Dani’s Weekly Update

Dani has not thrown up all week, but she will still cry out at times.    She had a follow up appointment with her rehab doctor and all is good.  She was not concerned about Dani’s tone and said to wait on the Baclofen pump.  The only thing she did suggest was to have Dani wear AFO’s again because her ankles are tight.  So she got fitted for some new ones.  Dani’s body jacket was also refitted for her.  She has gotten skinny and longer and her body jacket was made when she was short and tubby!  Dani has a GI and Pulmonologist appointment tomorrow.

Kaylee and Brianna started school on Wednesday.   Starting in September, the girls will be in gymnastics and take swimming lessons at the Wellness Center.  They will also have CCD and therapy sessions as well.  They will be quite busy girls.

Today would have been the day for us to fly out to Philadelphia.  Hopefully, we can get her healthy and back out there!

Dani’s appointments

On Monday, we made our way to Minneapolis for Dani’s appointments.  We had some extra time, so we brought the girls to the Nickelodeon Universe at the Mall of America.  Tuesday, Dani had her neurosurgery appointment.  All is good on a shunt aspect.  Her bleeds are even getting smaller!  He did propose a future surgery for Dani.  But thankfully, she doesn’t weigh enough at the moment so she didn’t qualify for it.  He would like to put a Baclofen pump in her to help out with her tone.  I haven’t done my research on this so we don’t know if we are going to agree with doing the surgery.  Besides, Dani has to reached 30 pounds and at the rate she is going, it will be years before she will be able to have this surgery.  Wednesday was a free day for us.  We spent the day at Valley Fair.  Unfortunately we got rained out in the afternoon, but it was fun.  Thursday we had a GI appointment for Dani.    It was good to hear that putting Dani on a J Tube is not necessarily a permanent thing.  She recommended switching for about 6 to 8 months to let her tummy heal from the H Plyori and then working back up to bolus feedings.  Dani had a CT done as well.  We made our way home Thursday night.

Dani’s follow up appointment

Dani went back into to see the GI doctor today.  She went three days without throwing up, but she would still scream when being fed.  Dani then did her all time best, she threw up all four feedings.  Yesterday,   she only threw up twice.  Surprisingly, Dani is only down 6 ounces for her weight.  But that is 6 ounces she really could use.  He is treating Dani once again for the H. Pylori bacteria because she could have a resistant strain of the bacteria causing her distress.   Dani will also be trying out a new formula to try to rule out any new allergies Dani may have.  Dani got that barium test repeated that she did in the hospital.  You know the one she took over 11 hours to complete!   She actually empties her stomach and everything passed through her intestines to her colon quite quickly.  Basically what it seems it is boiling down to is we have been putting off the inevitable, J-tube.  Instead of Dani getting fed directly into her stomach, the tube would be moved so she would get fed directly into her intestines.  The reason we have been trying to put it off is because it means Dani would be on a continuous feed, probably 22 hours a day.  We go back in two weeks if Dani still hasn’t improved.

Well, Dani has not thrown up for the last two days, so the new medication must be helping.  But she still screams and cries when being fed or getting meds.  I would take the throwing up any day over the screaming she does!  We are still doing nebs on her 4 times a day because she likes to sound like a mini dinosaur.