*Lily's March '03 Journal*

March 2003

Change in the format of the journal, all the new entries will be at the top.


Monday, March 29, 2004

What a wonderful warm weekend we had! It makes it even harder to have a day like today with it being rainy and cooler out. We are snuggled in today I guess, still in our PJ's and it is late in the afternoon! We didn't have anything going on so I have been doing my school stuff and Lily is laying in the swing watching a movie and swinging.

I do have some news..I have the t-shirts in so anyone who wants one please let me know. Karen I have set aside your shirts as well. The prices are $10.00 each and PLEASE remember they do go to a wonderful cause! The look nice, the sizing is a little off but like I said they go to a wonderful cause :)

Another piece of news is this..there will be a fundraiser held on April 17th (I have to double check this date to make sure I am right) called a Walk and Roll for SMA. It is to be held in Loveland Park and Lily and I will be there as well as several others. It is being organized by the OKI Chapter for Families of FSMA. Beth Lockwook is the President and her kids are Emma and Nick (not that you needed all the info...both have SMA type 1 as well). Anyway, Lily and I are going to walk so we will be taking pledges..also we have several others who are going to be walking as well on "Lily's team". If you know of anyone in that area would likes to walk and wants to do so have them email me so I can get them registered. It will be a wonderful event and there will be other SMA children there as well. I will type up the info to post on the website here.

Nothing else is going on, Lily and I have been able to spend the whole weekend outside walking and doing fun things. Lily just loves to be outside in her stroller! We walked over to Cracker Barrell yesterday afternoon to eat dinner! We are "training" for the walk :) I am way way way to out of shape and heavy BUT I can walk! Lily was outside so much yesterday that she has her first tan line of the season :) and she just looks way to cute!!!! She was exhausted last night from being out and about but it was so darn nice! It was 82 degrees here!!! *sigh* today it is back to being cold and is raining. I think it is supposed to rain most of week..so HELLO to spring huh?

Hugs to all from the Princess.....

Saturday, March 27, 2004

Hi all! It has been a few days and time for an update!

We have had a busy week with lots of therapy's going on etc. We had a Pulmonologist Appointment with Lily on Thursday with Dr. Morton. She has not been to see him since 2002 (bad bad) so we went in. Dr. Morton was MORE than impressed with Lily! He raved about how great she looks, her chest, her BP, her Respirations, everything...she was perfect! He was impressed with her weight, growth, etc. It was a GREAT visit! He also has agreed to prescribe her a new bipap, more compact for being out and about so that I don't have to drag that HUGE box that I always have to take. I hope that I don't have to "fight" to much with the insurance company. We are starting the process for a powerchair as well and I needed a smaller bipap to be on that. So it was a GREAT day and a GREAT visit with a nice doctor. YEAH!

Lily also got her laptop computer (yeah again)...but the switch stuff didn't come in so she still can't use it just yet :( It is nice though and I can't WAIT till she can get on it and have a GREAT time playing games and all that jazz.

Well...I need to head to bed. HUGS to you guys!

Sunday, March 21, 2004

Yeah, Lily gets her computer next week! I am so excited for her and really think this will "expand her horizons" alot. I know she will need to learn patience (not her best virtue) but she is so darn smart that it will be great!

Lily has been doing so well, she got over her last illness in fine form and is back the the smiley (most of the time) happy little girl that I love so much! She is growing so darn much and is becoming less and less a baby and more and more a big girl *sniff, sniff* and I will admit, I miss my baby but I am proud of who is she becoming. She is still a movie queen but now that spring is here she will be able to go back outside when it gets warmer and enjoy the outside. We have so many things planned for this year that it will be fun and somehow I am squeezing doing school in between it all :)

Speaking of school, I am back to hitting the books after our 3 weeks of being off due to Lily's crisis (teething first then sick the next). That is the nice thing about being able to do it at home, I can do it when I want and if I have things going on around here taking care of Miss Lily then I can do that too. It is slow but I am doing it.

Next month Lily and I are making our first "trip" of the year. We are going to visit some friends in Tennessee, the Speigels, who have a little boy named Billy who is now 3. It will be so much fun and I will admit it will be nice to get out of the house and do something different. Billy is amazing, he is so smart and I am excited to see him working his computer and showing Lily a few things. Fun times ahead!

After that is of course BIRTHDAY, the big 3! My gosh I can't hardly believe she will be 3 in almost 2 months! I was just thinking back to her birth the other day and what a wonderful time I had being pregnant with her. She was such a little fireball from day one and that streak continues! She wants what she wants and lets you KNOW when you are doing something she doesn't like!!! ha ha, she is rotten!

Noni and Pappy just got back from Florida last night, late, and we stayed up late so she could see them. She wasn't in the best of moods and wanted to go to bed but she made it, she finally went to bed at 12:30am!!!! They will be over today to see her too and maybe I can sneak off to the store or something.

Other than that, nothing is going on! Happy Spring to everyone!!!!

PS...for those of you in the Cincinnatti area, be on the lookout for an invitation to an event being hosted by the OKI FSMA Chapter. It has Nathans picture on the front of it so it should be cute. It is for a walk and Lily and I will be there to participate! I will give more details later!

Thursday, March 18, 2004

It seems to me that I have alot of venting sessions here lately :) but oh well, here we go again.

We had our School System meeting today (this is the second one, more formal)and it went fairly well except for a little snarl....Lily's doctor sent in a letter stating that she wasn't able to attend school, period. I know he didn't mean it cruel or anything but it just kinda made me mad that he didn't discuss this with me ahead of time to ask what MY view of it was. It really isn't right or fair....and it is just so darn upsetting!

I have raised me daughter to KNOW that she can do anything and everything that she wants and I have actually had my heart set on her going to school at least for a day or two a week until cold and flu season. I want her to be "normal" and enjoy the company of other children. I don't want her raised any different just because she has a certain set of circumstances and I feel that everything can be adapted so that it works for her. I want her to feel successful and KNOW that SHE can accomplish anything she wants to and do anything that she wants to. I get her out and let her have fun and I TRY not to keep her in a bubble away from everyone and everything. I do not take to being told "sorry, she can't attend school because she is disabled". It was just heartbreaking and I can't even explain my emotions at the time, I was just shocked. I WANT her to experience things and be around other children and to just have FUN! Don't TELL me that she can't do something. She is bright, smart, funny, and an amazing little girl. It is just like a slap in the face to hear something like that..she has every right to go to school no matter what her abilities are...grrrrr!

Ok..so here is the plan of action, I am going to call her doctor and talk to her. I have a feeling the they were just trying to do what they thought I would want done but I do wish they could have spoken to me ahead of time to find out instead of just assuming. So I will be calling her doctor tomorrow and then next week we go to the doctor (Lung doctor) and I will tell him MY wishes as well. Just pray that I can somehow find the strength to "educate and advocate" for my daughter. She deserves so much to be involved in LIFE!!!

Ok...I am to upset to really talk about it more, I am sure I will be writing more about it and explaining it in more detail so you all understand the whole thing...but for now that is all I can share without bursting into tears right here and now! It just brings it to the front that she IS disabled because when it is just her and me in the house she isn't, I don't look at her and think of what she CAN'T do, I look at her and see what she has accomplished and what she CAN do and I just want every opportunity for her as every other child!!!! It is days like this that I totally HATE SMA but then again..it has made me a stronger person and I certainly will NOT take no for an answer and I know that I can make things happen.

A HUGE thanks to Rhonda, Lily's Developmental Interventionist, who was here today to help me. She is amazing and wonderful and a HUGE support! She pushes me to be a better mom and a better advocate for my daughter as well and not just sit on my butt and do nothing! I love her and her personality!!! She is amazing and a HUGE help! Also Kathy Woods, Lily's Coordinator, who was also here and a HUGE advocate for Lily! She is amazing and is always willing to do whatever needs to be done to get the job taken care of! She has never told me "no" but has always encouraged me to do what I think is best for Lily. HUGS to both of you guys!!!

Ok, back to my princess who is yelling for me now :)

Wednesday, March 17, 2004

Another life was lost today so forgive me if I ramble...a precious little girl named Christina went to Heaven to be with the angels.

It is so sad, it brings back so many feelings and it brings home reality as well. I have been in the SMA community for a long long long time and it doesn't get any easier when a life is lost so young. I feel for the parents, the grandparents, and everyone who was involved with the child. It always makes me want to go and hug my daughter and pray to GOD that she isn't taken away from me as well. Heaven gains another beautiful person, but for those of us who are left behind it is a hole, and empty place that can never be filled...a piece of our heart is missing forever and we are never quite the same again.

On days like this the best medicine is to hold my daughter, my precious girl who means more to me then my life, the one I would gladly lay my life down for...and I hate this darn disease so much. All of these children touch my heart and in Lily's face I see each and every one of them and I can only do my best and be the best mommy I can be and make her life count. I am so sorry for Christina's family, I can remember the shock, the heartache, the pain, then the reality of losing my precious little boy. Not only do you lose your child but you lose dreams and hopes. I will never on this earth get to see my son take his steps or run off to school (he would have started school this past year), or kiss my face or tell me how much he loves me. I love Nathan...and I miss him and on days like this I can't get over how much I miss him and wish he was here with me.

I see him in Lily, I feel he is there, and that makes it easier. I know he is watching us and I know HE knows how much I love him.

I am so proud of my daughter..and I am proud of who she is and what she will be! She is amazing..she is my rock on days that I feel I can't go on, her smile is sunshine, and when she gives me that giggle or that grin I KNOW things will be ok and fine. She is my angel on this earth..I am blessed by having 2 angels with me at all times and I know that.

I will certainly be praying for Christina's family and if you would like to "meet her" you can go to www.our-sma-angels.com, click on OUR KIDS and scroll down until you see her name, Christina Slack. She is beautiful and will make a beautiful angel......

March 15, 2004 6:25 PM CST

It has been a little bit since updating! Sorry! It is not that we have been busy just we have been doing things.

Lily is doing well, she is over her illnesses and back to normal and being her regular bossy self. You can see we had a picture session..I changed her pictures on the site..isn't she just TO pretty? A friend sent her a beautiful dress so we threw her in it and took the pictures and they turned out SO well! She seemed to really enjoy playing the princess, it was fun.

Really nothing much is going on, we are trying off and on to enjoy the weather and counting the days until spring and we can zoom around outside and walking and all. We went for another walk to day and I must say it was cooler out then I thought it was BUT still Lily enjoyed being out in the sunshine. She has been doing so well and so I tried her sitting up in her stroller and she did so well with that for part of her walk. I didn't want to tire her out so I only did it for a short bit but she seemed to enjoy being UP and able to look at things differently....she is so strong and amazing! I will take a picture of her sitting up in her stroller and post it, she looks like such a BIG girl!

Now the website issues...I will have to continue with the journal here and posting the pictures here for a bit :( Laura is overhauling the websites and I can't get on them to update the journal there or add anything for now...sorry! So enjoy this little website for now with the updates until I can get back into her's and work on it.

I gotta get back to the princess....she has an early appointment tomorrow and she is going for her first HAIRCUT OUT tomorrow afternoon! She hasn't had her hair cut for a long long long time (I believe it has been over 2 years now) so she is getting the dead stuff trimmed off and I am thinking about adding bangs to her do...what do you think? I think she will look SO cute like that. She is going to a place called Cookie Cutters tomorrow afternoon and so I will HAVE to take pictures of it! I will post a picture of her with her new haircut :) Anyway she has speech nice and early tomorrow so it will be a full day and who knows, we might head out and go shopping after the hair cut....should be FUN! :)

Lily sends hugs and kisses!!!!

Saturday, March 6, 2004

Ok..I know I said I would update last night but I went to bed :) The main thing is that I wanted to tell you about the t-shirts. I tried to post a picture of what will be on the front of them but for whatever reason I can't get it to work so you have to go to www.smasupport.com then on the left side of the screen you need to click on the link that says 4/4/04 SMA Across America and you can see the logo. The sizes are as follows:

Kids shirts:
Size XS --
Size S----
Size M---
Size L ---

Adult Shirts:
Size S ---
Size M----
Size L----
Size XL--
Size XXL

The prices are going to be $10.00 across the board I think (for now) meaning Adults and Kids will be the same. All of the money raised after paying for the shirt itself will be going to SMA Support and you can check out that website (the same one above) to see what they do. It is a GREAT fundraiser and one that promises to raise LOTS of money. SMA Support has a very important function, they help families with getting them supplies or things that they need. They do a GREAT job and it is a wonderful organization. Laura (the big cheese) is a wonderful friend and has done so much not only for me but for the SMA Community for years. She has lost 2 children to SMA and has a daughter a little older than Lily who doesn't have SMA. She is an amazing woman who does so much. She designs the Angels websites (Lily's included and Nathan's too). So that is where the money will go. You can email me directly at cure-sma@insightbb.com to let me know how many and the sizes. Let me know ASAP so that I can go on and place an order.

Ok on another note...I will be closing THIS website down and going directly to Lily's main one in the next few weeks. Laura (SMA Support) is going to help me to get my pictures up on the website and I will be doing the journal from there now. So make sure you start checking out the main website for new things...I will keep this one up for a short bit then close it down and being doing the journal from the other one. THANKS!!!!!

Lily is wanting to get out of bed now so I need to go attend to her :) We were supposed to go to the Miracle for Madison event today but because she was sick I opted not to go, I am really disappointed about it and WANT to be there. I am still going to put Lily in her Cheerleader outfit and take pictures so make sure you check them out later on today. I will make sure we will be there NEXT YEAR!!!!

HUGS to all and Lily sends you all kisses as well :)

Friday, March 5, 2004

Sorry it has been a while since an update! Lily is doing fine, we seem to have made it through this one with flying colors again. She is a little congested and needs her bipap more than usual but other than that she is back to her smiley happy dictating self :) She is amazing, my little girl is totally amazing! Last week was very tense, this is one of the sickest times she has had in her little life, the coughing was HORRIBLE and you could just hear the congestion. We spent nights up and down, doing lots of neb treatments and lots of coughing on the machine. She just looked sick and yucky, she was running a fever, and she had "that look" in her eyes and I knew it was bad. She spent a few days NOT wanting to come off of her Pap and when I had to take the mask off she would immediately "crash" needing to have it right back on. She made it, she is amazing and such a little fighter. When it is over with and I can sit back I just sit in amazement at the gift I have been given, what a strong little girl who does NOT know the meaning of the word "give up". I can only THANK GOD for having the chance to have such an amazing little girl in my life and I can only THANK GOD that he gave HER to ME!!!

Ok...onto the next thing :) I am going to be selling T-Shirts for a fundraiser on 4/4/04. I will give the details tonight on the journal. These are going to be really GREAT T-shirts at such a good price. It will spread awareness when you wear them AND you will be donating to a GREAT cause. All the money raised from the T-shirts will be going to SMA Support and you can check out the website at www.smasupport.com to find out what they do for families dealing with SMA. I will write more about it later BUT please contact me via email ASAP if you are interested in purchasing a T-shirt from me. I will post the picture that will be on the t-shirt...it is really cool and like I said I will write more about it on the journal later on tonight after Miss Lily goes to bed :)

Ok that is all for now...thanks for all the support and I can now breath a sigh of relief *sigh* that we are over this thing and Lily is feeling MUCH better! Speaking of Miss Lily...she is calling for me so gotta run!!!

Monday, March 1, 2004

Before I start..excuse any typo's that I may do, it is way to early in the morning and it has been days since I have had a full nights sleep!

Lily is doing ok, we are still battling this thing she has but she is holding her own. She is on bipap 24/7 right now (much to my concern) and over all she is happy but she has this nagging cough and as soon as I try and take her "Pap" off she starts coughing and holding her breath so it has to go back on. I can hear stuff rattling around in her throat but it is just hard to get up. Her poor little throat must be raw because when I have to suction her I am pulling up blood. So far we have kept it from her lungs (yeah) with alot of work but so far so good.

She is amazing through it all, she is always ready with a smile (as long as I get the right video in) and is really a trooper for someone who can't move and feels pretty crappy.

Please keep her in your prayers..we were supposed to go to Colombus Ohio this coming up weekend for a fundraiser but we had to cancel because I just don't want to take a chance with her not being 100%.

I have to finish her treatment and then I am going BACK TO BED again! Hugs to all!




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