A month for the history books...

Can you believe that Lucy had ZERO doctor appointments in the month of June?  What a treat for all of us to not have to go to the doctor for any reason!!

Although - and I cannot believe that I am STILL writing about this - we did have a phone consult with the GI office because her feeding tube site has been SO leaky lately.  Jason and I have switched out her button (which goes into her stomach and then is filled with 6 ml of sterile water, so the balloon inside her stomach keeps it in place) 3 times in the past few weeks and we are back to changing her dressing 4 to 5 times per day - as well as going through many, many shirts that get soaked.  UGH!  Most concerning is that the skin around her site has gotten very raw and irritated and we are not able to combat it with any of the multitude of lotions, creams or ointments that we have (we have tried natural remedies, like Tea Tree Oil, barrier creams with zinc oxide, petroleum-based ointments, yeast-fighting creams and powders, etc., etc., etc.).  So we finally called the doctor's office and they suggested over-filling the balloon in her feeding tube button to provide a tighter fit and also prescribed a new cream that is supposed to work wonders on raw skin.  So, we are hoping that these two changes will help.

On the bright side, we did schedule an office visit with the GI team for August to talk about POSSIBLY taking her feeding tube out!  I am trying not to get my hopes up, as we have been told repeatedly that doctors are very conservative about not taking out a tube too soon.  Lucy is super patient with all the dressing and clothes changes, but can you imagine trying to get a 2 year old to sit still several different times a day so you can dry her off, rub her down with ointment, and re-dress her?  UGH!  She has been able to handle new foods lately, like small bites of rice that are not ground up and even some canned green beans!

On the positive side, Lucy continues to amaze and delight us every day.  She likes the new piano that we got from my parents (it's the piano that me and my sisters learned on!), climbing up and down everything in an attempt to reach things she shouldn't (like the table) and playing with all of her new birthday presents.

We hope you all enjoy a fun 4th of July weekend!!