Getting that holiday feeling - Living with Spinal Muscular Atrophy

Lizzy and I have been obsessed with the Hallmark channel since last weekend. We have been watching Christmas movies on there.  Already! I think watching them makes me believe in miracles that much more.
We love that warm fuzzy feeling the holidays give you.

Lizzy is on some extra bipap tonight. Not sure if its her teeth or what. Her molars are coming in and are so swelled!! She is NOT sick( I hope any way). She just needed a bipap break.

We had a very eventful day. Lizzy had Speech at the hospital . We were all in the van and was rear ended by another car. Yeah, sitting at a stop sign waiting for traffic to clear and  negligence of the driver that hit us to follow traffic safety laws and pay attention,  the damage to the van is over$ 1500.00 . Lizzy was laying on the seat snuggly in her  EZ on seat belt surrounded by pillows and said she is fine.  Christen's and my necks hurt and we both had headaches but took some Motrin and so far we are fine now.Corbyn was unaffected. He was snuggly in his car seat. My head flung forward and Christen's must of also. I guess we will see tomorrow how we feel.  Grrrrr I am just so mad at that woman for being so careless. Christen went to our insurance guys office and then had to get an estimate. They are not sure if the frame is sprung or not. The bumper is ready to fall off!! What else is going to happen to us? But....Just like everything else we will get through this.

Paul went and saw the doctor last Tuesday and  he recommended he files for disability immediately. He injury from July has disabled him and to add to the news they are pulling his CDL licence( Big truck) because he has not maintained his blood sugars  for 3 years. for his diabetes.  He had a really bad low sugar a year ago . He was quite devastated by the news but.... we will  get this also.

Sometimes, I think I should not post because its not a lot of good news and seems like something is always  going on but, I feel if I write about it maybe it will get better. Sometimes you have to forget the bad, appreciate what you have and look forward to what is coming next. I can not give up and I have to keep trying to stay positive. Just look at Lizzy and how happy she is. How can I not stay positive with her around. She still says " She loves her life!"


Good thing is Lizzy is doing well and loving school.
Prayers for our friend Chase he is on the hospital.Also,  for our friend Sophia to heal well from her growth rod surgery.

Thank you to my friends for being in our lives!!
Happy( Soon Coming) Holiday Season!!


"We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth
Families !! Please!! if you have a child with SMA please visit your local fire dept and ambulance services. You need to introduce them to your child you and write daily resp protocol for healthy times and acute illness times. Let them know who you are and all about how your care for your child  with SMA . You need all this in place in case of an emergency situation and need their services. Make a scan disc of all vital info and carry it with you at all times and update it. Get acquainted with you community . No matter how old your child is 6months to adult you NEED to do this.!! You can NOT always do this at home. I also suggest having supplemental O2 at home. Please listen to me. This info can save your child's life. You can NOT always "just do it at home". Invite them to your home if your can not get out to meet with them

Some Great News for Lizzy and we are just trying to get by- Living with Spinal Muscular Atrophy

Its been a crazy last few weeks. Besides, 3:30am phone calls from my mother complaining about her nurse's aids,  appointments for Lizzy and Paul was  FINALLY released from the doctor and trying hard to get a job. So, I am home alone with Lizzy a lot and trying to even get a shower is huge chore. Sigh..... Got to love her.She keeps me hopping and focused.
As, of Dec 2nd she will be in swim therapy every other Friday with PT and OT will do land on the other Friday. So, once a week she gets PT, OT , speech and as of now Myofasical release. These things she has needed . I do what I can with Myofasical release and stretch her every day but since she quit swim therapy I have noticed that she will  NOT sit in her power chair like she was. She seems stronger some days and others what little muscle she has seems tight. I guess you can say she is "High Maintenance" LOL She is worth every minute of every day I spend with her. She is too funny. They other day I asked her " if she needed her nose cleaned out and she said Yeah " I think there is a Bear up there!" I laughed and said, " Oh really!!" I cleaned it out and  then she said "There was bear up there that ate a rabbit and then the bear pooped all over" Where did that come from!! She has such a cute personality. Ewwwwww Gross! So funny!! She looks forward to her teacher Becky when she comes that she watches out the door until she sees her walk of the ramp. I have been hearing her tell stories to her and just laugh. She is something!  She is still shy  when she meets somebody new. Then,once she learns to trust you she until you get to know her she talks and talks and talks!! She makes life with living. She makes dealing with the stress and hurdles I have to jump daily a lot easier to get through.

Not sure of the future for the four of us Paul, Christen , Elizabeth and I in this terrible situation we are in financially but I know I have to take care of this family. Might have to sell our house, I might have to take on a part time night job  but I know I have done everything to keep what we have. I have learned to live with in our means but recently its looking really scary. The savings that we have struggled to keep is gone.The bills have been maintained until this month. Its been extremely hard since July.  Next month looks bleak,  but.... I believe God will get us through this. My friends are the best ever I have had and they have some powerful prayers. I think the Christmas season will be the worst ever to get through but.... we will no matter what sacrifices we have to make but we will get through it!!

I need to be making Christmas bows and selling them because Lizzy's account has been used for her Myofasical and some medical supplies that her insurance does not pay for has been dwindling down too.I guess the Roller Derby Girls heard about Lizzy and offered to help with a benefit. Is that not cool or what?  Lets hope it follows through!!
Paul figured out what was wrong with van and it running again!! YEY!!It was a broken spark plug!!After all the "Drama" that caused besides the money that was paid to fix it. Oh my... Its  BEEN A crazy last few weeks.LOL I can chuckle now.

Prayers for Sophia D, Nick ,Emma, Jerika, Stella and MJ for fast recovery. Keep us in your prayers to stay healthy and to be able to get through the fall and winter.
Thank you to all of you that are in our lives. Love you all
I know I am repeating myself here but:
Families !! Please!! if you have a child with SMA please visit your local fire dept and ambulance services. You need to introduce them to your child you and write daily resp protocol for healthy times and acute illness times. Let them know who you are and all about how your care for your child  with SMA . You need all this in place in case of an emergency situation and need their services. Make a scan disc of all vital info and carry it with you at all times and update it. Get acquainted with you community . No matter how old your child is 6months to adult you NEED to do this.!! You can NOT always do this at home. I also suggest having supplemental O2 at home. Please listen to me. This info can save your child's life. You can NOT always "just do it at home". Invite them to your home if your can not get out to meet with them
"We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth

Power of love, friends and prayers - Living with Spinal Muscular Atrophy Type 1

Love this picture of Lizzy!! Its from a few years back.

Lizzy and I have been so worried about a little friend of ours named Stella. She had spinal fusion today. As, far as we can tell everything went well. Oh my gosh what a relief. Thank you God for getting her through this. When I read the words that "She is done and they are waiting to see her" What a ....... Relief !" Lizzy and I both took a deep breath at the same time when we heard  that. We love you Stella!! Send healing prayers Stella's way!

Here is a picture of her with Lizzy this past August. Lizzy kept running up and down the hall waiting for her when we were at Madison. http://www.caringbridge.org/visit/stellaturnbullturnbull

I was getting very depressed thinking about our situation and still nothing has changed much. Paul has applications in all over and we" KEEP "hoping for a break here of that call asking Paul to come in for an interview. He had a job the week after his accident in July and could not go because of his injuries and he had to have surgery.  I have not been able to even go look for a job because the van is not working. Christen is getting back and forth to watch Corbyn with Dawn's car but, that can not go on forever.  I can not keep thinking about these things constantly. I have to just think about doing what I am able to do and not try to fix everything. I always try to fix everything and there has been times where I have figured things out but have to realize I am only human.
I got Lizzy's blood test back this week( from August visit at Madison) and I was excited that even though she was slightly low in (2) aminos her blood test was great. Her PH balance was where it should be. Her vit D levels and carnitine were perfect . It was over all a great blood test and I upped her branch chain a bit more because she growing. Looking over the pages I was excited. I felt pretty good about how I do her diet and how I make sure she gets what she needs. She was off her feeding for longer than normal because we were waiting to get her blood work done so that itself maybe me feel even better. The miracle of human breast milk. That is one thing that I know has helped her so much besides the Tolerex and her supplements!! She will be on donor milk forever!
I had to realize I am doing every thing I can do and only what I am capable of doing. I have learned to love unconditionally no matter what. Lizzy taught me that. Love is a powerful force as is Divine intervention. Lizzy and I say our prayers and know God is watching over us. I believe in miracles and I believe in the power of prayers. I felt so many prayers when Lizzy was in the hospital earlier this year. Its like could hear all the friends praying for her when she had RSV.
Lizzy  just got a stander from another family that works so much better for her. It came from Sydney a little girl Lizzy's age that earned her wings. Lizzy's stander is being donated to the school as their funding has also been cut and many kids can benefit from using hers.
I am going to concentrate on Lizzy, making my hair bows and continue to pray. I am tired at thinking as myself , as a "Pity Party" Its ridiculous to feel this way. Life is too short !!
 I have a quote  I found from Tiny Buddha:
"I believe that the universe always provides us with clues, helpers, prompts, kicks in the butts, hints at solutions to problems—whatever we need to accomplish what we need to accomplish, or to learn something, or to move forward in some way, and so on. All we need to do is be open to hearing/seeing/receiving those messages."



Families !! Please!! if you have a child with SMA please visit your local fire dept and ambulance services. You need to introduce them to your child you and write daily resp protocol for healthy times and acute illness times. Let them know who you are and all about how your care for your child  with SMA . You need all this in place in case of an emergency situation and need their services. Make a scan disc of all vital info and carry it with you at all times and update it. Get acquainted with you community . No matter how old your child is 6months to adult you NEED to do this.!! You can NOT always do this at home. I also suggest having supplemental O2 at home. Please listen to me. This info can save your child's life. You can NOT always "just do it at home". Invite them to your home if your can not get out to meet with them


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

"When do we get a break? "Living with Spinal Muscular Atrophy Type 1

Its been a heck of a year. Thank goodness its about over. I have enough troubles this year to last many years.
Now,  to add to our situation the van in having issues again. I can not pay to have it fixed.  It will just have to sit. Things not be any worse right now. We do not know what the months ahead will bring.
Paul is not doing so hot but is looking for a job. The future looks very bleak. When do we get a break? Winter is coming and we do not know how we are going to make it. Sell our house and make nothing off of it even if it does sell? Then ,where do we go? What will happen to us?
I try to stay positive but with realizing I will now have to quit being Lizzy's caregiver and get a job is tearing me up inside. Christen has tried and can not get one locally and Paul's health  is not good right now
I pray every night and Thank God he has gotten us through ......I do not want to give up but what is next?
Lizzy is doing well and that is the only positive thing we have. She is the only thing that keeps me going.
Please, pray something good happens soon for us. We need a miracle!!
"We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth

Losing a friend, Birthday and Prayers- Living with Spinal Muscular Atrophy

Losing a child is the worst most horrible things in the whole world to me for any parent. Then,  to know a child,  that you loved in your heart and prayed for every night  then...... they just die... really effects you emotionally besides physically.  We have lost many children in to SMA. I hate this disease its steals the lives of children. Sweet innocent children. We lost a good friend's child last week. I,  seriously got weak in the knees and physically ill when I found out she had earned her angel wings. Her parents are some of my heros for their fight to save their daughter and to help children affected with the same disease as Lizzy.  They helped fund Stanford trial that Lizzy was apart of. We have been on this road together since the beginning. Just talked to her Mom right before she passed. We were planning on getting Lizzy and her getting on Skype together. The child's name Aleena Hope Miller. Beautiful Aleena left this earth October 6th. I am honored to have met her. http://www.aleenahope.com/
http://brookhaven.patch.com/articles/aleena-miller-7-dies-bravely-fought-severe-genetic-disorder
My heart is just broken. I need to celebrate her life not dwell on her passing. She was a  true miracle child that through her parents and all that met her inspired so many. Thank you , sweet Aleena for being in our lives even from afar. Lizzy had you in our prayers every night. Please, watch over your Mommy and Daddy. Send them signs from heaven that you are at peace.
(Okay, I am wiping the tears away for like the 100th time since last Friday) still hurts.

I am missing going to California these days. It was a needed break every time we went. We have not been there in over a year and since DR.Wang is no longer at Stanford . We do not go out there anymore. I miss the people, the weather and the welcomed break!! How I long to go back there!! Not in our future though or going too far from home. Lizzy has gown and we need a bigger van for all her things she has to have and for her to travel comfortably.  Our van has too many miles and too much needs fixed to be safe for a long trip. Maybe ,when things get better with the economy and Paul is able to work. we can get one. He is healing but still in a lot of pain.

 Lizzy had a wonderful party on October 1st. Every year we try to make her birthday special.

Her cake was all eatable!!
Elizabeth is doing pretty well. The occasional sinus infection but other than that she is fine. Growing so much. She needs a new TLSO, some adjustments on her power chair because of recent growth spurt. She is doing well with school work with her tutor. Can you believe it she is eight years old?? She got some surprise gifts in the mail!! Thank you!!

My daughter Dawn had surgery today on her back to remove a nodule. She went through getting her thyroid on both sides taken out a few years back because they found cancer. Now, a few months ago a new nodule appeared on her back. They say its not cancerous but sent the nodule off to be tested. Please send healing prayers her way.
Send prayers to Sophia D whom has not been feeling well and add MJ too, as she is in the hospital.

Thank you to all that are in our life."A faithful friend is the medicine of life." 


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

Count down to the big Birthday- Living with Spinal Muscular Atrophy Type 1

The sky has been gray last few days. Its been cooler at night. The leaves are turning to a brilliant gold color. Fall..... is upon us. It used to be my favorite time of year. Sweat shirt weather. Now,  sadly thinking to myself it means the Flu season is upon us.
Lizzy has been pretty well all summer. She had a sinus infection last week and last few days she has been really tired. I pray she is not getting sick.
Sept.26
Spoke too soon my sweet girl is not feeling well at all. She has been on bipap since Thursday night. Her teeth are so swollen where her permanent teeth are coming in.  No fever just pain. My poor sweet girl. It hurts me to see her like this. These are her permanent teeth. I have never remember this happening to my kids. I just feel like I could throw up I am so upset about her not feeling well. Its not her lungs but she thinks bipap makes her feel better.
Sept. 27
I have not had time to finish my updates. Lizzy is doing a lot better today! Thank the dear lord.
She will be eight years old on Thursday!! Eight years . Our princess will be eight years old.
Its been a learning experience,Lifes values have changed for me and I feel closer to divine interventions and at times feel I am being guided be divine intervention to make the right choices when it comes to Lizzy.
Its like all that important anymore is keeping Lizzy healthy, do everything I can to help their families, my family and those friends that I am close to. I used to be so more involved in other things in my life. I value things much more. I am a crazy recycler. I even recycle old buttons and make hair barrettes besides on my bows. Its like I want some of the past remembered in my future.

Thank you that all help us get where we are and helped us with get Lizzy to this huge milestone. The Big #8 birthday.
Keep Lizzy in your prayers!!

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

www.our-sma-angels.com/elizabeth

Where does time go and remembering - Living with Spinal Muscular Atrophy

9-12-2011

Good grief its almost the middle of September. Where has the time gone?

I think this summer was the hottest more stressful summer I ever been through... EVER!!  Now, its early fall and things have calmed down a bit but the summer has escaped from us very quickly. Lizzy was not out side a whole lot because it was so darn hot. My kitchen air conditioner died. Not, a good thing in this hot weather . I welcomed a few cool days but, unfortunately its back up to the high 80s here.When its hot I have a hard time too!!

My sister Rita  was home for the first time in 5 years. It was so very great to see her ! I got to share some of my stress with her.  She looks great. Me..... I have gained so much weight its pathetic. I have no time to exercise but  I have been thinking while Lizzy's teacher is here I might start a exercise routine  when she comes twice a week. I need  SELF DISCIPLINE!! Lizzy has a routine and  I do now NEED one too,  for me!! I have a bad habit of not sleeping and eating very late. Bad......... Wish things were better because I would join weight watchers in a heart beat if I could. I would feel so much better if I could  lose 20 pounds. I need to badly. Maybe soon I hope.
Lizzy has her first sinus infection of the season. She is doing very well today. I hate it when she is sick. Keep her in your prayers.

 Paul is healing well and in therapy. Mom is doing much better and her health is improving. They found a mass in her pancreas which we are waiting the results . I am hoping she is okay. She is FINALLY being medicated for her mental issues. Its going to be great to make she sure she is doing well. Maybe some peace now for all of us!! Love it when good things happening!!

My thoughts were pulled back to 9-11-01 yesterday and basically all week-end. I felt  the pain in my heart 10 years ago. I  felt at the time I  had  been personally violated and I know so many felt just like me even though I knew no one that had lost their lives that terrible day. How could one man of caused so much murder and suffering?The biggest mass murder in US history. I felt all those feelings all over but then I also felt some feeling of hope after seeing the memorial site of that tragic day . I felt a peace and a calming when seeing it on TV on Sunday.It felt like a healing to my heart.

Lizzy will be 8 years old on September 29th.. Can you believe it? My goodness. She is such a beautiful ,interesting, fun , intelligent,courageous, charismatic, sociable,talkative, sweet child. I love her so much and for being in my life. She has taught me many of life's lessons. She taught me to live each day . She has picked a tea party birthday theme. She had a tea party at the hospital a few times in Madison when she was there in April and is so much into that kind of thing.. She wants her friends to join her in her birthday tea party. We were suppose to go to Minnesota with our dear friends for Lizzy's birthday but because of health issues of my mother and my dear friend's mother it was a mutual decision to hold off until spring or next summer. It upset Lizzy not to go but she is old enough to understand. why this was not a good time. So, Christen has taken it upon herself to make up for not going to see our friends in Minnesota by having a huge party for her with all Lizzy's girl friends dressed up in their finest attire for her" tea party birthday."

So, much has been going on this summer. Never a dull moment. Last week we had a bad storm and lost internet access for 5 days and Elizabeth was so upset!! Thank goodness it was only the modem to our internet and easily replaced. too bad it was 5 days after I figured out was wrong for the phone company to come by double check what was wrong.
You know we have gotten through these bad times and we are stronger for it. Prayers and good friends have help us get through this. That is why we believe in miracles. Thank you again to my friends for helping us through this tough time in our lives!!
My quote for this past summer and all the out of the norm things that happened.
"All the waters in the ocean could never sink a ship unless its get inside, likewise all the pressure of life can never hurt you, unless you let it in."


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