Weekends

I love weekends, I wish they were longer!  I love being home all together as a family.  I love that we eat big breakfasts late in the morning, hoping to fill the kids up so that we can go on an adventure with all of them before they need to eat again.  Almost always someone is hungry again before we even arrive at our destination.   This weekend our weather was cold and rainy, but we enjoyed it nonetheless.  We spent the better part of today in our pajamas catching up on a few things around our house, this was just what we needed.  This kids had a blast playing  together.  They made “stuff” out of cardboard boxes and paper.  Jack made a ship similar to what the immigrants traveled to America in complete with steerage, the part of the ship where the “thrifty” people traveled.  They have been doing a big heritage project in social studies at his school, can you tell it has made an impression?  Sophie and Megan made houses for their vast array of stuffed animals that are all named after some of their closest friends, I don’t think that there is much resemblance to the actual people though.  It is so fun to watch the interactions amongst them.  When the kids are laughing about something Lucy now tries to laugh with them, even though she has no idea what they are laughing about.  How cute is that!

Last week was busy and full of ups and downs. On Tuesday we took Lucy back to CHOP for an appointment with her metabolic doctor and geneticist.  I don’t know why we thought that this appointment was going to be any different than any other appointment we have had with them in the past.  Maybe we were hoping that they would be more helpful to us now that we have Lucy’s biopsy report back from Dr. Shoffner, sadly they were not.   Without going into too much detail, Lucy’s metabolic doctor questions or disagrees with some of the recommendations that Dr. Shoffner has made for Lucy.  This put Drew and I in a very uncomfortable situation.  Our focus for Lucy has and will always be to get her the best possible care and treatment that we can find. We feel that continuing care with CHOP Metabolism is not in Lucy’s best interest at the moment.  However, we do feel that all of Lucy’s health care needs are currently being met, and that her health is being managed by some of the best doctors and specialists in our area who are very interested in helping our Lucy!  They did order another series of  metabolic labs to be drawn on Lucy.  While I was sitting in the lab yet again holding our tiny girl, the tears started flowing.  Lucy can now shake her head “no” when she doesn’t want something, when she looked up at me and shook her head “no” with big tears coming out of her eyes I could not hold back what felt like a years worth of emotion.  We will continue to hope and pray that we find the right doctors, treatments, etcetera  for our little girl. 

After all of that emotion we still had to take Lucy back to interventional radiology to have her tube looked at.  This was the last thing we wanted to have done, but it had to be fixed.  They scanned her belly and found the tube to still be in place, but because she was experiencing dumping syndrome they pulled the tube and placed a shorter one instead.  The hope is that by making the tube shorter and  placing it closer to the opening of the  jeoujenoum  it will allow the body more time to absorb the food.  In theory this makes perfect sense, however for Lucy it’s not working.  Whenever we have fed her through her j-tube she has diarrhea.  We have switched back to g-tube feeds and will discuss this with her GI doctor and nutritionist in more detail this week.  Today we noticed bleeding around her site, it looks like we are dealing with granulation tissue  again and possibly another infection.  I drew a circle around the redness and will keep and eye on it to see if it spreads.  Overall she is not acting too “off”, but she has been sleeping a lot recently. 

Despite all of the medical stuff, our girl has been making progress in her vocalizations.  She can sometimes say dada and baba when you ask her to,  this is huge!  She very rarely vocalizes anything but these sounds are deliberate and have meaning to her.  In her music class we chant rhythms saying “ba, ba”  Lucy repeated these sounds in class several times.  Her OT came with us to class last week, perhaps she was trying to show off a little to Kris.  We were all impressed! 

This week will again be loaded with medical appointments. We will be at DuPont three days this week.  We are scheduled for seating clinic on Tuesday morning to pick up her new pediatric wheelchair.  Thursday we see cardiology for a full workup which they told us would be a three hour appointment.  After that we head upstairs to neurology to have her hooked up for her 24 hour ambulatory EEG.  Friday we return to have the the leads taken off and to turn in the transponder. 

I said in an earlier post that we are going to have to schedule in some serious fun when all is said and done this month, and serious fun is what I am planning for our family.  I will let you know more about what we are planning in upcoming posts.  As for now, please pray that we all continue to stay healthy and that we continue to be reminded of what is truly important in our lives so that we stay focused in the midst of all of that we have going on.  Thank you so much for all of your thoughts, prayers, and support we can not even begin to tell you how much they mean to us!