My Old Updates


June 10,2004-June 18, 2004

We flew to Stanford University.  Dr. Wang said Elizabeth was a strong type 1. We stayed at the Rickie Hyatt for one night then the Ronald McDonald House for the duration of our stay.  We met with DR. Carol Conrad Pulmonary specialist and some more of the clinical study nurses.  Elizabeth went through the Pulmonary testing and her breathing was 106%. She also had a EMG which we still do not have the results. Elizabeth did really well with putting her under anesthesia.  It tore us up seeing her put under anesthesia.  Christen and I both cried.  After her procedure was completed Elizabeth did fine. She had all the doctors going "GA GA " over her.

She started the hydroxeria on the 18th of June. She had a few of the side-effects.

June 30

Elizabeth came down with strep throat and she was so sick. Her fever kept going back up after we got it down. We had to take her to our local ER because our doctor here could not see her. She also got thrush from taking the antibiotic. She was ill all together for a few weeks. She was so sick. Her white blood count cells dropped to 300. She was taken off the hydroxeria and we could not go to Stanford for the month of July.

Her white blood cell came back up but she was having trouble with her swallowing after the strep throat. Our doctor here could not help us. So Laura Stants told us about Dr. Schroth in Madison, WI. I emailed Dr. Schroth and told her just what was happening with Elizabeth and she called me right back on a Saturday. She said she would get us in to see her the next week on Thursday and we went. Elizabeth had a swallowing test and she was silently aspirating. So finding this out we cried and cried  again but we knew we had to listen what Dr. Schroth told us. She had us taught how to use the cough asst. and a BiPap. We had to meet with the surgeon on July 21.We decided on the g-tube with the nisson. The surgery is scheduled for the 29th of July with Dr. Shaaba.

We called Dr. Wang and told him what was going on and he approved of what we had to do for Elizabeth. She still is in the study and will return to California on Aug. 19-21.  

August 6  

Elizabeth is doing so well. She is gaining weight and her color looks so much better.

She got her top teeth finally in on Wed. Thank goodness. We did not think she would ever stop cutting them. I think she tried to get them in for two months.

She started nodding now. Its so cute.

Its hard to say this but I think without the surgery Elizabeth would have become weaker and her progression of SMA would have gotten worse. Thank God for DR. Mary Schroth. With out her knowledge of the disease and explaining what was going on Elizabeth would not be doing so well.

My very good friends are putting a benefit together for Elizabeth on 9/5/2004. I am so thankful for friends like these its so hard to express. They have the resources to do a very successful one. That God for Deb Reynolds and Deb Merlino and their husbands for making this happen. They kept it a secret from us until today.

Elizabeth goes to Stanford August 19-21 and back to Madison, WI on Sept 8.Then she gets button for her g-tube which I know will make all our lives a lot easier. She gets an upper GI test done too. We will have to stay the night before because we have to be there early.

I think the hydoxeria has also made Elizabeth stronger but we will not find out for sure if she got the med. for 3 years.

Poonam McAllister saw Elizabeth today and worked with her a bit. She is the Director of Rehab services at St. James here in Pontiac, IL. She has knowledge of SMA also and she has a lot of ideas on how to help Elizabeth. We like her very well. She does wonderful with Elizabeth.


Aug. 21.2004

We just got back to IL about 2am this morning from Stanford. Our luggage was lost because we had to change flights in LasVegas for America West to United because our flight was 45 minutes late due to traffic control. After several phone calls to complain we finally got it back.Elizabeth's bi-pap and cough asst were in our baggage and we could not go home with -out them. The only good thing is that we are now allowed to carry the machines on the flight without any hassles . The personnel at both United Airlines and America West were rude and did not understand the how vital these pieces of medical equipment. Believe me by the time we left O'Hare they knew how important these machines were and will never make that mistake again being so rude again.

Elizabeth visit with DR. Wang went fantasic.He is just thrilled to death all Elizabeth can do. She can nod her head yes, she can reach above her head, she picks up blocks and switches hands. She can sit reclined with no problems, she rolls to her side to her belly, she has gained weight. She is now 16 pounds 2 ounces. She talks a bit single words. He was happy we are on DR.Bach's protocol. He said she is doing so well and we all believe it is because of the hydroxeria. Its working!!! We do have to get her tube changed for the g-tube because he thinks its a bit too big and he thinks its causing discomfort that is why she is more fussy than usual. We have to go to Madison, WI  to the surgeon Sept.8th.He also told us that she is his star patient !! Its makes me feel so good knowing she is doing so well. She also has four teeth and working on a few more. So I am going to tell all I know about well Elizabeth is doing from taking the hydroxeria. We believe that hydroxeria and DR.Wang,her therapy with Jane Wright ,Poonam, DR.Schroth's dedication to SMA children and being able to do what we can for Elizabeth is why she is doing so well. She is a miracle baby!!! So many people have helped us for Elizabeth it is hard just to say why. All the parents that have helped, Laura Stants for all the medical advice and equipment  have help us make this happen for Elizabeth.

Thank you from the bottom of our hearts.

We also got to meet the Miller's while we were in clinic at Stanford and meet their little girl who also has SMA type 1 age 6 months. Since they have moved to California now we hope to get together with them next visit which will be 8 days this next time the end of Sept. or first part of Oct. They seem like great people and parents and we hope we can help them with questions and answers.

Elizabeth's Benefit will be Sept 5 here in Pontiac, IL.

Watch for updates!!


September 5-9, 2004

Elizabeth's benefit was a great success. My friends  that help put on the benefit were: Deb and Chuck Reynolds, Tony and Deb Merlino, Deb Caldwell, Betty H.,Alan Voights (for the pig) , all the volunteers, the bands Round House, Ion Quest, my son inlay Calib for DJing, Jimmy Berger for auctioneering, Joe Freeland, Amy Davis  and I could go on and on!! The policemen in the dunk tanks was great too!! Oh ..the businesses that helped too!! I can not express the overwhelming gratitude that I feel in my heart!! You all were wonderful and so kind!!

I can not believe how well it went. Its amazing what the power of friendship can do! There was a huge turnout and all the communities that helped with donations totally astounded us.

Thank you from the bottom of my heart!! Now Elizabeth will be able to continue her mission in this life which is saving lives from the genetic disease SMA from her part in the research! 

She is doing so well and we think that is from the hydroxeria and the PT she is getting.

She saw Dr. Shaaban yesterday and he told us she is doing very well she just needs to gain a bit more weight. He also said Elizabeth has a bit of an attitude now!  Which I would not know where that came from!

We also saw Dr. Schroth who kept telling us how well Elizabeth is doing!! So that is great news.

We saw Nolan and Sofia two other children with SMA 1 at Madison. We talked to the parents and it was good to have other parents and Sofia's gramma to talk too also. We finally meet people that are just like us searching for answers and trying to help these kids! Nolan was real sick last week I hope he gets better soon!

We leave the 26th for Stanford and will be gone until Oct.1,2004

More updates after that visit.

Thank you Laura Stants for the pulse ox we got today!!! You are a great person!!!!


September 22, 2004

Elizabeth has been sick since last Friday. She gave us a scare. We called up to Madison, WI and they told us to take her to the ER here and have them call back to Madison. The doctor on call for Dr.Schroth wanted chest x-rays done also.

Elizabeth has bronchitis. The Doctor at our ER put her on a very strong antibiotic and told Christen to keep doing what we have been doing. He said since Elizabeth has SMA it was going to take her awhile to get over it but she should be feeling better in a few days. Her chest x-rays were good. It was a bad weekend. She was so sick and her stats were not good. Her temp would go down then go right back up! I slept were her all week end until yesterday because was so sick. We did cough asst. every 4 hours, kept on BiPap as much as possible. Constantly doing chest pt and gave abuteral treatments. We also put her pedilite since she was running a fever.

Tuesday I insisted Christen take her to see Dr.Hough.I really was worried she was getting pneumonia or a lung collapsed because her ox level was staying around 88-94%. Well, I gave her the antibiotic early on Tuesday because her fever was up to 101 at 4 am again and Tylenol. When she went to the doctor around 10:45am she was jabbering and feeling much better. She did her normal flirting with DR. Hough. DR. Hough said she was pretty good for being so sick, ask Christen if what we doing as far as her machines, asked what med. we were giving her and if we were doing abuteral treatments. Come to find out that Christen thought Elizabeth needed her reflex med. because she had gas and acted like her stomach was upset. Well, the reflex med. counter acted the antibiotic and that is why she was still sick. So he prescribed another antibiotic because he did not think she had enough of the other antibiotic and told Christen she did not need the anti-reflex med. That is the reason she had gas was a side effect from other med. and her stomach being upset.

She is so much better today and almost back to herself. We had to cancel the pulmonary test and the visit to Stanford. We are going Oct. 7th if DR. Hough give Elizabeth a clean bill of health. We are not doing the pulmonary test though till Nov. because Elizabeth lung need to recover from her illness. So we only have to go for three days this time.

When these kids get sick it is so scary! It is not like a normal baby which is also scary it worse. They sound so bad and it just makes them so weak. I spent every day praying and telling Elizabeth she had to fight this because she had a lot in this life yet to do. She had to help other babies like her so she could not give up.

I think I am more worn out than Elizabeth today. She did it though.... she started bouncing back and that is all that counts. I am firm believer of positive re-enforcement and pray works miracles.

October 3, 2004

Elizabeth is finally better!!

I started her amino acid diet and we cannot believe the difference! She has less secretions and a lot more energy. I wish we had put Elizabeth on this diet a long time ago. After Elizabeth's g-tube we were told at the hospital they did not want us to put Elizabeth on tolerex. We kept her on Isomil till Friday because we did not realize that the secretions could be controlled so well with tolerex. Believing is seeing!!  We were supposed to start pediasure. I heard so many horror stories in the pediapoison from grandparents and parents of SMA type kids. When I had a mother email me and tell me how her daughter was having big time problems on pediasure that was it!! No pediasure for Elizabeth!

 I have done a lot a research on the amino acid diet and I finally got Liz(Kalair's mom) to help me get Elizabeth started on an actual formula. Liz was great!! All I had to do was ask!!She figured it all out for me. Thank God for helpful parents that take time to help you with their own busy schudele.I had tried the Tolerex on Elizabeth orally in July before her surgery and she refused to eat it. So with the g-tube I do not have to worry about that now.

The formula I am using 1 one pack tolerex,19oz of water, 4 oz pear juice and 1tsp safflower oil. Its working!! Elizabeth weighs 17 pounds so that is how Liz figured her diet and the amount of Isomil she was getting. No mixing amino acids with isomil!! Just the tolerex.

Elizabeth family birthday party with cousin Robbie is today. We were supposed to be at Stanford for Elizabeth's birthday but she had been ill so that was all arranged before hand.

Elizabeth went to play group at the hospital on her birthday with cousin Caitlyn for the first time. She just loved interacting with other kids!! She came home and started moving all over the place. Well, lets say trying!! So we decided we will take her all the time now.

We cannot wait to see Aleena at Stanford she has SMA Type 1 too and has been in the hospital. We are looking forward seeing DR. Wang too.

We leave for Stanford this Thursday the 7th of Oct.

October 11, 2004

We are back from Stanford. Elizabeth is doing well according to DR. Wang. We stayed at The Rickies Hyatt again. It went fast staying there this time. We met with Stephanie Miller while were there. Her daughter Aleena is a Lucille Packard Children's Hospital at Stanford and is stable It was nice to help some one with helpful info we have learned from DR.Schroth and parents who has help us with Elizabeth we have learned.

We got to meet Pranav 9months just recently diagnosed on the plane home!! Kavathia his Mom has been in contact with me since the week he was diagnosed. Kavathia and her husband are wonderful people and want to do what is best for their son. He looks really good . They diagnosed him a type1. They had lots of questions and I wish I could of showed them all we do to help Elizabeth but.....we both would of missed our next plane. I gave Kavathia DR.Schroth's info.

Elizabeth is doing really well on the Amino acid diet. She has less secretions, more energy and she sweats less.

October 22, 2004

Elizabeth had a busy week. Her stats were low and remained that way after putting her on Bipap and even upping her treatments she still was low. So we went to (local)Doctor Hough and asked for a chest x-ray. Sure enough she had a plug or start of Pneumonia.  So we "tag teamed" her till we got her to 98-100 ox. Then off we were to Madison. Her G-tube also popped out (it got caught on the side of the hide-a-bed) that morning too. So Christen and put it back in and took her to (local)ER. Where they said Elizabeth's G-tube Button was too high tech for them and told Christen it looked good but they could not help much.... Go Figure.... Elizabeth stats stayed real good for the trip. We had to stop once there and once back for cough asst. and chest pt.

DR.Schroth thinks it was a mucus plug and we got it. She told us we do a great job with Elizabeth. Elizabeth also got her flu shot. DR. Schroth watched Christen put in a new button and said she did it right. She said Elizabeth is doing so good. Yee Haw! We are back to positive feedback again! Elizabeth is back to jabbering and being her ornery self! Dr.Schroth laughed at her! She was talking Dr.Schroth like she knew what was going on!! It was so cute. We also talked about the amino acid diet and other thing relating to Elizabeth and treatments for a long while. Plus how we do need a 2 hour lay over in between flights when flying to Stanford for the study. I mentioned how Dr. Schroth also can monitor what the clinical study drug has done for Elizabeth. She agreed. It was a great visit . We might have to go next month for a second flu shot we do not know yet. Dr.Schroth will call us about that. We also stayed at the Ronald McDonald House on Wed. night. Megan Johns (Elizabeth's Aunt) went with us to help carry since my back is not good these days. She knows now how much care Elizabeth needs to be healthy.

There were a few babies with SMA in the hospital at UW. Charlie (14 months) and another one getting surgery but we ran out of time and had miss them.  I am sorry we could not meet. There was not enough time.

Elizabeth and I are hanging out today. We have watched tons of Sesame Street Movies and Nick, JR. Baby. I had a procedure done at the hospital that I hope helps me with my pain in my back. My seems to be getting worse. 

I believe we will be going Stanford around the 4th of Nov. We will update after that visit unless something happens. Pray it does not!!

November 13, 2004

We got back from California about 1:00 am on Saturday morning.

Elizabeth had a few problems when we got home but I believe it was the weather change. She had a 1 degree temp but her heart-rate was up to 152-170. Her ox level was normal 99-100%. Weird. I think she just is coming down with a cold or something. She is teething again badly. At about 7:00A.M her heart-rate was stable and not jumping up and down. It was scary. I gave her motrin, extra fluids and we did her machines as normal. We did not get a lot of sleep due to our usual worrying and working on her. I really think as I said it was the weather change. It was raining in California, very hot on the plane and very cold in Chicago when we arrived back to IL. Her ox levels were very good on the flight and have been.

The straight flight worked out a lot better.  At Midway Airport the employees are so much nicer also. Its easier to find where you are going and a lot less walking.

Elizabeth's visit with DR. Wang as usual was very good. I gave him Poonam's report and pictures of things Elizabeth was doing in pt also. He was very pleased with the results. As usual Elizabeth over exceeded his expectations. We will be in the study until February. Then the "open label" part and we will be in that until June. When Elizabeth was sick with strept throat and not being able to go for a few months due to illnesses Elizabeth had set us back a few months. She was only off the med. for less than two weeks the whole time but... I guess because we could not fly due to these things we are behind.

We got to see Aleena who looks like she is doing so much better. That was a plus. That little girl has been through a lot. 

We also got to see Kavathia, her husband and their son. Their son is so cute. It was great to see them.

Its amazing how well Elizabeth is doing. The medicine is a miracle and the diet is too. The machines (protocol of DR.Schroth) also help. Elizabeth is doing so well and I thank God we got her in this study and have the doctors we have.

We will be going back to Stanford again around the 10th of Dec. unless we cannot get a flight due to the holiday overload on flights.

I just hope this slight illness is just that "Slight" and over with fast. Its a bad time of year to be sick. We might skip pt tomorrow just to keep her home and not take a chance letting her get chilled again. Better not taking a chance even though she seems doing okay.

I really love seeing DR. Wang. He is so supportive and gets so excited over the things Elizabeth can do.

Elizabeth's muscle tone has so much improved. She used to feel like a rag doll when holding her arms now she has resistance and you really can tell she has gained a lot of strength over the last few months after her G-tube surgery.

I will update more later.

I am just happy all went well except my "lil bit" having a slight fever.  She is such a sweet heart and when she does not feel good the whole atmosphere changes at home.

November 29, 2004

Sorry, I have not gotten back to anyone till now. Elizabeth has been ill all weekend and I have not had much of a break.  Elizabeth does not want anyone but me when she is sick. I worry so... I am up all night watching the pulse ox and waking her up and working her if her ox stats are lower than normal.  She has had a lot of mucus and is really teething bad. She teethes so bad and then nothing..... I know she is in pain because her gums are so swelled and her heart-rate goes up and she acts like she has pain.  The weather has changed here to just plain cold too. She was fine Thanksgiving Day then when I got her home she was full of mucus when I did the chest pt and cough asst. She seems better today and for the past 6 hours her stats have been normal. So I am not blowing anyone off I just have not been on the PC for a few days!!

We got confirmation today. We will be flying to Stanford the 8th and leave the 10th of DEC. Pray Elizabeth will be better for the trip!!

I hope you all had a great Turkey day. We did!! Great news also  Pranav who is also in the study with us at Stanford has should more signs of strength and is moving his feet more!!! That is great news!!!  He has been on the med. since the first part of November.  That just gives me goose bumps all over!!  It makes me feel good that Kavthia listened to me and her son has benefited from it!! Love and Hugs, Jeanna

December 9, 2004

We are at Stanford.  Elizabeth shows great signs of more strength when Dr. Wang checked her.  We will be coming back to Stanford early next month since Elizabeth has to have some more testing done.  They have families that want to meet us.

Dr. Wang told us about a three month old baby.  The baby was 6 weeks old when diagnosed.  He said that the baby was really a weak type 1.  Then after a month on the med he was moving his arms and he said he has never seen such great strength and improvement.

The key for the med to work is the younger the infant the easier it is to stop the progression.  We told him that was really great and we are letting parents know.

He said he has a new protocol also because of Elizabeth that he is trying to get approved.  She can not have her dosage upped because of her illness in July she had to take a lesser dosage until the open label part of the trial.  If she could have her dosage upped she would be doing better than she is.  So we are happy with our visit.

If you are a newly diagnosed parent you need to contact Dr. Wang ASAP.  This drug does work just look at Elizabeth.  If any questions email me.

December 11, 2004

We were at Stanford till Friday. We got home about 2am today because of over  a three hour lay-over in SF because of weather.

We had dinner with Stephanie Miller (Aleena's Mother) and talked for hours about what we are doing to help our kids. It was a good visit.  The only problems we had was the high security at SF airport. They did a whole search of our baggage and the carry ons. They somehow spilled Elizabeth's med all over. We had to call Dr.Wang ASAP to get some more shipped here. Oh we were so upset. They even checked my meds.

In Chicago before we left security also broke the top of Elizabeth's suction machine. Thank God Aleena's Mom brought us another one!!  For some reason they are high alert right now and have extra security again and checking everything.

Elizabeth did real well till we got home. She had a stat drop again and had an mucus plug. It took a little time but I got it out and her stats are stable again.

January 27, 2005

Its been a long month.

We went to Stanford and all was well. Elizabeth had gotten a EMG and it upset her pretty bad. By the time DR. Wang had seen her she had settled down but that evening of the 5th of Jan Elizabeth seemed to be nose flaring a bit and breathing harder than normal. So I put her on Bipap. Her stats were good but I just felt something was wrong but we did Elizabeth's normal treatments and she seemed better and slept well that night with her bipap.

The next morning we got up and did Elizabeth's treatments and she acted fine but she was breathing harder than normal I wanted to call and change to fly out the next day but Christen thought we just better get home because there was a bad ice storm coming later that evening and we did not want to be stranded in California and Elizabeth's stats were fine and she was smiling and laughing.

So off to the airport we went. We did an extra treatment at the airport and Elizabeth was a little cranky but her breathing was better. Her stats still good. We thought it was teething. So we boarded the plane and I was holding Elizabeth and as the plane took off I noticed Elizabeth nose flaring and her breathing was really intense.  Her pulse went to 180 and her ox level went to 72 I was scared to death. We got the head steward person to give us oxygen and they freaked. They asked for a doctor or anyone in the medical field to come help us. A fireman-EMT was on board and he looked at Elizabeth and said she was having trouble breathing also. Then Elizabeth's pulse ox would go up to 94 then back down and oh what a nightmare. I do not think I prayed so hard in my life. She was white as a ghost. The airlines would not allow us to use any of her equipment (Cough asst or bipap) to help her on board. Something about liability. I said she needs her bipap to help her breath and they refused me. I also said she needs her cough. Then the pulse ox just went totally out. It had been charged the night before we left so we do not know why. So this whole time I am doing chest pt and turning her, giving her oxygen, suction and praying the whole time.

When we landed they had an ambulance there waiting. They still refused to let us do a treatment. When we got to Christ Hospital ER we told them what Elizabeth had what her treatments were and please..... call Dr.Schroth. The ER Doctor refused saying she was not on staff.  Well, after us sticking to our guns threatening lawsuit several times and Christen almost attacking the ER doctor they finally listened to us and called up to Madison. The respiratory therapist let me do Elizabeth Cough asst,chest pt and suction and put Elizabeth on bipap. Elizabeth was stable and they said they wanted her to keep her in for observation. Her heart rate was 145-150 and her ox level was 98-100. We were in ER 7 hours. So she was taken upstairs and she had good color.  I gave her a cough and another respiratory therapist was watching and then I was started to do chest pt then suctioning her out and the respiratory therapist changed Elizabeth Bipap mask to one that covered her whole mouth ( I was freaking asking why?)and Elizabeth started coughing on secretions and the respiratory therapist stuck a nose  suction  catherator down her throat and the sections were so bad she choked and went into Respiratory Arrest. I kept calling her saying "Elizabeth its not your time please come back to your Nina and you have lots to do yet" She had her lung collapse  during that time. The doctors and nurses tried to get me out of her room and I said if you think you can move me go head and try!!" I do not know how many times I called her then she looked right at me through the bars at the end of her crib and her ox levels starting going up. She never did totally lose her heart rate. I was praying so hard then the color started coming back to her little face but her lips were so white. I think I was about to have heart failure.

I did do an inservice with about 20 Respiratory Therapists at Chicago Hope and taught them how to do treatments for Elizabeth. The doctors there were too over confident and would not listen to Dr.Schroth,Dr.Rock or me about leaving Elizabeth on Biped and other things. She was on oxygen and we were told she had been off and oh I had to argue with a doctor just about every day we ere there.  So we transferred to UW so Elizabeth would get well and she had but still has a little bit in her mid lobe to clear up.

There is more about our stay at Hope Hospital but its so long it will be in my next book!!

She was in the hospital for Jan.6-Jan.24.

She has been doing well since she has been home.

Now ... the bad news we probably will not be able to fly and Dr. Wang told us if we cannot make monthly visits Elizabeth will not be able to be in the trial.

We are trying to figure out a way. Its just affording driving there and how long it takes and looking at other options.

I am just glad My girl is back to herself!!

February 16, 2005

Elizabeth definitely has a rough New Year. She had a lung collapse in January, a bad mucus plug and hospitalized from Jan .6 2005-until Jan.22.2005. Then she was teething, then an infection and now she is having another infection. She is back on antibiotics starting today. She had some nasty looking phylum again this morning. I do not know what is going on this time. She did have a plug over the week-end maybe that is it. Its mainly in her throat now. I give her 4-5 treatments daily and again at 1 am -2 am another treatment. It seems lately my girl eats and  plays for an hour then treatment time.

She is getting stronger with her muscles and can do so much more. I just wish her body would fight all these infections she keeps getting back. She can hold her legs up and wiggle them back and forth, she wiggles her whole body in the tub and just a joy.

She is so happy and upset me she gets so sick with mucus all the time. It doesn't make sense. She was so good until her lung collapsed and she had respiratory arrest at Hope Hospital (due to incompetent hospital staff  for SMA Type 1 children). Maybe she just has to gain her strength back.

I guess I need patience.

We do not know when we go back to California but we hope Elizabeth stays well after being on antibiotics again. We just hope it will be soon. They have been truly wonderful trying to figure out the best way to get Elizabeth back to California.

We just take one day at a time.


March 26, 2005

Sorry its been so long for an update on Elizabeth but we have had a wild month yet again. Elizabeth was hospitalized March 7-March 23.

Elizabeth has not been back to baseline since before her illness in Jan.

Elizabeth had been sick off and on since Jan. and got really bad again and we could not get her ox levels up past the high 80s and had to call 911 to come get my girl. We had been in touch with UW for weeks and they kept telling me that I am doing the right thing and keep it up.

Elizabeth was intubated because her respiratory rate was up very high, her heart rate was in the 170's and 180's, her ox rate was in the 80s and we thought she was being transported to UW. UW was grounded thanks to the weather in Wisconsin. So Elizabeth was med flighted to St. Francis in Peoria. The doctor in charge of PCIU at St. Francis got the protocol from UW and promised to do the treatments. The respiratory staff there would not listen to us and was not doing her treatments correct after Elizabeth was extubated. So I talked to the doctor and he said they were understaffed in the respiratory department and there was nothing he could do and I was not to do her treatments.  Him and I went round and round. He said he could not give Elizabeth treatments every 4 hours only 6 hours. I could feel and see how much Elizabeth was struggling and I had Christen call Dr. Schroth and she told us to do the treatments ourselves and demand they let us do them if they could not.

I finally lost it after talking to Dr. Schroth and told the staff at St. Francis if they could not do the treatments I was going to after I saw Elizabeth's x-rays where it showed her getting worse. Her lung was full on one side and the bottom lobe on the other side. I told them I was going to sue them if they did not let me do the treatments or do them themselves the correct way. The week end staff listened to me and worked with me and in 24 hours time Elizabeth lung was almost clear again just from doing Elizabeth's treatments every 4 hours. The week staff of respiratory therapists were rude and did not do her treatments correctly. I am glad the week end staff listened to me. That Doctor kept sticking up for the week respiratory staff. I  had it!! That doctor was as pig headed as the one at Chicago Hope. The week end  doctor was a woman and so understanding and told me to do what I needed to do to get Elizabeth better.

 Elizabeth was life flighted to UW on Sunday. She did well on the flight but.. an hour or so she crashed after she got there. I think anxiety caused it . We were not there yet. When we got there 2 hours after she did and  she crashed twice on me again. I have a habit of when I stress when she is desatting I grab the cough asst and cough her.

The next day Elizabeth crashed in between shifts . I got the mucus plug out that was causing all the problems!! I myself!! Julia the nurse said way to go Grandma. Elizabeth never crashed again after that.

Elizabeth has scarring in the her top lobe that we do not know if it will heal. We hope in time it does.

Elizabeth seems better than she did when we left UW in Jan.

She is weaker and has lost weight but she seems not to have the problems she did have.

We are home now and have learned a lot with this last illness. Get her to UW ASAP and never let a doctor that promises to do her protocol ever touch her again. They do not understand SMA and try to take over and make her worse. 

We would like to thank Tammy (Brianna's Mom )for the wonderful visit and all the goodies she brought us. Thank you Laura for sending her!! Karen you are my rock and thank you and Andrea I am glad we have each other to vent and to exchange ideas. Thank you for the puppy and the balloons!! Elizabeth slept with the puppy and still plays with the balloons.

Stephanie Price thank you for your phone call at St.Francis and for giving me guts to turn off Elizabeth oxygen when Elizabeth did not need it. Thank you everyone for the prayers and emails!!

I am planning on going back to college this Fall and be an RT. There are not very many RTs in this area who know how to care for SMA kids. I know more than the doctors in this area on how to care for these kids. I do Elizabeth's treatments daily and I want to help other parents know how to deal with the respitory part of SMA and other diseases.


May 3,2005

Elizabeth has a cold right now but because of our experience and DR.Schroth's protocol we can care for Elizabeth at home.

Elizabeth was diagnosed just about a year ago and what a year it has been.  Elizabeth is still taking the trial drug under the direction of DR.Wang. She moves her legs back and forth and her hands are always moving, She can roll to one side on occasion. I believe with out this drug Elizabeth would of not been able to bounce back with all the illnesses she has had. She is also on amino acid diet. When she is sick I have to give her 65ccs an hour instead of her 180ccs every 4 hours. She is on treatments every 4 hours right now.

We have to go back to Stanford this month or Elizabeth will be out of the trial. She does very well on the low dosage she is on so she is vital to this study.

Elizabeth is having problems gaining weight after the last illness in March. We tried adding more oil to her diet but she can not tolerate this.

She had developed quit a vocabulary. She talks all the time. She refers to all dogs as "Pepper" and her favorite phrase is "What's up!"

She is a very happy child and loves her shows on the TV. Blues Clues ,Dora the Explorer and Little Bear. She actually talks to the TV when her shows are on.  Elizabeth is quite a remarkable child. Every day with her is such a joy.

I have been in contact with Heather Dunham "Kaige's Mom"and helped her get Kaige in the amino acid diet. He was #1 baby in the trial at Stanford for the trial Elizabeth is in for Type 1 SMA. Elizabeth was #2. The diet makes so much difference. It gives them energy and I believe help stop the progression also.

We have had a lot of help From Stephanie Price also. She has helped me so much with Elizabeth's diet and illnesses. She is "Hannah's Mom". 

We are going to be moving to the Florida area hopefully before winter if all goes the way we planned. Elizabeth cannot handle this IL weather. The cold makes her so sick. We were thinking about New Mexico but we have heard that area is not a good idea because of their lack of knowledge with SMA. 

Pray, Elizabeth is well enough to fly and we make it back to California this month. To take Elizabeth off the med would be the wrong thing to do.


June 18,2005

We returned from our CA visit at Stanford Thursday night. Elizabeth did wonderful on bipap on the flight there and home.

Got some great news and some bad news..... Elizabeth had her EMG(its called immuny test and done with pads and not needles) and for the first time ever in the study with a SMA type 1 she improved in strength in this same muscle they test. She was all 4s when she started the study a year ago which is unusual with type 1 and in Jan this year she dropped to 2 and 3s and now she is back to all 4s again. Dr.Wang said he has never had a kid get stronger in this muscle they test on the arm. They get worse or stay the same. So, she is doing very well in strength. A miracle!!

She is a "peanut" though and needs to gain weight and her white blood count is a bit low so she is off the med for two weeks. That is the only thing about this drug that scares me ...they have to be monitored so close because they can drop in their white blood count at anytime.

So, for the next few weeks Elizabeth needs to stay home and away from public places.

We also got to see the Millers. Aleena has gotten so much stronger too. She is moving her legs so well! She has us so excited for her !! It was so great to see them and they met Papa too.

We met Bailey a new 6 month old girl in the trial. Her parents have lots of questions and I hope they contact us. I thought I had talked to her mother before but I guess its a different family then I thought. They need the protocol badly!!
Pray, Elizabeth's white blood cells go back up fast. I do need not my girl sick!!

Aug7, 2005

Elizabeth's respiratory issues she has been doing extremely well for awhile. Dr.Schroth said if Elizabeth does not need treatments more than twice a day then do not do them. I have always done no less than 4 for many months.

Her diet has been changed again back to Tolerex and added food . I had to figure out that she could not do added fat but could tolerate added carbs. I had help from Mary Bodzo and Stephanie Price and with relief we have figured out what works...... Ahh relief! Elizabeth is gaining weight and is not  having the problems in the past with gastrointestinal issues. If I can figure out what to give her other than white grape juice I think her secretions would be a lot less. Its so hard to change her diet because she has reactions to so many things.

She loves out doors. Its hard to tell her she can not go out when its humid. Its been better this week-end and she has been out-side Saturday and today.

She has been showing signs that she has a mind of a normal toddler. She shows her temper, she talks all the time, she lets you know what she likes and does not like and she wants everything we have. She will ask "What's that?" and you tell her and she say "Ohhhhh!" She points when she wants something and we are trying to get her to say what she wants instead of pointing and shaking her finger.

Dr. Schroth is trying to get her a power-wheel chair. I can just see her in it.....I cannot wait. Elizabeth gets bored really easy and I think the chair will help.

Elizabeth starts speech therapy soon and sign language.

The diet issue has exhausted me.....I mean I was at point where I did not know what to do. She kept losing weight and cried when she ate. She was switched to Vivonex and at first she gained but there was too much fat for her and she cried all the time that her belly hurt. I have raised 4 kids and for me not being able to figure something out had me so stressed and upset that I was worried she would start failing and we would lose her. I am so glad that is over now.... and I finally got what works for her.

We have some of  raised money for travel to Stanford and Madison, WI for Elizabeth's medical needs by selling The Miracle for Madison bracelets and pins. It has also helped raise awareness in this area about SMA. "Believe in Miracles" is what is printed on the bracelets.

Abate here is going to help raise money for our trips to Stanford and Madison by a Pool tournament Oct.29.   Then next year they are having a fund-raiser for SMA Support and they hope to get a lot of clubs involved. I am so overjoyed at the club offering to help us!! 

 Next month we have to start paying for 1 plane ticket to go to Stanford and it was almost $500.00 for Elizabeth's grandfather to fly  in June to help carry Elizabeth's medical equipment. It costs us money now for motel, food, renting a car and gas to the airport and home. Imagine how much more for the plane tickets also. It scares me to think about it.

We will be going back to Stanford sometime end of this month I hope. Dr. Schroth has to release her. She wanted her to gain weight before she flew again. She was very worried about Elizabeth.

Keep Elizabeth in your prayers. She has such a loving spirit and we enjoy her every second of every day!!

"Believe in Miracles"


Sept. 7, 2005

Sorry, I have not updated for a while. We have had a lot going on. Too may things to explain.

Elizabeth is on breast-milk now with her tolerex and you would not believe the difference in her over-all health.

Many women have from Ohio have donated this milk to help babies and toddlers who need the breast milk to survive. We get the breast milk from the Ohio Breast-Milk Bank.  A lady named Georgia is an Angel and has done so much to help Elizabeth get the breast-milk!!  This is such a wonderful thing they have done for Elizabeth I cannot express the emotion I feel. Thank you ladies so much!!  To see Elizabeth doing so well makes waking up each morning even more special. Elizabeth is such a special girl. She is full of love and so very happy.

Elizabeth's lungs have improved, her breathing is so much slower, her bowel movements are normal and her over all health is so much better. I think its from the breast milk. This will also help her immune system this winter to keep away illnesses she had gotten last year.

We had such a time adding food to Elizabeth's diet. She would have reactions to everything we would add. I was so stressed trying to find something that worked.  Elizabeth just would not gain weight.

Kaige's Mom and I were talking about both Elizabeth and Kaige having problems with diet so we both decided we would try breast milk. Hannah Price's website had mentioned Hannah was on breast milk and how wonderful it was. So, I got our doctor to agree it is worth a try. Then Georgia helped us by sending it so fast and also wanted to help Elizabeth.

Elizabeth is gaining weight now and she just glows.

Elizabeth received a package from Kathi her step great Aunt from Germany today. We just found Kathi and I wish we would have met years ago. She sent Elizabeth a whole bunch of things. She has such a great heart!!! Elizabeth loved all the neat things she sent!! Thanks Kathi!!!! 

We go to Stanford Sept.21


December 4, 2005

Sorry its been so long updating.

Elizabeth has been sick for a week tomorrow. Really bad.... I think she has gotten RSV but I dunno. I have been doing round the clock treatments till last night. If I take her in to the hospital I will be chancing more illnesses or get her worse. Nothing they could do I am not doing at home.

She has finally started to bring up junk in her bad spot on her lung. She is not running fever  now but has to watched every second because she has almost choked twice on the junk she is bringing up......

She had a good visit at Stanford last month. She has gained weight and they upped her med again.

Hope you all had a very good Thanksgiving!!
Pray for my girl!!!


January 10, 2006

Elizabeth has been sick since last Thursday. What started out as 102 fever and a heart rate with the high of 197 is now finally just a little junkieness and a really "red hiney"

Last Thursday we could not get her off the bipap and DR. Hough let his nurse run out to the car and give Elizabeth a shot to bring Elizabeth's fever down and heart-rate. It took until Friday morning for her heart-rate to be lower than 150s. It was so scary.......She has never had a heart-rate that high and nothing worked to bring it down until we got the shot. DR. Hough is WONDERFUL!!  DR.Schroth office called as was very happy that our local doctor reacted in the way they did. We did the right thing. They said with a fever the heart-rate on these kids can get that high....... Then, DR. Hough started her on an oral antibiotic and the combination caused Elizabeth's hiney to get so red. I tried Nystatin with Destin,butt paste, blowing O2, everything everyone told us. I even upped her primadophlius and soaking her butt in the tub nothing worked...... I left her diaper open and that seems to have worked the best so far until Marla called us back and checked on Elizabeth and DR. Hough ordered some nystatin/triamcinolone cream and  it seems to have taken some redness away. Elizabeth has NEVER EVER had this kind of reaction or a diaper rash.

We are supposed to go to Stanford the 25th of this month. The appt will be the 26th I hope Elizabeth is able.  I hope we can get there.

I hate this IL. weather in the winter. It is so hard on her.

Christen and I both got sick too after Elizabeth and I feel better today and Christen acts like she is about over it.

We have talked to several families the last two months on diet and what we do for Elizabeth. There are several newly diagnosed babies with SMA Type 1.  I pray the parents will put their kids on the amino acid diet, correct protocol and pick DR.Schroth as their Pulmo Doctor. Its so important to learn as much as you can. Elizabeth is so precious without asking tons of questions and learning I do not even want to think about what could have been. So, many parents helped us. Laura Stants and Karen Slavik steered us in the right direction.  DR.Wang also by allowing us to be in the Stanford Study.

I thank God every night for the precious gift of Elizabeth. She is will be 28 months Jan. 29th .

Elizabeth also got to try her kid/cart with motor a few weeks ago and tried to run her Mama over and did run her Dad's foot over. They said she can take it home when we get a van or way to transport it (Which I do not know when that will be) .It stays at St.James with Poonam until then.

Hope you have a Happy Healthy New Year!!!!!!!! Pray for a cure in 2006!!!!!!

Feb. 7, 2006

It has been a hard winter for Elizabeth but ....... the good things is no hospital stays!!  She was sick the week after Thanksgiving and then again the week after New Years.

She seems to be doing good these days and has enhanced her vocabulary and talks nonstop when she is feeling well. She seems to be getting stronger this week again too.

Aleena Miller will be 2 years old this week!!  Happy Birthday Aleena!!!  We are so excited for her. We were supposed to be at Stanford this week but Elizabeth's Papa had a stroke last week with a concussion and we canceled. Soon as he has a clean bill of health and he is not so tired we will be going. Elizabeth is such a "Night Owl" because she waits up for her Papa when he comes home for work. He works second shift. It was scary seeing him the way Elizabeth and I found him last week.  It makes my stomach upset to think we could have lost him if we would not have reacted so fast.

Winter is just about over!! We cannot wait till spring!!! Its been a very long cold winter her in IL.

Hope everyone has a great Valentine's Day!!!

Feb. 27, 2006

Elizabeth has been doing very well. She got her RSV shot today and get this............

She is a pound heavier (Since last RSV shot a month ago)!!  Yeeeee Haw!! 

She was having bad secretions since last RSV shot and I figured out that some of the secretions were from the new vit I had put her on Schiff's. So after I took her off the Schiff's the secretions are so much better. She is just taking Kirkman's Vits now and her cal. citrate, extra Vit C. plus a few extra supplements. She is still on breast milk so that also adds to her supplement intake.

We fly out March 21st. this time for Stanford. Papa is doing well so we should have no problems getting there this time.

March 25, 2006

Elizabeth had started running a fever about 3 am Monday morning. It got up over 101 . I called up to UW and then in turn told us to call DR. Hough here. DR Hough and I thought it best that we get her on Zithermax ASAP. I had her on tylenol/motrin every 4 hours switching off and on. He said she was looked really good for being sick even though she was running a 101 fever at the time. Elizabeth was jabbering and talking the whole time. Her heart rate was at a few times got up to 160s 170s but mainly was running 130s -140s. That scared me. I had her on treatments every 4 hours till Tuesday when she got worse and me then I had her on Every 3 . She has been so sick. Her fever did not break until Wednesday morning. She has been on bipap most of the week also. She woke up Thursday morning screaming. Her diaper was dry (I had changed her at 4am last) and her belly was hard as a rock up past her belly button. Protruding out... We thought we were going to have to take her to ER. She has never been that bad before. I starting doing tummy curls first and it did not work. I ended up giving her a baby lax and moving her legs , sitting her up and FINALLY she started letting out all kinds of gas. Then a little bit of "poop" and then oh my gosh she was urinated so much she got pad soaked and me. I think being on the bipap so much causes her to get so much gas in her she cannot "poop" and pea. She was so relieved it was like she went from screaming to talking after the release.

She has a lot of junk coming up with IPV and coughs but heart rate is down. Thank God for her IPV .Her nose is stuffy and she starts blowing it for me to suction it out. Her heart rate is down and that makes me breath a bit easier. She slept all last night without waking up after 2 am and slept till 10am this morning. Her treatment this morning was productive and she seems to be getting better every day.

Prayers still needed she still is not over this virus.

Sophia Doebbert is sick also Prayers also needed for her and Lila . It sounds like the same thing as Lizzy.

We are very much waiting for Spring!!!

April 10, 2006

Elizabeth seems to be doing better this week. We had her Neuo visit last Thursday for MDA. The doctor was quite impressed with Elizabeth and is going to get her rolling on her new equipment. The motorized chair and new braces Yeah!!  About time!!! He wants to do another DNA testing for her. Yes, no doubt she has SMA but I think he is curious she is doing so well and 2.5 years of age. Its her diet, Resp. Protocol, study drug and her care that helps Elizabeth do as well as she does. So many parents have helped us along the way.

Elizabeth talks so much lately...... Her newest phases are "Stop it," "Leave me alone", "Outside Now". "Turn the TV On", "Pepper go lay down" and she always says "Please and Thank you." She is such a wonderful kid!!

I am looking forward to this summer!!  I plan on walking with her every day we can!! She loves to go for a ride in her cart.

I just wish she would get over her anxiety issues with nurses. Every time we go to the doctor she gets herself all upset and ends up with a mucus plug. I hear when they get older its not so bad.

We have a busy month this month. We see DR. Schroth soon also. Lots of appointments!!

May 8, 2006

Lizzy has had a heck of a day May 2 (last Tuesday)....... She woke up a few hours early and I found condensation like crazy in her bipap hoses. That has never happened that bad before. I had just changed the hoses on Monday and put a new water trap on. She was so raspy and full of mucus... Her voice was so hoarse and she cried when she tried to talk. Then, I listened to her lungs and she sounded like a freight train..... I was doing treatment every three hours and she crashed on me she dropped to 77 ox level. I was here at home alone with her when that happened....... I got her back up with coughs and tons of chest pt. Then did several coughs to get the junk out of her chest and air ways...... Got her back up then she would not stay over 92.  I was a mess but focusing on keeping Elizabeth focusing on me. When she loses focus in the past she crashes again. ........ Christen come home from work while I was working on her and she called Tim Price(Friend,parent to Hannah Type 1 8 years old, and he is an RT). His wife Stephanie and him said the reason she is so bad is because she had the water in her lungs from the bipap and doing neb treatments added to her distress I got her up to 94 and with each cough it went up. more. She bumped up to 96-97 and has stayed that way. I did not do nebs that day after that except before bed and she had pulmocort.....  I did coughs every three hours and that is what I have been doing the started her back on mucimist today Thank God. She has been on bipap since Tuesday. She had been maintaining 97-100 ox all day..... Upper right lobe sounded junky but I got a lot out with IPV. I have been getting yellow/green stringy stuff out of her lungs and she has been on an antibiotic since. I do not think it was all condensation.... I think she had a bad infection.

She is got bad again on Thursday Evening. She dropped down to low 90s but after several coughs I got her back up to 94-95ox Her heart rate has been pretty high until Sunday when It dropped back into the low 100s. Her ox level is 98-100 but she still sounds a little raspy but each treatment she is getting more productive.  She sees DR. Hough on Thursday and we are doing a chest X-ray to see if her lungs are clear.

She has not been this sick since a year ago last March. I though Feb was bad but ... no this was very scary. We are afraid we were going to have to medflight her to UW. She was safer at home than in Peoria Hospital at St. Francis because that hospital refuses to use the protocol we are on. They said they would last year then said they did not have the staff to comply with our wishes.  She is doing better and fighting the daytime Bipap.   As, I said string/yellow/green gunk coming out after every treatment but no fever now. She still needs prayers coming in!!

On a good note we finally got a van. The hospital here ST.James through Poonam (Elizabeth's PT and Director of Rehab) got a grant from the Mental Health Board to help pay for down payment and for insurance for a YEAR!! Allison Mossberg at Extreme Motors in Bloomington was an amazing help. We paid 10,500.00 for a 2003 Kia Sedona Fully loaded with 36,000 miles!! The wanted 12,900.00 and I told them we could do only 10,000.00 and we compromised at 10,500.00!!! Its a dream come true!!  Extreme Motors in Bloomington, IL

Aleena Miller is at UW in PCIU and doing well but still intubated. She is on room air and still having some thick secretions.  She is in good hands up there. Prayers for the Millers too!!


Aug. 6th, 2006

Getting out of this IL weather was a  welcome relief  this past week. I was worried as Lizzy had a mucus plug the day before we left. I think it was just the heat. Even with air conditioning here was a little relief to this agonizing IL heat 100 degree weather this past week. It was not good on me so we all can imagined how it effected Elizabeth.

Security was high at both Chicago O'Hare and San Francisco airports so it took a bit of time to get through both but we had always go a few hours early. We always do a treatment before we leave the airport.

Elizabeth had a bit of a problems during the wait to take off in Chicago because the plane was so hot but after bipap and watching her close she did well respiratory wise . When we landed she had to have a treatment(neb, chest pt and cough) right away. On the plane she was a stinker. She was whinnying the whole time and  taking a  wooden coffee stirrer and poking the guy in the seat ahead of her. She is definitely going to be 3!! She did not want bipap on. My angel  was ornery this trip!!  On the way home she slept on my lap with bipap on the entire time.

Care-A-Van(Lucille Packard Service) was right there waiting when we got out the door in CA. Wow about service. The people that donate their time to pick us are so wonderful!! Oscar for Housing just goes above and beyond to help us!! I do not know what we would do with out there help!!   Maria and Beatrice are just so wonderful helping us with rides also!!

We got to the motel and we were totally exhausted. I had to work on Elizabeth and give her an extra IPV treatment.  She was very raspy from all the fits she had thrown on the plane by holding her breath. Actually she had more treatments this visit then ever in CA.

Then a we heard a knock at the door! It was Missy and Ian!! Ian is such a doll. He is 9 and is a type 2/3. Ian is walking !!!  He calmed Elizabeth down and they played together. We have never met them before but I have talked to Missy" Via Internet ." It was great to finally meet them and see Elizabeth and Ian together.

The appointment

Elizabeth saw her nurse and freaked.....  her heart rate went high to 162 and o2 dropped. We worked on her and by the time DR.Wang saw her she was fine. Heart rate was 112 and o2 100%!!  Can you believe how fast she went back to normal?  Elizabeth and her anxiety issues....  She got upset  again during the blood draw but soon as the lab person put a band aid on Magenta (present from Ian) she settled down. Geeeesh that scares me every time she gets that upset.

 I  knew no news people from Fox or Chicago Tribune reporter was going to be there because Tony had told me the day before we left they decided not to do the story yet.  It was disappointing but.... you know as long as my girl made it there and back safe and sound that is all that counts. MR Dicks news media relations manager for Stanford was there taking pictures and Elizabeth hammed it up for the pictures. He was very nice and excited Elizabeth was doing so well also.

So, the visit was a success. Elizabeth is 19 pounds 15 1/2 ounces and has grown again to 35 inches! So she is doing well. She was upped on her medicine again Everyone says Elizabeth looks so good!!  Elizabeth is still DR.Wang's "Star Patient" for the type 1's. He keeps saying she is doing so well!!

I guess we fly to CA until May 2007.Its hard coming up with the money each time we go but because of the success of the drug and what it has done for Elizabeth by stopping the progression we find a way.

Elizabeth just was not herself the whole trip it seemed. She actually was not feeling good until today. She would drop to 96-97 ox level until today. I have been doing extra treatments on her all week. Today, she is more herself and ox level is great. She was very sore in her legs also.  Maybe the ride in the car seat so long?We need the EZ-on Vest which I hope gets approved for travel

 I changed her bipap mask again . Emily Green sent me two Respironics small petite masks!! Yeah!!  Thank you Emily!! The gel mask caused bad eye irritation. Elizabeth woke up several times during the night crying and  wanting the get mask off . She still will not wear the Nasal Aire mask.  Elizabeth's old Respironics mask was getting too old and I think leaking air.

We leave  we suppose to leave Friday for UW and a visit with DR. Schroth but they called and want us in a day long muscle clinic on the 16th instead of This Friday so we will be in Madison,WI 16-18th . We will be staying at the Ronald McDonald House in Madison.

Christen was asked what was so special about this trip to Stanford by a news reporter (the tribune) and the answer is every trip to CA is special. Elizabeth is a "Miracle". We thank God every night she is in our life.  Understanding this disease is understanding why we say this. We leave again around the middle of Sept for Stanford again.