Friday, July 10, 2015

Semi Annual Update !

Last week Last month (I started writing and never posted) we had our semiannual cardiology visit with Dr. H.  With great joy, we have nothing new medically to report, which is a great way to start our summer.   Dr. H has a new nurse who is really nice and I'm sure we will grow to like her as much as we did Angie. { Angie - we miss you !!!}   She was able to get me some of John's hospital records so that I can take with us on our trip to Poland just in case.  She seems easy to work with and that makes me feel a lot better.

Heart function is good with the usual mild leaking, nothing major. Weight 42.5lbs height 43 inches (I think). John was a great patient this time as well and had a good time chatting up all the nurses, doctors and techs.  Dennis, our favorite echo tech was telling the new person whom he was training, how far Jasiu has come from his screaming crying sleeping echos and it really made me greatful that we have such great care here at Advocate.

We are all clear to go to Poland this summer cardiac wise, emotionally though I'm pretty nervous. As most readers know, Jasiu has the "best" luck of getting into trouble, so hopefully we have an uneventful trip.  We will be almost 2 hours away from any hospital equipped to handle HLHSers as far as I'm aware.  I did however meet our new neighbors and her sister lives in Poland not to far from where we are visiting and has a 5 year old HLHS'er post Fontan as well. Makes me feel slightly better.

John is also registered for preschool in our district for 5 days a week and I was working on starting a 504 plan for him just in case, and seems to be some hurdles we need to cross, mainly that we have to wait till beginning of school year to get anything started and I would like him to be in the AM class since he tends to tire much quicker. As a result I think the AM class would suit him better and he would have best experience coming fresh from a well rested night instead of tired from morning play, especially since he still likes to take a nap in the afternoon from time to time.   Hopefully everything works out for us when we get the process started.  Emily and Jasiu unfortunately will not be in the same school this year since she is moving to middle school 2nd -5th grade.  Jasiu will be in the school Emily just graduated from !

Finally, I want to thank everyone who joined our Team Jasiu for our annual Walking/Running for Hope on June 7th .  It was a nice start with a very rainy wet ending.  I haven't seen Jasiu's lips so purple from the cold in A LONG time as I did on that day. Despite the cold weather we had a great turn out and everyone had fun (minus the rain part).  We raised a lot of money for the hospital and the Ronald McDonald house which all stays local to help this great hospital.  I also want to thank my good friend from high school Joanna, who helped me design our very first TEAM JASIU t-shirts.  She did an awesome job and the print came out exactly how we planned on the t-shirts.  THANK YOU !

That is all the updates I have for now, let's have a great summer and hopefully uneventful health/cardiac wise.