Lizzy brushing her moms hair.avi

Sickness, blizzard and facebook works better than calling 911 - Living with Spinal Muscular Atrophy Type 1

 Jan.23
First thing I want to ask is to PLEASE add Lizzy to your prayers. Not sure what is up but she has been asking for extra bipap, was complaining of stomach issues and just not herself. Her O2 is great, heart-rate has been normal been doing some extra treatments but she seems to have a hard time shaking what ever is going on. I thought she was doing fine then again tonight and last night she insisted to be put on bipap around 6pm.
Wish, I knew what was this is.
Now,OMG this last week has been crazy. My mom was admitted to the hospital again last Sunday. My step father called me around 10:30 am last Sunday. He said "To have me or Christen to come right over as mom needed us to help her have a bath because she was having a heart attack and wanted a bath before we took her to the ER. " What?? She wants a bath while having a heartache? You say what?  I don't not think so.I called 911 immediately and had to get myself dressed and out the door.  Hooded sweat shirt, blue jeans and leopard slippers. Paul and I were out the door and at mom's in about 6 mins. Mom had a EKG and it showed she has stress on her heart. Oh my......back to Bloomington to the hospital. We were at the ER for approx 5 1/2 hours . I had to go get a nurse about 5 times and demand she have something for pain. She was in intense pain . It was terrible to watch her suffer they way she was. Finally, they gave her nitro . That did not stop the pain in her chest so I went out and got the reception people to get the nurse yet again after a hour or so wait again. Finally, they gave her morphine, That did the trick.
I was at the hospital Sunday, Monday and Tuesday with her. This time she was in a unit a step down from ICU and had a very bad hospital day. The nurses were not the most nicest and in fact were RUDE. To make a long story short she was released on Thursday. After, she was back to Pontiac she had to go to Wal-mart grabbed the portable wheel chair and she was off. Paul and Dawn had to find her. She was shopping!! It took them almost 2 hours to finally get her out of there. Go grandma!!
The van broke down on Tuesday. The heater fan quit working. Below 0 wind chill factor and the van goes out. We did not have the van until Saturday.
Jan.28,2011
I am sorry I still have not finished my post. Lizzy has been sick all week . She has been extra bipap until yesterday. She said her tummy felt full. No higher heart rate, No lower o2, no residue yet she seemed to be in pain. After trying everything I knew and picking the brains of my close friends. I tried fresh lemon( squeezed a couple drops down her g-tube) and ginger compresses she is back to herself. I am just glad she is better.
Feb 3 ,2011
Okay finally I am going to finish this.
We had a blizzard this week. My daughter Dana was stuck in a ditch that no one could get to her for over 4 hours. 911 said they made no promises.  She walked in the blizzard to the nearest farm house. A friend read on facebook that Dawn had posted prayers to keep her safe. The friend Lacey sent two guy friends out to get  Dana on snow mobiles. As I always say " We believe in miracles!" facebook worked better than 911!!

Suggestion: When your child's tummy hurts try taking a bowl of water add 1/2 tsp ginger 1c water (The spice) mix well put in microwave approx 25 seconds . Then put a wash rag in the water squeeze out excess water and make sure its warm but comfortable as a compress on the tummy. Sooths the tummy.

Happy 14th birthday to Madison Reed tomorrow!! Have a wonderful day princess!!

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

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