Update on Austin and First Blog Post In FOREVER!

As many of you may have noticed, I deactivated my Facebook page earlier in November in an attempt to distance myself from social media at least until 2017. It’s been pretty nice actually. Since My FB is down, I cannot post updates on Austin’s FB page so, for the time being, I will use this again. It has been a year since I last posted on this blog! CRAZY!

Austin is doing much better since he was admitted for a one week stay on Nov. 2nd. In the hospital, he had his first CT scan which revealed minor air trapping in his right upper lobe and minimal atelectasis (collapse) of his lower left lobe. His cough has gone away and his energy level is back to normal.

We got home on Nov. 9th and on Nov. 10th, we put up all of our Christmas decorations per Austin’s request! He is really excited for Santa to come this year!

In other news, we are getting a taste of what it will be like to be on our own insurance wise with Aetna. As of now, they have yet to decide whether or not they will cover any of the $5,400+ in claims from Austin’s hospital stay. Luckily, California Children’s Services should be helping us out with the medical bills until early 2017, but after that, we are on our own. We are still trying to raise some money to put in Austin’s Medical Fund Account so that we will have some $ to fall-back on for medical costs.

The link is:

https://www.gofundme.com/CFFundAustinWoods

Hope everyone had a wonderful Thanksgiving ❤

Here is an outtake from our little Thanksgiving photo shoot 🙂

(Allison, 8.5 months / Austin, 3.5 years / Kaylie, 5.5 years (Austin/Ally’s cousin)

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1 Month post-hospitalization update:

As many of you know, Austin was hospitalized for a Cystic Fibrosis “tune-up” (IV antibiotics and extra breathing treatments) from October 16th until October 30th. He left the hospital weighing 32.4 lbs, but quickly dropped to 30.0 lbs within 10 days after being discharged. As a result, g-tube talk was being brought up again by his GI doctors.  However, we decided to try an appetite stimulant, which his doctors were initially hesitant to do because he has delayed gastric emptying and the medicine would further delay it.

Austin has been on the appetite stimulant for just about a week now and there has been a noticeable increase in his appetite, although it is still far off from what it used to be just a few months ago. His weight has increased to 31.0 lbs since starting the appetite stimulant. I am hopeful that this will keep him “in the clear” weight-wise and the g-tube talk can be put on the back burner!

He has 2 follow-up appointments coming up on December 4th at UCSF; his CF/pulmonology appointment is at 11 am and he will see his GI team at 4pm. I will do my best to try and post an update on here, if not, definitely keep checking the For Austin Woods Facebook page.

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Starting 2nd Round of Antibiotics… Health Update: 6/22/15

I feel like I hardly post anything on here anymore, which is a good thing, because I tend to post on here when he is sick or reaching another age milestone.

I spoke to one of Austin’s doctors today about a cough that has been lingering for a little over 3 weeks now. Although it has slightly improved (it didn’t even slightly improve until day 11 out of 14 days of antibiotics), it is still there and he is acting more tired than typical. The best way I can describe it is that Austin RARELY naps anymore, maybe 2-3 times a month and in the past couple weeks he’s been napping (or seriously needing a nap) 2-3 times a week! Unfortunately for me, the extra napping has been more worrisome than a blessing. With CF, being extra tired is usually an indicator that something is up.

Austin will be starting another round of antibiotics for 14 days (a different antibiotic than the one he started in early June). We are also doing albuterol every 4 hours to see if maybe that might make a difference. If it does, Austin will be put on a steroid for a few days. If the extra albuterol doesn’t make much of a difference, we will wait until next Monday to see if 1 week of the new antibiotic helps. If the antibiotics do not help, we will go to UCSF for a sick clinic visit to double check everything and worst case scenario, he will be admitted. I hope that will not be the case and I am actually really happy we have these other options to try first!

Please send the little man some extra prayers!

Health Update on Austin: 5/5/15

It has been quite a while since I updated this blog and that is mostly because Austin has been doing so great the past few months!!! He just finished a 2 week round of oral antibiotics for a little cough he has had on and off for a while. Other than that, Austin is being your typical “terrible two year old!”

Our Great Strides team has raised $9,080 since we started in 2013. My goal this year was to raise $5,000, however, I find that trying to raise all this money by myself is really draining so I won’t be doing much fundraising for this year’s walk. It would be nice to reach $10,000 total raised, but I’m not holding my breath. Also, for the past two years, our “team” included only Tyler and I, while other teams had up to 25 people raising money/walking with them. Unless some people decide to sign up for the walk with us, I will not be doing the physical walk in Santa Cruz this year.

http://fightcf.cff.org/goto/ForAustinWoods2015

Austin McKean Woods at 2 years old:

Weight: Just under 28 pounds

Height: 37 inches (REALLY TALL for his age)

Hair/eye color: light brown & brown

Favorite foods: Mac & Cheese, pizza, cheetos, apples, jelly beans, pop corn

Favorite toys: CARS. Everywhere. All day. Every day. “Bouncy balls” (as Austin would say)

Favorite things to chew on: Cars, random stuff he finds on the floor

Favorite song: I Like to Move It from Madagascar

Favorite thing to watch: Bubble Guppies, Bolt, Paw Patrol, Curious George

Austin can say: Really random sentences now! Some examples are: Where is it?, There it is!, I need it, I want that ball, Bless you (after you sneeze), I want to go outside, put on my shoes…. there are more but some of them are so random!

Milestones this past month: He’s definitely talking more and it makes understanding him a little bit easier.

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Rejoice! No Psuedomonas!!!

Sorry I haven’t been updating the blog recently! It is a lot easier for me to update Austin’s Facebook page (www.facebook.com/foraustinwoods).

Anyways, yesterday we got the call saying that Austin did NOT culture pseudomonas!! He did culture enterobacter, however, his clinic will not treat it with antibiotics unless he begins to show respiratory infection symptoms. We did find out that Austin has a minor ear infection as well, but it will also not be treated unless it becomes worse.

The main reason his doctors don’t want to treat anything right now is because the more frequently antibiotics are used, the more likely the bacteria Austin cultures will become more resistant to treatment.

Just wanted to give you guys a quick update on that! Thank you for your continued thoughts/prayers for the little guy! We hope 2015 is going to be a happy/HEALTHY year for Austin!

Austin at 18 months

Austin McKean Woods at 18 months:

Weight: 25 pounds 10 ounces

Height: over 34 inches

Hair/eye color: light brown & brown

Favorite foods: Mac & Cheese, pizza, cheetos, apples, pancakes

Favorite toys: CARS. Everywhere. All day. Every day.

Favorite things to chew on: also his cars :/

Favorite song: Songs from Madagascar and Frozen and Curious George theme song

Favorite thing to watch: Toy Story movies, Madagascar movies, Brave, Cars, Frozen, Beauty & the Beast, Aladdin

Austin can say: nothing really new! He has been mastering his motor/climbing skills the past few months. He loves to babble nonsense, but often refuses to use real words. He is a very good listener though (when he wants to be) and will do pretty much anything you ask him to do. One thing new he does actually say from time to time is please (or “eeease” as he says it).

Milestones this past month: He sleeps in a big boy toddler bed, however, since he recently broke the metal bottom frame, he will probably be upgrading to a REAL big boy (twin) bed in a week or so. He has never really been into dancing, but he is starting to get into it, especially when the song “I like to move it” from Madagascar is on.

For Halloween this year, Austin will either be a firefighter or a SF Giants baseball player (free costumes for us since he already has so much Giants gear and a firefighter rain jacket/boots).

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Update on Austin and GI Barium X-ray Results

I have been really bad at keeping this blog and Austin’s Facebook page updated lately! I tend to post more on my personal FB page (www.facebook.com/jordanmrocha). Anyways, this summer has been pretty up & down with Austin’s health. He had two unscheduled sick visits, the first one for, well, I don’t even remember and the last one on July 31st was for bad tonsillitis and a little trip to the ER for dehydration. On August 14, Austin had his GI barium study which typically takes 3-4 hours for a normal person to complete. We were informed that with Austin’s CF, it could take all day, WHICH IT DID. It was funny because even the lead Doctor said that he had never had a CF patient literally take ALL DAY for a barium study.

We got the call this week with all the findings from the x-rays. Basically, it showed Austin does have moderate reflux problems (even with all the antacid he takes daily) and EVERYTHING in his digestive system is just REALLY slow, even pretty slow for someone with CF. We started Austin on Erythromycin, a common antibiotic that can also be used to help with digestive motility. He takes 0.8 mL 3x a day with meals. He’s only been on it for 24 hours, so we haven’t noticed any real difference yet, but we will re-evaluate everything at his next CF clinic appointment and GI appointment on September 12, which also happens to be the same day as the SF Giants CF Awareness Night game vs the Dodgers.

Anyways, we are hoping Austin stays healthy and that we can get back to CF clinic appointments once every 3 months (I still can’t believe he’s been to UCSF 6 times in the past 3 months)!!!