Moving up the date

CHOP has moved up the date of Sofia's surgery to 7/22. We're down there next week right after the fourth to verify her reflux is under control and then it will be go time!

Some pics of Sofia

Here she is licking the window (Daniel is playing outside).



Here she is on her way to get her G/J tube which had to be done radiologically which is why Daddy has a lead jacket on.

D-DAY (take 2) July 28th!

We've set a date for the second reconstruction down at CHOP, assuming all goes well with her reflux as measured by the impedance probe on July 5th.

We'll be down in Philly at least a week while she recovers in the hospital post-surgery with her stent. Then they will remove the stent and we can go home. Daniel will likely be living large with Grandma for that week.

It's about six weeks off so there's a lot that can happen between then and now but it is good to have a goal date to work off of!

G/J!

Sofia is now a G/J girl, getting continuous feeds from her backpack through the J part of her tube which goes direct into her intestine. The hope is that this will prevent her reflux. We'll be back at CHOP to validate around July 4th after that it should be onward to the reconstruction.

In the meantime though she's a drooly mess from her tonsils (she still doesn't like to swallow) so with the new backpack she can be a bit difficult to manage. But she is mostly happy about it!

Swimming

Daniel and Mommy went to swim class for the first time yesterday. He really loved it! Splashing and playing and in general having a good time.

Today we are going to have Sofia's G/J tube put in which will allow us to schedule our next trip to CHOP and set a date for the reconstruction, on the assumption that we can manage her reflux now. Should be a relatively simple procedure which is good as she is still recovering from her tonsil and adenoid removal and nursing is a bit dicey this week.

Tonsils and Adenoids are out

Sofia had surgery on Wed and is recovering. She's mostly okay but according to the surgeon this weekend will be tougher as she starts to scab over the incisions. She's on continual pain meds and hopefully will be ok.

However it turns out that she is suffering from some non-acidic reflux that occurs whenever she eats so our next step is to put in a G-J tube (right now she just has a G tube that goes into her stomach) and put her on more continuous feeds for the next month. This will push back the reconstruction into August but will give it a much higher chance of success (this likely contributed to the previous failure).

Putting in the G-J isn't surgical since she already has a hole for the tube so we are looking for it to be done ASAP.