*Lily's Medical Journal*
August 17, 2006- Can you
believe how long it has been since this has been updated? Finally I
have the program I need to be able to update (and thanks to MJ for making
this such a cute-girly-girl journal place).
Not much has happened, Lily had a great winter this past winter of 2005-2006 with not even one sniffle or cold, it was amazing! She has had her Dentist Appointment for the year in June, and it was great. Her teeth...what teeth she has, are healthy. There will be problems in the future because her mouth isn't big enough for all her teeth but we will deal with that when the time comes. She is missing molars, they are right under the gums but just not coming through....probably from lack of chewing...but they are there. They did an X-ray of her mouth and her top front 2 teeth have no roots so they are ready to go at anytime (hopefully they will hang on up in the gums) with 2 permanent teeth right behind them. This past winter/spring she has lost a total of 4 teeth (yes, the tooth fairy is broke), all bottom teeth but her already has her permanent teeth growing in from the middle teeth. Anyway, her teeth are healthy, no plaque and they look good.
She also had her yearly visit with her Pulmonary Doctor, Dr. Morton, and things looked great there too. He is so impressed with her O2 levels, her breathing rate, and just how she looks in general, so we will see him again next year!
She had her 5 year vaccinations as well in June so she is up-to-date as well. Dr. Canby said she looked great! She weighs in at a whopping 38 pounds now and is approximately 44" tall give or take, she is hard to measure. She is still on the chart for everything, for her height she is in the 75th percentile and in the 5th percentile for weight which is good!
I need to get her into an orthopedic doctor to make sure scoliosis isn't an issue (which I don't think it is..yet) but that should be it for a while. Hopefully I can get her in before cold and flu season because after that it won't happen until next year.
That is it for right now, hopefully I can keep up with things now but you never know. No news is good news though!
July 21- Today was Lily's annual Pulmonary Visit with Dr. Morton, the day before we had to go to the hospital for X-rays and a CBG (Capillary Blood Gas) but for whatever reasons they did send the results over to Dr. Morton in time for our visit. Anyway, things went very well, he said her lungs sound great, heartrate and O2 levels just great, she looked good, etc. Don't need to see him again until next year. He did change our script of Mucomyst to Pulmozine (spelling???) and will give us a script for Pulmocourt (spelling?) as well for the winter, just in case. Everything went well.
June 24- Lily had her first eye appointment today, it went well (check out her June Journal for the complete update). She is going to start with a patch over her left eye to try and make the muscles stronger (she has a lazy eye) and she astigmatism, she will be getting glasses tomorrow. She won't have to wear them all the time unless she wants them but she will wear them for school and other things like computer work and probably even TV time.
She was also weighed on Wednesday and she has lost a little bit of weight which is the first time she has done that. She is now at 29.8 right now so I will have to work on the diet and see what I can do. I am not stressed out about it, she has lost less than a pound.
Everything else is going well, she has a Pulmonary Doctor visit at the end of July and I am going to try and get her into an Orthopedic doctor as well just for a baseline check up. Nothing is wrong with her back or anything but it is probably time for her to see one anyway.
May 6- On the fourth Lily had her first ever dental appointment and she did great with it. Her teeth are in good shape and the only problem is that some of her bottom front teeth are a little loose thanks to her binky while on BiPap so I am taking it out of her mouth once she falls asleep to keep the pressure off of the teeth. I am going to have to keep an eye on that but other than that her teeth are in good shape and clean. She did great with the dentist and the dentist was wonderful and very nice. She is still handling her supplements very well so next week I will bump up her Carnitine and Co-Q 10 to where I want it.
April 17- She has handled the supplements just fine so I upped her Carnitine to 250mg a day (yes, I was going to wait a few weeks but she was doing so well with it I decided to go ahead). I am going to wait until after Florida to add more Co Q 10.
April 14- So far so good with the supplements, Lily does have some extra secretions but again we are able to manage them and they are not overwhelming her at all. I will wait for a few weeks before I up the dosages on both of the new supplements.
Another thing I have failed to mention is that back at the end of January I added in a supplement called Cytolog (www.cytolog.com) to help build up her immune system. I used to give it to Lily when she was very little but didn't keep up with it. After how sick she was this winter I decided to add it back in after talking with a few of the other mom's with older kids who use it. She has done well with it and I do believe it has helped her, a lot. At least she hasn't been sick anymore, and all the information on the website I posted is so positive that I plan on keeping her on it forever.
April 12- Lily seems to be doing ok with the Actyl l-Carnitine, for the first couple of days we had some extra secretions but I am able to manage them. Today I also started her on Co Q10 which is another supplement that gave her horrible secretions when I tried it even on a very small dose so we will see how she does with it. She is only getting 15mg a day right now but I will slowly work her up the the recommended dosage.
April 9- Restarted Lily on the Acetyl-l Carnitine. Every time I have tried to add it in her diet she would get a lot of extra secretions and seemed to want to choke alot. I was a little nervous to add it back into her diet again but I know she needs some so I started at 125mg per day.
March 25- Wow, what a winter for us, sorry this hasn't been updated at all but I will do my best to update it now. Last entry was November 10 and yes, she did have strep not only her but me as well (she did better than I did with it!), we got that cleared up then a couple of days after Thanksgiving Lily started the same symptoms, I took her into the doctor and sure enough she had strep again and a few days later I did too. Grrrrr. We got that cleared up and about a week into December Lily started not feeling well again and it ended up being about a 2 week sickness, pretty bad for her really. She was on her bipap for almost 2 weeks and wouldn't come off of it and ran a pretty good fever as well. Right before Christmas she started feeling better finally. The second week of January I started not feeling well and before long I couldn't breath and I ended up having Walking Pneumonia, of course a few days later Lily started feeling bad as well and ended up being sick for a couple of weeks, seriously sick. The doctor started her on Antibiotics when I was sick with pneumonia so I think that helped reign it in somewhat but it was a long couple of weeks with her feeling pretty rough. She has been healthy since then thankfully.
After her illness in January she was weighed and was at a whopping 30.4!
November 10- Lily has her first 'bug' of the season right now. She is running a fever in the afternoon's and evenings, I am calling her doctor tomorrow just to let them know what is going on and I am wondering if she needs a strep test to see if it is strep throat. She doesn't have any cold symptoms at all so we will see. ~~~~ Lily did get her Flu shot on the 28th and did fine with it, no side effects or anything.
October 17, 2004- I weighed Lily today and with all of her weight gain I decided to take her calories down a bit. She is getting a little more free water and a little less on the calories. It looks like my girl just doesn't have a problem gaining the weight and I am not comfortable taking her down on her calories any more than I have. She looks good and healthy that is for sure. Her weight is now 28.5 lbs a little up from last time so I think this is a good mix for her. We go on October the 28th for her flu shot which has been a NIGHTMARE to try and get for her. I called her doctors office to set it up and they told me that they couldn't give one to her, it is being reserved for Medicaid patients WHICH SHE IS ON MEDICAID but because it is not her primary insurance (she has Humana through her dad) they couldn't give her one which makes NO sense at all being as she is high risk! Usually her doctors office is very good but this is an issue I am not happy with at all. I called on Friday to raise cain with them BUT we have an appointment with the Health Department on the 28th anyway. I am still going to express how unhappy I am with them but thankfully she is getting her flu shot. Unfortunately I can't receive one (I am not high risk even though I am the primary care giver) and of course my parents can receive one either but at least Lily will have one. It is still a little upsetting that I had to dance through hoops to get her one and I am not thrilled with having to take her to the health department but I am going to call and express how important it is to get her IN and OUT as quickly as possible due to the germs there. *Sigh* I wish I could get around taking her there but I suppose it isn't any worse than taking her to the doctors office for the most part.
September 13, 2004- We had a doctor visit today with Lily's doctor, just a check up before the germy season sets in. Lily is now 37 1/2 inches long (give or take an inch because she is hard to measure) and is 27.12 lbs. She is in the 25th percentile for her height and weight which is good for her. She is short, but so is her D.A. and I am not a giant myself, just average. Dr. Canby said everything looks great, she was very impressed with her teeth and how good they look. Everything sounds and looks fine so it was a 2 thumbs up visit! I am still going to make an appointment with a dentist and an eye doctor just to have them as well. So thinks look good from the medical standpoint! YEAH Lily!
August 4, 2004- Well, back to updating the Medical Journal! I guess you figured out she came through the cold in 2002 from my last entry just fine right??? Lily is as healthy as any 3 year old out there except for the SMA of course. As of August 2nd she weighed 26.10 and I need to measure her. We had a Pulmonary visit with Dr. Morton in May and he gave her 2 thumbs up! Her respirations (how many times she breaths in a minute) was AWESOME, her lungs are great, really he was very impressed with her and how well she is doing considering what she is dealing with. When we had our first appointment with him I think he was a little doubtful of what I wanted to do with Lily and while he supported us and what my choices were I do think he wasn't sold on it but he is believer now and thinks she looks great! She is growing great, looks great and makes it through illnesses like a trooper. She has averaged about 2 colds a year so far and has made it through them with flying colors. She is still on her diet of Tolerex, we still use the cough assist religiously, she uses her bipap for about 12 hours a day, mainly sleeping (she is on it continuously for 12 hours at night, when she wakes up she stays on it for a bit to get in her 12 hours) then she is off all day UNLESS she wants it OR of course if she is sick. We do a lot of traveling around, going shopping and all that. Of course I suction, and she is on a feeding pump through the day (she eats via the pump for a little less than an hour 3 times a day then continuously overnight for 10 hours). She is doing great and looks great. We now only have to go to the Dr. Morton 1 time a year, she go's her doctor a few times a year, and will now start going to the Orthopedic Doctor (for her AFO's) every 4 months. She looks great and is doing great!
Sorry for so many missing entries!!! We will resume NOW and lets hope I can keep up with it this time!
November 24, 2002 Ok, just when I thought
we had the cold thing whipped she starts the coughing.
It started last night and she was coughing so much she just couldn't catch
her breath and couldn't hold her O2 up and her heartrate was super high for her (O2 was in
the low 90's and heartrate as high as 180) so onto bipap she went last night WAY before
bed but she was happy and it took care of the coughing.
Today I had to rush home from church because Brian couldn't get her to quit
crying and coughing so I ended up having to put her on Bipap which is where she has stayed
all day other then to do her cough machine. She
seems happy and content on it watching her movies so that is good. She knows when she needs her "pap" which
is what we call her bipap machine. Her O2 on
her pap has been 100% so I am confident that it is nothing in her lungs just throat
irritation of some sort. I am still doing the
cough machine more than normal to clear the secretions but other than that she seems to be
through the worst of it except the coughing. We
are praying she is over this very very soon.
November 22, 2002 She is doing great and is feeling a lot better today. She has felt better each day and is able to stay off bipap most of the time but is taking long long naps (unusual for her).
November 19, 2002 It is official...Lily
has her first cold of the season and the second in her almost 18 months (yeah). She started last night with the cold, we were up
most of the night coughing with the machine and rocking in the chair. She is maintaining her O2 on a off bipap between
98-100% so that is great. She is fussy today
but holding her own.
June-November 2002 Ok I have not updated in FOREVER but really things here couldn't be more smooth with Lily medically. She is doing fantastic and is growing more and more. She doesn't do much in the way of movement BUT she is very strong respiratory wise and I am proud of her. She has had minimal problems and NO major episodes since her nissen surgery in April. It is amazing the difference since then WOW. I will try to keep up better with the journal since I know people come to read about Lily and learn about her.
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
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
, 2001 Lily was diagnosed as having
SMA despite CVS testing. It was done via
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.
November 17, 2000 Had CVS test done on baby to determine if it had Spinal Muscular Atrophy like brother Nathan had.