Sewing, Juicing and a few of MY tips- Living with Spinal Muscular Atrophy

I have been so busy. I got a new sewing machine from my Dad and Stepmother for Christmas and I have been making pillows like crazy. I have NOT sewed since I was a teenager. It all come back though. Lizzy lays right there on the dining room table with me as I sew. She talks to me the whole time.

Lizzy is doing great. I have been juicing her organic spinach and Granny Smith apples and she actually is stronger than she has been in awhile. Still using donor breast milk  besides herTolerex cocktail. I make her diet as alkaline as I can.  

 We ventured out yesterday to Easter Seals and Hobby Lobby. I got some 90% off Christmas ornaments and some material that was on sale. I got to get busy making my bows and making pillows to raise money for our October 2011 visit to Stanford. 

I want to talk about helping get out mucus plugs. Lizzy has been a plugger since she was an infant. I have learned so much from her. She used to get them stuck in the top lobe of her lung. Getting an IPV machine helps keeps the plugs from being so frequent but I have learned to turn her upside down and cough her or at an angle, to use a saline neb treatment to loosen it up , suction the nose out and cough and cough and cough until you get it. She tells me what she needs. So, coming from a child that suffers with SMA that  must be what works for her.  These plugs can be very scaring sometimes and life threatening is some cases. 

I also want to talk about how you should always be stretching fingers, legs and doing mouth exercises to keep what muscles they do have working well. I still sit and hold Lizzy and stretch her fingers,legs and mouth while watching tv. Teeth Brushing is a MUST. I had a parent once tell me that they did not brush her son's teeth because he did not eat by mouth. They still need their mouths brushed 3 times a day and use toothettes in between.
Oh and I hope you are all using D3 helps so much in the winter to keep you healthy!

Okay these are my tips for today!! Just things I do to help Lizzy I wanted to share.

"We believe in miracles because we live with one!"

www.our-sma-angels.com/elizabeth

Living with Spinal Muscular Atrophy - Reminiscing on the Year and First Quick tip

It was December 23 I  just had gotten done with Lizzy's bath and I was holding her on the toilet and the phone ran. Twice, in a row. UGH.... so I see by the caller ID it was my mom.  Lizzy was not wanting to get off the pot. So, I missed the calls. I called back as soon as a could and no answer. There was no message  on the voice mail. Hmmm well they must of ventured off some where like Wal-mart. I continued to call several times and still  no answer. That was in the morning.  I figured they would call when they got back.Well, at around 3:00 pm I get a call  from St. Joes  ( hospital 30 miles away) and it was the social worker at the hospital telling me that my step father needed a ride home and my mom had had some heart problems and was admitted. I am like "Huh, excuse me.. what is going on?" I am home alone with Lizzy with no one here as most of the time. No car, no way to leave and a emergency.... No friends to call that live close, What to do? Oh my gosh waves of guilt hit me for not answering the phone and then complete worry fills my every emotion. I said . Okay, after a few seconds of pause...I was ready to think clearly. I said "My four daughters are all out in that area shopping today one of them will stop by and get him and see what is going on. My mother had suffered a heart attack . They transferred her  to a hospital 30 miles from her after the nurse that takes are of her wound on her leg called 911 because her heart rate was 154 and climbing. She had suffered a heart ache. My world has not been the same since Dec23rd.
The good news is that she is coming home tomorrow!! Thank you for all the prayers

2010 was a good year in all respects. A few enlightening experiences I encountered. A few things happened that were not things I would like to repeat. I learned also that Elizabeth is getting older in her thinking and has a opinion on almost everything.  Just love her so much. She is my heart as I have said many times.  All my grandkids I love so much but Lizzy lives with me and I care for her 24/7/ One of hardest things I guess was the that we heard the a little girl that lived not far away earned her wings. That one hurt bad and still does. I have kind of pulled away a bit from meeting new families online. I feel bad about that but I think it was a subconscious thing since that that little girl passed.  Also , my husband not finding work and his health getting worse has also not been good things.  He had a low sugar of 15 and we had to call  911 in the Spring. Then,  my mom having her heart attack that was also something that really hit me hard with no siblings close to help me with her. They live out of the country or out of the state. My sister Rita has been my sounding board these last few weeks over the phone.
We lived, loved and survived yet another year . We had some great trips with friends in 2010 and made some great bonds that will last forever.
We had a wonderful Christmas this year. Its was a good time even though I spent hours the 25th at the hospital with my mom with Dawn and Caitlyn.

My tip for parents:  I use Mary Kay lip mask on Lizzy's lips during her bath and use Mary Kay lip balm on Lizzy every day. Its gets the lip goobies off  from the bipap and the winter dryness from the cold. I do not sell Mary Kay it just works well.  I also put a few drops of baby oil gel in her bath water.

I will have many more to add . I will add a new tip on each post. I will add care info on the next post.


Have a Healthy Happy New Year!!

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

Living with Spinal Muscular Atrophy - Finding ways to help your child

I decided  that in 2011 I am going to focus on helping families find ways to care for their SMA type 1s babies and children. Besides taking (as usual) the best possible care of Elizabeth.  I want to add to my blog about the care that it takes to keep a child with SMA type 1 healthy.  These are my opinions only .

Finding a "Cure" would be a dream come true but in reality many babies and children are dying because families are unaware of ways to help their baby that were just diagnosed. That is what many organizations are doing funding,  research for a cure. We all want a cure but how about these kids that can not even get a bipap or parents are not told there are noninvasive ways to save your child, The letters I receive from parents, aunts and uncles hurt my heart knowing how these parents struggle to get what they need to help these babies/children survive. .We need to take care of the kids that are here and are living NOW!!. Many doctors nation wide do not think parents have what it takes to do the care that is needed on a daily basis. In fact, many parents and caregivers do have the" inner strength" that it takes to take care of these beautiful children. The doctors give up on many of these kids right after diagnosis. They do not research and do not know there are doctors out there like DR.Mary Schroth in Madison,WI at American Family Children's hospital. Many parents believe in their doctors and their opinions and do not research SMA. We are taught at a very early age to trust our doctors and not question them . These kids can live with proper respiratory care . That is the main thing right have diagnosis. A bipap, humidifier and pulse ox can help them get stronger.  Then,  to be proactive in their care. Not to give in and take the bipap off because the baby is crying. You have to remember you are saving their lives. Parents have to face also their child will need a g-tube very soon after diagnosis . A  type 1 starts losing their swallow very early. Many of us also incorporate many other therapies and a special diet in the daily routine. If you want to fight to save your child's life there are ways to do so.

So, word of warning here " I am out to help save as many babies and children as I can by giving the most vital info to help these kids stay healthy ". Stay tune in 2011.

"We believe in miracles because we live with one!"

www.our-sma-angels.com/elizabeth

Living with Spinal Muscular Atrophy - Loving the Season

Anticipation for the upcoming first school event Christmas party consumed Lizzy's ever thought the last few days.
Today, she went to the  Rotary Club's Christmas party at the Elks. The kids started coming in the room and Lizzy's eyes where huge as she could not believe she was actually taking part in this grand event where there was so many other kids. It was a party for "Special Kids" and they all were treated very special. The teachers all knew we "freak" around other kids and worry about her coming down with an illness. So, they did their part in keeping the other kids from hovering over her." Sigh of relief",  for Christen , Lizzy and I.
We sang some Christmas songs, ate Lizzy's "favorite lunch" Chicken tenders and french fries. Then, something quite magical happened there was a man in a red suit and his wife that made a "Grand" entrance and seated themselves down. The crowd all was so excited. The looks on the kid's faces were totally priceless. Each child's name was called and Santa gave them a gift on his lap. Lizzy included. Each child got a present they really wanted. I have to hand it to the Rotary Club they did a great job on the gifts. Not a sad look on a child's face and there was quite few kids there .Lizzy broke out in her "Red Blotches" because she was so excited.

This time if year is totally magical and full of a spiritual awareness and the season of love. Family and friends are so special that gives you a sense of inner peace. The newest snow left a sparkling blanket of seasonal magic to the whole neighborhood.
I have been baking up a storm . With the last winter blast we had this old drafty house flatten a batched of yeast dough  when I was making my coffee cakes. It was upsetting but that is typical for baking in the winter. I have a lot of baking to do as presents. With Paul's unemployment being cut off we need to save as much as we can this year. Not knowing how we are going to survive these upcoming months has consumed my waking thoughts these last few days. We just found out on WED that his unemployment extensions have run out. In the job world they call for phone interviews but that is as far as it goes. His diabetes has gotten worse also. He has very low sugar spells and we do not know what is going on. So,  he is disoriented and he turns gray. I pray we figure this out. He has a doctors appt with Lisa this next week the nurse practioner.   Please keep him in your prayers. Enough said about that. Its a time of the years we should be happy and not worry. I know easier said but I believe God will look out for us.
Prayers for Charlie. Charlie is sick!! Please add him to your prayer list!! He has never been sick like this at home before.
Many prayers for our friend Madison. Lizzy loves Madison and she has not been feeling well for a few months now. We love you Madison and have you in our prayers EVERY night. Our friend Kaitlyn in Canada has not been feeling well either for awhile so add her prayers also she has been in ours every night also.

Some of our good friends have made sure we will have a good Christmas this year and to have something like that to look forward makes you as" giddy" as a child. We have family too and that makes Christmas even more special. Lizzy is our Miracle and makes the season even more better, Corbyn makes it fun also. I am thankful for all my kids, grandkids , my siblings , parents , Mother inlaw and just everyone that in my life. I will miss my brother Rory this year as he will be in Kuwait this year and not in the states.

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

Snow Snow Snow!! Living with Spinal Muscular Atrophy

Lizzy is loving this snow!! She had a blast outside on Saturday. Until she went out in it she was asking all day to go out. She was concerned she did not match!! LOL Our Fashion conscious 7 year old.
She was yelling at her Mom saying" Faster Faster!". She was so excited. Then, when she came in she had been so excited and with the cold she was having some trouble talking. Extra coughs and she was perfectly fine.
She is so excited this year about Christmas she started singing Christmas carols shortly after Thanksgiving.

Lizzy has a teacher coming to the house twice a week now and is loving it. The school provided her with the clicker 5 program also today. She is so excited to have a teacher! All day before her teacher comes Lizzy is so hyper!!We really likes her teacher Becky. I actually have a baby monitor set up and I am in the next room. Shocked that I leave her side? I am. I did not think I could do that but I have. It was my decision .  So, far Lizzy lets me know if she has "bubbles". I never thought that day would come but it has.

Paul and my anniversary was yesterday. Thirty six years married to the same man. What is really sad is that he was gone all day helping Brandon do some things. I guess the older you get in the male mind sometimes its no big deal. I dropped a few tears here and there all day yesterday.  I was glad I didn't have to watch football but why was he not spending the day with me?  Too me it means a "Big deal". I have been through a lot with this man and I think celebrating is something we should of done. We used to take off and go shopping for 3 days and stay at a motel. I understand we do not have the money for that these days but to go some where would of been great. Its over with done. Time to go on to the new day. Thinking positive is something I try real hard at. Some days its harder than others. Is this instance in my life an "Eye Opener"? or is it just life as you grow old together? Hmmmm... That one will take some time to figure out. Yeah I know, "STAY POSITIVE" okay I will try

Its is bitter cold here right now!! Last year it was a cold here all winter. At least Lizzy got to go out at least once this year. I miss CA this time of year.

Elizabeth is doing quite well the older she gets. Her strength is quite remarkable.  I am so thankful she is doing so well. Patience is one thing she has none of though. Everything has to be right this second!! .

I love Christmas and that warm fuzzy feeling you get this time of year. You really are thankful for the friends and family you have.
Many Hugs and Happy Holidays!!

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

Living with Spinal Muscular Atrophy - I am Thankful for....

Thanksgiving is in a week. Making my list here of some top favorite things I am thankful for. I am thankful for my beautiful seven year old miracle granddaughter Elizabeth,my grandson Corbyn for making me laugh because he is so darn cute, my Caitlyn, my Reed Michael,my "mouthy"  Rachael ,my "brown eyed" Robert Allan. I am thankful  for my beautiful kids, my cabby wonderful husband , my family and my wonderful friends. Oh and cheese cake..... I love cheese cake.

Its been heck of  a day so I am updating. As usual on WED (as well Monday and Friday)  Lizzy and I am home alone. The phone starts ringing this morning and its my mother. She is getting up there in years and it seems today she was feeling really bad. She was emotional and crying non-stop. She was in so much pain with her legs. She says I just can not do it anymore. Talk about a huge splash of water in my face as I was bathing Lizzy. I am like okay mom calm down. What is going on? She tells me where she is hurting and how she can not stop crying , She wants me over there now to help her. What to do here? I can not help here.  I have Lizzy here alone, no one is in town today and I have no car. Not that I would travel even across town with Lizzy alone but I would. if I had to. My mind is thinking a mile a minute.... What to do  hmmmm How about some reverse ..... Psychology...  Using my college background for a change, Okay, Mom remember when I was a new mom and got all stressed out you would say" Go wash your face go soak in the tub bath you will feel so much better!!" I said.  it works liked a charm every time, Making her feel like a mom again was the answer..... Low and behold it worked!! 

I made some calls today and I think I found an agency to help mom a few days a week with some light cooking, vacuuming. taking her to doctors appts  etc. She agreed!! Oh my.... guilt has been lifted from my heart. Thank you God. I do all Lizzy's care and I do not have time to take care if my mom too. Not that I would not want to help I just can not at this time in my life. My other 4 siblings of my mothers children live out of state or out of the country so I am now making this decision. The company I found does FBI checks on all their employees and is bonded.  Sounds like just what we need!! My dear siblings " Bite my hiney" You ;left me here alone to deal with this I am doing as I see fit. If you don't like it get you hineys home and HELP. My plate is full thank you very much. Mom is not going to around forever and saying you can not afford to come back home to help is a crock. I love you guys but hey... you have not been here. 

Lizzy has some sinus drainage  but doing great. I still have her bipap back up rate slightly up to 26. Just to get her some extra support at night.  She is doing okay though. She is a great kid. 

My life changed the day she was diagnosed. I think God put her with me so we could make a difference. I love her spunk.  I lover her determination to succeed. I love her so much it hurts sometimes. She taught me all about life and its true meaning. 

Go hug someone today. Some one you care about to let them know you care. 

Call your Mother, or your Dad.  Just tell them YOU......care about who brought you into this world. 

" We believe in miracles because we live with one"

www.our-sma-angels.com/elizabeth 

Living with Spinal Muscular Atrophy - Why?

Lizzy lost 3 teeth in two days!! Two last night and one today. One more to go and we will have all the loose ones gone!!
It has turned colder here again.  Not even ready for it. Then, Thanksgiving not too far away and CHRISTMAS. Oh my where has the time gone?

I was on the phone the other day with the Mom that lost the little baby Grant a on Lizzy's birthday. How is it I feel her pain? How is it I feel connected to her?  Its tears my heart apart just thinking about what happened to this baby. To know we were so close yet so far away. I could of helped them so much. if I had known. I do not understand why this happened to them.

I never understand the why with SMA. Why is it that with this disease doctors in our area and many area across the globe do not want to deal with it?  Why are some doctors still refusing to treat SMA and giving parents the same diagnosis as we were given for Lizzy? Why are so many trying to stop the research in gene therapy? Is it the drug companies wanting more money? Is it that they do not want treatment? We all NEED to start paying close attention what is going on in The SMA World. What is so hard about getting these kids  the treatment they need to help their quality of living? I do not know if SMA will ever be cured but if US will not allow kids to get treatment here we will find some way to go out of the country to get it. 

Makes no sense to me why we having these doctors are not wanting to help these kids. Some SMA organizations are fighting against the gene therapy. Why, after we have come so far? These people need to look into their own cold black hearts and ask themselves why they would not want to help an infant or a child. Why are they being so cruel? Why is it so political? 

God help these people causing so much controversy over the most promising treatment.
Look in to a child eyes with SMA and tell them you do not want to help them. Tell them you do not want a cure.

I do not think we will be going to the FSMA conference this year. We just can not afford the cost to get there and all the registration fees. Sounds like it will be a grand affair. We have to look at the big picture. Our small van with all Lizzy's stuff is just not big enough to drive that far anymore. She has grown do much and her Dad and Grandfather also want to go this year.We got one adult registration fee waved but then you have 3 other adults and Lizzy we have to pay out of pocket for. Then the motel room. As much as we want so much to attend for Lizzy's sake I do not think we will be able to swing it based on our current income. We shall see. Lizzy's heart will be broken if we do not go but maybe we can do a compromise. There is always CCK  in the Spring or maybe just a families get together somewhere.

We just heard one of Lizzy closest friends Drew was in the hospital recently. Prayers to you Drew!! He is home now but still not feeling himself. Prayers to Larkin Bish as she is not doing well and in the hospital. I talked to Nana Barb and Gina Bish yesterday. Please add theses kids to your prayers. The power of prayer is so strong. You can feel the chain around the world filled prayers for these beautiful kids.

Another child with SMA earned her wings in Peoria. How more babies /kids will die before these doctors will listen to us?
R.I.P. Rebeckah Marie Courdt (March 5, 2007 – November 14, 2010

Fly high little princess!!  fly free of SMA!!
Prayers to the family of Rebeckah to be able to get though the days ahead.
Breaks my heart.


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