Long Time No Post!

(Valley Forge Park with Mommy and Babcia - Saturday April 4, 2010)

Sorry...Long time no post!  It's been busy...I am sad to say that I still have not had the time to figure out the picture thing on my MAC laptop...but somehow I figured out how to post this picture on the blog. Enjoy my small victory!

Alex is getting big!  She continues to be very happy, smart, active and a lot of fun!  We have to get her hair cut once a month because it grows so fast!  Alex is walking and running and is into everything!  She is a very social baby but also very indepandant. P.T. appointments are going well and so are the Feeding Therapy appointments.  Alex still gets angry when she gets the applesauce in her mouth as the last bite of her Feeding Exercise but she continues to trust me with taking bites which is very good!  Tomorrow we will be elimenating the empty spoon and and using apple juice for all the bites except the last two.  The last two bites (instead of the last bite) will be applesauce.  We will also be giving Alex 12 bites now instead of the 10 she has been getting.  We will see how she reacts to this.  She always seems to do very well at the Child Psychologist office but it takes her a few days to adjust at home.  The Child Psychologist is going to contact the allergist and the nutritionist and ask them what milestones Alex needs to achieve in order to qualify for the Day Hospital Feeding Program.  This program is very intense...It is an out patient program but it takes at LEAST 4 weeks (excluding weekends), last for 8 hours each day and I would have to be there with Alex the whole time.  The purpose it to see if they can get Alex to eat more by cutting back on her tube feeds.  Alex would be working with an assigned therapist who would be in constant contact with Alex's allergist and nutritionist.  Her weight, behavior and progress would need to be closely monitored. I could stay at the Ronald McDonald House if there is room but I kind of would rather brave the rash hour traffic and not have to pack once a week.  I would also like to give Alex the comfort of her crib, her toys, etc. during a trying week before the break of a weekend comes.  But then again being so close to CHOP while needing to be there every morning into the late afternoon would be wonderful! We will see...There are are obvious challenges to this program and me possibly not being home for a month or longer...The one odd thing is that they only have cots in their nap room for kids...And Alex obviously needs a crib and her nap...Apparently the nap room is very small...Just pray that God would take care of all the details when the time comes.  I don't think this will happen for a while but it's good to be informed, prepared and to pray to pave the way. BTW - Alex now drinks water very nicely (is not longer afraid to swallow it) and lets me brush her teeth twice a day!  That's a big deal in our house and Alex's behavior!     

Alex's MIC-KEY Button valve continues to leak every 2-4 weeks.  Today Alex got a g-tube called Mini One.  It is half the size of the MIC-KEY button which is great.  Has a few differences that we will have to get used to...Apparently these buttons have some issues too but the valves seem to last much longer.  They are supposed to last for at least 3-6 months on both buttons but the MIC-KEY has been having major manufacturing issues with balloons and valves in their buttons for a year now - since they moved their manufacturing facility to Mexico...Apparently a lot of people are complaining...but not every kid is a candidate for the Mini One.  Thankfully it fits Alex great!  The whole change over was a traumatic experience for baby and Mom...Alex pulled her MIC-KEY button out about a week ago while throwing a fit...the tract that the tube goes into apparently takes a LONG time to heal after it is originally placed...Alex pulling the tube out with the inflated balloon was like tearing a scab off a wound.  It is a very vascular area so it bleeds a lot...I've bee seeing blood on the split gauze over the past week but Alex did not seem bothered by it.  Well...the General Surgery people who placed the button said her site looks great and there is nothing to worry about, it will simply take time to heal again.  But pulling the MIC-KEY out and putting the Mini One button in really caused her to bleed and it looks terrible coming out of a hole in the stomach...Alex was screaming and crying and I was sooooo bad!  It's done now though and hopefully this button will last us much longer!  They are new, more expensive and harder to get so we shall see how this plays out with the insurance and the home care company...

Alex is going in for her follow-up bladder/kidney ultrasound since the surgery and a follow-up appointment with the Urologist (who did the surgery and by whom Alex has been seen since we took her home from HUP ICN).  If all looks well we can stop giving her the preventative dose of the antibiotic to prevent UTI's.  Consequent follow-ups will be determined after this ultrasound and visit.  It all pretty much depends on Alex and on how her kidney is doing.  

Alex has always liked her swimming lessons and seems to like them more and more as she gets older.  I can't believe he will be 2 years old this summer!  Kind of makes me sad...It goes by so fast...

Thank you for your prayers!