February 1, 2004
I am in the middle of watching the Super Bowl...Lily
is bossing me around :)too...but wanted to take a moment to catch up on the journal.
First of all about our appointment on Friday. After staying up WAY to late on Thursday
night cleaning, then getting up and trying to get some things done on Friday morning..the
School Meeting was canceled! Grrrr..this is the SECOND time that it hasn't worked out!
First time they didn't show up, and now because school was closed on Friday due to snow it
was canceled again. It is a little bit (well more then a little bit) annoying. I want to
get it over with in so many ways! I am nervous about and am worried that it will be
something else that I will have to add to my growing "list" of things that I am
going to have to fight about! Some days I feel like that is all I do is fight over things!
This week for whatever reason has been a hard week! First is School, after studying for
what seemes like hours and hours I get a low score on my test...and 83% and 80% is
passing. I just don't GET some of it and the fact that I have to get up so early to study
my BUTT off doesn't help. Then all day doing things with Lily and trying to keep the house
up, then having Medicaid NOT approving her Cough Assist that we NEED and having to fight
with them, THEN dealing with the fact that I have NOT recieved child support in SO long
that it is a distant memory is NOT helping! I feel like I spend all day long calling,
making calls, and fighting for things...and while that is NOT true this week it does seem
like that is what I am doing!!! Really the child support thing has REALLY made me the
maddest (is that a word?) of all. I mean come on....that is the LEAST he can do is pay the
darn child support!!!! I had to call his "daddy" on Friday and try and get HIM
to call Brian and "talk" to him! I am so sick of dealing with this kind of
stuff!!! I dont' have TIME to be running him to court everytime he does this, I mean I
have things to DO and he really should PAY! Oh well, I could go on and on about that!!!
Last night (Saturday) we went over to my parents house for their "Key West
Party" and had a good time (I have some pictures on the picture page). Everyone
dressed up in Island costumes and it was cute! Lily had a little Sundress that says
"Baha Beach" on and her lei and some shell jewelry..she was precious! Some of
them had some REALLY funny costumes but the best was a long time family friend Terry
who...well just look at the pictures and you will see him!!! It was so funny! We only
stayed for an hour and a half but we had a good time and of course Lily is ALWAYS up for a
We have another busy week...grrrr...2 therapists tomorrow, then Wednesday is the
reschedueld School Meeting thing. At some point I have to go and file my taxes and Pay the
taxes on my car (expired at the end of January), get my license renewed..and the list goes
on and on!!! LOL...but at least it keeps us out of trouble! Should be fun fun fun!!!
Tonight I am going to work on Lily's website again when she goes to bed for a while...so
check out some of the new changes, I plan on adding some pictures to the picture
pages...so check those out after tomorrow!!!
Hugs to all and Lily sends hugs to all her fans!!!
Tuesday, February 3, 2004
After being in a grouchy mood last week (ha ha) this
week started off with a BANG!! Sometime during the wee hours of Monday morning our furnace
quit working! I kept waking up during the night wondering why it was so darn cold in the
house! I kept piling the blankets on Lily because it was so cold so when I woke up to
start my "studies" it was FREEZING!!! I looked at the thermostat and it was
below 60 and falling! I spent the morning snuggled in the bed trying to keep warm and when
it got late enough I called Travis and Dad who came over right away to look at it. Dad ran
over to the house and got us a room heater so we spent the rest of the morning and
afternoon in the bedroom laying around on the bed staying warm. In the afternoon we got
the furnace fixed so we are fine now! I am so thankful that it didn't do that last week
when it was below 0 at night..we would have been blocks of ice!
I did have to cancel her therapists Monday in case we had to leave the house since it was
so cold so we had a "free" day! Lily seemed bored but we made it through!
Today was speech therapy and it was good, she is vocalizing so much more and we are
working with her on her scanning skills with a piece of equiptment called a "Cheap
Talk", it is a little frustrating for both her and me but we are doing it. I am
working with her on it for about 15-20 minutes a day right now so as not to frustrate her
and me. She just loves to "click" her switch when she gets it in her hand and
she has to learn to wait and let it scan...we will get it, she is smart and of course she
is only 2 right now but it is a skill she will have to learn on the computer as well so we
are working on it.
Tomorrow we are heading off shopping again..she just LOVES to do that! It is always fun to
roll Lily around and have everyone comment on how pretty she is! Her favorite store right
now is the dress shop with all the shiny pretty dresses in there. We always have to stop
in the store and look at the pretty dresses with all the "shiny" things on it!
She just loves the tacky dresses..but it is fun.
School is going fine and I am adding some course on to my class list...when I am done with
the Medical Transcription course I am adding Billing and Coding to it as well so that I
can make myself more "employable" when I am finished. I know this will take me a
while to get done with but I have nothing but time and I want to be able to get a GREAT
job afterward and not have to worry about money (or child support for the most part).
Well, I guess I will head to bed...hugs to all!!!
Friday, February 6, 2004
Well..I am keeping a close eye on Miss Lily this
morning because I am afraid she is sick! Grrrrr! She is still sleeping but she had a
restless night and woke up several times crying then would fall right back to sleep. That
is usually the first sign of the start of something. I will know more when she wakes up. I
am not to worried, while a cold produces extra work she, up until now, has handled them
fine with extra bipap time, extra cuddle time, and some extra treatments thrown in there
but like I said it IS alot of extra work. She is also working on some molars too so that
could be the cause of her crying during her sleep as well so I will update everyone when
she finally makes an appearance this morning :).
Nothing much is going one, just working on school and playing with Miss Lily. She is doing
a good job communicating with me, much better then she was before. She has most certainly
taken more of an interest in "girly" things like jewelry, clothes, etc. She has
been picking out her clothes (she gets 2 choices and has to pick one of those) and usually
she goes more for the girly stuff. She is really into bracelets and things like that now
and it is so much fun! She is still into watching herself in the mirror and KNOWS how
pretty she is! It is fun...she is fun, and we have such a fun and wonderful life!
School is going good..I have upgraded my stuff to include Medical Billing and Coding so I
will be doing school a little longer than planned but it will be worth it in the end
because I will have a well rounded education and be more "marketable" when I am
finished. I am praying everyday that when I am all finished with this I will be able to
find a job that allows me to stay at home with her and NOT go out into the work force for
anytime...that is the only nerve racking thing about it. But as I have said to others
before "I will not be in any worse shape then I was before, I will find a job and it
will all work out in the end" but of course the goal is to find work that I can do
from home and have a home buisness that will allow me to stay home with my daughter and be
there for her. I will eventually have to get help in here but I would rather have help
with ME in the house then to have help with me NOT in the house!
Really, there is not much else to share! We did make it to the mall on Wednesday, we had a
great time and Lily certainly enjoyed it! We were there for close to 5 hours and were
exhausted when we made it home! But it was a great day out with my girl.....
I will let everyone know how she is feeling when she wakes up!!! Hugs to all!
Sunday, February 8, 2004
Sorry I am just now updating the journal! Lily does
NOT have a cold, I guess it is just teething issues but thank GOD no cold!
Friday we ran to Target because we needed some juice, diapers, and things like that so we
headed to Target which is Lily's FAVORITE store in the world...SHE SLEPT THE WHOLE TIME we
were in there! She missed the whole shopping trip! She tried to stay awake but just
couldn't make it. We had a nice outting then headed home again.
On Saturday we didn't really do much, we played back in her room and on the swing for a
long time then we snuggled in bed for a little bit, it was a nice lazy day. I worked more
on her room later on that afternoon while she played in the swing watching movies. Then
later on that night I HAD to clean the house.
This is where it gets personal so please excuse me while I share a little bit...sometime
during Saturday afternoon my ex-step-mother-in-law called to tell me that Brian (Lily's
dad) had called and wanted to come over and "talk" with me. I didn't quite know
what to say, the last time we heard from Brian was the day after Christmas (long story)
then before that it had been a while too. Anyway, he wanted to come and "talk"
again, we go through this several times through the year and each time my heart gets a
little more hard and empty toward him. I told her that he could come over early in the
morning if he wanted to talk..to make a long story short he called the next morning and
was sick and couldn't come so he told me what he wanted to tell me over the phone. I will
spare the details but each time he does this (and it has been many times) I feel less and
less about him. He is and will always be Lily and Nathan's father and I will always have a
place in my heart for that, he gave me the 2 biggest blessings in my life...but other than
that I have NO feelings whatsoever for him. He hurts me each time he steps in and then
steps back out of Lily's life and the only reason that it hurts me is because I cannot
imadgine WHY her own father wouldn't want to spend as much time with such a special little
girl. I enjoy EVERY moment I spend with her, she is funny, bright, social, and just
beautiful. I miss her when I am away from her for a few hours much less weeks and weeks at
a time...and I guess it hurts because I am afraid that in the long run it will hurt her as
well and there is nothing I can do about it. I will always be there for her, I will always
be there when her heart is broken but I can't always "fix" things and this is
one thing that I cannot fix in my little girl's life. *sigh* OH well, he will be here next
Sunday to spend some time with her but I won't count on it lasting..I hope he proves me
wrong but I certainly won't get my heart set on it.
We didn't do anything much today either..my Uncle Steve (Lily's great uncle) came over
today to spend some time with us, it was nice. We always enjoy having family over to visit
with us! Noni and Pappy came over later in the evening while I ran to get something to
eat. She loves Pappy so much..she is so cute with him and of course Pappy thinks she hung
the MOON! They are so cute together! After they left Lily and I watched the
Grammy's...this is one of the FIRST shows that Lily and I have actually enjoyed watching
together! She LOVED it and watched it until I HAD to put her in bed! She loves the music
and she loves to dance. During the music we would get up and dance around the house and
she just LOVES that so much! It was fun to watch something together!!!
Hugs to everyone!!!!
February 13, 2004
Whew..what a HORRIBLE week we have had! My poor
princess has not been feeling up to snuff this week. Like I said in my last post she does
not have a cold BUT I suppose she is teething (it is always a guessing game here) and she
has had and up and down week. Sunday was really really rough with her waking alot during
the night and crying for long periods of time. She seemed to get much better through the
week but still having rough nights THEN last night (Thursday night/Friday morning) all
______ broke loose!!
After having to be turned like every hour or so that night at like 6am she awoke crying in
pain, I turned her and was going to try and get her settled down and I looked and she had
BLOOD coming from her g-tube site! Well you can imadgine that at 6am my head is NOT
screwed on all the way so I freaked out, called my mom (who in turn freaked out) and told
her that I was taking Lily to the ER. Well, I started running around to get things
together then all of a sudden it hit me WAIT A MINUTE..why not check the contents of her
stomach and see if there was lots of blood in there? So I did and it was fine, so then I
knew it must be surface wound or irritation of some sort. I got her cleaned up and yes,
she was irritated. Anyway..to make this short so I can head to bed..she has cried several
times uncontrollably today and so tomorrow morning we are off to the doctor to see if she
has an ear infection or not. We started antibiotics tonight since she has been so up and
down this week and maybe an ear infection is brewing...or it could be totally teething!!!
It has been a rough rough rough day. She didn't want to come off of bipap until late
tonight (she would gasp in pain and cry) and now she is sleeping fine for now but of
course it could change quickly. I will keep you all up to date and update more
tomorrow....I gotta try and get some sleep!!!
Excuse the typo's...I am a ZOMBIE!!! LOL...
Oh yeah...Happy Valentines Day tomorrow!!! I will write more tomorrow!!!
February 14, 2004
I must say that today was a MUCH better day for Miss
Lily. She slept so well last night and her heartrate has been much lower and not so jumpy
today too. She didn't cry as much or fuss as much at all. She had to get up and get into
the doctor this morning just to have him say "Nothing wrong, must be her teeth."
Grrrrrr! Anyway I was happy to have my sweet and precious girl back to normal today. We
even had our own little Valentines Day Celebration tonight, we went SHOPPING (our favorite
past-time). There were SOOOO many good sales and I did have to spend SOME money! We had a
GREAT evening and now she is sleeping peacefully again for another night I HOPE (keeping
my fingers crossed). Those darn teeth!
I want to take a moment to tell you about some very special people who have come into my
life through this horrible disease called SMA. I want to point out some of the people who
have become not only my good and wonderful friends but also a part of my extended family.
I came into the world of SMA after my precious son Nathan went to heaven..I was broken
hearted and I found a place amid a guestbook at FSMA and found people who were going
through the same thing I was going through. While people have come and gone in my life
there is one person who has meant the world to me, I knew her through Nathan's death and
now through Lily's life, her name is Laura and she runs the SMA Support Website AND helps
build 100's of the Our SMA Angels Websites among to many other things to mention. She is
an amazing woman who has become a true friend and an inspiration to many. She has lost 2
children to SMA and a miscarriage and now has a SMA free daughter who is a little older
than Lily. She has devoted her life to helping others out and has become a true hero to
many as well. Please take a moment when you have time and visit a few of her websites:
www.smasupport.com and www.our-sma-angels.com and look for Devon and Sydney.
There are so many other people who have become so near and dear to me as well through this
world of SMA...I could go on and on about so instead of writing 100's of paragraphs about
each person, I will tell you about them through different journal entries...but I want to
tell you about someone who has also become dear to me. In the world of SMA there are
different choices that we make for our children but hopefully the thing that binds us
together IS the fight of our children whether living or passed away. The mother I want to
tell you about has a precious little boy who is probably in heaven right now playing with
my son Nathan....his name is Marshall and his wonderful mothers name is Laurie. I was able
to meet Laurie in person at the FSMA conference this past year and I just "fell in
love" with her and her wonderful husband. They have been through so much in the past
year and a half but no matter what they give EVERYTHING their all in memory of their
precious son Marshall. They fund raise no stop, talk to other parents, and who knows what
else they do "in their spare time". Their hearts remain broken for the child
they lost but they share in the joy of the other SMA children as well. Laurie is a
wonderful mother and a wonderful person...and (I know you read the journal Laurie)..you
have become a wonderful friend as well. I am proud to know you and I pray that you WILL
have the things your heart desires....please take a moment and visit Marshall's website at
www.marshallpotter.com and PLEASE make sure you view the pictures, they are beautiful (and
always bring me a smile along with my tears).
Ok enough of the mushy stuff....I am going to head to bed, I am still lacking sleep! Hugs
to all!! Lily sends hugs and we hope that everyone had a Happy Valentines Day!
Tuesday, February 17, 2004
It is way to early to be up and writing but I am
asking for prayers for a friend of mine in Canada right now. Her little boy Jacob is
fighting...and his mom is doing everything she can for him but the doctors are NOT
cooperating with her or him at all. He is very sick but they are not seeing how serious
this is at all. He has SMA type 1 just like Lily and he needs prayers. My heart is
breaking for his mom right now and I wish to GOD I was closer and could help! It is
amazing to me how doctors just feel like our kids are NOT worth saving just because they
have SMA, I get so angry at that! Our kids do have a life and it is a shame that as a
parent you have to fight tooth and nail in order to get what you need and want for you
child to have the best life that they can. I could go on and on but I won't do that.
Jacob has a website at www.caringbridge.com/Canada/babyjacob if you would like to go and
see this smiley boy who is fighting right now for his life.
My prayers will be for him and his mother tonight as she does battle with the doctors to
give him the best care she can give him!
Sunday, February 22, 2004
It is very early in the morning and I am getting
ready to head off to bed having just cleaned my carpets!!
I know it has been a few days since I have updated but we have been very busy around here.
We had things going on this week and tomorrow I plan on doing nothing but laying around
snuggling with my girl.
We had our IFSP meeting with all the therapists on Thursday, it went well. Lily is doing
so well and meeting so many goals these days it is amazing. She is not only getting
stronger but so darn smart. I will be so excited when we get her computer and see what she
can do. We are ordering her a few more things before her plan expires and she is out of
her Early Intervention Program.
After the meeting Lily and I headed up to Northern Kentucky to spend a few days with my
Grandma (Lily's Great Grandma). We had a great time, of course we went shopping on Friday
then headed back home today. It was relaxing and nice to be waited on (which is what
Grandma does) and of course showing off my precious girl is the BEST part of it all. Lily
had a great time getting away and of course LOVED shopping on Friday and a different mall.
It was nice to get home though.
Funny story..I was so looking forward to getting home and relaxing BUT when I walked in
Obie had made such a darn MESS by Pooping all over the house! Grrrrrr...so I had to clean
it up then tonight when Lily went to bed I had to clean the carpets again, uggggg, I
didn't know whether to laugh or cry when I walked in so I decided to just laugh about it.
I did get it all cleaned up and got the house smelling fine again (with the help of lots
of candles and stuff) and now my carpets are clean again so I can relax tomorrow instead!
Well, nothing much else to say, I am off to bed! Hugs to all!
Saturday, February 28, 2004
Whew! I bet you all were wondering when I was going
to update the journal. It has been a while and crazy week to say the least. First of all
on Sunday night I started coughing and not feeling well, I was very ill on Monday and just
wanted to lay around and I started feeling better on Tuesday just in time for Lily to
start getting sick! Friday was the first day that she began feeling better but she is
still sick but thank goodness she has calmed down on her coughing! Poor little thing, I
hate to watch her cough because she doesn't have much of one and it is just annoying for
her. Her heartrate was skyhigh and on Thursday she began to run a fever. We ended going to
the doctor on Friday afternoon and she had the start of a double ear infection so she is
on antibiotics now. She started feeling much better throughout the day on Friday.
That is really all I have the energy to update tonight...We have spent alot of time being
up and down during the night doing therapy's to keep the junk from getting into her lungs
so I am headed to bed.
Hugs to all!