Thursday, October 24, 2013

Closing in on two...


Jude's mommy here.

Yup. It's been awhile.


I guess you could say it's getting harder and harder to find time to update this little blog. Why? Well, because our sweet boy is keeping me on my toes!

Here are a few updates:

Since my last post (in August) we've not used his g-tube for a single supplement of water or food. He is totally sustaining himself nutritionally and he no longer needs extra water placed in his g-tube to make sure he is well hydrated. He is a happy eating and drinking little boy. For fun, I thought I'd list some of his favorite foods: donuts, bagels, peanut butter (on anything), ketchup (on everything!), eggs strawberries, applesauce/apples, cheese-its and goldfish, and he is still a lover of baked beans! As you might have noticed there aren't any veggies in this list. Jude puts up a big fight about eating his he is on a multivitamin.

If Jude continues to do well with eating/drinking the plan is to remove his g-tube in February 2014! Please join us in praying that this will happen.

Jude is still considered "allergic" to dairy products. But his allergist gave us permission to feed Jude food with milk "baked in". Like breads, muffins, crackers, etc. He has been eating a lot of "baked in" foods and recently we started giving him food items with a little bit of cheese. He's been successfully eating cheese pizza and a few other dishes with small amounts of cheese. We feel pretty certain that he is on his way to growing out of this allergy. Yay!

Developmentally Jude is on target. As I mentioned above, he is eating just like a normal little boy. Physically he is on track too. He is walking just fine....and running. He's a little clumsy...but so is every other 22 month old! From a speech standpoint he is "wowing" us daily. He talks ALL the time. Nearly knows his ABCs and can count to 10. (We don't deserve credit for this AT ALL. Annabelle was his teacher) Every time I hear him say a new word, I think to myself "this should not be!" Our sweet boy was on ECMO for so long and sustained such trauma and has faced so many delays...I thought surely his speech would become an issue. But oh how the Lord has surprised me!

Jude is still seeing pulmonology, neurology, allergy, ophthalmology and surgery. He is completely off ALL medications. Yup, that's right. No more acid reflux!

Overall, Jude seems like a pretty healthy little toddler. He is enjoying life, food and people. And that just makes my heart swell with joy!

In everyday life, I think of Jude as a normal little toddler with normal toddler challenges. We are facing the typical toddler tantrums, curious little explorations and lots of laughter! But every once in a while, a little bit of fear creeps in. Fear that Jude's gortex patch (his artificial diaphragm) will break and send our sweet boy into a tail spin of medical issues. I fear facing that day. And my prayer continues to be that he will never face such challenges again. Will you pray this with me?

In the same vein, Jude's pulmonologist has recommended that Jude be in isolation again this winter. As we mentioned last fall/winter...Jude's lungs are not the same size as other kid's lungs his age. They are smaller because his organs pushed through the hole in his diaphragm and stunted their growth. And since they are smaller he is at greater risk of having to be hospitalized after a respiratory illness. RSV and the FLU would be especially scary for Jude. Yes, it is good for Jude to build immunities...but it is better for us to protect his small lungs from a damaging illness until they have had more time to grow and expand. And THEN he will be ready to take on those immunities that he needs to build.

As you may remember, we had Jude in isolation last fall/winter. We were pretty strict and limiting with Jude's time outside of our home. This year we will again limit some of his activities but we've loosened up in a few areas.

Here is the scoop:

- Jude won't be in nursery at church. Brian and I will be alternating turns attending church this year. One of us will go with Annabelle and the other will stay home with Jude.

- Last year, we did not do any playdates. But this year we are planning to enjoy small playdates with children/adults who are symptom free. If our playdate buddies have symptoms we will not attend. No one needs to miss out on the fun because of us. We'll just stay home and stay well.

- Sadly, during this isolation period we will not have other children in our home. (insert BIG sad face here) But we feel certain that we need to keep out home as germ free as possible. We are happy to visit you at your home as long as the members of your household have been symptom free. I hate "closing" our home. This one seriously bums me out.

- Adults can visit as long as they are symptom free. Please let us know before you visit if you (or someone in your household) has been sick recently.

- We plan to continue with our public outings. (grocery store, Target, etc.) Just don't be surprised when you see my over sanitizing the shopping carts and the kids hands. We usually change clothes after public outings too.

- Annabelle will continue to go to school. She takes a bath every day after school to minimize the risk of bringing something home. Thus far it's worked! Please pray for Annabelle's health during this season too!

- Most importantly, please know that we will remove Jude and our family if someone is ill. We don't want other people missing out on events, get togethers, etc. because of our "isolation". Please keep us informed. We are ok with missing out on things if it means keeping Jude healthy.

I also want to ask all of you for prayer for our family during this season of our lives. Isolation (although this year is a little better) can be lonely. It's hard not to enjoy a lot of the things we normally participate in during the warmer months. We are easily forgotten when get togethers are planned because we've "been out of the picture" for awhile. Will you pray for healthy bodies, hearts and minds during the coming months? Will you pray for opportunities to enjoy community with others? Will you pray for Brian and I to have opportunities to be together, just the two of us? Our isolation officially kicks off November 1st and will last until March/April.

And guess who will be 2 in December!?!!?!?

Thank you friends!!

Ok, on to a few pictures. I know that is what you are waiting for:
 Park visit in Charleston
 He LOVES being with his daddy.
 Enjoying donuts after flu shots!
 A trip to the apple orchard. A family tradition!
 A CDH kiddo and families meet up. (another blog about this coming soon)
From left to right: Lily, Bonnie, Clara, Parker (and their mommies)
Jude's costume for dress up :) 
 Guess who is in a big boy bed now?!?!
Enjoying our local zoo!