*Lily's April Journal*

April 2002

April 1  It is getting closer and closer to warmer weather!!  It is actually supposed to be very nice tomorrow so hopefully we can get outside for a while in it.  Well, another great day today for Lily and myself.  She kept great stats, no choking episodes, very little suctioning needed done, and she didn't spend all day on bipap either.  She did great and seemed in great spirits all day long, even for her PT Beth!  Beth was very impressed with her legs and how straight they have gotten and how much more loose her hips are now.  We have been stretching her hips out but I attribute it to the rice socks she now has wherever she goes.  It really keeps her legs straight and keeps them from frogging out.  Thank God Liz told me about them!!  Lets see...nothing exciting has happened today really which is wonderful!  She had a good day and hopefully tomorrow she can get off her feeding pump more often.  Today we had her on the pump alot still but am weaning her off of it slowly.  Her rate is more and then I let her off for an hour between each meal which means that she is fed from 9pm to 7am then off for 2 hours that time, then back on her pump for her breakfast from 9am then off again at 12pm.  On the pump again for lunch at 1pm and off again at 4pm.  Then her dinner is from 5pm to 8pm then we start back again.  Tomorrow I might try and give her a few more breaks from it and increase her feeds a little bit more.  Hopefully she can get back to her normal schedule again soon.  I don't want to rush her though so I am taking slowly.  I am trying to get her into a schedule now so that we can have somewhat of a normal life again.  She is wearing the bipap more than she was before she started her episodes last week because I think that part of the problem was she didn't spend enough time on it getting that wonderful break and if the weekend and today is true than that means that is true...she needed more bipap time.  When you don't go to bed until 11pm and get up at 8am you just don't get enough of a break!  She needs it more so we are putting her on it from 9pm at night until 8:30am then she has to wear it for 2 hours through the day too.  I am glad she doesn't mind wearing it, she seems to do really well with it on.  She can still watch her movies and I don't' make her go to bed until she is ready (I know, I know she is rotten....but I don't mind right now).   Well, I hope that everyone had a wonderful weekend like we did and that this week will be wonderful for everyone too!!!  Better get the Bipap queen to bed now...it is going on 11!!!!

April 2  Well, another WONDERFUL day!  I just love it when things go great!  Lily was perfect today, she took a wonderful nap, no fussing about anything and most important...NO EPISODES!!  She spent her allotted time on bipap today..actually more then I wanted her to but that is ok.  She took a nap from 2:30-5:45!  I like those early afternoon naps too.  Her stats never went below 99% unless she was being suctioned so that was good..and even when she was being suctioned she didn't go below 92% so that was good too.  I love boring easy days like this...oh yea she started on a new formula too and so far so good with it.  She is tolerating her feeds too and everyday I have upped it a little bit so hopefully by next week we will be back to "normal" with the feeds.  Oh yea, I got up the morning and her upper right side gum was swollen so I think she is doing some teething too.  She chewed alot on her Gumby today and I upped her dosage of the Cytolog (it helps with inflation and is good for her too....actually it is good for anyone..sometimes I take it) so now she gets it 4 times a day right now.  Her legs are looking great too and I have been stretching her hips a little more than usual too so hopefully that is doing her good too.  Well, I guess that is it for today...we hoped to go outside for a while today but it was way to windy and now it is supposed to get cold again tomorrow...ugggg when is spring going to get here????  God Bless and thank you to all of you who faithfully read our journal!!  

April 3  We sure are getting used to these wonderful days!!  Lily had a great day again, she slept in her crib again all night long and did great.  I don't really have much to tell..and that is great!!  I am very sleepy so I think I will go for now....Oh yea..Lily wants to say something....I want to wish my boyfriend Colin a very Happy First Birthday!!!   I wish I could hug and kiss you but for now I will just have to send you XXXXXXXXOOOOOOOOO's!!  You can visit him at.... www.our-sma-angels.com/colin

April 5  Sorry mommy and I didn't write yesterday but time just seemed to get away from us!  I got my shot from Nurse Deanna yesterday, yuck, but it is my last one for a while so I got over it pretty quick.  We didn't really do much yesterday but our normal stuff so I don't really have much to say.  I tried to call my boyfriend Colin to wish him a Happy First Birthday but I only got the answering machine so mommy just put the phone up to my mouth and we sang the Happy Birthday song.  Noni of course came out and played with me and told me how cute I was looking.  I guess that is all I have to say really.   Oh yea, I did have my Speech Lady, Miss Mary, come out today but I was asleep so mommy sat and talked to her about her goals and stuff for me.  I woke up just as she was leaving so mommy took the bipap off of me so I could say hi to her and smile for her.   I like Miss Mary alot.  Mommy is making me wear the bipap alot more now and it makes me feel good too.  I don't mind wearing it really, it helps me to be rested and able to play more!  Mommy also has been changing my diet and I like it too.  She has been working really hard with me and I am looking, feeling, and doing great!  I will let mommy talk now.  We have had great days!!!  It is so nice to have nice days with nothing major going on.  She is sleeping on bipap right now which is nice.  She has been wearing it for no less that 12 hours a day but we are trying to keep her on it for at least 14 hours a day.  I have been inexing her alot more too and that is helping.  She is doing great and looking great!  Better go for now and check on her!

April 7  Well, we didn't write yesterday either but we were very busy.  I was very good all day long and mommy and I had so much fun.  In the afternoon mommy put me on the counter and let me taste lots of food and we talked and talked.  Mommy thought I was funny because I was really loud and making lots of faces!  She let me taste some of my easter candy too and that was really yummy!  I got to taste my Chocolate Bunny and that was really yummy!  The bad thing was that it might have made me not sleep so good.  Mommy said that I might have gotten some of the caffeine in my system and that might be what kept me up.  I actually went to bed kinda early but I didn't sleep very good and then I kept waking up so mommy put me in bed with her..well I decided that I didnt' want to sleep and kept crying and crying.  Mommy thought something was wrong so she gave me some tylenol but that didnt' stop me.  She took my bipap mask off thinging that maybe she had it on wrong or something but as soon as it came off I was happy.  Mommy said that I couldn't be without it at night and put it back on me but I was unhappy again and wouldn't go to sleep.  I kept setting off my alarm!   Finally mommy got up and rolled the TV over and put in a movie...I was fine then.   I didn't even mind the bipap being on!  I watched 2 movies then mommy told me that was enough and rolled me over and kept snuggling with me until I went to sleep.   I got up really early this morning and mommy took my bipap off and then I fell back asleep but mommy was so sleepy that she didn't put the bipap back on me and we slept till 11:30 the new time (actually it was 10:30).  I was in a pretty good mood today even if I didnt' get alot of sleep in!  I got my bath, then did all my therepy's and then mommy carried me around for a while when I got done with my lunch.  Mommy put my bipap on me at 2 and told me I had to wear it for 3 hours!!!  I still wouldn't take a nap for a long time but finally fell asleep for only half an hour!  Mommy wanted me to stay asleep because she wanted to take a nap but I wouldn't let her!  We got up and she took me outside for a while in my wagon it was so nice out!  I had a really good time being rolled around outside and looking at all the trees and stuff.  We walked down to the barn and rolled around there.  I got to see Pappy's boat too.   Mommy brought me back in and fed me my dinner and let me watch video's then when my dinner was done I helped her make formula and then she took me back and got me ready for bed...doing my cough machine and stretches and stuff.  Now mommy said she is going to hold me and cuddle me while I am on bipap and can go to sleep.  Tomorrow is a big day too..I have Miss Beth and another man coming to measure me for a new stroller mommy wants!!  Goodnight all!!  I would have never thought 2 weeks ago that I would have such a wonderful and easy week!!  Lily has been excellent (except for last night...little buggar!) and has had no major episodes!  She has been excellent and has been jabbering like crazy!!  She is making new sounds and getting so funny.   She loves to talk to me now, and so I lay her on the counter, get out the baby foods, and just spend time with her talking and tasting.  She loves it.  I can see she is going to be a real jabber box!  She things it is so funny to make a different noise and watch my response.  Her new favorite is "Ahhhh Haaaaaa!".  It is so cute and she only does it when she wants a response.   And then there are her faces...she comes up with a new funny face everyday!   This morning she figured out how to make me and daddy run...she was back in the bedroom getting her feedings and her alarm went off..of course we flew back there at a breakneck pace and get back there and she is fine..but her video was over with!!!   Little squirt is so funny!  Needless to say we breathed a sigh of relief, put in another video, and laughed at her.  She is getting to be so very funny!   Well, hugs to all and I hope you all have a great week!!!!!

April 8 Gosh, I had a really busy day today.  First off I got up and mommy had to get my breakfast and stuff going but of course I got to watch my TV shows first. Then mommy had to hurry up and get dressed because it was already 10 (we slept in sorta...really it was only 9 but the clock now says 10).  Miss Beth was coming at 12 and also a man named Dennis too to measure me for a new stroller.  I was dressed and ready when they came and mommy had me on her shoulder and I fell asleep but they just wouldn't let me sleep!  He brought a stroller for me to sit in and try out, I really liked it alot!  I could lay flat in in if I wanted to or I could set it up some too.  Mommy really liked it so they took some measurements of me and talked about stuff.  They were here for a while but then they left and Noni came.  I was really tired so mommy took me back and put me on bipap for my afternoon bipap time...I only slept for about 15 minutes then wanted to get up.  Mommy wouldn't take my bipap off of me and said I had to keep it on until 5pm!   I did it...Pappy came to see me too.  When mommy let me off the bipap everyone left and it was just me and mommy and that was so much fun.  Mommy took me into the kitchen to help out with the dishes..you know mommy needs company when she is in there.   I talked to her and she talked to me.  Then she got some of my toys out to play with and we played together for a while.  It was so much fun!  I got to "eat" bananna's too...yum!  I even swallowed some of them too.  Then mommy got me dressed and we went outside for a while, I was up on mommy shoulder and it was lots of fun.  I got to see the train go by, I got to see some dogs from across the street and watch the tree's blowing in the wind.  It was really windy here today so mommy couldn't take me out until the wind died down some.  Then before I knew it I had to come in and eat supper!  Mommy sat and talked with me while I ate..plus talked on the phone some too.  I watched some of my videos....it was fun too.  Now it is time for bed and I am really sleepy since I didn't take a nap.  Bye!  I want to add that we are so very excited about the stroller.  It will be so nice to get Lily out and about with something that I am comfortable in.  We plan on doing things this summer and this will help us with that.  It is very expensive...but it will be worth it.  It can go completely flat or tilt up at an angle yet keep her flat (does that make since?).  I can tilt her upper body up too...It will have a tray under it for the bipap, battery, and suction machine.  I also have asked for an IV pole so that she can be fed while out...it really doesn't come with it but I know other models that have it so hopefully we can make one work for it...I feel more comfortable doing that than bolus feeding her.  She gets her feeds over the course of an hour.   I guess that is it..it is very nice and we hope we can get it before our New Jersey trip but I doubt it.  Well, I guess that is it for right now...she had a great day, and is a real chatterbox now!  She is so funny and cute.  I have pictures that I am going to be adding so keep on the lookout in the next few days for those.  Hugs to all!!!

April 9  What a great day again today!  Well, we did have a rough night, Lily woke up again and cried so I put her in bed with me and had to get her calmed down.  I wouldn't take off her bipap or let her watch a movie (I don't want her to get in the habit of doing that) but I did give her some tylenol and just snuggled with her and she finally fell back asleep and slept until 10:30 this morning!  When we got up and after her breakfast she had to have her bath before Miss Mary came for her speech.  She was just jabbering and talking to me the whole time..it is so cute to listen to her.  We hoped that after Miss Mary left we would be able to go outside but it was to windy, cool, and rainy so we had to stay in.   Miss Mary came and they had a really good time today..and she brought me some books to read too.  Daddy got up shortly after that and it was nap time so on the bipap went and daddy watched her while I went to the store for a while.  When I got home she was still sleeping so I got to eat supper then she got up.  Daddy left for work and I decided that we were going to get in the van and go over to Noni's and Pappy's house.  This is the first time in a long long time that I had been in the van by myself with her!  She has been doing so very well that I want to get her used to doing things with me...not long things but leaving and running across town etc.   Well, I got her stuff loaded and packed her up and off we went.  She loved the ride in the van and just jabbered and talked to me the whole time (it is only a 10 minute ride to their house).  We surprised Pappy and Noni!!  Lily hated it over there (for some reason she has never liked Noni's house...) and she cried the whole time we were there (which was about an hour).  We got packed up again and headed home and she was perfect the whole trip in the van..she loved riding.  She was so happy to be back home but it was a nice little jaunt across town and we plan on doing that more often.   She was perfect and I made sure I suctioned her out before we left, and as soon as we stopped.  Her stats remained at 100% the whole time (except at Pappy and Noni's house because she cried so much)..and it was fun.  Lily has been soooo very good (thank God for that) and has been so funny!  I put new pictures on her site too...check them out.  Well, better get to bed....love you all!!

April 10  Hello hello hello.  Once again I must repeat myself..we had a great day!  Lily slept in late but got up so happy and chatty.  We got dressed and began our day.  I got to go out for a while today because I had to pick up some of her vitamins and stuff so when she got sleepy I put her back on bipap and Noni watched her for a while.  She didn't go to sleep but she remained on bipap for 2 1/2 hours until I got back.  We got her a new car seat and it is so very nice!  I now have it installed and ready to try with her.  We got it at a nice place that when I explained her story they let me purchase it but they said they would hold the check for 10 days so that I knew it would work for her.  It is a convertable car seat meaning that it will go rear facing and forward facing.  Of course because of the SMA I want her to remain rear facing because if she was forward facing in a wreck her neck could fall forward and snap.  I know that alot of parents with children just lay them flat in the vehicle and that is fine for them but I am to worried about us having a wreck (no we are not bad drivers but I don't trust other drivers) and because she is sooooo floppy she would just flop around and "break" in a wreck.  I just feel better if she is in a safty seat.  Now we do have it "modified" for her meaning that we have it tilted back further than it recommends (we have towels under the base) but the nice thing is that it has a tether that I can secure the seat with so I have it tilted back some and tethered so it is very secure where it is.  She will still have to wear her bipap in it but that is ok.  It is very comfy looking, like an easy chair.  Lots of padding and stuff.  The name of it is Advantage by Britax and yes it was very expensive but worth it if it works good for Lily.  I am happy with it.  I will try her out in it this week on short trips around town and see how she handles it.  She was outgrowing her infant car seat so quickly and it had no support whatsoever.  If we had a wreck with her in that her head would probably just roll around and I don't like that.  It was also kinda hard too.  The bad thing about the seat is that to move it is a bear....I put her in the front with me when I am by myself and we go on the bench seat in the back if someone is with us.  We had the airbag disconnected in the front passengers side because of her but I feel better being able to see her.  She hates to go in the back by herself too.   I know it isn't the safest either but it is safer than not putting her in a car seat at all.  Well, this is getting way to long but I do have something else to say...it was so warm out that when I got back from shopping I took her outside in her wagon, she had such a great time.  We have the huge SUW and it is nice to roll her around the farm in.  I got to walking with her and couldn't stop...we were singing and talking and I just kept walking.  We live on a huge farm and I started walking back in the fields (there is a path for vehicles so it is smoothed down) and we ended up walking way back to where there is a lake.  She loved it so much and we had such a good time but I must say I was worn out.  The wagon itself weighs 50 lbs. and then add Lily (15.13) and a few pieces of equiptment and whew...it was heavy.  By the time I got back I was worn out expecially when you are out of shape anyway but it was fun and we will do it again for sure.  We then sat out in the front yard and I sat down by her wagon and we talked and laughed and had a great time.  We waited and waited for a train to go by but it never did and as soon as I took her in the house and got her dinner going there goes one!!!  Oh well...goodnight all!

April 11  I am going to start this off by saying that I almost wanted to whip Lily tonight!  I wouldn't do it but sometimes....ahhhh!  She refuses to go to sleep at night.  This is about a week of doing this.  I get her ready and she refuses to go to sleep.  I lay beside her, sing to her, pray with her and she just either continues to keep her eyes open or in tonights case...Cry!  I check her to make sure nothing is poking her, I recheck her bipap mask to make sure I don't have it to tight or that it is leaking somewhere.   I try to reposition her and make her more comfortable all to no avail.  It is starting to get aggravating.  So far this week her average time of finally going to sleep is 12am!  I even give her tylenol in case it is her teeth hurting (which of course it could be....) and sometimes that calms her down but not tonight.  She has finally drifted off into a decent sleep but her heartrate is jumping some too..up and down.  Hopefully this spell will be overwith soon.  On another note we went on a ride today in her new carseat.  Talk about nice...it is so plush!  She went right to sleep in it and slept great!  I did put the bipap on her but she could probably sometimes ride without it too because I have the seat reclining enough..but it is still safe!  We are very happy with the car seat.  Now that I am through griping about Lily let me tell you what a great day we had.  She had visitors today, Mamaw and Papaw Barnett came over to see her and she was in such a great mood.  She was eating lunch at the time but she let them read to her and she graced them with her smiles.   Then her great granny came over (of course my granny) and her Noni and she was so very good to them too.  She did take a really good nap and she did it without bipap but when she woke up she was in such a good mood and talked and smiled and made faces for everyone.  When they all left I loaded her up in her new carseat to try it out...then when she got back it was time for dinner.  Pappy came over to see her to tell her bye (Pappy and Noni are going to Florida for the week).  After that we went outside on the front porch and watched the cars go by, the trains go by, listened to Obie bark, talked about things, and read books.  We sat outside for a long long time and she loved it.  I took her beanbag out on the front porch and she layed in that and had a big time.  It was nice.  That was our day and it was great.  Also congratulations to Debbie and Richard on their new Granddaughter Mattie..she is precious.   Also Happy first Birthday to Skyler McAdams, Lily's friend who is also SMA type 1...it is a huge milestone to get to this first birthday because 80% of children with SMA type 1 die by their first birthday so yeah for Skyler and hope you party hard!!  Also all of you who read Lily's journal please keep our friend Skylar Saranchuk in your prayers.  She is in the hospital fighing some sort of infection...her website is www.our-sma-angels.com/Skylar and she is a fighter.  Well, we send hugs to all of you....God Bless.

April 12  I guess I am never going to leave the house ever again!  Today I was going to go shopping at the mall for somethings and so Brian (Daddy) was going to watch her.  I put her on bipap for her nap and left.  Brian called me as soon as I got in the mall to let me know she had woken up already and in the mist of telling me this she begins to throw up and destat.  Brian hung the phone up and I of course ran (literally ran) out of the mall and hopped into the van and flew (literally flew) home driving 100 miles an hour at one point and flashing people to get out of the way. Brian called me 2 more times..once saying that he had her more stable but she was still only in the low 90's then once again after Coughing her saying she was throwing up again and he couldn't bring her stats up.  I told him to call 911 and I was coming as fast as I can.  The normally 30 minute trip took only 15 minutes (and would have been faster if some of those bone headed drivers would get out of the way when someone is flashing them...expecially the Indiana drivers...arggggg!) and I beat the ambulance home.  I ran to the bedroom and she was at 84% so I began working on her..cough/suction/cough/suction...for some reason I lifted her shirt and OH MY GOSH her belly looked like she had swallowed a basketball so I opened her g-tube, stuck a syringe in it and whoosh..out came all kinds of air.  That I believe was her problem...I noticed last night on bipap she had just a ton of air coming out of her from being vented all night long and it made her very uncomfortable.  She must have been swallowing air while I was gone and threw up because of it then adding the cough machine on top of that didn't help at all.  Once we got the air flowing out of her I coughed her again (to try to get anything in her lungs out) and the whole time I was doing this the Men from the Ambulance were watching me....finally I had her up (she was on oxygen then) and I put her bipap on her with oxygen and she was at 100%.  I took off the oxygen and she stayed there.  I got her calmed down, put a movie on for her and she was fine.  She is tired tonight but that is also because she doesn't sleep anymore either....but Brian did very well with his first by himself episode.  When I got back home I worked on her talking to her and had her back up and fine again.  She didn't crash as hard as she did a few weeks ago so that is good and I don't think she got anything into her lungs either (actually it was time to eat again so there was really nothing much in her belly) so Thank God!!  When Brian first called me I began praying for her, for God to send EXTRA angels to watch over her and help Brian, I began praying for God to give Lily strength to fight this battle too...and he did.  It was scarry being away and not being able to do anything but God was with Brian and Lily, he pulled them through.  Afterwards Lily was back to her normal sweet self...oh and another thing to add she is getting her first tooth!  I have never been through teething before but I do think that is what is waking her up at night and throwing her off.  I can feel just a sharp little edge of it coming through her bottom gums, the front one on the left.  Yeah!!!  I am so glad she is getting her first tooth...I will beef up on the Cytolog.  Well, better get back to her...

April 14  Uggg..this teething stuff is rough!  Lily has not slept good all week and last night was by far the worse.  She had tons of gas, and slept very fitfully fussing some and heartrate being higher than normal.  Poor baby!  She set off her alarm 2 times from her heartrate dropping low (from gas I think), her oxygen level stayed fine but we calmed her down then took off her bipap mask, suctioned her out, then back on the bipap mask goes.   I turned her Pressure (IPAP) down all the way to 14 (lowest it has been in a long time) and it was still blowing air into her belly.  She was not breathing with it at all and so as far as I can see she was swallowing alot of air.  Thank goodness I can vent her tube all night now to let some of the air escape.  She woke up crying this morning at 7am..and I couldn't get her settled down until I took her bipap off (which I never do but we were both exhausted so I relented...) and she went back to sleep restlessly until 10:30.  She was all our of sorts this morning, high heartrate, low stats, alot of grunting with her breathing, she was in obvious pain so I decided to put her on bipap but that didn't work either..she cried, her heartrate climbing higher and higher until I took it back off even then it was still high for her.  I finally decided that she needed a nap so we took off to the bedroom, I got the bipap on her again and layed down with her where she took a restless nap but we did stay there for 3 hours on bipap...but she still was not breathing with it and her stats were lower than normal.   When she got up and we took bipap off she seemed fine, her heartrate back to normal..or at least lower then it was before.  She seems fine right now but I can see even more swollen ridges in her mouth so....looks like we might be in for some rough times coming too.  Hopefully she will go to sleep better tonight....well an update on my little teething girl..she is getting 2 teeth now.  I can see the little ridge of the other tooth coming up as well so she is getting her 2 front bottom teeth now.  That is why she is grouchy and unsettled.  Hopefully they will be in and we can get some sleep soon. 

April 15  Yeah, we slept last night pretty good.  She got restless around 4:30 again but I just gave her some more tylenol, Orajel, and gas drops and she settled back down again.  She is sleeping now and I can hear her syringe just blowing air out!  Poor baby.  She had a great day, we spent most of the day outside in the yard doing things like gathering sticks, cleaning the yard, and all that stuff.  I am getting ready to plant some flowers...and of course Lily will be helping me.  She got to touch grass today, I put her little bare feet in it and then she layed down on it too..she loved it.  She rolled around in her wagon, swang in her swing (I take her baby swing out..she likes it), and just relaxed.  She liked laying on the trampoline too and I got some pictures of that.  Well, I am very tired so I think I will be heading to bed.  God Bless!!!

April 16  Another day outside...Lily was exhausted tonight and went to bed early for her.  She had a great day and so did I.  She did sleep good last night too and that is wonderful.  She rode around in the wagon some and sat in her swing too.  It was nice and really warm too.  Better get to bed....God Bless!

April 18  Hello Hello...sorry I didn't write anything yesterday....there really isn't anything to tell (yeah!!).  We had a great day, she is back to sleeping again (another yeah) and we have spent most of yesterday and today outside.  Noni and Pappy are back from Florida so Noni came over today and we had her in her swing then in her wagon.  We both enjoyed watching her, and I think she enjoys being outside looking at things.  Her stats have been great, she has had great days with no episodes and really that is all to tell right now.  I am extreamly sleepy and still have to make her formula so I better go...I will write more tomorrow!

April 19  My heart is heavy as I write this so please bear with me..I am always overwhelmed and sad when our SMA community loses a precious child to this disease and of course I have to fight the urge to let it "bring it home" to myself as well.  Conner Riggs was truly an angel here on this earth, his bright eyes, sweet face, and fighting spirit was and is truly inspirational.  I have known of Conner for over 2 years now and have kept up with him by his journal and his mother writing on the guestbooks.  Many times after I had lost Nathan I would go to the sma angels website and wander through the websites of all the precious angels there and of course Conner's pictures were there too.  After I had Lily Betsey, Conner's mom, emailed me to congratulate me on her birth and of having a healthy baby girl.  After Lily was diagnosed with SMA Betsey again wrote to me to express her heartfelt sorrow over this and to encourage me.  Since Lily's diagnosis I have kept up with Conner by his journal and website enjoying his pictures and Betseys entries into the guestbook and everynight when I would pray Conners name was always said in my prayers.  When I got up this morning to check my email and to visit the guestbooks I was shocked to see that Conner had passed away last night...I had just read his mom's entry into his journal before I went to bed last night and it talked about him having a good day etc...so I was shocked to say the least.  My heart is truly broken for Betsey and John (Conner's dad).  After losing Nathan to this horrible disease I can truly say how sorry I am, losing a child is a pain like no other.  As a Mommy your arms ache to hold your child one more time, to look into that sweet little face.   I do not begrudge Conner for the joy he is now experiencing and it is comforting to know that when he went to sleep last night he was happy, and when he awoke this morning, in heaven, he was happy as well.  No more bipaps, no more cough machines, no more feeding tubes, no more episodes, no more trouble.  I imadgine he is overjoyed at getting to experience what it is like to take your first steps, to take a deep breath without the help of a machine, to run and run and run!  What joy he must feel at this very moment to be singing with all the angels and getting to meet all the other SMA angels who have gone on before him.  I can imadgine my sweet boy Nathan taking his hand and telling him to come and play.  It is us on this earth who are left to be broken hearted, not them.  All I can say is that my heart goes out to their family and that I truly know what they are feeling right now.  Now as I go back and look at my precious girl who is sleeping peacefully on her bipap right now my heart is breaking and I have to fight the urge to feel truly hopeless...but of course there is hope and that is what I cling to.  None of us know what the future holds but this I know I will do everything possible to make Lily's life a joy and be the best mom I can be.  God is good and faithful and I will cling to that.  Conner...we never met you but we do love you!  Sing with the angels sweet boy......one more thing then I will go.  A friend of mine sent me a beautiful saying one day about losing our children (she had lost her son to SMA as well) and I want to leave this with you all who are reading this..."They say that time in Heaven is compared to the "blink of an eye" for us on this earth.  Sometimes it helps me to think of my son running ahead of me through a beautiful field of wildflowers and butterflies.  So happy and completely caught up in what he is doing, that by the time he turns around to see if I'm behind him....I will be."  Isn't that beautiful?  That comforts me on days when I miss Nathan so bad it hurts...if you would like to visit Conner's website to see how truly beautiful he is just go to www.our-sma-angels.com God Bless all and please keep their family in your prayers.

April 21  I am not going to write long but just to update everyone on Lily.  For those who don't know we have been in and out of the hospital for the last 2 days.  She vomited yesterday morning and since then has been having a hard time holding her stats up.  We waited until yesterday (Sat.) afternoon to go the hospital and when we got there she seemed ok but not 100%.  The took an x-ray, did blood work, etc. and everything came back fine.   We went home and she was still not keeping her stats up but went to bed anyway and she was fine all night if I gave her tylenol every 3 1/2 hours.  When we got up she seemed ok, not great and still lower than normal stats but she again vomited and destated badly, called 911 again, back to hospital, still nothing.  It is really weird and she seems like she is in so much pain.  She is teething of course, trying to get all her teeth at once it seems and she has a minor ear infection (not really bad at all) but we don't know if those two combining things are making it really hard for her?  We still do not know why she vomits...she is on bipap uncomfortably right now and we are trying to get her to sleep....please keep us in your prayers and I will update as I can. 

April 24:  Hi, it's Sue, Casey and Colins Mom.  Amy asked me to update this site for her. 

This is the entry she posted today on FSMA and SMA Support:

Hello everyone and thanks for all the prayers. I just want to update everyone on what is going on. We are still in Louisville waiting for the test results from the reflux test. Lily is doing great and she has all the nurses and doctors rapped around her fingers and she said to tell Kalair she is watching lots of extra Elmo!! Lily is amazing with all she has gone through she always has a smile on her face. We will keep Sue and Liz updated on what is going on so you all will know. We should find something out today hopefully about her reflux test and getting her transfered to UMD. God Bless and Happy Late Birthday to Timmy!! Maybe we will see you in NJ but if not you are as always in our prayers.

That entry was written this afternoon.  I just spoke with Amy again (7:30 PM).  Lily is doing well.  No crashes, just one dip this morning when she was getting her reflux test.  They finally got the results to the test.  It showed that Lily had (I hope I get this right) 3 instances of mild to moderate reflux in 90 minutes.  The doctors will be talking to NJ first thing in the morning.  Amy is sure that they will want to do the Nissen to prevent her from refluxing.  The hospital will set up the med flight.   She expects that they will be UMDNJ for about a week.   When I called, Lily was content watching Elmocise.  She's got her videos, her Mommy, and Noni, so she is happy.

Thanks for all the prayers for Lily.  Keep checking the journal.  I'll update for Amy as often as she'd like me to.

Hugs to you all, big and small...~~Sue~~

April 25: 9:30 AM

by Sue, Casey and Colin's Mom: caseyandcolinsmom@yahoo.com

I just got off the phone with Amy.  Lily showed the nurses and doctors how she can throw up and desat this morning!   She's fine now, watching videos.  Noni slept in the room with Lily last night to let Amy get some much needed sleep.  Amy had checked on Lily and turned her at 5:00.  At 7:30, Noni came in and said that Lily was having an episode.  She rushed in and saw two nurses suctioning her but she needed to be in/ex'd so Amy got right in there and went to it!  She did drop into the 40's but came up with in/exing and oxygen.  She actually had a couple of these dips in a row.  So, now the doctors and nurses really know what Amy and Brian and Lily have been dealing with.  They're getting in touch with DR Bach and Dr Bethyl, and now, hopefully, things will move quickly and they'll get everythin set to go to NJ fast!  If anyone has any messages they'd like me to relay, just email me.  I know she's missing being in touch with everyone.

April 26: 

Hello all. 5:15 PM. Sorry I didn't update earlier. Colin was a needy boy today and we didn't have a nurse for. Amy called me this afternoon and said that Lily was already extubated and on bipap. She's doing well. Her O2 levels were 96 and up. Dr Bach walked in as we were ending our call. She seemed glad to see him! I'll let you know more later.~~Sue~~

This is an entry from Brenda Hanson and MJ Purk:  Friday, April 26:

Hi all: It is 8:45pm. We are home and visited everyone. Danny is doing great and was transferred to the regular peds floor...he even smiled and laughed and talked to MJ. Plans are for danny to go home maybe tomorrow. Timmy was looking pretty good. He was able to be off the bipap for a while today and doing well...plans are for them to be home Monday. Lily was doing pretty good. She was busy watching videos and didn't want to be disturbed. She looked pretty good, didn't seem to be in too much pain (of course, they just gave her tylenol). Overall, everyone was doing fairly well under the circumstances!!!


This is an entry from Liz, Kalair's Mom:  Saturday, April 27:  (Taleah and Skylar are litle girls with type 1)

First I want to say we are SO glad Taleah is okay! Praise God!! Amy wanted everyone to know that Lily is doing well also. They got a big plug out with the cough machine last night (probably because some of her meds dried up her secretions), and that seemed to make her feel better. She slept well (with the exception of annoying night nurses) and is back to regular tylenol after a brief period of tylenol w/codiene. Skylar Saranchuk is also improving. They will not be able to pull her broviac until Monday, but they've already found another site and are running her IV meds through that. Her heartrate and fever are staying down and she was able to come off the bi-pap for a few short breaks. Oh, that reminds me that Lily also had one thirty minute break from bi-pap and did just fine. I guess that's all for now...Kalair sends hugs!!

Entry from me (Sue) Sunday, April 28:

Hello all. Way to go Taleah! Glad to hear you've bounced back so well. Keep on getting better! Well, I just got off the phone with Amy. Lily is doing really well. She's been off bipap since this morning and her numbers are fine. She's on regular tylenol. She's smiling and moving her arms and happy. She's been tolerating her feeds better now that she's off the tylenol with codeine. Amy said Timmy is looking good (now my Colin has some competition, I hear) and was off bipap for a while this morning which is EXCELLENT! Way to go, Timmy! That's about it. Keep the prayers coming.


Entry from Brenda Hanson and MJ:  Sunday, April 28:

Hi all: MJ and I just got home an hour ago from visiting Newark again. We spent a couple hours with Timmy and Lily each. Timmy was looking great and waving at MJ. They should be home tomorrow or Tuesday if everything goes ok. He was off BiPAP for longer periods of time. When we went to see Lily, Amy and Brian got to get away and went to NYC for awhile. Lily did drop a couple times this evening, but not major...just needed suctioning. She was off BiPAP for quite awhile this evening. We couldn't leave Newark, so we stayed longer with Lily due to the bad storms going through. The docs haven't said when they should be going home. Glad to hear Skylar is feeling better and so is Taleah.

Entry from Liz, Kalairs Mom.  Tuesday, April 30:

Timmy and Lily are both still at UMD. Timmy had some kind of a setback (this is like fourth hand information), and they do not want to take him home until nursing is set up (no idea how long that will be). Miss Lily is doing GREAT! They just couldn't get the medflight set up until tomorrow, but she is up to 35 cc/hr continuous feed and Amy is already bolusing extra water which Lily is handling just fine. She is also in a great mood and has everyone at UMD in love! Now, on a not so great note, I just heard that Taleah was taken to the hospital again. This is also not direct information, so I don't have many details except that she was stable by the time she got to the ER, so they were probably going to bring her home. But PLEASE say LOTS of extra prayers for the English family and especially precious Taleah! This has been a difficult month for them. And Tracy and Sky, don't think we've forgotten you guys (isn't it nice to be the one with nothing to report on for once?) Our entire SMA family continues to be in our thoughts and prayers, especially those in crisis. Take care and God Bless, Liz, mom to Kalair (26 months, SMA 1

Entry from Sue:  Morning of Wednesday, May 1st...Time to go to May Journal!




Lily's Favorite Things

Her Favorite Video's are:

The Best of Elmo

Do the Alphabet

Favorite Songs

Her Favorite TV shows are:

Rollie Pollie Ollie


Blues Clues (sometimes..she likes Blue and Steve)

Other interests are:

Tasting food expecially Whipped Topping

Making faces and watching us laugh at her

Crossing her eyes and hearing mommy go "Lily don't do that!!"

Being up on Mommy's shoulder walking around

Watching her disco light at night

Playing with her g-tube

Chewing on her Gumby (I have to help her get it to her mouth but from there she does it herself!!!)

Riding in the van with Mommy!

Being outside in my wagon or sitting on the front porch with Mommy

Praying at night with mommy for all my SMA friends and their mommy's and daddy's too.


Lily's Least Favorite things

Waiting for me to change a video

Doing the Cough Machine

Doing her stretches with her arms

Being at Noni's house







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