Saturday, February 18, 2012

Lots of news and updates - Living with Spinal Muscular Atrophy


It has been awhile since I updated. Where do I start? Okay, Lizzy has been pretty healthy since the end December.( Knock on wood and throwing salt over my shoulder). We have not been too many places. Lizzy today mentioned to me, " Nina I have not been sick in a long time its because of our "bubble" , huh? " I laughed and said " Yeah and the huge red stops signs on our doors telling people to stay away if they are even slightly sick" I had to laugh at her. "Our anti sickness bubble". I go a little stir crazy but try to keep Lizzy and myself busy. I discovered Pinterest. (Thank you Andrea!) Saves my sanity!!  My father insists I do not have mental issues  because I am so strong minded!! LOL  Love it!! I can escape reality for a bit and dream among other things. I  started back to sewing again a little the last few weeks. I made Lizzy some new pillows. I have to work on Spring bows. I had so much Christmas and Valentine ribbon  I had from sales last year but did not get to make too many this year. Soon, as I get started making bows  Lizzy needs me to get her something. Like , every five minutes. LOL. She keeps me quite busy. My "me time" and to get caught up is late at night almost every night. I get house work done and get online and try to relax.

Paul was denied Social Security Disability as I stated in a previous blog post. He has been looking for work and previous place employment had his hopes up about rehiring him and then.....never called back or have they hired anyone else so.. that itself has us very puzzled Why is he having such a hard time?? His resume is well written and when they meet him they DO NOT CALL BACK!!  He had two hiring agencies call him from his resumes online . He went in for testing and intensive interviews and STILL he has not gotten hired. I am so worried about what is going to happen. Paul seems so depressed  and his self esteem has been shot in the hiney. We have learned to live with out much it is amazing. Paul , Christen and I do not by ourselves much except what we absolutely have to have. I was looking at my and Christen clothes the other day at how faded and worn they are. Its does not matter.We are healthy and get Lizzy what she needs. If I could of been this way 10 years ago I would be saved so much more. I think even if things change around I have changed so much that I would be just as I am. I live each day as its comes. I thank God every night for what he has gotten us through and thank him for the people I have in my life.Lizzy and I have a huge list of friends and family we pray for every night. We will get through this we always too but man... it been too long.

Lizzy is getting fit for TLSO and AFOS this next week so that will be our time out. She has a gift certificate she wants to spend so on the day we go afterwards since we will be in Peoria we will escape to the mall. It will be our first time shopping in a very long time. Even though its for Lizzy just watching her shopping is worth the time out. Lizzy is getting a new power chair soon so we will need a bigger van for all her stuff. That is going to be a hard one but we will figure it some way,I hope.

Now the news..... are you ready? My daughter Jessica is engaged and wants a fall wedding and ( Drum Rolls here) my grandson Reed Michael's fiance is pregnant.Ali is due in the third week in October. Last weekend was a weekend full of surprises! Being a great grandma at 53 is not all bad. Dana a grandmother at 36 is also shocking but she made me a young grandmother too. Reed is 20 and living with he fiance so we should not of been so shocked. Seeing the 5th generation is pretty neat. I will be glad I could be part of it.

More good news is that we will be attending the FSMA conference in Minnesota this year then spend time with some a great family for a fews days in June and some how will be going to Courageous Kids in Kentucky in Sept. Lizzy has been asking a million questions about both events. She needs to do these things this year.
We has to cancel our trip to Madison this next week because of very important appts here. Its still RSV season and its better safely home than sorry. We hear that have RSV up that way bad and influenza.
I am typing on Paul's old Pc I refurbished myself so.... I do not have too many pics on here.
Rachael turned sixteen yesterday and got a used red blazer ( SUV) from her parents. She attended Sweet Heart at the school tonight.... man..... I can  NOT believe she is sixteen...whoa..... time has sure flew.
Oh and Corbyn got a new puppy he named "Ruby" named from Max and Ruby. LOL.  Its for his 3rd birthday!!
Winter has not been winter this year but if Spring is right around the corner I will take it!!
Stay well and stay happy!!
Add Paul to your prayers to get a job!!


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