May 30, 2002  Had to put this in...yeah it is Lily's first birthday.  This is a huge milestone for a child with SMA type 1 and I am so thankful for this.  She is doing great since her surgery....thank God.

May 10, 2002  It has been 2 weeks since Lily's surgery and I am amazed at how great she is doing.  She is recovering great and we are very impressed with how well she handled all of it.  We are so very thankful to have gotten it done and know she is doing a lot better because of it.  We have had no episodes since the night after coming home (which really that one was my fault anyway).

May 2, 2002  Ok, we had another episode but it is really my fault.   I left the room for a matter of moments but didn't suction her before I walked out which is not good because he secretions are thick and hard for her to get out on her own sometimes.   I left to get a drink and her alarm went off and she went down into the 30's but I quickly got her back up again with suction, cough machine, oxygen, and of course bipap.   She is doing fine again and I will always suction her before walking out of the room for anything again. 

May 1, 2002 Yeah we are home!  Lily is doing great and did great on the fight stating 99-100% the whole time.  We rode in an Ambulance home and it is really nice to be home now.  We are letting her recoup now.  She is doing great and is happy to be home now.

April 30, 2002  Happy 11 month Birthday to Lily!  No medflight today but for sure going home tomorrow.  She is doing great and is up to 35cc's an hour now.

April 29, 2002 Ok there is talk of us going home tomorrow if they can get the medflight arranged.  Lily is back on her feeds at 30cc's an hour now.  We are getting residuals that are not so hot but not bad really...we just have to get her stomach healed up.  She is feeling a lot better too, she is playing and smiling and making faces for all the nurses.  She is off bipap too except for night and naps.   She is doing fantastic.

April 28, 2002  An even better day and we can see she is starting to feel better too.  There is even talk of us going home pretty soon. 

April 27, 2002  They came in a 6am to do her CPT and I was a little upset since she had just had surgery the day before so mom came in to sit with her for a while and let me get some sleep in the family waiting room.  Mom said they did get a big plug out of her at 6am so maybe it was good they came in and did CPT then they gave her another dose of the tylenol with Codeine in it and she seemed to sleep a lot better after that.   Later on during the day she began feeling better but we still didn't move her a lot and just let her watch her movies all day.

April 26, 2002  6am they came to get us and by 7 am she was in surgery.  I did go back to kiss her before they started anything then left.  She was back up in her room by 9am and they immediately began working on her to get her off the vent.  It was very scary for to see her on the ventilator (reminded me of Nathan) but they are awesome in New Jersey and had her off of it within 2 hours and onto bipap.   She kept fighting it and crying and gagging with it down her throat so they said they would take it out and she did great just like I knew she would.  She had a rough day and was in and out of it most of the day.  When the drugs began wearing off they put her on regular tylenol which was not cutting it for her.  The finally gave her some with Codeine in it and that helped but we did spend a restless night with her waking up and crying and moaning a lot during her sleep. 

April 25, 2002  Ok...I awoke this morning to my mom standing over top of me (I had finally gotten some sleep while mom stayed in the room with Lily) she was telling me Lily needed me, she was having an episode and the nurses didn't know what they were doing.   I rushed in to see 2 nurses standing over top of Lily suctioning her out but moving so slowly, I looked and saw she had thrown up and I saw her heartrate shooting down quickly so I knew her O2 would soon follow so I yelled at the nurse to go and get a doctor and I grabbed my in-ex and attached the oxygen to it and began working on her.    The doctor rushed in and saw exactly what we have been dealing with.   She crashed down into the 40's and that was with oxygen on her...she had a series of 4 episodes.  It didn't take the doctors long to arrange to have her medflighted out to NJ that day.  We arrived in NJ around 6pm. and got settled in.  We were scheduled for surgery the next morning at 6:30am. 

April 23-24, 2002  Still in Louisville waiting and waiting.   Nothing is being done.  I finally did get to talk to Dr. Bach and Dr. Bethyl and told them what was going on.  When Dr. Orman talked to Dr. Bach they both felt it was all happening because of her bipap pressure filling air into her belly so they turned her pressures down to 12/2 which to me is unacceptable.  We couldn't change it all in the hospital.   I felt like nobody was listening to me about what was going on so I finally called Dr. Bach and spoke to him myself to tell him what was going on.  When I finally got what was happening across to him first hand from me he immediately said "severe reflux".  Finally a diagnosis so after talking to him for a while he said he was 95% sure that is what it was and to call Dr. Bethyl.  I spoke to Dr. Bethyl and he agreed and was 100% sure that was what it was and the only thing to help her was to perform the surgery called Nissen.  So I went out and talked to Dr. Orman who said we had to set up a reflux test.  Ok...so on the 24th at 8am they took Lily down for the test which consisted of them dumping 2 oz. of her formula with a squirt of this stuff in it so that on the scanner it would show where the formula goes.  Well, upon dumping it into her g-tube within 30 seconds it came out her nose but it was never documented and when they finally got the test read it showed mild to moderate reflux.   They told me it didn't warrant for a surgery to correct it.  I was upset!  

April 22, 2002  Ok, this time we stayed.  Lily got up first thing in the morning still on bipap and began the throwing up again and de-satting.   This time I was prepared and had the oxygen hooked to the in-ex already so all we had to do is turn the oxygen on so she didn't really crash but would have if I had not been right there taking care of it.  This time they kept us (thank God) and we told them we needed to get to New Jersey.  They did nothing but talk, send doctors in who did nothing, and nurses that couldn't take care of her.  It is very frustrating....Dr. Orman is a good doctor but doesn't know anything about SMA and even through she is in touch with Dr. Bach (only because of us) I still feel nothing is being done. 

April 21, 2002  Well, once again it was a horrible day and this time I was very scared.  Brian had left to get some gas for the mower and Lily once again vomited and de-satted only this time she went all the way to 0% and her heartrate was dangerously low and she blacked out on me.  I rushed her to the in-ex and was so nervous I couldn't seem to get anything to work right.  I was watching Lily die right before my very eyes and I couldn't get the oxygen thing on the in-ex to help her.  I finally got it working and began working on her and she was not coming around and I began screaming for Brian hoping that he would hear me when he pulled up again.  He did happen to come in and check on us instead of going right away to cut the grass, he called 911 and they came out again.  I had her up in the 90's by the time they got there again and we got her loaded up again and back to the hospital.  Once again we spent hours there and they released us again.  Lily was not doing well and I was very scared but I couldn't make them keep me.  This episode really scared me very badly and shook me up.  I thought for sure I was going to lose her and am so thankful that God has angels all around her. 

April 20, 2002  Once again Lily is having trouble and this time it is different than before.  She had a horrible episode today, vomited, and de-satted very badly and this time her numbers have not come up very well.  We finally got her back up into the 90's but she is hovering between 94-96% the lowest she has ever been and it seems like she isn't bouncing back like before.  We called 911 and they came and said her lungs were clear and we sent them home but later when she had a mini episode again and her stats still were low we called 911 again and took her into the hospital.  We were there forever and ended up being released back home where we promptly went to sleep.    I continued to wake up and check Lily and even on bipap her stats were hovering around 96% which is very low for her but there was nothing I could really do.   The doctor in the ER said she had a slight ear infection and it could be causing the problems..I am not really happy with that answer but I had nothing really to counter it with. 

April 15, 2002  Ok...it is official, teething is hard!  We have not had a good night of sleep all week and tonight when I felt of her gums she is not only getting the one tooth she is cutting another tooth and you can just feel the tip of it as well.   She is getting her front 2 bottom teeth.  I guess that is why she is being a bear and having trouble sleeping and that her heartrate is higher than normal.  

April 12, 2002  Another "episode" of throwing up and de-satting but not as bad as usual.  Her lowest was upper 60's but Brian (daddy) had a hard time getting her above 90.  I was out for the afternoon and left her on bipap for daddy when he called me and said she was crashing and throwing up.  I flew home and she was at 84% when I walked in (beating the Ambulance) and began to inex her using oxygen and suctioning, in-ex, suction, in ex, suction.  When I raised up her shirt her stomach looked like she had swallowed a basketball.  I believe that was her reason for throwing up because the night before she had tons of air from her bipap as well (more than normal) so it must be a growth spurt of some sort.  I let the air out of her belly and in-exed her some more to make sure her lungs were clear and she was back up to 100% on and off oxygen.  We let a man with the Ambulance (can't remember what they are called) listen to her lungs and he said her upper lungs sounded junky but when I took her off bipap and listened to her lungs upper and lower lobes they were clear and had good air flow.  We didn't take her to the ER and will make sure she has extra in-ex, CPT, and airing out her belly.  On another note Lily is getting her first tooth.  It is on her lower gums in the front.  I can feel just a little tip of it (sharp) coming through her gums so that is part of her non sleeping problem.  Extra Tylenol....

April 10, 2002  Lily weighs 15lbs. and 13oz. and is 28 inches long.  She had been up to 16lbs. before she went through the week of episodes and throwing up.  She had gotten down to 15lbs. and 6oz. so she is up from that. 

April 9, 2002  Another week of no episodes.  She is doing great and we have a great schedule with her.  Her sats have been wonderful usually at 100% off bipap.

April 1, 2002 We started Lily on Tolerex instead of Vivonex. 

March 31, 2002  A whole week with no episodes!  She has done awesome and has had great numbers.  We really do think that she had some atelectasis and that the weekend on bipap helped her.  Also she is having to be on bipap for at least 13-14 hours a day.  She goes on at 9pm and comes off at 8:30am and then goes on in the afternoon for at least 2 hours.  She is doing well with this and I think it will make her feel a lot better.

March 24, 2002  Lily is doing great.  She handled being on bipap great and it seems to have helped.  She might have had a little atelectasis (areas of collapse of lungs air sacs) going on. 

March 22, 2002  Something is wrong with Lily..we had another horrible day of de-sats and ending once again with her going so low and she was so unresponsive that I considered taking her into the hospital for observation.  The bad part was that her Pulmonary Dr. was on vacation and he is the only one who knows what we would want done with her.  She was once again throwing up and all that.  We ended up staying home and putting her on bipap after talking with a doctor in New Jersey.  She is going to stay on Bipap for most of the weekend around 20 hours or so a day.  She is also on a continuous feed as well. 

March 20, 2002  After last night in the ER we had a hard time decided whether to take her to Dr. Bond or not but decided to do it.  She had her old bulky g-tube changed out to a Mickey Button which is wonderful. 

March 19, 2002  We seemed to have gotten to be experts at Lily's episodes but sometimes it does throw us for a loop.  She has been having them with more frequency and we are not sure why.  Tonight she de-satted while throwing up badly and her oxygen level went to 0%.   I had a hard time getting her back up and responsive.  We ended up calling 911 and taking her to our Local Hospital for chest x-rays because I thought for sure she had aspirated the formula into her lungs.  They were clear and she was fine when we got into the ER.  We took her home and did extra therapy's there. 

January 19, 2002  Lily has had her first "episode" which means she de-satted down pretty far.  We ended up in the ER because we had no clue what to do.  We coughed her and put her on bipap but we don't have Oxygen here (which is going to change...we need it here).  We decided to have her lungs x-rayed to make sure they were clear.  She was sitting her her borrowed Kid Kart when this happened (Joanne and Rob Forstall were here at the time).  I think she just got choked up and we had never had to deal with that..our first time.  Her lungs were clear and we got to go home.  She was smiling and making eyes at all the ER docs.  She did great! 

January 8, 2002  I have begun to notice she is losing her swallow.  She has been g-tube fed for a while now but she could still handle her own secretions but it seems as if it is getting harder and harder for her to handle them.

January 4, 2002  Lily has a new machine to use now, a Cough machine.  It will help to expand her lungs and keep her lungs clear.  We have begun to use it with her, she hates it but she needs it!  We have started her settings on 30/30 but will quickly work up to 40/40 which is where Dr. Bach says it needs to be.

December 26, 2001  Lily has her first cold, she is handling it well with extra bipap.  We do not have the cough machine yet but we are suctioning her as needed and doing CPT. 

December 4, 2001  This is Lily's first night on bipap.  She handled it well.  I put it on her at 5 am because I saw she was beginning to have a harder time breathing. 

October 24-28, 2001  Flew to New Jersey to have Lily's g-tube placed by Dr. Bethel.  She was seen by Dr. Bach as well and he seemed to be disappointed with Lily's strength compared to a month ago.  We had the g-tube placed on the 25th and it went very well.  It was done without having to put her under and Dr. Bethel has done this to many of our kids.  Lily still was able to swallow but we were doing this as preventative practice.  She did very well and didn't seem to be in a lot of pain.  We are very glad we had it done in New Jersey in a hospital that is used to dealing with SMA children.  She did throw up a couple of times but was ready to go on that Sunday the 28th.  We are glad we had it done when we did too because she did seem to be eating less and having a harder time with nursing.  She refused to take a bottle and only wanted to nurse.  She was almost 5 months at the time.

October 12, 2001  Our first Visit with Dr. Morton Lily's local Pulmonary Doctor.  He agrees with us about Dr. Bach Protocol and using bipap, cough machine, etc.

  September 6, 2001  First Visit to Dr. Bach in New Jersey to have Lily evaluated and learn about the Bipap, Cough Machine, etc.  Visit went very well and we are very excited to find ways to keep Lily healthy and happy.

July 8 , 2001  Lily was diagnosed as having SMA despite CVS testing.  It was done via blood sample.

May 30, 2001 Lily was born scoring 9/9 on apgars.   Healthy, kicking, and screaming weighing 8 lbs. and 11 1/2 oz. and 18 1/2 inches long.  She was born at 1:27 pm. by C-section. 

December 23, 2000 Genetic Test came back negative for SMA.