offering him something. I think his absolute favorite foods are avocados and meatballs. I really haven't fed him anything that he hasn't liked(which may not be saying much since he has a somewhat limited diet.)

At 8 1/2 months Jackson is weighing in at 17 1/2 pounds. In another pound he will have tripled his birth weight. He even moved up from the 3rd% to the 10%.

He is doing so well. We continue to decrease his TPN and he continues to gain weight which makes the end of TPN a closer goal. He is such a sweet, happy baby. He has a cute little personality that makes us forget all the work we've been through!

At 8 months:

This is all the hair that Jackson has. He has not lost any since birth but it has hardly grown. His hair is very light. It will most likely have some red in it but it's hard to tell with such little amounts.

He still has 0 teeth. And none that are in sight of popping through. Bald and toothless and darling. Carter had teeth by 5 months so Jackson is not following suite.

Now onto a totally random part of this post:

I get asked a lot if Jackson having no hair and no teeth are part of his condition. Part of me wants to say "Is this really the first bald and toothless baby you've ever seen!?" So the answer is NO. Totally unrelated. And to answer another question I've been asked several times (mostly by the same person) "No, Jackson will not be 'slow' because of his condition." Do your intestines play a part in your reading or math skills? Didn't think so.

And please, just because your dad's brother is a doctor of any kind and you tell him you've met a short gut patient, please don't come and tell me how awful and horrible it is to be a short gut patient. And what a poor quality of life he will have. Believe you me, we know exactly what we're dealing with and we know this is no walk in the park. And most likely, your dad's brother doesn't really know a single thing about short gut. All he knows is what he's read about in a textbook his first year of Medical school. Short gut is not a good thing to have. But I promise there are worse diseases/conditions out there. And medical advances have come a long way and Jackson is expected to live a long and healthy life.

Feels good to have that off my chest. And don't worry, all of the random people who have asked/told me these bizarre things don't read this blog so I don't have to worry about offending anyone.