The light at the end of the tunnel....we hope.

So, a lot has happened since the last post.  Lets see if we can recap.


Lily celebrated her 2nd birthday.  We had a party for Lily.  It was a lot of fun but also heartbreaking not having Klara there with us. Hopefully we won't have too many more holidays or family events without her home with us.
  
Klara has continued to get stronger and BIGGER.  Little KD bug weighs 6lbs 3oz!  She is finally gaining weight consistently and filling out her newborn clothes.  She has also weaned off of her oxygen.  She did transition to an OG tube - so it is back in her stomach and has been for over a week.  They started her on continues feeds and they have been slowly condensing it.  They were able to condense a 3 hr feed to an 1 1/2.  Unfortunately they had to bump it back up to 2 hrs because she spit up a little too much last night.  She is still showing signs of refluxing but she isn't desatting or dropping her heart rate.  Our little trooper is doing a great job.  The docs plan to decrease it again tomorrow.  


What we are looking forward to-
If Klara continues to handle her feeds condensing her speech therapist is going to introduce bottle feeding next week.  Cross your finger.  We have been doing passy dips and Klara loves it.  
Also, IF Klara can handle her 3hr feeds over a 30 min time span then we will be able to bring her home.  Klara has impressed the docs over the past couple of weeks and they are excited about her continued progress.


The diagnosis continues to be unattainable.  All of her tests continue to come back normal.  The only thing that has come back abnormal is her muscle biopsy however they have yet to be alb e to find out why that is.  Her neurologist has recently ordered a new batch of genetic testing.  It could take up to 8 weeks to get these results back.  Her neurologists is also sending her files to a specialist at Oxford in England.  Who knew our little peanut would cause so many people to scratch their heads!?!  


We did find out that she was the topic of a recent presentation at CHOP and even with all of the doctors and specialists....still no answers.  


On a good note...her physical therapist is continuing to see progress.  Our Klara is getting stronger.  She is moving a little more.  She can swipe at toys with support at her elbo, she is beginning to coo and occasionally we see a little smile.  She is doing amazing.  She is amazing and we are finding our strength in her.  And Lily.  
We are also preparing Lily for her little sister coming home.  She was nice enough to pick out bottles the other day at the store and insist on carrying them around with her saying - Klara bottles....maybe someday they will be.  


Thank you again for all of your prayers and support.  Hope you all have a Happy Easter!