December Journal

December 20

Hey guys!   Another little Lily update here....she is back to being her rotten, demanding, and loving little self. 

I am so happy to have her back, it has been wonderful being able to hold her again, dance around with her, have her back in the living room again.  She spent the afternoon on the swing in her playroom then into the living room to see the Christmas lights and just be around in a different room.  She has been catching up on her sleep, she slept for 13 hours last night, WOW! 

She has been so good, I am proud of her and we are excited for Christmas.  My grandmother will be coming down to spend Christmas with us and we will have our first family get together on Christmas, up until now everyone just came over to my house in the morning to watch Lily open her gifts but we will be having an actual dinner at mom and dad's so that will be nice.

Hugs to all!   Again thanks for all the prayers!!!

December 18

Just a quick entry because I should be in bed, we have all been running on lack of sleep for over a week now but I wanted to quickly update on the Princess of everything :-)

Yesterday (the 17th) she was still on 24 hour bipap, not wanting to come off but she was doing very well and feeling fine.  Her heartrate was pretty much back to normal and she has been fever free for a few days.  The night before her sats (oxygen level) was still running low while sleeping, to low for me to be comfortable so it dawned on me to work on the bipap settings so I tinkered around some and was able to bump up a setting or two and she settled in for a wonderful night of sleep only to be interrupted by a treatment but other than that she slept peacefully with her O2 staying above 97 (she had been sleeping between 92 and 96 with an occassional dip into the low 90's and even upper 80's).  During the day her O2 was running fine but she needed those deeper breaths for sleeping. 

Anyway, today after her first treatment of the day/morning I did what I had been doing up to this point, leaving her off pap to see what she could handle and up till now she wanted right back on, she would cough and her O2 would dip but today, finally, she not only did fine while I tried her off bipap she wanted it off as well and every time I would try and put it back on her not wanting her to tire herself out and to give her a break she would cry and fuss until I took it off again so the only bipap time she had today was when she was doing her treatments (I am now doing them every 6 hours instead of every 4) then after she would get coughed she wanted to keep it off...soooooo she is finally feeling much much better, a HUGE relief for me and of course Noni and Pappy.  She is amazing, it was just a week ago I was wondering if we would be in the hospital by Monday she was so sick but today she was feeling fine and spunky, didn't want bipap and was being so silly.

Hopefully I can get up in the morning and get the living room cleaned up and get the rest of the gifts wrapped and she can spend time in the living room in the afternoon and evening enjoying the Christmas tree and all the Christmas stuff.  Whew, I am so thankful we made it through this one, this was the closest we have come with anything respiratory being so bad that I thought we would be in the hospital so THANK YOU for all the prayers and kind thoughts and nice emails.  It has been a long, difficult week with not alot of sleep but we have made it through it and hopefully (and keep praying) we can stay healthy through the rest of the winter season!  She is amazing and bounces back so wonderfully for what she has to deal with, I am so proud of her and the fighter that she is, I know Nathan is proud of her too.

I will write more later but I need to head to bed so I can get things cleaned up around here in the morning, the house looks like a pit, REALLY it does!  I haven't done much in the way of cleaning for over a week now and it shows!

Hugs to all!   Thank you all again for all the wonderful notes and emails that were sent my way and most especially the prayers, God just continues to bless my little girl. is a picture of Miss Lily getting into the holiday mood yesterday on her BiPap in the swing room (or play room..whatever).  We were being silly so this is my Rudolph the Bipap Reindeer!

holidayseasonpics 019 (3).jpg (29271 bytes)


December 13

I know you guys are waiting with bated breath :)....

I think we are eeking out of this one!  Lily is still sick and isn't coming off her 'pap' but she is doing much better.  The coughing has slowed down, alot and everything has loosened up and I am able to start getting it out.  We have been doing round the clock treatments (nebs, CPT, and coughing) and she is doing much MUCH better.  Last night around 3:30 while we were doing one of the treatments I pulled out a HUGE plug (wad of SNOT) and it seemed to really help alot with the chest rattle.  Today she hasn't rattled as much.   Her eyes are swollen so she has antibiotic drops for them and the doctor put her on antibiotic's on Saturday.  We have the neb stuff as well and of course ALL the prayers which are the most important of all.

I have to get to bed, we have to get up at 4am to do a treatment so I better hit the hay for a while.   Thanks guys for the prayers and all the nice emails and guestbook entries.  It means to so much to all of us.  We love you guys :)

December 10

Wow, I never thought I would be saying this but I am so worried with this sickness, she is so sick and this is the worse I have ever seen her other than when she was going through the reflux issues that first year.  Please, please pray for her.  I am scared that this is one that could end her up in the hospital.  I just can't seem to pull the secretions out and they are rattling around in her chest and I am worried it could develop into pnemonia.   Tonight she started with a bit of a fever and she is sleeping very fitfully and just has that look about her which makes me worried.  I can't seem to keep her from coughing, we are not getting much sleep because she coughs all night and all day.   She did get a break for a while this afternoon and was happy but toward the afternoon she just started getting worse and worse.  We had a home health nurse out here this evening to take some samples of her secretions to test for pertussis and RSV.

Anyway, I am worried and hoping that she takes a turn for the better instead of a turn for the worse.  We will hopefully find out the results of the tests tomorrow sometime. 

I love her so much and it about kills me to watch her trying to get through something like this.  She coughs and it hurts me to try and watch her because her cough is so weak.  Tonight while she was sleeping she started coughing and I had to take her bipap mask off and cough her while sleeping and she just could barely deal with it, I have yet to see her so sick.

Pray, please.  I am off to get some sleep.


December 9

Boy, I will say this has been a rough couple of months for us. 

Lily is sick again, not sure what it is, possibly just a cold but we are testing her for a few things. 

We got up yesterday and I could tell something wasn't right so against my better judgement we went on and packed up and headed to the mall which we should have have done.  Lily was so excited that morning to be going shopping I just wanted her to have a nice day out because it had been so long since she has gotten to do that.  We picked up Noni and headed to the mall, her heartrate was much higher than I like and her O2 was a tad bit lower than I would like but over all she was smiling.  She had a good time for the first half of being there but then she just kept getting chokey and needing to be suctioned.  We walked around for a while more and while Noni went into the card shop Lily started coughing and choking, I suctioned and suctioned to no avail.  I ended up throwing her over my shoulder and running to the card shop and yelling for mom telling her we needed to go.  We had to run through JC Penny's and I had to keep blowing in her mouth by that time while mom yelled at everyone to get out of the way, we had an emergency.  It seemed like it took us hours to get to the van but we finally got there and I got her on bipap.  Right away she spit out some huge globs of junk.  We headed home.

That evening Lily just kept getting worse, she was coughing all the time.  I did neb treatments and coughed her through the night every 2 hours so finally this morning she went to sleep for a while.  When she woke up she started coughing again and has done it ever sense.   Right now she is calmly watching a movie but she is so tired from all the coughing (both with machine and on her own).  We are both so tired we can hardly think straight right now.  Poor baby, she has had to have treatments every 2 hours today to try and get out whatever she has going on. 

Keep her in your prayers please, she has been sick since the first week of November!  She isn't like this, ever and I just want her well.  She is still amazing, even in the mist of her coughing fits she is still smiling with red, bloodshot eyes. 

I gotta run and get back to her but I wanted to take a minute and update for you guys.  Thanks in advance for the prayers!


December 6

Gosh, I didn't realize it has been this long since I have updated the journal!  I am so sorry.   Everything has been fine just hectic and crazy.

My last update was before we celebrated Thanksgiving wasn't it?

On Thanksgiving evening Lily and I headed over to Noni and Pappy's for the evening.  Lily was acting off all day long, kinda whiney and just not herself at all and once we got over there she was just not herself at all.  She felt a little feverish and again was just whiney all day.  Anyway, when we left Noni and Pappy's that evening and got home I decided to take her temperature and sure enough she was running a fever of 101.8 which for her is high since she runs on the low end when she is normal.  So I gave her some tylenol and just knew for sure she had strep again.  I called the doctor the next morning and went in early afternoon.  They did the rapid strep test (she was acting fine by then) and sure enough she had strep again.  So it was back on Antibiotics again.  That afternoon she got feverish again so we had a whiney, crabby girl on our hands.  It took her a full week this time to feel better and really today was the first day she seemed to have all of her spunk back again, being bossy again.

I, of course, got strep again but it wasn't as bad the second time around whether it was because I was popping Ibpropin alot or whether the strep just wasn't as bad the second time around, who knows. 

We are both fine and dandy now. 

Lily has been so bored!  We were able to get out Saturday after Thanksgiving and head ot our Family Thanksgiving over at Uncle Johnny's and Aunt Melissa's house.  Lily wasn't herself but she had an ok time, spending most of it in the bedroom watching her movies mainly and Pappy or myself would go in and be with her (mostly Pappy).  We had a nice day but haven't been out since! 

Pre-School has been iffy for Lily with this next case of strep.  That Monday after Thanksgiving was not so hot.  She was whiney and just didn't feel herself at all.  She did set up in her chair but seemed to be more chokey than normal.  On Friday she started off fine but got tired very quickly and seemed to just  not be into it at all, even with her beloved art and craft time.  She ended up getting really chokey and had to lay back and she cried and cried.  Today was much, MUCH better and she was more into it and was back to her normal self.  She didn't get tired out from sitting up and was into the craft time painting a star.  She is doing well with school when she pays attention to the teacher.  She got her first progress report today, it was cute.   It said Lily has made "some" progress and she can do "some" matching.  It was funny.  She can match but gets so bored with the clock communicator so quickly.  When they ask her to match a color or picture she will match it by eye-gaze (she looks directly at it) but she gets bored waiting for the clock dial to spin around to the right place.  I am going to have to work on that one with her alot more.  Book time is another time she isn't so fond of either.  She doesn't like books, at all.  She hates it when I read to her and while she does better with the teachers she still isn't always so interested.  Anyway, today she was feeling her oats and did a much better job in school, silly girl.

Tonight I had to disipline Lily for the first time EVER (I think).  Since being sick she has been catered to more than normal *laughing here* and for the last couple of weeks when I would give her a bath she would cry and cry which I understood if she didn't feel good.   Well tonight I was getting her ready for her bath and when she figured out that she was going into the bathtub she started crying and once in the tub it was an all out war, she was throwing a temper-tandrum full blown!  I quickly washed her down and got her back on the bed and turned her movie on while I dried her off, well the temper-tandrum kept on going.  If she didn't have SMA she would have been laying on the ground kicking and screaming!  Anyway, I had enough and I calmly told her that she needed to stop which made her cry all the harder, so finally I told her if she didn't stop I was turning off the movie, crying continued (for NO reason) so I said "TV is off until you can quit crying and smile", so she kept fussing and I kept the TV off, she finally after a couple of minutes stopped crying and gave me this half hearted smile and half hearted on the TV went and she was perfect for the rest of the evening.   Little stinker is so rotten and it is about time she started acting good with certain things.  I know that she gets away with so much due to the fact that she has SMA but still, I don't want a brat brat in her.  I want her to be a good girl even with her challenges.  She responded so well to the TV off thing that I will probably make that the 'time out' she needs sometimes when she is throwing her fits.  99% of the time she is a very good and patient girl but she is still 3 and still is very typical with her wants and such and somedays she acts up more than others.  Like I said she is a good little girl who is always happy and patient but when she wants to act up she sure can do that!  Anyway, she did a good job with her 'punishment'.  It was quite funny and I am sure that Pappy would be very upset with me if he knew it. 

Other than that nothing much is going on, I am hoping that we are over this whole strep thing for good.   It has been a yucky few weeks dealing with this.

I am hoping that we can get out to the mall on Wednesday for a day out for the girls.  I plan on going early so we can beat the crowds after work and of course the school kids too.  She needs a day out and I do too.

Oh yeah, one more thing!  We have our Christmas stuff up and Lily just loves it.  I am hoping she gets into it much more this year, she is getting to be such a big girl.

HUGS to all!