Thursday, September 27, 2012



Guess who promised an update on Jude yesterday and did not do it?

Yep. That would be me!

I have to admit, the day got away from me and this mommy crashed and got a good night's sleep!

But here I am with the update! And I'm quite sure that it was meant to be for me to delay an update because Jude had big plans for today!

Can you guess what happened today?????

Did you guess?


Jude said "DaDa!" today!

It is a given that we are not sure that he is associating the word "DaDa" with Brian just yet....but we are *thrilled* that he is starting to make those babbling sounds that kiddos his age should be doing by now!
I've not shared it much on the blog, but we've been a little concerned about Jude's speech and this gave us a BIG boost towards thinking that he will be just fine....he is just catching up from being in the hospital a whopping 6.5 months (plus 3 more weeks 1 month after discharge). So, I gotta say that we are pretty proud of our little guy's new found voice and vocabulary. Most of the time he just likes to growl (or make dinasaur noises) but this is some babbling for sure!

This week Jude dropped his iron suppliments and now he is down to one medication and one supliment! He is taking Zantac and poly-vi-sol. Not bad at all!

Overall he is feeling pretty good but I do want to ask you for prayers for Jude's retching and gagging. Because Jude has a Nissen he is unable (or it is *really* difficult) for him to vomit. But at least once a day Jude has an episode of retching and gagging. It last about a minute or so and looks pretty miserable. It breaks our hearts to see him struggle. I've been doing my *research* on this problem and seems like this is a common problem with g-tube/Nissen kiddos. Many CDH friends  and doctors have recommended "venting" Jude's g-tube to release any gas/air stuck in his tummy. And I do this several times a day...but he still has the retching problem. He even had an episode yesterday while I was venting him. So, I am a little stumped but his troubles. We plan to talk with his surgery team on Wednesday (follow up visit) about this. Will you pray with us for an answer?

From an eating standpoint Jude is taking little steps towards eating by mouth. Our newest discovery has been that Jude's refusal to eat is becoming more of a behavioral problem....or I guess the best way to put it is that he *chooses* not to eat. Physically he is totally capable of swallowing and we've witnessed him swallowing his formula (via dropper) multiple times. But he has learned that if he freaks out (i.e. screams, drools, big fat tears) then mommy or daddy will get him out of his chair and stop the feeding process. So, now we are focusing on giving him positive reinforcement when he actually *swallows* his formula. Typically he just keeps his mouth open and lets the food/formula run right out of his mouth but in the last two weeks he has started swallowing his formula. Most of the time he gets mad out of frustrating and fear of swallowing. But now we are using a reward system when he successfully swallows and the new approach seemed to work really well today! He swallowed his formula 6 times (6mls) today without freaking out and he even added a few little "DaDas" in there too! Please pray that this method continues to be successful!

Physically Jude is working really hard too. He able to sit unassisted and is getting better and better at catching himself when he starts to fall. His left side of his body is a little tight and needs some extra stretching. We suspect that he has been leaning more to the left because of the pain he has experienced from the many surgeries on the left side of his body. This has also impacted the muscles on his back on the left side of his body. He is already "balancing out" a good bit but he/we will have to continue to work hard to lengthen his muscles. Jude is also working with his PT to "army crawl". He is barely started but I can see the desire and determination in his eyes to get moving (and keep up with his sister)!

Our family life is starting to feel a little bit more *normal*. It is amazing to have our little guy not vomiting several times a is amazing to be able to feed him bolus feeds only 5 times a day (instead of continuously all day long) is amazing to take him outside to swing and play with his is amazing put him to bed and have him sleep through the is amazing to watch him laugh with his sister and light up when she is near.

My hope is that I will always appreciate and remember where our little guy has been. What an incredible and miraculous journey! The Lord is good. We are thankful for the path and journey that he has chosen for Jude and our family.

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