Originally published 1/4/13
I think it is safe to say that the one thing I have learned about “hospital life” is that as soon as I adjust to a new schedule/ routine/ procedure...something changes! And I don’t mean that in a bad way. It is truly amazing to be here watching experts in their field “do their thing” and see the amazing results. I guess that is why on Friday I shouldn’t have been surprised that less than 20 minutes after sending my update....things changed yet again.
GUESS WHO IS NO LONGER RECEIVING ANY FORMULA VIA G-TUBE...
THESE GUYS! Zac AND Dom! Zac is now drinking all of his formula! I’m not saying he is loving it....but he IS doing it. So for the record that is Cup-2, Zac-1 ;)
Dom is within 2 ounces of drinking all of his formula. However, he is just about meeting his caloric needs so they discontinued his g-tube feeds this morning!
Dom’s allergies have been the biggest challenge when trying to make progress. It seems that there are many foods/ drinks that he would benefit from, but most contain either egg or dairy. Since he’s allergic to both it is taking him a bit longer to gain weight...but he IS making slow but steady progress. He is up to 6 ounces of formula orally!
I’m sure that pic seems weird since we are at the hospital, but we actually went on a field trip! We visited the Towson Mall. It was a great mall full of escalators and elevators that Dom and Zac rode to their hearts delight. They even had a few of the toy helicopter stands in the mall. Zac has been telling his therapist all about his RC helicopter at home. It has actually become a bit of a running joke. Whenever Zac sees one of his therapists they ask him if he played with his helicopter last night. To which Zac always replies “Yes” and then proceeds to giggle. He is such a little comedian. However, the mall was great. I grabbed some coffee (something my dad would be proud to hear) and grabbed a panini to save for dinner tonight.
While at the hospital we have also learned to be flexible. When I lost my favorite water bottle and discovered that they don’t sell any in the hospital gift shop I asked one of the nurses if they had any pitchers I could borrow until Justin was able to ship me one. The nurse was kind enough to search around and gave me this:
I only wish I was kidding....However, Zac didn’t seem to mind.
(Don’t worry....we didn’t actually use it. Thankfully my water bottle was found later that evening!)
I also discovered that an emesis bowl makes a great substitute platter to leave cookies out for Santa. I didn’t know what “emesis” meant until I googled it after a nurse commented on my thriftiness.
On Monday we have our big “Steering” meeting where the whole team (doctors, nurses, behavior psychologists, speech pathologists, occupational therapists, etc) meet together to discuss the treatment program and establish long and short term goals for both boys. This morning the nurse practitioner came in and said that she was incredibly pleased with all the progress the boys are making. She stated, “This is the first time in my career that I am going into steering with the child already off of the g-tube for formula.” I don’t know how long she has been in the program, but I took it as a sign that we are doing good and perhaps our dream of a g-tube free life is in our not-so-distant future after all.
Happy New Year everyone!
P.S. Justin and I have been very overwhelmed with all the kind words of encouragement and support throughout our time here. We have also had an outpouring of support from our families who are hosting a Benefit for Dominic and Zachary. If you are interested in coming check out: http://upcoming.yahoo.com/event/10668278/NY/Eden/Proudman-Benefit/American-Legion-Newell-Faulkner-Post-880
It will be held on March 3rd at 1pm (shortly before Dom and Zac’s 11th Birthday.) The treatment they are receiving here is going to improve their quality of life so much. It is the best birthday present they could ever receive. (And for those of you wondering....Yes, we will be home by then. Dom and Zac would never want to miss a party!)
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