Monday, April 9, 2012

Faith Enjoys Easter with the Family

Here Faith is opening her Easter basket with her sister Hope.  She likes the little Donald Duck with the blue ears.
Sibling photo at Nana's house after Easter service. Top left - Elijah then Gideon, Faith in the Center with Grace and Hope.
The whole family in our shades of was a lovely day.
Hanging out at home and enjoying the evening.
Faith has been feeling better (not perfect) ever since we started giving her olive oil in her diet.  She has also gained a lot of weight, and now weighs about 31-32 pounds at a little over 3 years old.  She probably gets about 1 tablespoon of oil per day which equals 240 calories in 15 ml or 1/2 an ounce.  Lots of calories are packed into this little bit of oil.  The bleeding from her bowels stopped when we started the oil and it was the only change we made.  A doctor said he didn't think it helped, but we are convinced otherwise.

The last week or so, we have been letting Faith sleep through the night without using her bipap for breathing assistance.  She has done well and seems to sleep better.  She needs the bipap when she is sick and then it helps her sleep better to get over sickness.  This is a happy time to turn off the bipap and get rid of the noise at night.

Wednesday, April 4, 2012

Orthopedic Appointment

Faith continues to do well since her last bleeding episode back in early February.  Jesi took her to the orthopedic doctor on Tuesday.  She wanted them to check her back because Faith was having some trouble standing up.  She would lean over every time we had her standing.  This hasn't been happening lately which has made us wonder if she had injured her foot or the ear infection she had caused the problem especially since the doctor did not see any real change in her back and said he hips were fine and not out of alignment.  Since she can't talk and tell us that she is hurting, we just don't know what is happening sometimes.  It really requires some thinking skills to figure this child out.

After having Rick Santorum be the only other Trisomy parent we had met, this past week we met 2 other Trisomy parents.  We had the privilege to meet Mina, Juwan, and Mylah, and Jesi got to meet Kathleen McCartney and her son.  Grace was able to babysit for her.  So it was a busy week.

Overall Faith continues to do well, and her feeding issues have improved, but it is still not easy feeding...just easier than it was.

Sunday, April 1, 2012

New Trisomy 13 & 18 Video with Children including Faith

This is a video put together by Jill DelSignore who is another parent of a Trisomy child.  It includes photos of children from all over including Faith.  She is in it toward the end several times.  These photos are great, and I hope you enjoy it.