Emma Kissock – Emma’s Syndrome

Several people have told me that the donate button does not go directly to Emma’s account.  It goes to pay pal and then you have to cleck on send money and put in this e-mail account EmmaBenefit@stjohns-chaska.org.  Sorry for the confusion.  If you care send a check, you can send it to Emma Kissock Benefit, c/o St. John’s Lutheran Church (Attn:  Jean Rollins), 300 Fourth Street East, Chaska, MN   55318.  Sorry about this.  Let me know if there are more problems or if anyone needs more information.  Thanks, Carol

She is weighing in at 20 pounds now. The respiratory doctor said that Emma’s lungs were clear and they can start to feed Emma again. She has taken a sip or two of apple juice from a sippy cup. She also likes the baby snack crackers. She has been a very happy girl again. Hopefully we can get some solid food into Emma so that she will learn to sleep for a longer period of time. Hopefully things will continue to improve.
Love, Grandma Carol

John and Robin could use your help.  With Robin not working and taxes and winter coming on, they are in need of financial assistance.  I have given them what help I can, but they need more than I can give.  If you are able to donate financially to help them out, please click on the donate button on this web page and you will be linked to a pay pal account that has been set up through their church.  The church will then see that John and Robin get the funds to help pay their taxes, get new tires for the vehicles, and to help cover the heating costs for the coming winter.  They would never ask for help themselves, so I hope they will forgive me for asking for help for them.  If you are unable to donate, please just pray for them.  Thanks for listening to my plea.
Thanks.  Just a concerned mother/grandmother.
Love and prayers to all, Carol/Grandma Carol

On Friday, Robin went and picked up a “Stander” from the Easter Seals Goodwill.  They strap Emma into this machine in a laying position and then raise her to a standing position.  Emma doesn’t like the idea of her legs being straight.  If Emma won’t keep her legs straight, they may have to fit her for leg braces.  We bought Emma some high top hard soled shoes to help keep her feet from turning in.  She actually left them on all day yesterday and did not fight to have them off.  We are working with Emma on several exercises to help her move her legs into a straight position and to try to help develop the left leg.  She seems to move the right leg easier and faster than the left, but does use the left leg too.  Emma has not been eating much by mouth yet because they had to discontinue feeding by mouth with her cold.  She goes back to one doctor on Wednesday and another on Friday and we will see how she is doing then.  Hopefully we will be able to restart feeding by mouth again.  Emma knows what she wants and if she wants it, she will reach for it.  If she doesn’t, she ignores it.  She is also becoming more verbal.  She will sit and jabber away.  Daddy John and Emma get into giggling and laughing sessions.  Emma is very loud when she is playing with Daddy.  You can hear Emma all over the house when she starts playing with Daddy.  It is fun to watch.  Emma also gives Mommy and Daddy kisses good bye.  Of course, Emma will not sleep through the night yet, so Robin isn’t getting much sleep.  Big sister Michelle just loves to be with Emma and loves to play and hold Emma.  They even sit and watch movies together.  Michelle is a great help in caring for Emma. 
Love to all, Grandma Carol

Emma had a physical therapy appointment yesterday.  Emma’s phycial therapist is not ready to write off Emma not walking.  She said Emma is starting to make progress and that she will work with Emma to continue that progress.  She also gave Robin several exercises that Robin and do with Emma to help develop the muscles both in the legs and in the back.  Some to help her sit up which gives her balance control and strengthens the muscles in the back.  She also gave Emma exercises for the legs and feet.  The therapist said that it is not uncommon for babies that had hip dysplasia to be “noodle legs” when trying to stand or like to be in a frog leg position when they are laying.  This comes from being in a cast for so long and those muscles not working.  She said that Emma may never crawl, but that is ok.  The therapist is hoping to at least get Emma to be able to use her legs to stand and walk (even if it is with the aid of a walker or crutches).  Emma was a very happy girl yesterday and didn’t sleep much during the day.  Hopefully she slept well last night. 
Love to all, Grandma Carol

Emma had an appointment with the neurologist this morning.  He was pleased with what progress Emma has made, but told Robin that he didn’t feel that her leg muscles were developing like they should.  He said that if she doesn’t walk by the time she is 3, she will probably never walk.  Not exactly what we wanted to hear.  They are going to try and see if therapy will help, but he just wanted us to be prepared in case she never walks.  Another thing he said was that her head circumference isn’t growing as fast as it should.  Meaning her brain isn’t growing as it should.   So, just another hurdle to cross in “Emma’s Syndrome”.
Love to all, Grandma Carol