There is no place like home (Spinal Muscular Atrophy )

Pictures above: Molly and Lizzy
Hayden and Lizzy

We got home Sunday late evening July 26th. We left home July 16th. It took 4 days and 3 nights to drive to California and 4 days 3 nights to get home.

You always like to think about how great a road trip would be until you are on it. I kept thinking what an adventure it would be for Lizzy. It was for her. It was long and hot all the way there.
On the bike it was great not so many years when Paul and I would just take off and go.
Never in my 51 (yep turned 51 last week) years of life did I ever imagine driving 2130+ miles one way with a child and myself sitting in the back seat of a van. We were carrying 200 ounces breast milk there and trying to keep it frozen, a power chair, food to eat on the road 7 days worth of clothes and all the machines,supplies and everything we needed to keep Lizzy healthy. If this trip was not "a have to" thing we would of never went but Lizzy had to go and you do what you have to do for your kids. After we hit IL on the way home I got this overwhelming feeling how glad it was to finally be almost home. Then when we pulled in the drive I wanted to do nothing but go get in my own bed. "There is NO place like home"

DR. Wang told us in his outcome on his trial results that kids on the Hydroxuerya have a 250% chance of surviving over the age 2 than kids with out the med. Wow, the results gave me goose bumps. He has to do one more study for FDA approval since his test study patients were so few. He needs about 3 million dollars to do this. I would love to see this med get FDA approval. So, many the kids that could benefit from this med. NIV protocol and diet and so very much important also.

DR.Wang spent a lot of time with Lizzy and was so excited to see her. I have never seen him like this with her. He was so happy to see her and just kept raving how great she was doing. She has gained 7 pounds since last October. He kept saying how great she looked and how great her complexion was. He asked her to reach for her mouth and she did with no problem. She keep showing him all sorts of stuff. Like how she can roll over pick her legs up, rock back in forth, roll to one side etc. He was stunned. She talked to him but not as much as she did Jonathan the coordinator.

The Pharmacists that have been working with the trial came out to see Lizzy. They have known here since she was 8 1/2 month old. They told her what "a Star" she is and that she made DR.Wang "a star" . Total admiration for her. Lizzy is quite a miracle. It makes the ride to CA that was not so good seem quite worth it . They got to see her also in her power chair.

We got to see the Calafiore's !! I was great to meet them. Hayden looks great!! Lizzy fell in love with Jennifer and Hayden. Chris is such a great Daddy also. It was very great to see a newer family that really is working so hard to help their daughter. They fed us dinner!! It was great!! They are so cute

We had a great time with Molly and Andy. They had us over a few evenings for dinner. A cookout one night and lasagna the last night there. They have a friend that is a chief that made a chocolate torte "that was to die for" it was great!!! He also made a great lasagna. They treated us to the museum in golden gate park(the aquarium part that Lizzy just loved) and lots of great conversation. It always so nice to see them. Paul finally got to meet them and he loves as much as we do. Every night on the road Lizzy would say where is Molly and Andy at!! She wanted so much to see them. They finally got to see the "Real Lizzy" and how ornery she is.

I had an accident a day after we got to CA on Monday the 20th. A bad one... Lizzy and I were in the parking lot at the motel. They have murals on the wall that I wanted her to see. She was in her power chair and I was walking on the side of her with her suction machine. So, I turned and said "Lizzy turn this way and look " well..... she clipped me some how and I fell over her power chair on top of the suction machine. Lizzy is no way was hurt it was me. I hit my face on the pavement (big ol bruise on my face and a eye) . I have bruised chest and side. I still hurt very bad. It was not Lizzy's fault. Paul had turned up her chair to 7 and I am not at all used to her with those higher speeds. I have no insurance anymore so if I do not start feeling better by Thursday I will call DR. Hough. My face feels better but my chest and side still hurt. I have been taking Motrin and a pain killer at night.
It was quite an experience.

Thank you for all that help us get to CA, home and helped us while we were there. Your support and prayers means so much to us. We are home and Lizzy did great. It warms my heart to think how so many cared so much about Lizzy to help us get to California and home safely.

Elizabeth is truly a wonderful kid and so full of life. I taught her at a very young age "You can do anything you want to do some way some how."
As Lizzy says " I love you all from my heart to yours"

"We believe in miracles because we live with one"

Many prayers for the Panno family. Our neighbor Frank lost his son John while he was jogging last Thursday. John was a year and day older than me. So very sad to come home to this news.

http://www.pontiacdailyleader.com/obituaries/x2141121685/John-J-Panno-52-of-Pontiac?popular=true


www.our-sma-angels.com/elizabeth

Thank you (Spinal Muscular Atrophy)

Sorry, I have been MIA online this past week. Christen has been sick this week(She is on antibiotic) and I am keeping her clear from Lizzy and me. She is better but still has a hacking cough. Ewwwww all those GERMS. I am not wanting to get sick or get Lizzy sick while on our road trip this coming week. So, I have been chasing my tail all week not getting caught up or at the a point I can pack yet. Its been frustrating to say the least.

The Bake sale. CAR wash was really great!! THANK YOU SO MUCH!!! They raised around $500.00!! That is such a big help. OMG! Thank you Friends , family and people in our community of Pontiac for your support and help!! Today my daughter Dana has a car show at the park and runs a concession stand and selling some of the Boutique hair bows I made also. She has already sold 5 this morning so that is GREAT. AT $4.00 A PIECE that will help too. We have enough money for motels room and gas now so we should be good!! Thank you to the many great friends we have!!!

Lizzy is doing pretty good even though the humidity is so thick you can cut it with a knife.
She has grown so much this year that some of her summer clothes that were bought in May are too small!

Lizzy will not be the MDA Good Will Ambassador for central IL this year so that is one less thing we have to worry about. We can SLOW down on feeling obligated to go to things we have no time for .. Don't get me wrong we will be at the telethon and some other MDA things. Lizzy has been the ambassador for three years running and that was quite an honor but we felt obligated to do and go to EVERY function that involved the MDA. If Lizzy was not sick or we were not in CA we rearranged our schedule to make sure we made an appearance. This next year if we have something else to do then we will pass and not change or plans. We will still be at the telethon with Lizzy this year. Other kids also need that honor and the chance to help the MDA . It really was time for us to take a break ...... ahhhhhhh. . As, you all know it takes time for us to go any where.

Hope you are having great summer!!! Keep us in your prayers we leave WED!! Many Prayers to my friend Mary and her family. Many prayers for MJ too!!

Will leave Thursday to CA so with every thing I have to do I probably will not be around much this week either.

So, if I owe you something by mail I will send it after Christen is totally WELL. I am not sending that germ any where!!

We believe in miracles because we live with one!!

www.our-sma-angels.com/elizabeth

Articles on Lizzy (Spinal Muscular Atrophy)

Rules Keep Pontiac Girl Grounded

By Sheila Shelton
Pontiac Daily Leader
Wed Jul 08, 2009, 11:52 AM CDT
http://www.pontiacdailyleader.com/news/x488830394/Rules-keep-Pontiac-girl-grounded

http://www.pontiacdailyleader.com/news/x488830355/Event-garners-donation-to-promoter-s-favorite-charity


Pontiac, Ill. -
Elizabeth Hallam of Pontiac is a 5-year-old who was born with a type of spinal muscular atrophy (SMA) that has caused her to need to be treated by physicians in California three or four times a year. This plan has worked for the child until this year.
New Federal Aviation Administration (FAA) rules have put a huge stumbling block in her way.
Instead of being able to fly to California for treatment this year, Elizabeth’s family will have to drive her to California for treatment of the SMA type 1 disease known as Werdnig-Hoffman disease.
The FAA now says that travelers with respiratory difficulties cannot fly without new types of labeling on medical equipment.
According to FAA guidelines, “Travelers with respiratory difficulties who use commercial airlines need to be aware of a new labeling requirement for ventilators, respirators, positive airway pressure devices and personal oxygen concentrators.”
The new regulations require special labels on these machines to ensure that they meet FAA requirements for medical equipment. Trying to travel without following the new regulations may result in passengers being denied a seat, or being required to turn off the respiratory equipment during the flight.
Lizzy, as she is called, will be unable to fly to California for her July 21 treatments with physicians because of these new regulations.
“This will necessitate her family driving her to California,” said family friend Billie Semmens. “This means that the family will have to have funds for gas cards and money that could be used to stay in motels along the way and once in California.
“This means they will also need to be able to have a car good enough to get them to California and back. We are hoping they will be able to rent such a vehicle.”
Friends are hoping to raise money to help the family by holding a bake sale and car wash on Saturday from 10 a.m. to 2 p.m. at Pontiac’s Auto Zone. Monetary donations may also be made to a bank account named “Fighting for Lizzy” that has been established at Freestar Bank.
Lizzy is the daughter of Christen Huette and Brandon Hallam of Pontiac. She is the granddaughter of Herb and Jeanna Huette.
Lizzy was just a few months old when diagnosed with the disease. Her parents were told that she probably would not live past her second birthday without extensive respiratory support, and despite aggressive care, survival could not be guaranteed.
According to Jeanna Huette, the family was able to get Lizzy set up in a Stanford University program for SMA type 1 children with Dr. Ching Wang.
Lizzy first saw Wang on June 10, 2004, in California.
“Lizzy still has the need to fly out to see Dr. Wang every four to six months in order to stay on the medication and in the treatment program,” said Huette. “She is doing so well now, I don’t want to see this come to an end because she cannot fly to California.
“The new FFA guidelines are so stringent that manufacturers of this medical equipment have just not yet been able to achieve all this new labeling.”
Huette said she hopes by any appointment Lizzy may have later this year in California that the labeling situation is resolved.
“Lizzy does so well with this program and we have been able to keep her enrolled in it and been able to get there in a relatively easy manner. I just don’t want government regulations to ruin her method of care,” Huette said.

Event garners donation to promoter’s favorite charity




Event Garners donation to Promote favorite Charity

By Erich Murphy
Pontiac Daily Leader
Wed Jul 08, 2009, 11:45 AM CDT



Pontiac, Ill. -
Four car owners can claim to have the loudest vehicles in Pontiac after results for the Absolute Sound & Security Stereo Competition were recently announced.
The event took place last month at the sponsor’s place of business. Calib Baxter, owner of Absolute Sound & Security, put on the event to raise money for the Muscular Dystrophy Association.
The proceeds tallied $500 that Baxter ceremoniously gave MDA Tuesday when he presented the check to his niece, Elizabeth Hallam. Hallam has spinal muscular atrophy. The check will be sent to MDA.
Baxter said in June that this cause has special meaning to him and that his car club goes to Peoria to help with the phone bank during the Labor Day telethon.
“It went great,” Baxter said of the event. “I’d like to especially thank all those who helped and the Pontiac Police Department.”
Paul Tharp won the Class 1 title. The speakers for this classification had to be 8 inches to 23 inches. Ben Roe won class 2, which had speaker of 24 inches to 36 inches. The loudest in Class 3, which had speakers 37 inches or larger, was Kevin Schneider. The Outlaw Class winner was Ken McDorman.
Baxter said Absolute Sound & Security hopes to continue to sponsor such events in the future to raise money for MDA.


www.our-sma-angels.com/elizabeth

Rainy 4th (spinal muscular atrophy type 1)

Happy 4th of July. Its a rainy wet day out there today so our planned activities for the week-end have changed dramatically.

Elizabeth has decided in the mornings this past week she does NOT need to get out of bed according to the schedule I have taken 3 years to get "perfected" according to her needs. She is a "little rebel" this week. She has me take the bipap off soon as she wakes up then... she lays in bed watching TV, doing activities on her PC or using her nintendo ds. I have added more food and kept her running until she decides she is "Ready to get up" so, we didn't mess that up. Well, as of this morning I realized how this messes up my daily activities and I told her as of today we are going back to "Nina's schedule". She made some comments under on her breath " You are so mean and my Mommy will let me stay in bed " any way I found out life works better for us to be on schedule. Once in while a lazy day but.... we aren't making a habit of it. God love her for her spunk.

My thoughts:

I know I have repeated myself several times about a Type 1s care. Please if you are newly diagnosed with any type of SMA find other parents of older kids that their kids are doing well to help you. You need to find a good NIV doctor ASAP. SMAspace( just put it in search) is a good place to start, The SMA support guest book and FSMA web-site. There are many places on the web that you can find lots of info about NIV-SMA Type 1 Protocol. My preference is DR.Schroth in my opinion. She is the best SMA Pulmo Doc in the world. If you want to save your child then you need to think about g-tube/nissen surgery while they are still strong. Info on this is on Elizabeth web-site: http://www.our-sma-angels.com/elizabeth/gtube_nissen_opinions.htm Many parents opinions and a few docs. Your child can loose their swallow very easily and quickly.
If your doctor gives you "no hope "and does not want to help you with your child's care and you want to save your child you need to find another doctor right away. I totally understand that we have been programmed at a very young age that "OUR doctors know best". Well, with SMA this is not always the case. If you want to save your child you really need to find a doctor that supports the NIV protocol and the proper care of a baby with Spinal Muscular Atrophy( I hear good things about DR.Brenda Wong in Ohio ). It is not an easy job but these kids are just so special they need you to fight for them to get what they need. They are very smart kids. Elizabeth is such a neat kid and knows just everything. She pays attention well. The first couple of years is the hardest but it get easier as you and your child get things figured out. If they are very sick or during G-tube surgery they can be intubated and be put right on bipap after they are extubated. They should never go just on room air with out a bipap after extubation. In a few cases of kids I know after they have been on NIV protocol they become bipap dependant after a serious illness and have to be trached. That is not all cases that is a few of the kids we know. But....please try the NIV protocol first. Its your choice though.

If you are breast feeding you can also use breast milk in the g-tube. Keep Pumping as long as you can. There are a few infant amino acid formula if you are unable to breast feed. Tolerex and Vivonex are the best for kids over a year in my opinion and you can still add breast milk in the mixture but please get with an older family to learn to mix the formula as with SMA kids its needs to be double diluted. Okay, I do not have a PHD behind my name but I have been in touch with 100s of families world wide and have have helped many. The difference in these kids is unbelievable after they start the AA diet.
Please! Please! if you decide to do these things do it every day and pay attention to your kids. I believe that a baby with SMA Type 1 needs a pulse ox on 24/7 and bipap at night, a cough asst, suction machine and please treatments at least twice a day. Its being proactive that keeps these kids strong. You never know if they will have a problem. Then, after you get the equipment USE it dont leave it in the closest or you could lose your baby.

Keep their facial muscles stimulated also besides learn to do stretches for a PT and OT.

Okay, I am done ranting. I just had to say these things today. Its been bothering me for a few weeks now.

Happy 4th of July !!!!
Many prayers for Jerika who just had spinal surgery at UW.
Many prayers for Lauren's uncle, kids in the hospital , sick kids , My good friend Mary and her family and us to get to Stanford on our "Road Trip" safely.

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

Believing in miracles(Spinal Muscular Atrophy)

(Lizzy and her good friend Emma above)

You know I never realized how my whole inner being has become so alive and how my friends I have now are so close to my heart. Elizabeth has changed me so much the past 5 years. Knowing such an amazing child that has such a devastating disease that can always be so happy and so ornery is one of God's gifts to me. She is just breath taking sometimes and make me just gasp at they things she has said or has done. She is truly my miracle.

You got to really believe and pray to get what you need for these kids. I just thank God he has been watching out for us. Lizzy is a true inspiration to so many.

A very good friend of mine is also going to get treatment for her daughter that is indeed a miracle also. She could change so much in our world. They are in our prayers.

Elizabeth has gotten us looking forward to driving to see DR.Wang. She is so excited to be taking her power chair and have papa going. Won't they be just amazed at her? Out is CA they have only seen her laying down never in her chair. We are excited about seeing Molly and Andy. She has been saying for months she wants to see Molly and Andy. I just pray all goes well on this trip.

We are going through IOWA, NEBRASKA, Wyoming, NEVADA and Utah to get to CA. Never been in any of these states but Iowa only flew over them.

We had gotten parts for a desk top and a parent control for Lizzy's chair from another great family last December from their daughters older chair.

Finally , yesterday we spent the day at National Seating with John (Lizzy's rep )and got Lizzy's chair all changed out with her adult control, gel pads her joy stick changed around and arms changed around for her. She is sitting straighter than ever. Paul and John figured out things together for her chair. Life is good.

Many prayers for all the sick kids, for the family going to get their child treatment, For Richard losing his brother and to us to get the rest money needed for out California adventure.

Hopefully. for next trip they get all these guidelines sticker DOT/FAA regs figured out. We are planning on this being a one time drive.

Thank you to all the great people in our life from the doctors to our dearest friends. Thank you all for just being a part of our lives.

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