Many Doctor Appointments

The week has been filled with many doctor appointments at Boston Children’s Hospital. Mostly with good news.

– Hearing test concluded Lucas has “robust” hearing which is not a surprise to us. Seriously, he has crazy good hearing!
– The microarray results showed no significant findings which helped us rule out one type of immune deficiency that our immunologist suspected. Very good news. Next, Dr. Nowak (genetics doctor) is working with Aetna to see if we can obtain an approval for more detailed genetic testing.
– On the down side, over the last 6 days, Lucas has gone from weighing 10.25 kgs when we arrived in Boston to now only weighing 9.98 kgs. Having Lucas on only formula is not working. He hates his formula so he isn’t even getting the minimum 800 calories per day. Back at home, most of his calories are consumed through actual food. Drinking just formula is killing him & us. Tomorrow, in preparation for Friday’s FMT & colonoscopy, he can only have clear liquids which is water & pedialyte. Poor boy.

Even though we received mainly good news this week, yesterday was a hard day for me. I felt defeated to see Lucas lose so much weight. I felt like I was failing as a Mother. Whenever Lucas pushes the bottle away and doesn’t drink, it just makes me want to cry because I know it means he’ll be losing even more weight. Bryan gave me some much needed hugs & love to bring my spirits back up. Then, Lucas gave all of us a nice gift by sleeping from 12:30am to 8:30am without waking up in the middle of the night. Yippee! During these hungry days, Lucas wakes up numerous times in the night crying uncontrollably for 30 minutes to 2 hours at a time. He won’t take a bottle since once again he hates his formula. Lucas – Thank you for giving us the blessing of one good night of sleep!!!

4 thoughts on “Many Doctor Appointments

  1. Hang in there, we will fatten him up when you get back from Boston. Sometimes on clear liquid diets they will let you have light colored jello, that would have some calories and maybe sate him a bit….thinking about you!

    • Thanks Jackie! It took us the entire 3 weeks at home to put on the weight. Now we’re right back to the same weight as when we 1st got home. Oh well, I should just be happy that we don’t have a leak and are being careful. A leak would mean weeks of no food by mouth. So I need to chipper up

  2. If Lucas is really hungry, his body will tell him to go for it. Is it possible to offer it to him in a cup / sippy cup rather than a bottle? Or is it just the flavour that he does not like? Hang in there! Like you say, if things heal and do not leak then you can get back to real food!

    • No matter the holder, he dislikes the formula taste. Actually, he’s like me & loves water. 🙂 He just tried Jello for the 1st time & loved the taste. 92 calories a holder. So we’ll keep feeding him jello while he can only have clears today.

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