Our week - at least what I know of it

Monday - Well, we are trying to start back to school.  I'm not sure this is the best week since we have soooo many appts, but I hate to wait for a "good time" as I'm not sure when that will be.  We'll just do the best that we can.  We typically  make a big deal of our first day - and are putting that off until later in the week.  We have a breakfast out and talk about our upcoming year.  Lots of photos and fun.

Today has been ... well, so fun mixed in with not so much fun.  The children have been helpful and also whiny.  So much whining makes me grumpy.  (I know - I should deal with it better.)  Not a great start for anyone.  Part of what is frustrating me is that Eliana's button keeps coming open - and leaking all over everything!!!  She has had on 4 outfits so far today.  She's gotten a quilt, a rug, and me.  I've tried keeping it closed with a soft tube around her middle (doesn't help) and a band-aid (helps but really irritates her skin).  This has really become a problem in the last 24 hours.

Eliana has an appointment with the ENT (ear, nose & throat) doctor today.  I'm hoping that they will get a clear and accurate reading on her hearing test.  I'm also hoping that her hearing is fine.  I'd love to skip the getting tubes for now even though it is a minor surgery compared to what she  has already been through.

Tuesday - We have a visit with our ped.  I'm looking forward to talking with her about Eliana's g-tube, her feeding amounts and the problems we are having.  I'm so glad she is back!  We have a long appt time as she schedules us at the end of the morning or afternoon slot so that nobody is after us.

We will also be seeing the feeding therapist.  I've cut back on Eliana's feeding and it will be interesting to see if it has affected her weight at all.  She has had some good feedings - an ounce is now a good feed - in the last couple of days.

Wednesday - Physical therapy.  I enjoy this because it is usually a time of encouragment.  I found out last week that our PT has co-written a therapy book/assessment tool for use with children.  Wow!  I always hear how great she is - and to know that she has all of this background is even more impressive.  I'm thankful to have someone with such experience helping Eliana.

Thursday - We visit the Down syndrome clinic.  I'll be meeting with a doctor and a genetic counselor.  She is also scheduled to have bloodwork done.  May choose to do that at the ped instead.  I'm not sure.  It won't be a terribly long day since we already have an eye dr, ENT, cardiologist, physical therapist and occupational therapist.  Otherwise all of those folks could be on the list as well.

Friday - Nothing so far.  I think that is what I'm going to want for that day too - nothing!!!

I would love prayers for the following things:

*Leakage - If there is a way for the "flap" to close so that she doesn't leak so much and so often it would be great.  This only happens if the button gets opened.  It happens after a feed, before a feed and whenever it just comes open.

*Hearing - An accurate test.  I'm also praying that her hearing is fine!

*Button - I would love prayers that either it would stop opening or that we could find a way to help keep it closed.  I'm really at a loss as to what to do here. 

*All of our appts would go well.  That I would remember to ask all the questions that I have and that I would get the information that we need.

*Schooling - That this would be the start of a fun year.  We are spending some time this week making "All about Me" books.  I think it will be a lot of fun to have these as keepsakes.

Need to go as it is about time to leave for our appointment.  More as I'm able to post.

Love,

Leslie