The Next Chapter in our lives - Living with SMA

Thinking about the events in our lives the last almost 10 years I could probably write a mini series. ( chuckle)
Boy, did that feel great to get those thoughts off my chest!! Lizzy and her mommy finally have gotten closer with out interruptions!! Its great to watch the bonding!

Oh a good note Lizzy is doing FANTASTIC!! Great doc appointments in Madison. DR. Schroth  says "Nothing surprises her. She is Just Lizzy"  LOL ! DR Halanski was so excited to see Lizzy. He says she is doing so well!!  
She is such a great kid. She is so full of life and such a joy to be around. She says things that crack you up constantly. She is in her power chair 6-8 hours a day. Moving so much more with her arms. Unbelievable that she seems so much stronger since her surgery.
Today, she has been a bit more handful than usual. We had a phone call this morning her Dad wanted to talk to her for the first time in a really long time at 6pm. She doesn't want to talk to him because all he does is "drill" her about things. She was upset. He did not call her thank goodness. "Sigh of relief"  Her Mom is home now and she is much better.
 We saw one of Lizzy's favorite people in Madison our friend Katie. Lizzy loves her girls too but the weather was really bad so did not get to see the girls :( .

We need Spring to be here soon!! . So we can get outside and actually walk!! Lizzy did go sledding at home last weekend. Loved it.

Starting a new chapter in our lives. Pray it goes so much more smoother!

Prayers for all the sick kids.

"We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth 

Winter Bubble, Sinus Infection and Flying to a Germ Free Island with Pixie Dust

Oh my goodness here it is  almost the middle of February and Lizzy has NOT left  the house since the first part of January. The CDC map says the flu is widespread STILL. Lizzy's teacher had strept last week and today thinks she has come down with stomach flu. UGH... So, glad we are NOT in public school. GERMS!! Lizzy said "We all need a Germ Free Island and fly there on Pixie Dust" I laughed. She is too funny. The imagination of kids. Love it!!

I ventured out last week and Paul and I did our taxes.  I went to a birthday party for Calib and Rachael yesterday. I felt like I had escaped! Lizzy stayed home with her mom since they do not have a ramp for her chair. She is in her chair every day and she feels she needs to take it with her every where. Love It!

Lizzy woke up about 5am needing suction today. Plugging, secretions galore, bloody nose and drainage. Yup, the dreaded SINUS INFECTION. UGH. Got her on antibiotic right away. She seems to be doing okay now besides the secretions and extra coughs. She is impatiently waiting for her Web-kinz Valentine Party that starts today at 4PM. Every 10 mins "Nina what time is it? " She is on treatments every 4 hours right now but if she needs to up them I will. I just hope she does not get any worse.

Lizzy's great grandma Hoffner passed away a week ago . Carolyn was a wonderful lady. She loved Lizzy and until she was not feeling well always made sure she checked on Lizzy. She helped Lizzy with a small benefit for our trips to California and Madison years back with the help from her friends. She had not been in touch much the past few years but, would send  Christen  or me a private message on facebook checking on Lizzy. She is the only family member on Lizzy's Dad's side that seemed to keep contact with us. Carolyn had went to holiday gatherings with our side several times. Very pleasant positive lady.  She was very honest in her opinions and I very much like that in people . She will be missed in our family.

Lizzy's mom Christen also had more things happen her this week. A good friend went in and got a cat scan and complications happened and she died at age 34.

Lizzy did the most amazing thing last Sunday during the Super bowl last week end she feed herself!!  The video above!!  We  were all STUNNED!! Wow! That girl never stops shocking us!!

Praying for a great year, Spring to hurry up getting here, all of our sick friends and Lizzy.
Please Keep Lizzy in your prayers!!
Please also forward her donation page to friends and family for a new van for Lizzy. She needs one really bad!!!
Changes are happening all around us.
"We believe in miracles because we live with one!"

www.our-sma-angels.com/elizabeth