Common Sense (Spinal Muscular Atrophy Type 1)

Elizabeth got her seasonal flu shot finally on Wed at the Health dept. Got a call from the doctor's office telling me I could not pay for Elizabeth's shot because she gets medicaid. I was one furious grandma. They told us that the shots were available at the Health dept on Wed from 8am-5 pm .

Christen and I walk in the health department on Wed . Christen was carrying Elizabeth and at my DEMAND Elizabeth had mask on her face. Talk about everyone freaking out because Elizabeth had a mask on. So, we were asked by three different people( That work at the health dept) if Elizabeth was sick. No... we are just being careful so she does not get that way. As, we were sitting (Me holding Lizzy now)waiting to get Elizabeth's flu shot a child that just came out of the room (we were next in line to go in ) coughing like crazy.... My gosh..... Okay ,we are freaking out now.... Then, a family with Mom, Dad and two kids came in and the toddler boy had pajamas on at 3pm in the afternoon and you can just look at him and see he was sick. Glassy eyes, Flushed face......ugh... Okay, taking a deep breath at that point holding Elizabeth closer to my chest......Then.... the Mom says" can he get his flu shot?" "We took him to the ER and he has croup... and fever.... " At that point I was ready to take Lizzy and RUN out that door. Thinking to myself" Why are they making us come out here to get her shot? Knowing that it would be full and most of the time full of people with illnesses with out common sense." My gosh is this just bad dream or what ? Are people really this ignorant. Thank goodness at the moment when my face was turning beet red because I was furious we have a nurse say I can take you in my room. Then, after she saw the mask on Lizzy she says is she sick? Ohhh Lord help me here I am ready to just blow up..... Then we proceed to tell her about WHY Lizzy is has a mask on her face. Then.... ( oh gosh you will not believe this one) The nurse coughs..... yeah coughs and says" Oh I have a cold.... it your choice.  No you want me to give her the flu shot or I can get some one else". At that moment I am carrying Lizzy and backing towards the door. almost tripping over my shoe string. ... My face even redder I just want to run.... HELLO...... didn't you go to nursing school. You do not come to work with a bad cold at the health dept and administer shots..... (Okay ..... somebody wake me up this has to be a bad dream.) Christen and I say at the same time "Absolutely NOT !"

They put us back out in the waiting room with the kid with the fever with the croup and another child that was waiting for her siblings  that was coughing . At that very second I was feeling like I just wanted to SCREAM!! The door behind us opens and its a nurse that knew Lizzy when she was first diagnosed and says "Hi guys haven"t seen you in awhile. I haven't seen Elizabeth pics in the paper since the Spring. " come on in I will give Elizabeth her flu shot. She talked to us about Lizzy and sick kids out in the waiting room and led us out the back way. Thank you God for getting somebody with a heart and common sense.

Lizzy had bad secretions until today. I gave her extra fluids and pedilite but no other side effects.

The schools here are full of H1NI . The doc's office has masks and germx out side there main entrance and you have to use the Germ-x and the face mask if you have any of the symptoms like fever, cough, temp etc.
WE ARE basically living in a bubble right now. Lizzy and I can ride in the van we just can not talk to anyone or get out.

We were not going to get Elizabeth the H1N1 shot but found out from the nurse that did Elizabeth's flu shot that its the same base as the season flu shot with the dead H1N1 in it. Then, one of Elizabeth's program directors said the Nurse can come to the car and give Elizabeth her H1N1 shot at the Health Dept. soon as they are available in the shot form.  Thank goodness.

I had a lady from Chicago contacted me because she had heard about Elizabeth from one of our former donors through a web-site. She had some breast milk from not long after her twins were born she wanted Lizzy to have it because there was way too much for her twins that now weigh about 4 pounds. They were around 2 pounds when they were born. The sweet babies are still in the NICU . Yes!!  Lizzy needed a little boost. Thank goodness some great milk for Lizzy with all those extra antibodies from a mother of preemie twins. She had blood tests and she is very healthy. She said she would get more blood tests if we wanted her to. So, Christen, Lizzy and I went to Chicago today to go pick up the milk today. She lives down town . Lizzy and I sat in the van and Christen went  and got the frozen breast milk. They were painting the bathroom down stairs here today, laying tile and Paul asked us to leave. Her and Christen talked for while. I am glad they invented cell phones. I had to call and ask Christen of she forgot we were there. I can understand. They think the babies will be special needs babies or one of them. The docs are not sure yet. Bless their hearts. So, Christen was helping her with resources. Mom is already ready to do what it takes to get these babies home and get them what ever they need.

We got the confirmation for our flight to CA next month.... 7am in Chicago our flight leaves for CA. We will be awake all night the 8th because we have to drive 2 1/2 to Chicago..

We do not even know if Lizzy's Bipap will be able to be used on the flight. That is another story. Pray for us

Thank you for all of you that care about us. Many prayers for all the sick kids!!

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

www.our-sma-angels.com/elizabeth

Just Another Crazy Week (Spinal Muscular Atrophy)

Lizzy had her birthday party on last  Sunday. It was a beautiful but chilly day. Six.... The sound of her being 6 gives me a warm fuzzy feeling that warms me straight to my soul.
Elizabeth got lots of great gifts. One of her breast milk donors was there with her financee and her son.
Nice party with many guests. This next week I will write all thank yous out. So, many people remembered Lizzy on her special day. They made her feel very special.
This week has been kind of crazy.  Besides freezing my hiney off  this is the second week Christen has not been around much because she is watching Corbyn and picks Caitlyn up after school and I am trying to homeschool Lizzy and entertain her. We do it though . Lizzy and I get done want we need to get done.
Friday I woke up to hammering and all kinds of noises down stairs. Then, I heard cussing.... lots of it. Brandon had some extra tile and was going to tile the bathroom floor. Okay, This is a very small 1/2 bath. It maybe would take a day at the most with pulling the sink and the toliet out. Well..... The guy we bought the house from back in the 1990 we have found in our living here and fixing things he was notorious in tweaking short cuts and then hiding the mess ups he caused. Well, the bathroom was no different. Thankfully, no one has fell through sitting on the porcelain throne. The floor joist had been cut through!!  All these years living here and we had no clue. We have even redone the bathroom but not the floor. I had painted and wall papered. I had bought a pedistal sink about 4 years ago and they decided they were also going to put that in also while they were pulling up the old floor. Well, the pipes were also messed up..... oh my gosh . So, now my bathroom is totally torn up. They had to replace all the pipes and the walls etc while they were at it . The old owner had used one of the old french doors for the wall that is over the brick and oh my..... . Lizzy and I have been stuck upstairs for 3 days now while Paul and Brandon have been redoing the bathroom.  Hopefully, we can have it all together by Tuesday. 
I received a very special package yesterday from a person from Passion River Films that has read my blog. They sent me a very inspiring video called "39 pounds of Love". I have heard about this documentry about a man with Type 2 SMA and his struggles in his life.  I really wanted to see it. He also wanted to find his doctor that diagnosed him and said he would not live to be six years old . He lived to be 34 years and actually he lived until a few weeks ago. His mother and I have a lot of the same way of thinking. How can a doctor give you age you will die because you have a uncureable disease?  They are not GOD they are only humans. Ami wanted his doctor and many others  like him to know you can not play God and put an expiration date on a human beings life.  Ami doctor had said he would not live past 6 years old.. Lizzy was diagnosed just about the same way telling my daughter and Brandon Lizzy would lucky to be here a year let alone 2. She is SIX years old now. That is 3 times her life expectancy. Ami was from Israel and came to the states to find that doctor that diagnosed him. I cried a lot through the film....... If you have not watched it YOU NEED TO!!

Lizzy is doing well just bored this week and very bossy... got to love her spunk.

I have to say something that is bugging me. We keep calling the doc's office about getting Lizzy's flu shot well.... they keep telling us that the Medicaid's ped shots are not in yet. I asked today if I could pay out of pocket for a peds flu shot for Lizzy because we fly out Nov.9 and they said sure and its scheduled for WED this week. Is this like discriminatory  or what? What is the difference? Are the shots different for medicaid patients? I am confused besides this really ticked off about this one. Grrrrrrr

Many prayers for all the sick kids out there. 
Thank you all the great people out there that help fought to save their kids and grand kids. Its from inner strength and deep love.
Thank you to the many that have been  a part of our lives.
 We believe in miracles....because we live with one.
www.our-sma-angels.com/elizabeth
http://photographybyrhiannon.blogspot.com/2009_10_01_archive.html

Elizabeth turns 6 years old today (Spinal Muscular Atrophy)

                                      
Happy Birthday to Elizabeth Lee Hallam!!

Six years old. It is hard to believe Elizabeth has turned 6 years old today


She came into our life around 8pm Sept.29,2003. She was a beautiful baby. Shortly after birth the nurse had her on her shoulder I said something . Elizabeth lifted her head and turned her head towards the sound of my voice and I knew a special bound was created at that very moment. Little, did I know that was the first and last time she was able to lift her head.

This little girl changed our lives forever. Many things to deal with the first few year. Illnesses, hospital stays, doctors giving us no hope, lots of tears  and lots of praying . Finally things seemed to get better the older she got. I learned to know what she needed just by the look on her face.

Never had I ever wanted to fly on a plane let alone fly to CA.  We took Lizzy across the country to a clinical trial at Stanford and it was the start of things getting better.

I would talk to a parent or caregiver and hear something was working go see the family doc and he said "If it fits down that G-tube we will try it" Trial and error.  She was having issues digesting her formula in her g-tube so we tried  donor Breast milk with her formula and it worked!! It cured her reflux issues among other things and she started to thrive after that. Then, using pedilite with her formula when she was sick helped her so much also. Things just kept getting better.

I seemed to figure a lot out out after talking to other parents and caregivers,emailing doctors like DR.Kelley and talking to DR.Schroth and DR.Wang. I researched so much. Finding things that helped Lizzy and other kids like her consumed me. It actually consumed me until this  past summer. I took a break from researching and enjoyed living life with Lizzy. She is such a joy and I am honored to have her in my life. For a child to be happy all the time and be healthy that can not sit with out support, stand or walk makes her my hero. Makes you feel like you are doing something right.

I had to learn to figure out how to get Lizzy what she needed no matter if I had to ask for help. I was not that kind of person to let others send us things. I had to do what ever I could to get her what she needed. So, many fights with her DME also to deal with .

I barely left Lizzy's side. I still do not leave much but I do leave occasionally. I would be afraid to take a shower the first year because I was afraid she would die while I was taking a shower. No one can imagine until you live it. I went from having no kids at home and two jobs to no job and hovering over my grand-daughter like an old hen.Was it all worth it ? You betcha.
So, much more to our story in an article I submitted to the Jennifer Trust in the UK a few years back.
http://www.our-sma-angels.com/elizabeth/images/updates/files/Lizzy%20Story.jpg
http://www.our-sma-angels.com/elizabeth/images/updates/files/Lizzy%20story%20pge.jpg

I have met so many wonderful people since this journey began. I didn't not know so many great people existed. I am honored to have met so many.



She has been doing very well the last few years and I thank God every night for that. She is an amazing child and such a gift. She is determined some how some way to do anything she needs to do.

My advice to others if you have been handed a death sentence for your baby do not believe it until you have researched and talked to others that have the same thing. Grandparents if your kids will not fight for your grandchildren you do it if you have the strength and love it takes. I did and so glad I did.

Believe ...in miracles they do exist. We live with a miracle.

Lizzy has been ill since last week and the day after her immunizations but she is getting better. Lizzy has not been sick all summer. Not sure what is going on but she is improving. I think we learned a lesson.... No more immunizations.



Keep Lizzy in your prayers. Please pray for MJ too. She is in the hospital and very ill.

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

'Tis the season for illnesses (Spinal Muscular Atrophy)

I just got online for the first time in a few days.

Lizzy has been sick..... I am not sure what happened or what she has. Weirdest thing.  She got her some of her 4-6 yr immunizations on Tuesday. She has been fine up that point. I was very concerned about getting all those shots at once . I wanted to hold off and only do one series at a time but.... her Mom said she would be fine. I gave her some Motrin before she went . She did not even cry and she got two shots all together. MMR, Polio and DT. I expected a fever and she had a low grade temp the first night then next day she got BAD. She did also that night lose her third tooth that was so loose we thought it might fall out while she was sleeping so Paul pulled it. Oh my .....did she fight that.
Lizzy's lungs were filling up both sides..... her fever shot up to 102 and sore throat . She has been really sick. She even spent a few days on bipap. She has been on Zpak since Friday. I was up for 3 nights straight with no sleep. Friday, I felt like I been run over and Lizzy and I went to bed VERY early Friday night but I did a 2am treatment & 5am treatment


Lizzy is bit better but she has had some issues plugging and her nose is non stop stuffy. She has no fever today though.

Tuesday is her birthday and she has to be better!!

She has been not hardly any where the last 10 days so we are not sure what is going on. All summer we were gone and once we stay home she gets sick. No one sick has been around her. DR.Schroth thought maybe she picked up something at the doctors office when she got her shots. I dont know but this is weird. She said it was also hard on her to get her shots but to be this sick there is something else going on.

No more immunizations for Lizzy EVER!!! We are done unless there is an epidemic we will not get them for her again.
Add her to your prayers!!
"We believe in miracles because we live with one "
www.our-sma-angels.com/elizabeth

What is SMA? It is a Disease That Steals Children ( Spinal Muscular Atrophy Type 1)

What is SMA? It is a disease that steals children. I hate SMA .
I heard this morning that friends of ours beautiful daughter Olivia (3 1/2 years old) earned her wings today . She lost her battle to this terrible disease like many others before her. I just do not get why so many children have to die so young.
Like, my Elizabeth and her older sister Hannah she had Type 1 SMA. Every time, I hear of a child pass because of SMA my heart just hurts(like a sharp pain), shed tears and I feel like a piece of my heart has broken away . To know them on top of it makes the pain in my heart more intense. Her mother Stephanie is a pioneer in the Amino Acid diet for Type 1s and Mary Bodzo the pioneer for Type 2s. They have taught so many parents/caregivers (as well as myself) on the diet. These two women help save so many lives. They gave these kids a better quality of living just by figuring out a proper diet for them. Her Dad Tim is a Respiratory therapist has helped me on many occasion when Elizabeth was in respiratory distress at all hours of the night. They have taught me so much that has helped me help Lizzy and other parents.

Children with Type 1 are diagnosed usually before 6 months of age, more often before 3 months of age. They are not able to hold up their heads, roll over, crawl, sit up without support, or walk. All of their muscles are extremely weak, with the weakest muscles being the legs, upper arms, and neck. Their chest may appear concave, or very skinny at the top, with a big belly. Bell shaped. SMA affects all muscle systems as well including sucking, and swallowing, digesting food. A common cold can easily turn into pneumonia can take the lives of these children.
Statistics show that the average life expectancy of a child with SMA Type I is no longer than 2 years old. Many pass as infants before their 1st birthday.
Each child is affected so differently by SMA that they do not all follow the same progression.
Thank God for doctors like DR.Bach DR. Schroth that practice the NIV protocol(Noninvasive Ventilation) that has helped so many of these beautiful kids survive. With the help of the Internet Parents/ caregivers are now finding resources to help these kids survive longer.
Then..... you can do EVERY THING you can to save your child and one day they have a bad mucus plug, aspiration or illness and you lose them. There are no guarantees with SMA.

I hate SMA......

We need to have so much research done to help DEFEAT this terrible disease. Please help with SMA research. We have lost so many too many....

These are beautiful intelligent kids and they need our help to FIGHT this disease.
I need to go hug my "Lizzy" right now.

Please say prayers for my friends the Price family to help them get through the days a head. To lose is child is so VERY hard. To lose a sibling is also so very hard.

Fly high little Olivia Fly free of SMA.

"We believe in miracles because we live with one"

www.our-sma-angels.com/elizabeth

For the love of Grand-children (Spinal Muscular Atrophy)

Seeing my grand kids I get so excited and so do they.
Every day I am with Lizzy and she decided its me she wants to do everything for her a long time ago. I can look at her know exactly by the look in her eyes what is going on when she is having issues.
I saw a few years ago how I was not so involved in my older Grand kids as I used to be because my focus was Elizabeth. So, I made sure I am involved with all of them. As crazy as it gets around here with them here its worth it . They are like my extended kids. I treat them like my own. Corbyn (his bright blue eyes) and the way he cuddles I hate even laying him down when he falls to sleep. I see them all quite a lot except Robbie. Robbie will be 12 and is still VERY attached to his Mom and Dad. EXTREMELY Attached.
Reed Michael lived with us with from the day he came home from the hospital until he was in kindergarten. My younger daughters say Reed is like their brother instead of nephew.
When my grand kids hurt so do I.
Reed was at the golf course on Sunday with his step father Calib and low and behold his father Scott(sperm donor) and grandmother was on the tee right behind him. His father never said two words to Reed on Sunday. I wish I had been there.... I would of told that "piece of crap good for nothing sperm donoring worthless ass-wipe(ooops did I say that?) to go straight to the devil" Knowing Reed just had his 18th birthday not so long ago. No one from that family even called him and wished him happy birthday. NO CARD NO NOTHING. Scott's Mom went after Grandparent rights a long time ago and he had set weekends to be there. Scott was never around Reed then either So, Reed did not want to stay with Scott's parents anymore. He said more or less it was too much drama.
Reed and his real Dad have NEVER had a good relationship because of broken promises(like no shows for special time together) and he is just a "flipping jerk" "Sperm donor" fits what he actually is. He gave up all rights to his other 2 kids so he did not have to pay child support but Dana(Reed's Mom )would not let him get off that easy. He helped bring Reed Michael in this world he can help pay. Dana went after Scott a few years ago for child support. He would not after the order was put for him to start paying when Reed was 6 months old. I know what happened with his Dad on Subdaytore Reed up badly. His stepfather tried to get Reed to confront Scott but Reed said. "He is not worth it" . I just hope Reed's heart his healed when he has kids of his own. Gosh, I love that boy oops.... young man. Why do men have to be like that? Why do some men just think they can go around make babies and disappear out of a child's life. We always made sure Reed got what he needed. Reed was very close to Paul until he hit his teem years.
Okay, enough venting. No one will listen to me around here when I get on a roll I have to write about it. It makes me feel better. I did not have his other grandmother's phone number but, I did email her and tell her how I felt. I am probably going to be in deep trouble over this but its crap and it needs to be out in the open and dealt with. All the "shhhh shhhhhs" are over I have had ENOUGH!!

Lizzy had pictures for her 6th birthday done yesterday and family pics with Brandon and Christen. Then, Dawn and her family had theirs done. The photographer was Rhiannon a family friend doing the pics but I stole some snaps for myself. So, mine are not professional but I could not resist to steal some poses for myself.

DR Hough's office called this afternoon. DR. Hough broke his hand so they cancelled Lizzy's wellness check and shots for tomorrow. I said "YOU CANT CANCEL" I just got Lizzy to not throw a fit she was getting shots.... well I know its unavoidable. But darn...

Any way Lizzy will be 6 years old in a few short weeks. She is amazing and so are her cousins. All my grandkids are a privilege to have in my life.

Many Prayers to our friend Charlie he is not feeling well. Many prayers to MJ who is not feeling well. Many prayers to our friend Molly in CA that is having surgery,
Many prayers to all the sick kids and everyone that needs prayers. Many Prayers to DR. Hough to heal fast.

"We believe in miracle because we live with one"

www.our-sma-angels.com/elizabeth

She Never Stops Amazing Me (Spinal Muscular Atrophy Type 1)

I love this pic of Lizzy around this same time last year.

We had to take Lizzy to ISU (Il. State University ) yesterday for evaluation for Lizzy to see what kind of devices for communication and assistive tech that would help Elizabeth be more assessable. Also, to see where exactly she is as far mental comprehension. Knowing how she was uncooperative with the State Psychologist and with me sometimes during our home school sessions we did not know what to expect. Well, she shocked all of us. She awed them with her knowledge comprehension level. She far exceeds the normal 6 year old mentality/intelligence. OH my.... It was incredible the amount she knew. I did figure out though that Elizabeth has been playing me. Little stinker.
It makes me feel very good that Elizabeth has been paying attention and learning. I guess I can not complain about her watching the history channel with her Papa...... (gritting my teeth here). Paul watches it EVERY DAY ALL AFTERNOON and sometimes into the evening. She also ALWAYS has been pretty observant and does not miss a thing. I lost my TV independence with him home now. My Lizzy never stops amazing. I am very privileged to have this little girl in my life.

So, we will be working with two different reps from two different companies here soon.

Elizabeth's birthday plans are still not set as I had thought. Dawn asked if Lizzy could have her party at her house because the renovations are about done. Well.. I was informed tonight that Robbie my grand-son is celebrating his birthday the day after Elizabeth's party was planned. Now, Dawn has a baby shower for her best friend the same day as Lizzy was going to have her party. I told Christen if she would of sent out the invitations like I told her this would not have never of happened. This really sucks. Every miles stone for Elizabeth is something to celebrate. I guess we come back from the Chicago walk we will be doing her party the next day. Two days early. It is the way it has to be I guess. She wants The Highschool Musical theme this year.

I just heard our good friend Molly from California (that we have stayed with before) has to have surgery, Many prayers to Molly.

Many Prayers to MJ also I just read an update and she is sick . MJ get better soon!!

Lizzy shots are next week. I do not look forward to that.
I also get my flu shot next week and the rest of the family too . Flu season is upon us. I pray Lizzy stays as healthy this fall and winter as she did this summer.

Have a good week-end.

Many prayers to all that need them.

"We believe in miracles because we live with one"

www.our-sma-angels.com/elizabeth