A look back....A look forward....

So it has been a LONG time since we have updated the blog.  We have just been living and enjoying life with everyone at home.  So a look back....June was great.  We really started to adjust to Klara and her equipment.  We joined a swim club, Emily got comfortable driving the girls around by herself, and Klara really grew both physically and developmentally.  Her Drs were always happy with her progress.  She is alert and attentive.  She is rolling to her sides, grasping toys, babbling, laughing and she loves her big sister Lily and Lily loves her.  Emily resigned from Weisman's after 8 years.  We decided with all of the uncertainty, Emily should be at home.  Trust me - no tears were shed with that decision.  We also received the call from our neurologist with a diagnosis.  Klara has a rare, congenital muscular myopathy called Central Core Disease.  Her Neurologist decided to test her for this after her admission in May for Rhino Virus.  He performed another ultrasound on her muscles during that admission and he found cores.  He then went back to her muscle biopsy and was able to confirm the cores there as well.  He then ran a blood test to confirm the diagnosis and we got those results at the end of June.  We are still learning about this disease.  But what we have learned is that there are not many people with it and it seems to effect everyone differently.  Klara's results came back showing it was passed genetically - recessively.  This means that we are both carriers.  We are doing bloodwork to confirm this and we are having Lily tested as well to find out if she is a carrier.  
June was a busy month. 
July has been busier - but not as good. July brought with it a lot of changes.  Klara transitioned from breastmilk to formula, she got a new ND tube and we were working hard to get her food volume up to help her grow - catch up.  It caught up with her. The first week of July Klara required more suctioning then normal - normally we don't suction her so any amount was weird.  The second week we were suctioning her for hours in the morning - every morning.  Definitely not normal.  Finally,  we found ourselved in the ER July 15 at 5:30AM.  We ended up being in the hospital for over a week.  It was probably one of the most difficult weeks as we didn't know what was wrong.  We just knew that Klara wasn't handling her feeds anymore.  She was tested for viruses, infections, we looked at formula, at the tube, reflux (stomach acids) and finally volume.  As it turned out we increased her food too much too soon.  Klara is picky about things - we should have known.  So we found a level she was happy with.  However, it wasn't enough for her to continue to grow so we had to increase the calories and hope that she handles that.  So far so good.  We came home from the hospital yesterday and enjoyed a nice day together as a family.  Klara had a few issues in the late morning but we messed with her tube placement a little bit and she seems happy. 
A look forward -
During our admission, we discussed our options for Klara.  It is believed that Klara will be able to eat by mouth - eventually.  Her Drs want to get her through these next 2 winters as easily as possible.  So her Neurologist, Pulmonologist and other Docs feel that she would benifit from a Gtube (feeding tube directly in her stomach) and a nissan or toupet (rubber band at top of stomach to prevent reflux).  We will meet with the surgeon soon and set up a date for that surgery in August or Sept.  Again, neither are permanent and her Drs do not feel she will need it forever as her muscle disorder is not one that will get worse.  She is expected to get stronger....to a point. 

That is enough to take in on a Monday morning.  We will try to do a little better at keeping you updated. 
Hope you are enjoying your summer!
The Pedersens