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

Miracle Ride Today (Spinal Muscular Atrophy)

Today we took Lizzy to the Miracle Ride 2009 at Timber Pointe Outdoor Center/ MDA Summer Camp in Hudson, IL. It was a great time for us and Lizzy too. Being a old biker myself(just have NOT been on one since Lizzy's diagnosis) and Paul still actively riding we fit right in. Brandon actually went to the event also which made Lizzy very happy. Big shocker he even attempted to go. He did get kind of freaky a few times take off and left. I just wish....*sigh* any way it was a great time. Lizzy loves all the bikers and is getting to know the MDA people really well. She hears bikes drive by and knows when its a harley.
Next year hopefully Lizzy will get to go to camp. Christen and I will be going with her. This year the MDA Camp here was closed because of the Swine Flu.

We are still trying to figure out our CA upcoming DR Wang appt. I believe we will some how get the funds needed for driving all that way. We are not going with the Goodson's as previously planned. They have made other plans as of today. We have went through trying to fly before and have been escorted off the plane because of a food pump issue that they would not approve at the last minute. We went through NOT getting our luggage when we were taken off the plane and I do not want to even try flying because not knowing where you luggage is at is very devastating. The new DOT guidelines are in effect and we are not putting ourselves through "Trying To fly" knowing we maybe be taking off the plane yet again. A few years ago Obama's office(When he was US Senator) helped us get this taken care of. Now, us knowing the new guidelines and trying to fly is something we do not want to even attempt. This situation is resolved between the airlines and the manufacturers of the respiratory machines. We are leaving the 15th of July some way some how driving Paul has decided tonight just incase any situtions arise along the way. Lizzy's appt is the 21st.

Check out this out !! We know this family . Pretty neat Vince!!
http://www.foxnews.com/video2/video08.html?maven_referralObject=6363746&maven_referralPlaylistId=&sRevUrl=http://www.foxnews.com/foxfriends/

Many prayers to our sick friends and for Jerika who will be getting spinal surgery next week!!

Oh and day 8 and no swine flu here !! Thank goodness!!!!

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

Upcoming Adventure (Spinal Muscular Atrophy)

Picture above is Lizzy's friend Charlie and Lizzy (He is as ornery and she is)

Its day 7 and no swine flu here. There were a few cases reported after the FSMA conference and many of us were very worried . A better way to describe it is "FREAKEN OUT!! Doc here ordered Tami Flu for Lizzy that I have on hold at the local Mom and Pop Pharmacy if Lizzy has any one the symptoms.

Lizzy went to down town today to the "Hang Loose -Wall dogs" doings with Paul and Christen. She loved it but did no stay long due to the HOT weather. I had Corbin here at home.

Well, with the NEW DOT Guidelines for flying looks like we are driving to CA this month that is its Total Estimated Time: 31 hours 20 minutes Total Estimated Distance: 2136.69 miles . I pray to God we can raise enough money to go. Lizzy has to get the med and we HAVE to do this. These new guidelines have made it hard for all people using c-paps, Bipaps and ventilators. The manufacturers have not a clue on how they are suppose to handle this. So, until they get this figured out we will not be flying anytime soon. It always some kind of brick wall we face since Lizzy's diagnosis but we are always able to figure things out. Praying a lot helps. The plan is meeting up with the Goodson's in Iowa City and driving with Jennifer and Jake all the way to Palo Alto.
Info on New Guidelines for flying:
http://www.mda.org/publications/Quest/extra/jun09/air_travel.html
http://www.mda.org/publications/Quest/extra/jun09/vacations.html

I never want Lizzy to know we have worried so much to get her what she needs. We do not discuss this around her. She thinks we are going on an adventure on the way to see DR.Wang. She is VERY excited. I would give her anything I have to help her get what she needs. She is my heart. She is a very special little girl. We are going to find a way to do this for her.

Many prayers for all the sick kids and adults out there. Many Prayers for Jerika who had back spinal surgery next week.

Add us to your prayer list to help us get to CA safely then home safe.

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

Back from Conference ( Spinal Muscular Atrophy)

Pictures above are of DR. Schroth, Lisa ,DR. Wang and Lizzy at the 2009 FSMA conference in Cincinnati . We left for the FSMA conference on Thursday morning. We left home and it was spring and come back to HOT SUMMER weather on Sunday here.

Lizzy was pretty hyper with so many people in one place. It was great to see our friends , Lizzy's and meet new friends. Lizzy did have some issues while there which were out of the norm for her baseline She plugged on Saturday and was very choky both Saturday and Sunday but she is fine since we are home. She scared the bjeepers out of everyone when she had to get out of her power chair and get a cough because she had just had a taste of pizza sauce and it made her quite choky. A couple coughs and she was fine. I think the motel was very dry and hot but it was a very nice motel. She did great traveling.

We went to DR.Schroth's workshops and me ...... could not keep my mouth shut as usual. I just think I can save them all and I have to get over that. I told one parent who complained about the bipap that if he did not use the bipap he could kill her if he did not put it on her. She is a type 1 and type 1s need the bipap to keep their lungs healthy and help them get stronger. Ooops.... my heart over rode my mouth again. Another parent who was ignoring their daughter who had a plug I kind of told them their child needed a treatment. Some parents just do not "GET IT" even after months after being trained to take care of their child and it makes me so mad I could scream! These kids were so precious and so fragile. They need pulse oxs on (when they are little and can not talk and always when they sleep) and cough machines and suction machines close ALWAYS in my opinion. Lizzy had a pulse on 24/7 until she was almost 4. When she travels and is sleeping she always has a pulse ox on and all her machines very close.

It sounds great about all this stem cells research will . The babies that are going to be in the trials for stem cells have not been born yet.

Got some news. We probably will not be able to fly to CA in July. UGH.... NEW DOT guidelines. We have to go to keep Lizzy on the med we have no choice. So, we have to come up with a fundraiser very quickly to get enough money to drive out there. I hope we can do it. WE will not take Lizzy off the med no matter what. So, keep us in your prayers that we can get this all figured out. Some how this will happen.

Many prayers for the sick kiddos and to us finding the $ to drive to CA for the July 21visit with DR. Wang.

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

Summer is just starting..... (Spinal Muscular Atrophy)

Sorry. Its been a few days since I have updated.

If you have not heard from me and you have emailed me I am really sorry. Something is wrong with my broadband so I have been using dial up so getting to staying online is hard. I get kicked off VERY easily. I hope I have the broad band fixed by tomorrow.

Its been extremely busy around here. Today for instance, I had my grand-kids , my niece and as always my Lizzy. ALL DAY LONG.... Never a dull moment. Babies cooing, Babies crying, Lizzy having a melt down because needs help with her computer, Rachael(Typical 13 year old) arguing with me about her attitude, changing diapers and losing of my sanity(it seems like some days). Oh and changing my shirt because one of the babies spit up on me. I don't get a chance to get much done these days as for myself, but that is okay. I love kids and taking care of them is natural for me. I would of had twelve if I could of. ( yeah right!!! )

We took Elizabeth and Caitlyn on Saturday to a indoor football game at the Coliseum in Bloomington. Extreme was playing. The MDA got us tickets and it was a great time. Elizabeth and Caitlyn thought it was the best time ever. It was last minute decision and with in 45 minutes we were packed and on our way to Bloomington. Paul got Caitlyn and Elizabeth Cotton candy and a huge slushy. Elizabeth just had tastes but the excitement on her face was something I will remember for a long time. Every one thought Elizabeth was so pretty and her power chair was too cool. Her and Caitlyn both felt very special. We also saw Amber (Director of the MDA in our area) and her two daughters. We talked to Amber for a bit. Not sure if Lizzy will be the area Good will Ambassador yet or if they will do a segment on her for the MDA.

The antisapation has started.... We go to the FSMA Conference on Thursday.
Elizabeth is so excited and we are too. Elizabeth says she wants to see her friends and show DR.Schroth how big she is now and how much she can do. She says she would like to see DR.Wang also.

Also more hurdles for us to jump with New Air Travel Rules for Respiratory Equipment are in the June MDA Quest online Learn more about this new regulation that is already in effect in the Quest Online article, and about other issues that are important to the MDA community at:
www.mda.org/advocacy Oh boy, can not wait to figure this one out since we fly out to CA in July for Lizzy DR.Wang's visit. I will start calling tomorrow to figure out what kind of things we have to do now. If we could afford to just drive we would. This is getting crazy just to fly with Elizabeth.


Lizzy has been doing great. She recovered quickly with the last illness. (All that good donor breast milk she gets makes her bounce back fast)

Many prayers to all the sick kids and for all the family and friends going to FSMA conference for a safe trip there and home.

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

Absolute and Friends Sound off for Muscular Dystophy(Spinal Muscular Atrophy)

BY: Sara Schnickel

Bugle News

Pontiac,IL

Absolute and friends sound off for muscular dystrophy
Contest entrants blast car stereos in hopes of high decibels

Absolute Sound and Security and the Absolute Perfection Car Club will host a car stereo contest on Saturday, June 13, to raise funds for the Muscular Dystrophy Association (MDA). Shown above, left to right, are Absolute Sound’s Tim Burgess, Tywone Kingsby and owner Calib Baxter. - Photo by Sara Schickel/The Bugle
by Sara Schickel

What do stereo speakers, Jerry Lewis and a car club have in common?

They are all part of the upcoming car stereo competition to support the Muscular Dystrophy Association (MDA) at the Jerry Lewis Telethon in September.

Absolute Sound and Security and the Absolute Perfection Car Club started the competition a few years ago in order to raise money for MDA — an organization dear to the heart of Calib Baxter.

Baxter, owner of Absolute Sound and Security, has a niece with muscular dystrophy. “Little Elizabeth, she’s almost six years old. She’s the happiest little kid. She’s not going to be able to walk. She can’t move her arms, but she’s happy — and that’s what gets me,” he said.

“The MDA does a lot for her. I mean a lot for her. I didn’t realize how much they get involved until Elizabeth and her problems,” said Baxter.

Tywone Kingsby is an employee of Absolute Sound who also has ties to the organization. He has a nine-year-old son with a medical condition.

“Calib and I were talking one day. I was telling him about my son. He told me about his niece, and we started talking about a fundraiser,” Kingsby explained, “We got a lot of friends and the car club involved.”

He continued, “It’s a good opportunity to give back to the kids. Having a child with it, I know how hard it is to buy all of the medicine and transport them to different places. Then we have [the MDA] who actually pitches in for you and helps you out. It makes your life a little more stress-free.”

The men wanted to do something to raise money for the organization that does so much to help children and their families. They decided to host a special contest that taps into the desire to blast car stereos.

Baxter said, “There’s a lot of high school kids in the area that have the loud stereos, but legally you can’t run your stereo loud because you’ll get a ticket.”

He continued, “So we try to do something one day a year where they can come in here. It’s permitted by law, by the town. They can come in here and crank it up, and it’s for a good cause.

According to the organizers, there tends to be a lot of drama and one-upmanship at this type of event. “It’s a soap opera. It’s a guy soap opera,” Baxter joked.

Since the event started, participation has increased from 21 people the first year to 38 in the second. The organizers are expecting about 100 cars to be entered into this year’s competition.

“We’ve had guys call us from Herscher, from Peoria, from Springfield,” Baxter said, “We hope it’s going to be a good one this year. We’re excited. I can’t wait.”

This year, the group contacted local businesses for sponsorships.

Even in these tough economic times, local businesses supported the fundraiser and donated not only prizes and money, but also food for the event.

“I am so impressed with the community. They have really come through. No begging, no nothing. [We just said] ‘Hey guys, this is what we’re doing.’ [They said] ‘You bet. Sign us up.’ Everybody we’ve called — no one has said no,” said Baxter.

Prizes include two 12-inch sub-woofers, a remote car starter, oil changes and tire rotations. “Snap-on tools got involved and gave us a jacket,” stated Baxter.

The goal for this year’s event is $3,000. The funds will be donated at the annual Jerry Lewis Telethon in September. The group will volunteer and answer the phones, then make their donation at the telethon.

“Everything that we make off the show goes to the Muscular Dystrophy Association,” stressed Baxter.

The car stereo competition at Absolute Sound and Security will start at 11:30 a.m. on Saturday, June 13. Entries will be judged in decibels. For more information, contact Baxter at (815) 822-2867.


For more info Elizabeth please read her web-site
www.our-sma-angels.com/elizabeth
"We believe in miracles because we live with one"