I have converted from our https://www.carepages.com/carepages/LeillaGrover to an actual blog to update my friends and family about the "happenings" of our very active lives. I created this blog (sigh) right after my sweet daughter was born to share pictures and memories of our two children. However six weeks after she was born we honestly let if fall to the waste side and had to start a carepage. We will still use carepages when major things occur like surgeries and procedures but for now I will try to have this be our internet home.
Jumping right in....
Caden had his acting debut at his preschool as Joseph in their Christmas play (pics still to come .) He was so adorable. He had no stage fright and stood up their like such a mature four year old :) Leilla of course was cheering in the audience so proud of her big brother.I'll post pics once I get them. Caden also has been keeping busy with Judo class once a week and preschool three times a week. He is such a joy and a big helper with little sister.
We had no real events with the Leilla girl all summer and into the fall, but here comes the winter and this is always a hard time for us. It started with a couple illnesses to which she lost some weight. For her every ounce/lb is Very important and it is taking a long time for her to regain where she once was. To add to that she is not getting the Synagist (RSV shot ) this year due to the amazing budget cuts of California. She should be getting it due to her conditions but they are cutting back to children under two this year. Annoying!!
She had a cardiology appointment a couple of weeks ago that left Scott and I confused as to whether it was good or bad. Her valves are leaking again which causes several other problems as consequences. Dr A is estimating that she will need to have the
Amplatzer device ( http://www.amplatzer.com/products/asd_devices/tabid/179/default.aspx) removed and then have the vsd closed in open heart surgery by this summer. These things take time to worsen (like a couple months ) so we are just waiting to see what will be the best way to approach this new chapter for her. In the back of our minds, we are not sure how we can bare getting close to losing her (again). I know I know..... that is worse case but..... this time she is much older and we actually have to explain things to her and watch her in fear.
Onto the next, she was diagnosed with Blounts Disease and has finally received her leg braces, called KAFO's (Knee, Ankle, Foot Orthotics.) These are HIDEOUS, but necessary. They don't let her bend her knee and therefore pose several problems. I tried to see if she could just sleep in them but they are only useful if they are weight bearing. Sooo, we are beginning to ease her into wearing them a couple of hours a day eventually getting up to all day. It breaks my heart to see her struggle like this but do you think it bothers her? Not little Leilla she just smiles and gives it all she has like, what's the big deal? This will hopefully avoid surgery in the next year. We are praying this will amount to one less surgery and better walking and less falling.
I had a couple genius as I would like to call them ways of trying to get her to wear them. Today we watched Yo Gabba Gabba as we do everyday but had her wear her braces. The show has lots of dancing and singing so she always like to stand and mimic what they are doing on tv. She actually watched the show began to walk and move a little around the room which is way more than she would do last week. The braces aren't effective unless they are weight bearing so just sitting with them isnt doing any good.
.
Scott's still busy as ever finishing his PHD . He is a clerk at the Paton State Hospital here in So. California. He is really enjoying being challenged by the this field of forensic psychology. (he is 1/2 done with his fourth year with two more to go , dissertation and internship )We are so proud of all that he does and sacrifices for our family. He was here this morning to support Leilla as we begin this new well...chapter in our lives.
As I come to end, thanks for checking in on us! We can never have enough encouragement, prayers, and love. I hope to update weekly,
Much love, Jaimie G
