The Winter Bubble - Living with Spinal Muscular Atrophy

We have been living in our "Winter Bubble" since Christmas and it seems likes its been forever! Lizzy and I were in a discussion just the other day and we both decided we need to escape,  soon!! Thank goodness for the internet! That is our only link to the out-side world it seems. Elizabeth is doing fantastic. You can barely see her scar and is gaining weight again.

I have got a lot of cleaning done and plan on getting carpets shampooed this weekend.
Being organized is some thing that makes my life so much easier!!

Paul and Christen had been sick for 3 weeks and coughing last 4 weeks. Lizzy got the sick before Christmas and she got me sick the week of Christmas as I said it my last post.  Her and I got over it a lot quicker than anyone else. I ran around trying to keep everything sanitized and finally convinced Paul he needed to let me change his bedding. Men are so stubborn sometimes!! 

Lizzy is doing well. Just trying to get her up in mornings have not been easy with the colder weather. She says" Nina.. please just let me just lay here and watch TV. " Then , in the tub"Nina just let me soak" She is too funny how she tries to get out doing stretches and treatments still and she is 9 1/4 years old now. She has been doing treatments and stretches since she was an infant and still hates them!!I just keep telling her as I do every day " I only do these treatments and stretches because I love you and I want you to be strong." 

Lizzy's home-bound teacher Becky had to quit due to a change in her husband's schedule. It was very sad to have to lose a person so close to her but.. we have to think positive. Things change and we have to adjust. Lizzy was upset over the holiday vacation about the change but.. I think she is going to be okay. We have talked about it and she knows its no ones fault. She met her new teacher last Monday. Lizzy says. "She is okay"  Hopefully, it will all work out well. Lizzy is a pretty smart kid so I am sure she will do fine. Becky was a special person for all she did for Lizzy.We will always have a special place in our hearts for her. She will be missed. 

I have decided the situation with the "disgruntled soon to be relative" is something I am done letting it bother me. I have come the conclusion "Life is too short to live with such emotional roller coasters" You like us or you do not. We are honest people and we stand up for what we think is right. Family and friends are very important to us  I do what I have to do to keep positive and just pray about it. I went through  a lot emotionally this past Spring /Summer with family things and I refuse to put myself through any more unnecessary drama. I am so DONE. I do not have the time of patience for such nonsense in my life.
I am trying to get myself in "exercise mode"  Its not easy to get self disciplined!


Lizzy does really well with dealing with things going on around her. She has an opinion or makes a joke about things that shock me to death. 

Paul is feeling better from the illness but he has lost weight again. He has been going to diabetic counselor for a few months now and  is still trying to get his sugar levels under control. Keep him in your prayers.

Lizzy had a play date with her cousin today Taylor. They did some crafts and have been getting along really well.

     

Hope you are staying well!!
Adding some great links to some ideas for around the house helpers http://www.onegoodthingbyjillee.com. Great ideas!! They work too!!

Just remember this!!

 Thank you to all the people in our lives.
"We believe in circles because we live with one!!"
www.our-sma-angels.com/elizabeth

New Year and New Beginnings- Living with Spinal Muscular Atrophy

The holidays are over for 2012. What a year it had been. We got through it and ready to take on another one.
We had deaths, births, illnesses, surgery and so many things go on this past year. Taking a look back I take a deep breath and think wow, Its  2013 where has the years gone?
Its sad another year has come to an end  Its exciting that we have a new year to maybe start over some things we tried to take care of.
I have to get busy and get my bows going again. I have been so busy with Lizzy I have not been able to do much as far as extra things like that.  I will get busy here soon as get some sewing done for my mom and bows started. With the flu map and how wide spread looks like we will be staying home even more than usual.
 Lizzy has been "high maintenance" since she turned 8. Its attention she seem to want a lot of .  She doesn't like to give me a break . She needs to be entertained because the words" I am bored" come frequently from her mouth these days. Her new power chair has been life changing the past few weeks. She is strong enough since her surgery to be in it 4-5+ hours a day and possibly more. She is like a different kid while in it. DR. H really made her quality of life so much better. Its so great to see her so controlling more of her life. "Sigh" Life seems so good just to watch her.
1/7/2013
We have all had that "Viral Bronchitis Crude".  I had it for two weeks. Took my ol time remedy of Cayenne Pepper, ginger, honey,water and organic cider vinegar for 4 days . It took my sore throat away helped me get the phlegm up . I went to the doc and I was put on Zpack. I could not get over the chest congestion. Felt like I had a Sumo wrestler was sitting on my chest. Christen has had it for over two weeks and Paul is on week two with dizziness and so very sick . He has been to the doctor twice and I am so worried about him  his stubborn grumpy self refuses to go back. I am afraid it turned into Pneumonia..... Lizzy was sick for two weeks also but we kept her illness from going to her chest but it did take two antibiotics to get her over it. I pray she does not get it back from Paul. He needs to get a shower, change his germ filled clothes and let me change his sheets. What makes men to darn stubborn? He makes me so mad!!!
Lizzy's BFF was life flighted to Madison with RSV. Please add her to your prayers!! Her name is Sophia Salus.
There is something I need to write about. I have a very strong bond with my family and want to spend the Christmas holiday with them at least one day. You never know who will not be here next Christmas.  Last Christmas we were all sick and could not have Christmas Eve and Christmas Day with the family. Then in June my step-father passed away. Who knew? You know you need to spend as much time as you can with family. We had plans this year as usual to have Christmas Eve together with my mom,our kids and grand kids at Dawn and Jeff's. Its not about the gifts its about spending family together. It was planned on Thanksgiving. Well, this year one of the "soon to be relatives" got down right hurtful right along with her parents plastering terrible things all across face book that were untrue and really caused a lot of issues from being so childish and rude. The things that were said were so terrible and untrue. It was like middle school drama and uncalled for. You know..... I am just done trying with her period. I have enough going on and my life and you can only try so much. If she does not want to be a part of our family there is nothing we can do about it. I pray about it often . I have given it to God. Just remember family is so important but if an outsider comes in and causes so much drama you have to try to get it worked out if you can. Sometimes its so impossible you just need to let it go. You did everything you could to make things right and they still will not budge then is that is all you can do.
On a good note we are still here. Life is never dull with Lizzy that is a sure thing. She just told me this morning" she thinks she needs a bra." I was shocked yes but she is getting older!! But...... a bra?  She is nine!! LOL  Never dull with her,  as I said.
Thank you to my dear friends that helped us again this year get through the year. I can never thank you enough for your kindness and caring!! I thank my mother in law for her generous Christmas gift that helped pay to get the van fixed. Its broke down the Sunday before Christmas and needed a new fuel pump. I think prayers and believing in miracles is what get us through!!
I will close wishing every one a Happy Healthy New Year!!
"We believe in miracles because we live with one!!"
Keep us in your prayers!!
www.our-sma-angels.com/elizabeth