Questions that surprise you - Living with Spinal Muscular Atrophy

"Nina, who is going to take care of me when I am older?" Those words today took me by surprise. Tears flooded my face and I just held her tight. My heart felt like it was going to break. I have tears flooding my face again right now thinking about the moment when Lizzy asked me this today. Wow.... I was not expecting this question from her out of the blue. I told her " I will take care of you as long as I can and then Mommy if I am not around" Then, talking to Christen about this tonight Elizabeth had asked Christen this morning the same thing but added "she wanted to have a brother or sister who would take care of her when we were too old to help her." How can a six year old think about such things? What makes their little minds work like this? Some one will always be in our family to take Elizabeth because we all love her dearly. I will care for her until the day I take my last breath in this world.

Lizzy helped her Dad put up some lights on her ramp. She asked this year if we could do that for her on "her ramp".  So, we asked Brandon to put them up and he did. As you see in the picture above she is overseeing the project to make sure it was done right.

Thanksgiving is over and Christmas season is in full swing. Lizzy begged for snow the other night but only got a few sprinkles on Wed morning. She wants to ride in her sled so bad.
We had a great Thanksgiving with my Dad. We went out to eat with my him and my step mother Roz. He had us put back in a  corner with a huge table and we were alone basically. After, dinner since Kmart was across the street and not busy Lizzy got to run around Kmart having a blast. So, much to be thankful for.

Friday..... let me see uh.... I lost my mind for hours. I had three extra  grand-kids here. I love them  all but........ not all at once. I am still finding things they got into. Today, I am back to earth again. Paul hid out in the basement in his shop while they were here. Chicken.

We are having our family Thanksgiving tomorrow at Dawn's

Elizabeth  has been doing well now since WED and finally over that  bad sinus infection.

Thank you for all that asked about Lizzy doing her illness and added her to your prayers.

Many prayers for our friends Hannah and MJ who are very sick.

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

People in our Lives we are Thankful for - Living with Spinal Muscular Atrophy

Elizabeth is a bit better but still plugging. She is still on every three hour treatments.  Those treatments wee hours in the morning are kicking my hiney. I could not tell you when I have gotten 7 hours straight sleep.  I hate it when my girl is so sick. DR.Schroth put Elizabeth on another antibiotic on Saturday. She says Elizabeth has a bad sinus infection. Elizabeth did insist on sitting in her power chair today for an hour. She did well.

Elizabeth has been doing a lot of school work with her learning videos and is a sponge. She loves her new science Soft ware THINKIN SCIENCE. Very cool program. Teaches kids about animals and all sorts of things. She loves it. She had to call her mom today at Dawn's and tell her all about what she learned. Is that not precious?


The stove we got given to us works like charm. I cleaned it up and switched the oven racks and it works GREAT and looks great. Love it. I am still awed at how we got it so quick.  All we had to do was pick it up about 30 miles away and clean it.  It has more features than my other one did. Its not that old either. I am telling you somebody up there is watching out for us.

Paul did put the toilet back in the bathroom down stairs today since Brandon FINALLY finished the tile on Sunday but some how it was cracked. So, we have to buy a new toilet. Better to buy a new toilet than a new stove. I will take the good we have been having and not complain about the bad.

Paul  is going to take classes here soon for heating and air conditioning. Maybe he can get a job around here. Things might be turning around here before long. He has aged so much and his stress level has been very high. The only person he has patience with is Elizabeth. I am very worried about him.

Good things have been happening to us lately and special things in Lizzy's life too. Believing in miracles as well as blessings help get me through each day.

We have a new donor for Elizabeth for breast milk and we are so very excited. One of her previous donors( an awesome great lady) from last spring asked a friend to help Elizabeth. That itself is a miracle. Keeping her the amount she needs each day is something I always worry about. She does so well on the diet she is on I hate to cut her back on the breast milk.  Now, I will not have to!! That is such a relief!!  She sounds like an awesome lady. Lizzy's angels are working hard lately watching over her.

Thank you for all of you that care about Elizabeth. Elizabeth is such a special child. I will say it again to have her in my life is a gift. You need know her if you don't.  She is an amazing child. She is so wise for her young years. We have several conversations daily about all sorts of topics.

Keep Lizzy as well as the other sick kiddos out there in your prayers.

We have a lot to be thankful for. The people that have come into our lives are so very special to us. I am thankful for all you that are so dear to us. You are amazing people and each one of you are in prayers.


"We believe in miracles because we live with one"

www.our-sma-angels.com/elizabeth

Divine Intervention- Spinal Muscular Atrophy

Wow, today is Friday. I didn't not even know what day it was this morning. Isn't that funny? My world seems to stop when Lizzy is sick. Around the clock treatments and worrying about her consume my inner- being.  I think my age is kicking in because I have needed help in the wee hours of Thursday morning to get a huge plug out of Lizzy and had to wake Christen up to help me. I had just  got a treatment done and Lizzy had plugged. I was so exhausted I needed help because I was not getting it out on my own.
I used be able to stay up for days with out sleep. Not any more. Elizabeth has no fever only junk in her nose and trunk now


To add to my already stressful week my stove decided to run the broiler  on its own when its off and even when it just plugged in. Its runs constantly. You can not shut it off. Scared the bejeepers out of all of us. Weirdest thing I ever did see.  How could  stove just run on its on when shut off. Its quit after it was unplugged. Its a smooth burner top stove and not that old. It probably shorted out.  I dont know I just want the thing gone before I try to use it and it causes a fire or something. So, I went online  late last night to see if I could find one cheap on Craig's list because we can not afford to get this fixed. No way  we can do this at this time in our life buy a new stove. Its too tight here money wise. Well, I put an ad on Craig's List  and this wonderful man emailed me back from about 30 miles a way that is going to GIVE  me a stove to get it that he bought 2 years ago and never did use it. He said its in his way in his garage.  It tis season of miracles. I truly believe in the power of prayer. Divine intervention. God works in mysterious ways. Its a stove that is very similar to mine and the same color as my fridge. My appliances have not been the same color since my fridge that cost me around $1200.00 brand new after 4 years quit working about 6 years ago.

The kindness of people hearts the past 6 years  just surprise me. Another thing happened recently that also makes me believe in the power of prayer and miracles. I think since caring for Elizabeth I have become so much more spiritual. I pray with Lizzy every night. I believe that Lizzy's angels that watch over her and God are actually looking out for us in our times of deep need. How else do things like this happen? Divine Intervention is what I believe it is. This man was so great to do this for us.

Many prayers for all our sick friends.

Keep Lizzy in your prayers

"Believe in the power of prayer"
"We believe in miracles because we live with one."
www.our-sma-angels.com/elizabeth

Illness update on Elizabeth - Spinal Muscular Atrophy

Not much change in the last 48 hours. Elizabeth did say her throat is not hurting so bad. Today she is VERY WHINY and having major hissy fits over nothing. No pleasing her today. She is miserable. Poor sweety. Typical sick six year old.


I have not been online too much this week. Treatments and home schooling is about all I am able to do. She still wants learn even though she is sick. She takes a lot of attention these days and being sick takes even more. I am not complaining believe me its just fact. I seem to be the only one around here with patience. Paul has helped with Lizzy so I can do dishes laundry etc. here and there

 She has had no fever and she is on antibiotic now.  It is a cold or sinus infection. Runny nose and sore throat. Her air movement is good but she has sinus drainage and its causing her to cough . She does cough on her on own sometimes but it is not productive enough to get the junk in the back of her throat out.
Keep her in your prayers.
 
MJ is also not feeling good and we are very worried about her. Lizzy said "MJ has been sick a long time cant they make her better? " She added she needed to see DR.Schroth. Well, I explained to her that MJ lives far away from DR.Schroth. We have had MJ is our prayers please add MJ to yours too.
 
Our friend Charlie has been sick, Sophia has been sick, Aaron has been sick, Madison has been sick and so has Hannah. Please add them all to your prayers.
 
I have added an email from Brenda MJ's caregiver:



From Brenda MJ's care-giver:




This is Brenda emailing from Nationwide Children's Hospital in Columbus, OH yet again. I am writing to get your help.



MJ was re-admitted to the hospital after 2 weeks at home after battling H1N1 at home, along with a lung infection (psuedomonas) and a GI virus. Right now, MJ is battling pneumonia, the psuedomonas, and an UTI. The doctors have decided to give MJ's belly a rest and she is now off GI food and getting food via her veins (TPN). MJ has been refluxing since then (we guess her belly really wants to eat or something, but it is clearly not happy.) She has aspirated some of the reflux as well - hence the pnemonia.



Anyway, MJ's doctor (Dr. Shell) issued MJ a challenge....to get 80 cards sent to her by tomorrow. Cards are printed out around 9am, so he issued MJ a challenge. Upon card delivery tomorrow, there should be 80 cards brought up. He does not believe that 80 people would send MJ a card. Lets show him how wide and big the world is. Please help and show Dr. Shell how many people MJ knows. Send it on to your friends too. Thanks.



1. Go here to create a card (http://www.nationwidechildrens.org/gd/applications/greetingcardpro/choosedesign.cfm)

2. Choose a card from the selection

3. On the next page, you have the option of using the default image, choosing from the ‘card’ gallery, or downloading a picture (one of your own or one from the internet)

4. The info you will need:

Patient’s first name (top line) - MJ

Patient’s full name - MJ Purk

Patient’s room number - T5103



NOTE: Any cards not printed tomorrow morning will be printed Wednesday, which will be great, too.



That’s it - and feel free to pass the info on!



If you prefer, real cards can be mailed to:

Nationwide Children's Main Campus

c/o MJ Purk, Room T5103

700 Children's Drive

Columbus, OH 43205
 
 
 
"We believe in miracles because we live with one"
www.our-sma-angels.com/elizabeth
 
 
Please watch a news story about our friend in Canada named Shira:
http://www.youtube.com/watch?v=8DVvfDm2Q_Y&feature=player_embedded

Illness Strikes - Spinal Muscular Atrophy Type 1

Lizzy woke up this morning with elevated heart rate, sore throat, running nose and some plugging. No fever. I have been doing treatments every 3 hours and just put her on her miracle food mixture of unfavored pedilite/ breast milk/tolerex.  The weather here can not make up its mind so I am not sure if that is the cause or what. We have been so careful washing our hands and keeping any one sick away. So, even living in the "bubble " is not always the answer. I have not left the house unless I am with her at her Myfascial Release appts. They totally disinfect everything before Lizzy goes in for treatment. 
Not sure what is going on. 
So, please add Lizzy to your prayers.

Jake is still in the hospital ,MJ is not doing so great, Charlie is not feeling well, Madison is sick and so is Hannah.  So, please say a few prayers for them also.

"We believe in miracles because we live with one"

 www.our-sma-angels.com/elizabeth

Visiting Memory Lane - Spinal Muscular Atrophy

Sorry, no updates for awhile. I have been very busy with Lizzy teaching her how to read and teaching about all sorts of  things. I am liking this "teaching thing" very much now once I  got things figured out on what she needs to learn and how to introduce her to things.


She is doing great with the Myofascial Release therapy. Elizabeth said its making her feel so much better. I am learning how to do this myself. I still have a lot more to learn.

Christmas ads are every were you look!!  They have been since the day after Halloween. Its a wonderful time of year but this year.... (sighing) it is coming too quick and Paul still has not found a job so it will be the roughest Christmas for us since 1978. That is the last time Paul had been with out work for a few months and had just started a new job at Interlake. We had just paid rent and utility bills. We just moved into a new house. I took every cent we had to buy Dana (Our only child at the time) a $5.00 doll on sale at Osco Drug in the mall. It hurt. It actually still hurts that was all we could buy her. I was pregnant with Dawn . Those feelings that pained my heart, made me sick to my stomach and gave me cold shivers come easily rushing back just thinking about this time in my life.  Not being able to buy your 3 years old daughter anything but a five dollar doll was hard.  It was a lot of years ago. I guess it should not upset me so much thinking about it now but it does. We had a roof over our heads, we were healthy and doing everything we could for our daughter.   I was so very young. I was 20.  Me..... 20 years old. I thought I knew it all. I felt like I had life by the balls. Picturing me as 20 in my head is hard to do now. If you could do it all over again what would you do? Anything different? I am sure we all would. I would not for a second take back my kids but I would of done a lot of things different. I guess we are who we are because of the things we lived and learned.
Thinking about my mom back then. Wow, she was working and the head of the Nurse's Aids at the nursing home and doing so well. She was so strong back then. She had stayed well for many years. Not long after that she had another break down. She had many mental break downs while I grew up and I spent a lot of time with my aunt and my Dad. I do not know what happened to her. Why was she like this? I know what we were told  but why how can an adult woman with children just lose it? She lost all concept of reality. My kids to this day worry about her when she says something off the wall.  I swore at a very young age I would NEVER be like her.... ever. I think that is why I can live through so much and still remain sane. Things may keep me awake at night thinking about them or I get stressed out but I have never lost touch with reality.  I am nothing like her and I am so glad.  I do love my Mom. I guess thinking of what went through as child also makes me who I am today.
Alrighty then.... I am done visiting memory lane.  Some memories that still hurt to think about them.



Elizabeth is doing pretty well. Her O2 at night has been 99-100% and her heart rate has been so much lower while she sleeps. She is growing up too darn fast. She is so darn cute and the stuff she says will shock you.

She listens to EVERY THING and does not forget anything!!

We are so sorry to hear of so many sick people . My sister Rita called today. She is a nurse at her local hospital Florida and she is so sick. Sounds like the H1N1. Jake is still in the hospital unless he went home today. We are in our Bubble still. I talked to a Mom I know in Florida yesterday their 13 year old with SMA Type is sick.


Many prayers to my sister Rita, Hannah Price, Jake Goodson, MJ and all those who are ill.



"We believe in miracles because we live with one"

www.our-sma-angels.com/elizabeth

A Long Week - Spinal Muscular Atrophy

Lizzy looks chunky in these pics but honest its her TLSO under her shirt!!

I am sitting here thinking about the week.  You think the sun could shine just a few more days a week. Its been cloudy all the time it seems.  I am really tired. Not sure why.  Maybe  from not much sunshine even though I am using 2000 IU of D-3 .  Its been a long week. I am just plain tuckered out.

Dawn found out she had Mono, Corbyn just got over Roseola, Caitlyn just got over H1N1 and Lizzy well....  she has been pretty good week after a scare on Monday night.  She was alarming and scared the bijeepers out of me. I was so afraid she was getting sick but to my surprise it was her bipap. I started using her back up bipap and all is well. She told me her bipap did not feel the same and she could not breathe as well. Changed it out and all is well.  I am so thankful she can tell me these things. The back up bipap had been fixed after it went out awhile back and we have not used it. It is working fine now. Thank goodness.

You know I keep asking myself why so many medical professionals "dis" the Amino Acid diet that many of the  SMA kids are on. I am not understanding this. Why are they not believers?  So, many kids that are using the diet correctly ( Double diluted ) with supplements seem to be doing so well. Why is it so hard to accept? Just the fact that the NIV Protocol for SMA and the Amino Acid diet have helped these kids get stronger and they are living longer should be proof enough.  I get so upset when I hear a medical professional has not given this diet a chance.

We still have not heard from Medflight about our canceled flight diet due to the H1 N1 National Emergency.  Hope we can fly in April. )Oh April..... Spring can not wait!! )

Elizabeth has been full of it all week. I am loving it. She is just a great kid with so much to say.
She is doing so well with the myfascial release. She seems to be moving a lot more. I am glad we made this decision to get her this therapy.


Many prayers for all the kids sick!!
Prayers for MJ, Karah, Stella, and Jacob.

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

Soaking up some Vitamin D - Spinal Muscular Atrophy

Just a real quick update on Elizabeth.
I took Lizzy out-side today to get some sun. Its been raining here a lot so we do not get out side much. It was warmer than it has been today and her and I needed to get outside.  She drove around the yard and on Becky's drive way, up and down the ramp many times then she spotted a Monarch butter fly. She was amazed and asked all sorts of questions about the butterfly so after we came in we learned all about butterflies.  She told her papa after our lesson and talking about butterflies on how they are caterpillars, they eat a lot then..... they build a house called a cocoon, then they take a long  nap and wake up and become beautiful butterflies. She listened well.

We have been very careful not taking Lizzy any where in public even though she did have her H1N1 shot. She gets her booster in for few weeks. I still am worried about her getting the virus.
Christen and Brandon went to give a presentation at the Bloomington Fire Dept for the MDA tonight. The fire dept raised around$ 8,000 all together for the MDA.   Good job!! Brandon and Christen talked about what the MDA does and what the MDA has done for Elizabeth.
Lizzy and I stayed home . We did school work most afternoon except when we went out-side . She soaks up everything up so well but teaching her to read has been a challenge. She can so stubborn and very selective  on what she wants to learn.

Caitlyn is getting better and Corbyn is getting better also. He has Roseola. He still has the rash but his fever is gone.

Many prayers for our friend Jacob that has H1N1. He is in the hospital intubated in N.C. He is also has Type 1 SMA like Lizzy.We see him at Stanford and  we spend time together at CCK in Kentucky. We are very worried about the little guy. Get better quick Jake.

Many prayers for all the sick kids!!

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