All future updates can be read on Kelly's Blog. Pictures of Camden can be seen on his photo page.

Sunday, May 11, 2008

Happy Mother's Day Angel of mine. You made me a mom. And you made me the mom I am. The person I am. I've always known life is a journey and the you learn a lot along the way...that it's a learning experience...it never stops....but who would have ever guessed a beautiful blonde haired blue eyed Angel could teach so much and in such a short amount of time. I wish you were here with me.  Pop did a good job of thinking of you..and of me. He got a beautiful card with a little girl with pig-tails. I know you hated me messing with your hair, but you were so cute in pig-tails.  And you loved messing with others peoples hair :) I miss you my angel.  I'm scared I'm starting to lose you. It seems like...you're so far away...like you never were here. I know that isn't true. I know every day you were here...you still are in my heart. I see your smiling face every day.  Camden loves the giraffe rattle that you liked.  He's playing with your toys that you could never play with.  He's certainly moving for you too...he is raring to go. He likes to eat - imagine that. :)  He hasn't had as much ice cream as you have...but I'm sure he will in time.  I love you angel and miss you so much. Please watch over Sherry...and Maegan...and Arlene....and Burton...and Jeremy...and so many more. Please come visit us - send us some signs...I miss you so much!!!   I got a job for the fall. I'm very excited. I'll be teaching music again. I think it's going to be really good.  I love you sweetheart. Sending you tons of hugs!!!

Sunday, April 13, 2008

I don't know Angel.  I just don't know. I keep reliving that day. Your last day. The last time I held you. I can't get it out of my head.  I'm sure the trip up to Dallas didn't help with it any.  I have been missing you so much and hurting for you so much.  Seeing your brother do so much is bittersweet.  It's so wonderful, he's wonderful and amazing, but it hurts knowing they were things you could never do. Knowing you should be here with him. He should have his big sister to teach him and tease him.  To love him and laugh at him. To hold him and hide from him.  It's just not right and it's just so hard.  Part of our little family is missing and that's how it will always be.  It just hurts too much.  The drive to Dallas only brought up the feelings even more. The memories of your last day, your last week. I can never stop at the Czech stop again since the one time I finally did was that week with you. We brought something back for Marmee - peach cobbler I think.  I need to use the rest room and it was pretty clean so  I laid you on the floor so I could go...then on the way home when I needed to stop again the floor was not so clean - so I held you - boy was that hard - but you kept saying "rollover" because you wanted to lay on the floor again. Driving past Scottish Rite where we went so many times.  Looking for the big ball and giraffe at the zoo that we always pointed out to you. You did so well driving back up there 2 days later. You were so good. We were so close to Lee and Eric's and you wanted to lay down and I said no - we were almost there - why didn't I stop? I almost did. We weren't too far so I almost pulled over and cushioned you on the back seat.  I figured you had done so well and we weren't too far....but I didn't.  It wasn't far. It wasn't safe. But when you said you didn't want ice cream I should have known something wasn't right. When you didn't wake up over the bumps I should have known something wasn't right.  I'll never forget how blue your lips were.  I'll never forget the awful ride in the ambulance.  Trying to call your dad but having to hand the phone over.  Standing by your side and talking to you - telling you how much I love you and how sorry I was.  Begging for your forgiveness.  Not wanting you to leave me but knowing it was too late.  So many people drove up to Dallas that night so they could have their last chance to you hold you too.  You are so loved.  You are so missed.  I hurt for you so much.  I try to stay positive. I try to think about you watching us all from above. That you're up there with so many others that we love and miss. But it still sucks. And it still hurts.  I don't want that to stop - the hurting - because then it would mean you are forgotten, and you never will be.  Cameron watched one of your Dora videos the other day - one you watched many times in the van...it was hard to hear it playing but I'm glad he enjoyed it. It's going to be hard when your brother starts watching shows...you had so many favorites that I'm sure he'll like at least one of them.  I just miss you sweet heart. You are and always will be my little girl.  I know it's selfish of me to want you back with me, but too bad. I do. I love your brother so very very much. I do hope you are talking to him. We talk about you with him - he will know you.  I'm sorry to babble on Angel. I just miss you and love you so much. And I just have so many emotions - guilt, sadness, anger, depression....it's just...it just is. I love you with all my heart!!!!

Monday, March 3, 2008

4 years old! That's how old you would be today. I can't believe it. We started thinking back through the last 4 years. All that we have been through. All that we have lost...and gained.  We have done more, traveled more, loved more, lost more and just plain been more than a lot of people do in 20 years. Like pop said - no wonder we're tired. :) But I wouldn't trade any of it for the world. . If I could get you back it might be a different story...or at least one to bargain for. :) But it is incredible. I can't believe you would be 4. I can't believe you've been gone for almost 19 months. I can't believe a year ago today your little brother was being transferred into me. So much is so unbelievable.  You changed our lives forever. For the better. I don't remember much about this day 4 years ago...I was pretty drugged after 12 hours of labor and a c-section. But I do know I loved you before I met you. And I've loved you ever since and I will love you forever more. Happy Birthday in Heaven. I hope you are having a great party and having lots of fun. We'll be eating cake, ice cream and cheetohs in honor of you. Thank you for being my daughter and making me a mommy (Ada) I love you my beautiful Angel!

Sunday, January 13, 2008

Happy New Year Sunshine! I can't believe I haven't written in so long. Time just flies by these days. I  miss you like crazy! I hate starting another year without you here. It's not fair. It hurts. I'm glad and thankful that we have your brother here with us this year. He will do and experience so much this year. I'm sure it will be lots of fun.  I know you will be watching over him...just wish you were here with him.

Christmas was ok. All the family was here..from Seattle and Maryland. It was wonderful!!! Everyone talked a lot about you. And Camden was spoiled with love and gifts. I think he had a good Christmas...he's too young to tell. But he was well loved that's for sure.  And, he was baptized on December 30th. He wore Papa's Christening gown just like you.  We had discussed having it around the time of your birthday but since family was here for Christmas we went ahead and did it so they could all be there.  It was sweet and simple and Camden slept through the whole thing.  But there were several sweet/funny things. It was at the end of Time With the Children so all the kiddos were up front, including Kieran. During it the Jim mentioned Camden becoming everyone's newest brother and she promptly raised her hand and announced he was already her cousin. It was funny.  Then at the end of each baptism we sing On The Day that You Were Born...it's a sweet song, but even more special b/c that tradition was started with you. You were the first one it was sung for...and the cousins from Maryland were here for yours too. After church we went to visit you...just to say hi and so my cousins could see where you are. They didn't make it down for your funeral last year. So while we were out there my little cousin again was talking about you...how sad it was that you died so young...she remembered feeding you chocolate pudding and how much you liked it. Then she took off her little silver cross necklace and gave it to you. She said she wanted to give it to you b/c  you are in Heaven with Jesus who died on the cross and that she knows you would have liked it if you were here. We hung it around one of the flower vases out there.  And I know you would have loved it.  After she gave you the necklace a butterfly flew right by in front of us. I know it was you saying thanks. It was just such a great day. Even the weather was perfect.  When we got home that night we saw a bunny hop through the yard. I know it was you again -- you always made the cutest bunny faces!

After we visited you  we went to mom and dads for some food and visiting. Camden's cake was picked out by Keven...he said it's our "Coming out of the Pits" cake. It was a Jeff Gordon cake...so like coming out of a pitt stop. We gave Camden some icing and turned his mouth blue - his 1st cake and 1st icing.

Camden is doing really well. He is perfect. It's amazing how a brother and sister can be so similar and so different and yet both be perfect. We love you both so very very much!!!

I've been job hunting again. We'll see what happens.

Please continue to watch over all our friends and family. Special prayers for Eden and any other sick kiddos, Sherry, Burton, and Deone. Keep shining your light beautiful angel. You are very missed and even more loved!!

Thursday, November 22, 2007

Happy Thanksgiving Beautiful Angel!!! Wish you were here with us. I know you are in spirit and in our hearts...but I wish you were here in our arms too. You would have loved the mashed potatoes and the pumpkin pie.  We're glad we have your brother here with us.  He's too young to appreciate the food just yet, but it's nice to have him in our arms.  We are so thankful that we have you in our life and we have Camden in our life.  We love you little girl!!

Saturday, November 17, 2007

15 months. 1 year and 3 months. All that time without you here in my arms.  It's too long. Too painful. I miss you so much.  You're a big sister now. Your brother joined us November 1st. Thanks for sending him to us.  We love him very much. He is perfect - just like you.  But he sure does make us miss you more...if that's possible. You should be here with us.  You should be getting mad because I'm holding him instead of you. You should be picking on him like any good 3 year old big sister. You should be bragging about being a big sister. You should be sharing your toys and at the same time getting mad about sharing your toys.  Of course I'm sure you're doing all those things in Heaven.  But it's just not right and it's just so painful.  He is wonderful though and he will know about his big Angel Sister.  He looks so different from you...darker hair, eyes and skin. But he has the same nose...and it gets the same scrunched up, concerned face...like your 'yucky' face.  It's amazing how much can change in 15 months.  How much of it I would give up in an instant to have you back.  It's also weird to think if it weren't for you - your brother wouldn't be here. I mean we would have had more kids...but probably not in the way we did and have the specific son we have. Just strange to think about.  And I hate driving with him in the car by myself. I check on him every chance I get just to make sure he's breathing. I feel so much better when someone else is with me. I hate driving by myself with him in the car....

Next week is Thanksgiving. You liked Thanksgiving...mashed potatoes and lots of dessert.  Lots of friends and family.  You made the cutest turkey sound too. 

I'm sad because I won't get to stay home with Camden like I did with you. I was so blessed and spoiled getting to be at home with you.  Yeah I still worked but got to spend every day at home with you and take care of all your Dr appointments and therapies.  It's going to be so hard to take him to daycare.  I would give anything to be able to stay home with him too. The 3 of us would have so much fun hanging out together all the time.

I'm just rambling, so I'll stop...but I love you and miss you.  And we love your brother and are so thankful he's here with us now.  Thank you beautiful Angel for bbeing ours. We love you!!!

Monday, October 29, 2007

I can't believe it's been so long since I've written. It hasn't been by choice. Pop rebuilt both of our computers and didn't leave FrontPage on either so I couldn't get on to talk to you.  I don't know how to do it using other supports.  But in all that time not a day has gone by that I haven't thought about you.  That I haven't missed you. That I haven't loved you with all my heart. A lot has happened and only  more changes to come.  Changes make me sad.  It means life keeps going even though you're not here. That's not right or fair. But I'll fill you in on the happenings. 

Your Uncle Chris got married. He married Elena and they are so happy. They love you lots and miss you too!

Cousin Edgy (Chris) is driving a truck now. I bet you would have liked to ride with him - way up high.

In July we went to Oklahoma to The Compassionate Friends Conference.  It was very emotional, but good to be around people that understood and "got it".  They love and miss their babies, of all ages, just as much.  I got a new job teaching.  I would so rather be at home with you...going to therapy, swimming, learning...you would have started school. We would be going to your school each day. You'd be zooming around in your wheelchair by now.  We would have gotten you a communication device and you'd be bossing us around even more! 

The one year mark of your going to Heaven passed.  It was really hard. Every day is really hard. We had a garage sale that weekend and were able to send money to SMA Support to help other kiddos.  It was good to have something to focus on...and to help others.  We had your favorites - cake, cheetos, juice...all the goodies. I can't believe it's been over a year. I can't believe any of it is real. I would do/give anything to have you back!

Your little brother is almost here.  There are so many emotions with him. We can't wait for him....but it just makes us miss you more too. You should be here with us. We should be a family of 4 here on earth.  He moves a lot in my belly...I think he's doing all he can and trying to make up for your movement.  He's going to keep us busy, which is good, and we are excited.  But so many emotions. So many fears. So unfair! He is going to be so loved and so spoiled.  Just like you :)

We miss our friends the Ostermayers. We haven't seen them in a long time. Too long. Poor Eric broke his hand and Hannah her leg and now Lee is sick.  Hannah broke her leg like you did in therapy. OUCH!!! Poor girl! I'm sure you are sending her extra love.  Also continue to send lots of love to Arlene and Burton. Today is Morgan's birthday. I hope you are helping her celebrate in Heaven!! I know you love parties - give her a big hug from us and her family.

Staying busy around here...better off busy...but missing you like crazy. Please send me some signs of love. I really need you these days.  We love you so much and miss you so much!!!

Wednesday, June 27, 2007

I'm SO SORRY my Angel Baby. I'm SO SORRY I didn't know something was wrong! I should have known. I should have pulled over and checked on you.  I should have had your pulse ox on you. I should have known and done something!! It's not right and it's not fair and you should be here!!! I miss you so much and hurt so much. It hurts so much to close my eyes and re-live that day all the time. I hate seeing you like that. I hate knowing I almost pulled over and didn't. I hate knowing you might still be here if only I had done something different. I'm so sorry I let you down. I'm so sorry I wasn't there for you when you needed me most. I'm sorry I didn't play with you more and read to you more. I'm so sorry your life was too short. I love you so much and you mean the world to me. I would give anything to have you back again. I would give anything to have that day back again so I could do it differently. I can't believe it's been almost a whole year without you.  I still don't know how I'm supposed to do this. I still hurt so much, and I know I always will...if I could just stop re-living that one day...that would help...I'm so sorry my precious girl. Please forgive me. I love you with all my heart and soul!!!

Friday, June 8, 2007

Hi baby girl! I tried to send you a message on mother's day, but the sites have been down lately. But on that day I just wanted to thank you for making me a mom. That day was so painful...but so is everyday without you.  But I am a mom because of you and I wouldn't change that for anything in the world. I love you so much and you are so much a part of me.

We haven't made much progress on your room. It's just so hard. We got out all your old baby stuff. Talk about memories. Good, but painful.

Not much is going on here. Just trying to get through each day. Thought it would start getting easier, but it doesn't seem to be. WE love you little girl and miss you like you can't even imagine.

I hope you were with Brayson this week during his surgery. Thanks for continuing to watch over us and all our friends. I love you with all my heart!

Thursday, May 3, 2007

Can't believe I haven't been on here more recently. We had a good scare a couple of weeks ago. I started bleeding and I of course thought the worst. We went for another ultrasound though and baby is fine. We are so thankful. Pop says he's not worried at all about baby.  He knew it was a sign from you...his "little turkey"...that this little one's due date is Thanksgiving day.  We are starting to get more excited. We're 11 weeks today. Pop has been talking about how baby is growing and painting your room for him.  It hurts to try and clean your room...to change it...to make it not yours...what am I supposed to do with your stuff? I can't get rid of it..it's yours.  Not sure how I'm supposed to do that.  We are getting excited and falling in love again. We're still scared though. What if I can't love this one as much as I loved you.  What if I'm scared to get close to him.  What if I lose him too.  It would definitely be a lot easier if you were here with us.

Hope you are celebrating today with Sophie on her 1st birthday!! Please keep watching over all the SMA kiddos..there are a lot of sick ones right now. A lot of surgeries coming up. And please give Mia and Kalair big hugs for everyone down here. I know they've joined you in the last couple of weeks.  They are very loved and missed.  Please keep watching over the Blando's, Burton and the Ostermayer's. 

I love you little girl.  I miss you like crazy!

Tuesday, April 17, 2007

8 Months Baby Girl. I can't believe it. I don't believe it. I don't want it to be true. I miss you so much!!!! I hope you are happy. I hope you are running and jumping and playing! I hope you're eating all the cake and ice cream you can!!  I love you so much!!!

We saw your sibling yesterday. It's scary to have another little one. We are so scared.  But we are also excited. I know you helped in giving us another little one to love. I wish you were here too. You were going to be such a great big sister. You'll be the greatest guardian angel ever!!

We love you little girl! You were and always will be perfect!!

Sunday, April 8, 2007

Happy Easter Sunshine!!  Doesn't feel like Easter. The weather isn't warm and sunny like April (or Easter) should be. But more importantly you're not here. Last year we had so much fun decorating Easter eggs and egg hunting and your Easter basket. This year we didn't do any of that. Just not the same without you. We're about to leave for church though...and we get to see the San Antonio family today, so that's nice. I love you my sunshine. Wish you were here!

Tuesday, March 27, 2007

Alrighty precious girl. I  need you to watch over some people for me. First, please pass our thanks along for Burton being cancer free and for our pregnancy. We are so happy about those 2 things.  Now...people that could use an angel right now....The Watts - their little boy recently joined you, Logan. I hope you greeted him and are sending hugs to his family. The Blando's as they begin the battle against cancer.  The Ostermayer's so they can sell their house and get moved and move forward with adoption so they too can have another little one to love. And of course all our friends and family and the SMA kiddos under the weather - just send down some extra love.  Do you think if you had known I would always be sending you to watch over people you would have left us here? You didn't have as much to do here :)  We love you little girl. We hope this pregnancy is a step in our lives heading back up hill. We love you and we miss you.  I hope you are happy flying around up there and being able to move freely and eat all you want. I hope you're happy. I wish I knew you were. I love you so much!!

Tuesday, March 20, 2007

Yeah baby girl! They finally officially said I'm pregnant! I know you helped with that :)  They said they're still concerned - to make sure it's not ectopic - and then of course make it the whole 9 months.  I'm so scared...I'm afraid to let myself believe it...I'm ready to love but scared to just yet since it's so early. Please stay with us through all this baby girl. I love you!

Monday, March 12, 2007

Oh baby girl. First let me say what a great party we had Saturday. It was definitely an up and down emotional day...but we know you were there! Thanks for playing with us!!  We sure do miss you and wish we could have shared some cake with you!

Second...my prego results were inconclusive. We have to do more bloodwork. I hate waiting and not knowing. But I hate even more thinking the worst and losing hope.  We will hopefully know an answer Thursday but...I don't know what I'm going to do if it's negative. I don't know where I'm going to go from there. Why can't I just have you back? Was I that bad of a mom? Why can horrible people that don't want children and/or don't care for them or abuse them...why can they have children and I can't? I just don't understand anything and am losing hope of having any more kids.  I wish you were here with me. SOrry for letting it out on you. I love you!

Thursday, March 8, 2007

Boy oh boy baby girl. I'm having a rough day. I love you so much and miss you so much.  I went shopping for your birthday party today.  It's just not right to shop for a 3 year olds birthday party and she's not going to be there. It's just not right and just not fair.  Your Pop and I are so tired of hurting and crying and being sad. We know we'll never stop loving you or missing you but we're so ready for some happy changes in our life.  We hope so much these babies will grow...at least one of them. We want you to have a sibling so much! They just weren't very hopeful at time of transfer so it's so hard to stay positive. I'm trying so hard to be positive.  They won't replace you - nobody could - but they could continue you.  They could keep our family growing. They could learn all about their big Angel sister. Please be with me Grace. Please help me keep going and get through all this. I love you so much and you brought more to my life than I could ever imagine. I miss you sweet angel.

Saturday, MARCH 3, 2007 !!!!!!

HAPPY BIRTHDAY BABY GIRL!!!!! We love you so much and miss you so much! I know you are having the biggest birthday party in Heaven today! Lots of cake and ice cream!!! We wish we could be celebrating with you. We did celebrate down here too. We had Dora cake and cheetos and sent you some balloons. We had some mashed potatoes for you last night. Hannah sang happy birthday for you. You are so loved!!!

I hope you were with us also today. We transferred 3 of your may be siblings. We’re very excited and nervous. We can’t wait to tell them all about you!

I found this poem on the web by Shari and liked it.

         A SPECIAL ANGEL 

I am so blessed to have had you for a Daughter.

You were always there whenever I needed you.

Your patience and kindness made a difference in my life.

You taught me well.

 

I feel your presence within my being,

in the everyday things I do and say.

I know somewhere out there an angel watches over me,

and I know in my heart that angel is you.

 

The spirit and love, within the heart, never dies.

It lives on forever through the people we love.
Your spirit and love lives within me.
I loved you then, I love you now, I will love you forever...

 

 

Tuesday, February 27, 2007

Well Sunshine, so far so good. We had 21 eggs!! That is just wonderful and amazing!!!! Of those 17 have fertilized. YEAH!  You would love being here with us. We got to fly on a plane and there's snow and it's so pretty. We've talked about you a lot and miss you like crazy! I know you're with us. I'm sure you had something to do with the transfer being this saturday. :) We've tried so hard to get up here and were hoping to be up here at the end of December but tests kept coming back weird and hormones off...and it pushed us back - right to your birthday. I'm guessing you helped with that. :) Thank you. We love you so much and miss you like crazy!!!!

Thursday, February 22, 2007

I don't know if it's the hormones, or the being away from home, or the visit to the hospital, or your birthday coming up...I've been crying off and on all day long! I had a good solid breakdown in the bathroom at the movie theater.  I felt silly, but it felt good.  I really just wanted to punch the wall and scream, but I just cried instead. And then ate a pretzel :) I went and visited a little girl today. She's not quite 2. She is so cute! Her parents are very nice and doing a great job taking care of her.  Few more days of shots....then the next step. Just wish you were here with us.  You loved babies! I love you baby girl and miss you!!!!!!

Sunday, February 18, 2007

Well...I'm here. I'm in Virginia. We've started the PGD process. I started my shots Thursday night. They aren't so bad. I give them to myself which is easier than I expected. So far the only bad part are the massive headaches I get. But, they'll be worth it. I have my first appointment tomorrow morning just for a blood draw. Hard to believe a little less than a month from now we'll know whether you're going to have a sibling.  We hope this works so much! We have 2 friends that have just done it in the last month or so - both are pregnant and one has heard 2 heartbeats! It's so exciting!!

On the other end is our little friend in Dallas isn't going to make it and I can't be there with the family. Her situation sounds a lot like yours. Lack of oxygen to the brain.  I really want to be there for them and with them. I wish I could.  I know you will great her in Heaven and welcome her and..share your ice cream? :) Please send love down to her family. Her grandfather passed away this week too. I ache for their family.

I have so many emotions about all of this. I'm scared to have another baby. I want one like crazy...have since before you were born...but I'm scared. Scared I won't love them enough...that I won't feel the same about them as you....that I will lose them too....that I won't be able to hold onto them because they will have so much strength and wiggle and squirm like you never did....scared that they will have SMA and I will have to lose another precious angel.  I'm also scared that this won't work at all and we won't be pregnant. I'm not sure our hearts can handle that. And I don't really want to learn if they can or not.  I'm also excited at the thought of having another little one...of having a baby to hold and love...of telling her little brother or sister all about you and how special you are and how lucky they are to have such a wonderful guardian angel as a big sister.

I have been lost since losing you. I was your mother. For once my life had importance and made since. I love being Pop's wife but he can do without me. You couldn't. I love you so much and felt the role of mother was my calling in life. I have felt so useless and not  needed and just lost without you. No meaning for me. I'm ready to continue being a mom.

I love you little girl. You're my life and spirit. I miss you like crazy. Please be with Pop and I through all of this. We love you so much!

Saturday, February 17, 2007

Six months!!! That is unreal to me baby girl. Six months. Sometimes it feels like 60 years and sometimes it feels like 60 seconds. I still cry and miss you like crazy. I still relive that day way too often. We watched some video of you last night. I bawled through the whole thing. You were so perfect! And such a 2 year old. You cracked me up :)  It's also hard being away from Pop today. I'm out of town. I hope you're here with me now. I miss you so much and I love you so much!!

Thursday, February 8, 2007

Man, February already! We're supposed to be doing your Valentines for the group valentine exchange. We're supposed to be taking cute Valentine pictures with Kaiden. We're supposed to be eating lots of chocolate and mashed potatoes. We're supposed to be driving your powerchair around and learning your ABCs and watching Dora! We're supposed to be doing so many things with you!!! But we're just missing you instead. We don't go a single moment without thinking about you. You affect every thought, decision and choice we make. You would like our new puppy - Apollo. We got him a football collar :) He gives good kisses, but nowhere near as good as  yours. He was trying to bite my hair this morning - thought of you pulling it.  Hannah still remembers you pulling her hair. It's so cute. I'm glad she remembers you.  We miss you so much!!! It's just not the same without you!!! I heard you got to share ice cream with Phylliss's dad. That was very sweet of you! And I hope you helped Joseph celebrate his birthday last week. Please continue to watch down over us and be the wonderful guardian angel that you are!!  Please be with us, and the Ostermayers and Joanne (and some others to remained unnamed) as we go through IVF/PGD. We all just have so much love we want to share and give....Nobody will ever replace you!!!! But they will know all about you. :) WE LOVE YOU AND MISS YOU!!!!

Saturday, January 13, 2007

I miss you so much. I hurt so much. I just want to hold you and kiss you. I want you to pull my hair and laugh about it. I want you to say "poop". You were the most perfect little girl in the world. I just don't understand and it's just not fair. I would do anything in the world for you. I would do anything in the world to be with you again. I love you so much and I miss you so much!

Monday, January 8, 2007

Well baby girl...I got discouraging news Friday...that my ovaries are prematurely aged so our chances of getting pregnant have been cut in half. That makes me so sad. But between my irregular tests and your Pop's irregular tests...it just shows again how important and special you are. You were meant to be here and be ours.  The chances of us getting pregnant are 25-30%. The chances of you having SMA was 25%...So you beat a lot of odds to be the wonderful Angel you are!  WE MISS YOU!!!!!  WE LOVE YOU!!!!!!!!!!!!!

Monday, January 1, 2007!

I can't believe it's January! I can't believe it's a new year!! We are so hoping that this year is better than last!!! It's going to be harder one since you aren't here. As much as we keep saying last year sucked...at least you were with us for eight and a half months.  This month is starting out behind because you aren't here.  But we are hoping it will be a decent one...and that you will watch over us and be with us through it all.  You are a major part of our lives and we love you and miss you!!!

Friday, December 29, 2006

I can't believe I haven't written to you in over a month. I haven't stopped thinking about you a single second. I talk to you all the time. I miss you like crazy.  Christmas of course wasn't the same without you. You would have loved it this year. You were getting so into it last year, this year would have been amazing. We talked about you, cried, laughed, hugged...we always do...you are so missed and so loved. Pop and I are ready to get 2006 behind us. We are hoping so much that next year will be better.  If we could have you back it would be perfect. Or have that day to re-do so I can do it differently and do it right...and maybe you'd still be here.  I just don't understand. It's just all so unfair.  Why can mean, bad, corrupt, murderous people live for years and decades...and precious innocent Angels...you, Morgan, Kaitlin, Cole, Nathan, Sydney, Braden.. and so many more...are taken way too soon! It's just not fair and I don't understand! What I do know is I love you and miss you. You were amazing from the day we knew you were to be part of our lives.  You changed us forever and will never be forgotten.  I wish I could hold you again.  I hope you are up there picking out the perfect little brother or sister for yourself. Nobody can ever replace you but hopefully we can share our love with another little one. Please tell them all about everyone down here and how much they are loved already.  Tell them to call us Ada and Pop...and that their first word should be Poop :)  I hope you are eating tons of mashed potatoes, ice cream, chocolate and juice.  I hope you are happy. I love you and I miss you!

Monday, November 20, 2006

                                                 

We've been hard at work this weekend making a Grace Garden.  Mom, Dad, Ryan and Regan all pitched in a lot and helped a ton - we couldn't have done it without them! It's a butterfly garden and there were butterflies all around while we worked. It was cool.  It's not quite complete...going to add more mulch, some stepping stones, a trellis and hook up the fountain. but the  hardest part is done.  So glad the weather has been so nice so we could do it.  The birdbath has butterflies and dragonflies on it. Great symbols :) The bench has a saying on it...if tears could build a stairway and memories a lane I'd walk right up to heaven and bring you back again. It's great. Can't wait for the spring so we can really enjoy it and all the butterflies. Plus the holidays will be over. I'm really dreading those. Just want to sleep through them all. We'll get through it though. I know.
 
It was also interesting b/c I played in a Church Dedication Mass on Saturday. We had a concert Friday night - Grace's 3 month angel day. I of course broke down crying...when the children started singing What Child is This. I've boycott Christmas this year so that was hard. But more than that...I used to sing that song to Grace all the time. So, I lost it. I just wanted to hold her and sing to her. But then they said a prayer and mentioned names of 2 people that couldn't be there...one of them happens to be the person buried next to Grace. I thought that was just too much of a coincidence. It made me feel like she was near and I was meant to be playing there. I may be searching too much for signs, but it felt like a good one. He was the person that found the land for the church.
 
Hope everyone is doing wonderfully and has a great week!

Friday, November 17, 2006

Three months Grace. Three months since I last held you in my arms.  Boy do I miss you like crazy!! Part of me feels like it was just yesterday and the other part feels like a lifetime ago.  It was a lifetime ago.  A different life. I miss that life. I miss you. You were, are and always will be my precious angel and baby girl.  I had a concert tonight. I hadn't played since you left us.  Kids were making noise in the audience. It made me think of the Christmas concert with you and Kaiden talking to each other. Then the children's choir started singing "What Child is this". I lost it. I cried. I miss you!!! I don't think I could ever say that enough. I love you with all my heart. Pop and I both love you with all our hearts. We love each other so much and are so happy we have each other.  But we still feel incomplete without you here with us. Sending you lots of hugs and kisses up to heaven!!!! I LOVE YOU!

Thursday, November 9, 2006

I love you Grace Dyan. I love you with all my heart. I think about you every day!! I miss you every day!! I would do anything in the world for you! I LOVE YOU WITH AL MY HEART!!!!!

Friday, October 27, 2006

I feel the need to write. I don't talk much, writing is better, easier for me. Maybe I feel the need b/c I'm trying to cut back to only 1 pound of chocolate a day. Who knows...but I apologize in advance as this will be long, emotional and discombobulated. I'm sure this is one of those I should write and not post but feel the need to. I don't know why. I don't want/expect anything back. It's just therapeutic for me to let it out this way. .
 
The short of it - prayers for the Ostermayers to sell their house.  Prayers for the Ostermayers and ourselves that we will do PGD/IVF and it be successful so we can both expand our families. Prayers for Campbells to sell their house. Prayers for Isabella who has been in the hospital for a week..slowly getting better. Prayers for us all to figure out how to live without Grace.
 
The long of it - more for me than for you - sorry
 
Want to ask for prayers for our friends - Eric, Lee and Hannah. Many of you know who they are by now. We have known them just over a year but are connected on a level none of us knows and so they are our other halves, our best friends, our soul family. Their beautiful daughter Hannah (did you know the meaning of that name is Grace?) is 3 weeks younger than Grace and has SMA 2. She and Grace are still good friends. First prayer is for them to sell their house. They bought a big beautiful project house before Hannah was diagnosed. Of course there has been no time to fix it up. But more than that...Grace. For those that don't know it all...Grace and I were driving to Dallas for Dr appts. We were going to their house to hang out, spend the night before the appts. Grace and I stopped awhile before, about an hour or so...had a diaper change, tube food..played on the floor of the van.  We got back on the road and Grace fell asleep. About 20 minutes from their house Grace woke up and fussed. I told her we were almost there and we would have ice cream with Hannah. She said no. She never says no to ice cream. I should have known something was wrong. I have so much guilt in me for that day. So much anger, frustration and guilt to myself. I should have pulled over. I should have had a pulse ox on her since I wasn't watching her every minute. I should have let her lay on the floor like she wanted.  She went back to sleep, or so I thought. I took the exit for their house but turned the wrong way. I had printed the wrong directions. I drove all through a neighborhood trying to get back to the road to get to their house. There were lots of bumps. Usually Grace says Yee Haw or wee on bumps. She "slept" through them all. I thought it was weird. Finally got to their house. Pulled into their driveway. Eric came out to meet us. I turned around to get Grace and knew something was wrong. I won't go into detail b/c this is an image that I am stuck with in my mind that I can not get rid of. An image that I see all day and night every day and night. An image that only I was there for so nobody else can understand, which is good. I'm glad nobody else has that pain. So we ran in the house to their living room where Eric performed CPR. I was screaming. Hannah was crying b/c she was scared. EMS came....we left. I haven't been back to their house, or Dallas even, since then. Too much pain in that drive that I took so many times for Dr appts, SMA things and visits. Too many memories in their house. They need out of the house even more now b/c they have to live there. They have to see everyday where Grace laid. I can't imagine. I have it in my head and see it every day and that's bad enough but to see it everyday in real life. Please pray that they can sell their house quickly and move to a new home to start new memories.
 
Prayers for their family and ours. We both are starting work on the PGD/IVF. The hardest thing about this - besides the emotional of the guilt we feel of "replacing" Grace. We know we're not. Nobody ever could. But she wanted a brother or sister. And we wanted her to have one.but it still just feels weird. The fear that I won't love any other child like I did Grace. The fear that they will grow up no knowing enough about their big sister or that they will feel 2nd to her. But also prayers for the actual procedure.  We could do all this testing and procedures and the pregnancy not take. Spend all this time, money and emotions and not have a baby. Please pray that both our families are blessed in the procedure to bring another beautiful child into our families.
 
Prayers for the Campbells. They have twins - one with SMA. Their house is also on the market so they may move closer to friends and family and have more of a support system closer.  Pray for them to sell quickly too and have a smooth move.
 
Prayers for Isabella. She has SMA type 1. We met her in August. She's not 1 yet. She's been in the hospital over a week. She had a cold and of course as SMA does, it progressed. They had to revive her and she is slowly improving. Keep them in your thoughts and prayers.
 
Prayers for our friends the Fords - going through medical/health issues.
 
Prayers for all of us in our daily struggles, losses, guilts, etc that life is so full of.
 
Prayers that we may all figure out how to live without Grace here with us. I know that if you're receiving this it means Grace touched a part of your life and you too have an ache in you. I hope that you can heal too.
 
As for us...people think we should be "fine" by now and things should be "normal" again. They don't understand when we just start crying for "no reason".  Every day is still a struggle to get up and do anything. Everywhere I look are memories of Grace. Shoot, ice cream was one of her favorite foods and I work at Dairy queen. Wal Mart her favorite store. Bumps on the road, Dora the explorer....Sheesh, today I got my hair cut and feel guilty about that. I had kept it long b/c she liked holding it. I like it long..or on the longer side...but I had thought about cutting it for awhile but didn't b/c she liked to hold it. Now it's short. I feel guilty that I cut it and didn't keep it long for her.

I started reading a new book today. Maybe that's what brought all this on. But there was a little section that made perfect sense...and sort of descriptive for others...thought I'd share....
 
The fog still hasn't lifted. I move, I walk, I talk, but it is all automatic.  There is little feeling.  Sometimes the fog lifts and the feelings rush in.  Then, all I can do is cry. It seems the only time I am real, reacting honestly, without guarding every word or look, I start to cry.  When the fog lifts for a brief moment, it's as though someone just kicked me in the stomach.  As I am reeling with the pain, my mind registers the core prevailing thought: Grace is gone. Grace is gone. When I can't stand the pain anymore, my mind goes back into neutral, back into the fog.
 
Again, I'm sorry this is so long and depressing...just felt the need.  Our hearts and prayers are with each and everyone of you in your lives. We only wish the best for you all. We know that we are not the only people to suffer. Not the only to have lost a loved one, or a child even.  We know we are not the only one's out there. We ache for you and your losses and struggles too.  We pray that we may all find a comfort of some sort for whatever it is that makes us ache.

Tuesday, October 17, 2006

Two months. Two months today.  Part of me feels like that was just yesterday and part of me feels like it was a lifetime ago.  I guess it's both. It was definitely a different lifetime.  It's not the same any more. Never will be again. Nothing has gotten easier.  We miss you and love you so much.  Pop and I are hanging in there. Thank goodness we have each other.  W'er blessed to have all the other friends and family we have too, but thank goodness we have each other.  I love you sunshine. Always have, always will. Butterfly Kisses up to Heaven for you!!! 

Friday, September 29, 2006

Last night Pop and I went to dinner. It was our 4 year wedding anniversary. It was such a hard day to celebrate. So much has happened in those 4 years - most importantly you. But to go back and time and think of 4 years ago...when we were young, carefree, worry free and so happy. We never had any idea what was ahead. It's hard to remember those times. We're still happy and will be celebrating a 50th anniversary too. I have no doubts or worries about that. But we just miss you so much. And then to just come home after dinner...not go pick you up from Marmee's. It just wasn't right. Did I ever tell you your Pop and I got engaged March 3, 2002. Two years to the day before you were born. What a good day.  We love you so much and miss you so much. I wish I could see you laugh and hold your hand. I love you....

Thursday, September 14, 2006

Four weeks. Four weeks. Can't believe it's been four weeks. Sometimes it seems already four weeks and other times like only four weeks. I just can't believe that four weeks ago today you left us. You were so excited that morning when you woke up. I told you we were going to see Hannah. You were excited. You couldn't wait to go...kept saying bye so we would leave. You spilled your football juice on the floor but I knew before I handed you the cup that you would. :) I miss you so much. I still feel so much guilt and coulda, woulda's....I would do anything for you..even now...I wish I could turn back time...If I could just have that one day to do over again I would do it differently. I love you so much. When you left so did my heart and soul. I know you have lots of friends and family up there. I'm sure you and Sister Mac are having a great time, eating lots of ice cream and going on walks.  But it sure is hard for us down here.   You will always be my baby girl.  I LOVE YOU!!

Wednesday, September 6, 2006

I miss you so much Grace. I love you so much and still can't believe you are gone. It all seems so surreal. You were and are my life. I'm so glad I have your Pop! We're really trying to help each other through the days. We love each other so much. But we miss you so much. Everything we see and everything we do reminds us of you. I could go on and on for a long time, just rambling, but the only thing that matters is that I LOVE YOU and miss you with all my heart!!!!!!!!!!!!

Friday, August 18, 2006

I'm so sorry that you've had to receive the information that you have through email. I can't pick up the phone to call one person, much less all of you.

 I'm sorry that anyone ever has to lose a loved one

 I'm sorry that I didn't pull over when Grace fussed. She was tired of being in the van and I thought it was just that. I should have known when she said she didn't want ice cream that something was wrong

 I'm sorry I didn't give her ice cream for breakfast Thursday. She did have mashed potatoes though.

I'm sorry you couldn't all be there with her Thursday night, but she was with many who loved her and in her Pop's arms. 10:29 PM she joined all the other So Many Angels of this terrible SMA.

 I'm sorry I don't know funeral information yet but will later this afternoon and will let you know

 I'm sorry I didn't make more play doh snakes with her or read more books or go swimming more often

 I'm sorry I won't answer the phone or your emails

I'm sorry for Human kind and their loss. It's not fair! She was, and always will be, perfect.

 Donations in memory of can be sent to www.smasupport.com or www.fsma.org

Thursday, August 17, 2006

Grace joined the angels at 10:29 PM in her Pop's arms, surrounded by family and friends. Life will never be the same...

Thursday, August 10, 2006

Well the garage sale was a success! Wasn't quite as great as last year, but we couldn't compete with the new outlet mall :) It was certainly nothing to sneeze at though!! Thank you to everyone that helped! We had so many donations and baked goods and volunteers. THANK YOu!!! I'll try and get proper thank yous out soon. But THANK YOU!!! And of course I'm in the same spot I was last year at this time - never again - but we saw how well that worked this year ;) I will promise that if we do have it next year, as I suspect we will, it will not be in August (or June or July). I know all the volunteers will be happy to hear that!
 
Next week off to Dallas for wheelchair stuff and Scoliosis clinic.

Wednesday, August 2, 2006

Thursday morning we'll be filming our spot for this year's MDA telethon! When we get details of the airing I'll let you know :) Can't believe it's almost Labor day!!! I've decided just to color the big zit on my face brown and pass it off as a mole :)
 
Garage sale...ok....plan is....I work this evening (wednesday) so...I will be at the church Thursday evening - after the interview and Grace's nap - probably after 4- moving chairs, setting up tables, etc...
 
The major work will be Friday - getting everything from mom and dad's and the storage unit, sorting it, pricing it, making signs, etc...We will do some group pricing like books, videos, etc...I plan to be at the church by 9:30 Friday morning. So if you want to help either of those days, come on up...or if you have more stuff to drop off bring it on up...or if you want first dibs/shopping :) We'll play everything by ear as far as times and meals, etc...Saturday the sale starts at 8...we will have baked goods too and be selling waters. Probably not going to do soft drinks this year, just water
 
August is SMA awareness month so help spread the word! I've attached 2 sort of letters to help spread the word. Tell everyone you know :)
 
Keven's job is going well. He keeps going back ;) It's new and different but he's learning and doing well, no suprise to me! He can do anything he wants and do it well. Grace and I are so blessed to have him!
 
Someone recently asked me about me...I always talk about Grace and recently about Keven. They're the important ones in my life! All is good on my end - chugging along - overworked, overstressed,overtired - just like the majority of Americans ;) . Working P/T at DQ, working on a course from home for medical transcription so I can work from home, orchestra is about to start up so I'm debating whether to play this season, staying busy with the Texas FSMA chapter, Grace's therapies each week and doctor appts, and thinking about applying for a position on the governors committee on people with disabilities...So, never a dull moment - but again - just like the majority of americans, so that's why I don't mention myself. I'm no different than all the rest of us!. I am just thankful to have a job and things to worry about and a house to clean (or rather dirty) and things to keep me busy. I am thankful for exhaustion and stress! I could probably find better ways to handle it all, but I'm thankful!

 

Monday, July 24, 2006

Sorry - this is going to be a long one :) I tried to break it up so you can read it in pieces or skip sections. Sorry.
 
KEVEN - One prayer has been answered. After 3 long months of looking and 3 even longer weeks of official unemployment Keven has found a job. YEAH!!! He starts Monday (today) at Gila Corp - www.gilacorp.com - doing IT - He has a 90 day wait on benefits to kick in but one of those is covered by his severance package and the other 2 we'll just do Cobra.  He's very excited to get back to work and we're so grateful it all worked out! Then on Wednesday he'll be having his wisdom teeth taken out. YUCKO! I'll be sure to take good care of him though (and take pictures of him with his puffy cheeks) and hopefully Grace will share her pudding and mashed potatoes :)
 
FSMA - We went to San Diego July 12-16th. The National FSMA Conference was held there. This was our first conference to attend. It was pretty good. Got to meet lots of people, doctors and hear a lot of good things happening. We met THE pulmonologist for SMA. She came up to our room and adjusted Grace's BiPap - changed just about every number/setting on it. Grace is sleeping much better with it now. She used to fight it. Now it works for her. YEAH!!! And she gave us her regiment for breathing treatments - so we're going to start trying to do them that way - at least every other day or so. Our current one we use is about 5-10  minutes long - granted it's for maintenance and not illness. The one she recommends, and we did do when she was sick, is about 30 minutes long. So we'll probably alternate those 2 for maintenance now. We talked to the PGD guy - the pre genetic diagnosis - where they test the embryos before they implant them. He was very nice and helpful and friendly. But, the cost is still (and will be probably forever, ok, maybe just a really long time) about $18,000 and since it is IVF, there's no guarantee it will result in pregnancy...So, it's definitely not in our cards. But it was good to talk to him and learn a little more and definitely close that door. There is some exciting news on the research front. Looks like stem cells are going to be the way for a cure - or at least one of the ways. They are making a lot of progress with stem cells. The biggest thing is that they can make it grow into what they need - stem cells can grow into anything but they have figured out how to make it grow into what they need specifically - I think the motor neuron. I missed the research session and got a shortened version so don't remember exactly. But they'll have the info posted on the fsma website soon. But it's exciting! And here's a link with some stuff about stem cell too http://www.hhmi.org/news/dreyfuss20060721.html  They are still doing other drug trials and making some new drugs...they're getting SO CLOSE to a cure!!! While in San Diego we did make it to the zoo and the beach too. It was great! I'm trying to keep the Texas Chapter website updated so check it out every now and then for more info and the chapter newsletter. www.fsma.org/texas
 
UTAH - Got home Sunday night, 16th, and then Grace and I turned around (along with Aunt Amy) on Wednesday (19th) to go to Utah. Was time for her check up for the drug study. We did just go at the end of May but it was a delayed appt b/c of her legs, so it was time to go. It was a GREAT visit! All her numbers are up!! She did wonderfully!!! She's just under 21 pounds - about 20 and a half, and about 35 inches tall. Her contractures in her knees have gotten tighter so it's hard to get a good measurement. But that's pretty close. Her chest circumference went back up (we've been using her cougher more often). Her MUNE number went up 1 -so we'll take that :). Her bone density went up a little - a side effect of a med they started her on last time. It wasn't huge and she still basically has no bones but every little bit counts!! She even did a pretty good job during the PT exam and pulled the cloth off her face for I believe the first time! They were all VERY pleased with her. YEAH!!! We go back in October, that'll be the end of the study so then we'll see where we go from there :) I did learn something new...what is lacking in SMA is the SMN protein. There are backup copies and we thought (b/c that's what we had been told) that strength was directly proportional to backup copies. That's why we were so excited when we found out Grace has 2 - and maybe 3. A third one was seen but wasn't quite as dark (the way they test...) so don't know if it's fully functional...BUT while the copies may play some role in it it's not the only factor. There are type 1's much weaker than Grace with 2 copies and they even know of at least 1 type 3 that has only 1 copy. So...there's even more to it. Just interesting. Got home late Friday night only to get the chair from the plane and find it with some 'issues'. They were very nice about it though and we'll get it repaired and just bill them directly. It's still useable - just a little banged up. :(
 
GRACE -  Like I said - she is doing great! We are so thrilled! She has been running a slight fever the past couple of days but I think it's a cross between exhaustion (as we've been everywhere and 8 different planes in the past 2 weeks), allergies and teething. It hasn't slowed her down any, that's for sure. She has turned into quite the silly little girl and just makes the funniest sounds, faces and gestures. She has learned to say please (sounds like leez) and is starting to put 2 words together or a gesture and word together. We have started speech with the local ECI program. And for the 3rd assessment in a row she's scoring right about at a 3 year old level for receptive and understanding but not for expressive. They put her at about 16 months for that. That would be why she gets so frustrated - she knows what she wants/needs/is 'saying' - but she can't get it across. We'll get there though. She definitely knows the definition of "MINE" (as most 2 year olds do) and thinks everything is hers and does not want to share. She loves to give kisses and make all her toys kiss. She loves Dora the Explorer (wants a baby brother named Boots), Thomas the Train and Clifford. She loves to eat and most of the time wants a toy there to feed as well. She's very determined to feed herself and with minimal assistance she can. Still eating things like pudding, mashed potatoes,applesauce,etc...We are going up to Dallas in August to try out a whole bunch of different controls for her powerchair. She's still not driving it - mostly b/c she's afraid of hurting her leg again but also seems to struggle with the joystick. So...we'll see. We are working to get her stretched out so she can get back in her stander. That will help with her bone density and her hips which are starting to dislocate. It also helps with overall health. So again, we'll need to adjust her routine to do about an hour of stretching and range of motion, etc..to help work out the contractures and build up strength/endurance. She's amazing though!
 
GARAGE SALE - I can't believe it's in just under 2 weeks! I'm so NOT ready! :) But I know it'll all come together and be great! It will be at the church again. There is a PDF file on her website of a flyer you can print out to hang up/promote it if you want. We have a storage unit (thank you Joyce!) filling up and my parents garage is pretty packed. The next 2 weeks will be lots of pricing, sign making and promoting - so if you're ever bored feel free to pop into mom and dad's and price a box :) I'm not that picky on prices - just makes it a lot easier to have them priced since we have so many wonderful people help at the sale.That's probably where Grace and I will be a lot of our "free" time the next 2 weeks. We are going to try and sell some of the bigger items on Craigslist before the sell (www.austin.craigslist.org) or more valuable things there or on ebay. We are also planning to do the bake sale along with it again. If you have items to donate can bring them to my mom's or the church or we can come pick them up. You're doing us a favor so we want it to be as easy on you as possible! I still need to go through all our stuff too :) Last year was a huge success and helped so much with her expenses. Not sure how we would have made it the last year without it!
 
OTHER -  August 12 is a fundraiser in Ft Worth - Odds On A Cure. It's a lot of fun (we went last year) So if you're up that way that weekend.... http://www.savannarush.com/   I guess that's all the 'other' there is. Thought there was something else, but since I can't remember and this has gotten really long....I guess I'll just stop there.

 

Wednesday, June 21, 2006

Blood results from Utah showed she is doing ok. She had a few deficiencies, but we're tweaking her diet and that should take care of those. The good news is that she's not getting enough fat/protein so we get to add some of that :) She's not real far off from it, just add a touch of them. I'll tell you though I feel like a drugee when I mix her food with all her medicines and supplements...her 1st morning food gets....9 different vitamins/medicines/supplements mixed in. I feel horrible, but they're all for her own good. Poor girl. Actually i guess I should look at it as lucky girl - that we know enough to have all of those.
 
Fundraiser over the weekend went really well. We were VERY worried when we woke up to thunderstorms (thankful for the rain, but not the timing) But it all cleared up in time for the event. We (the chapter, not just us) raised over $5000 for FSMA - majority of which goes to research. YEAH! We felt good about our first fundraiser. And so thankful it's over - for the most part (thank yous, follow ups, etc...) Couldn't have done it without Mike and Arlene and Dairy Queen. THANK YOU!!!!!
 
GARAGE SALE - yup, we're doing it again, crazy but true. After last years...we were so exhausted - but it was such a great exhaustion and too big of a success not to do again. It helps so much having a Grace fund and knowing there's money for her expenses/needs, especially with all the insurance changes we've been going through and looking for a special potty chair, blah blah blah. Anywho..it will be at the church again and will be Saturday, August 5th!!!  We're glad to take all your junk. I need to start pricing stuff now so we don't have to do it all the night before. Mom and dad already have a bunch of stuff in their garage. YEAH!
  
Keven is down to his last 2 weeks at MCI/Verizon. It's the point now he's just ready to be out and moving forward. Still on the job hunt but had a good interview yesterday with American Cancer Society. They had some more interviews this week, so...we'll see.
 
Many prayers for some friends of ours. Their daughter Kaitlin passed away last week - almost 10 months old

 

Wednesday, June 7, 2006

We had a good trip to Ohio. It was nice to be around our SMA family. I saw a few people I had met before and lots of people I hadn't met in person, but thru chat. It was great! Also reminded us how blessed we are to have Grace in our lives. We went to the Newport Aquarium and the Cincinnati Zoo and swimming and just hanging out. It was lots of fun, but glad to be home. It'll be nice to be in our own bed tonight.

Friday, June 2, 2006

We did make it to Utah. We were supposed to fly out Tuesday, but then the flights were full so we got to fly out on Monday. Won't complain about an extra day in the beautiful 70 degree weather. :)
 
Tuesday morning we had the MUNE and blood draw. The MUNE is the EMG test that tests movement/electricity in the nerves/muscle...something. I know I've been told a lot of times but...Anyways, her numbers had dropped since our last visit. :(  Not a whole whole lot, but they had dropped. They said some of that may simply be b/c of the stress of the broken legs and b/c of her growth.  She's up to about 20 pounds and 33 inches.   But that it did show the PBA wasn't over compensating for that. They increased her dosage some, so we'll see where we go from there. Also, her chest circumference has gone down - which isn't really a good thing. So we will have to pick up the slack we've had in her breathing treatments to help that.  The rest of the day we hung out in our room, took a nap, and hung out with the Campbells (they have twin daughters - precious little girls) Had fun hanging out with them and getting to know them better.
 
Wednesday was the Dexa scan. The DEXA scan does bone density, lean body mass, bone mineral density ....her lean body mass has gone up and bone density has stayed almost the same. It went up just a bit. But on the picture it does it in a spectrum - so like white is the densest part and black least dense...it showed basically no bones in her arms and lower legs -meaning they are very low density and very prone to fractures. :(  We had started her on iron supplements and vitamin c supplements as last time the bloodwork showed her a bit anemic and a vitamin c defiency. The Vit C really baffles the Dr, so we'll see what this bloodwork said - if it's better now. She has also been border line metabolic acidosis - acidic blood, another common problem apparently with SMA...The kidneys don't filter enough out, and/or lungs don't expell enough carbon dioxide (true since they don't have regular deep breaths), protein from muscles can bind to the acid to help buffer it - but with a low protein diet and needing all the muscle you can have...and then calcium from the bones can also help buffer it...SO...they've started her on yet another medicine...that is supposed to help with the acidic levels and in turn hopefully help some with bone density. It won't be trying to pull out the calcium to buffer it and all. I really should take notes or a tape recorder when she talks so I don't miss or forget stuff... So, she's starting that medicine and then we'll do the bone density test next time we come and see if there is any difference. If not we have another route to try- an IV drug to help with bone density...but we'll cross that bridge when we get to it. After all that we went down to temple square for a little bit. We didn't spend much time there as it was almost lunch time and grace was hungry and just kept saying "poop" and "mmm" meaing, I need a diaper and I want ice cream. But we walked around outside and it was beautiful! And went in one visitor center. THe tabernacle, where I really wanted to go, was under construction.
 
The PT part was Thursday morning. She did ok on it. They never make comments or comparisons from her previous things...but she held her head up some while in a sitting position and when helped by the leg could roll from back to side...she refused to try and pull the cloth off her face...who knows. :) Then off to the airport to come home.
 
Thankfully they were able to provide us with a few more months of the trial drug. They are running low on it and weren't sure if they would have enough. We are supposed to be seeing if our insurance will cover it, but since our insurance is changing sometime in the next few months we don't want to battle it twice. So we're waiting. BUT, we are hoping whatever insurance we have will cover it b/c it's a $$$ drug. We've heard prices of over $2000 a month...one family their insurance would cover it but only at 50% b/c it's not a generic - would still cost them $1000 a month. So...again, we'll cross that bridge when we get to it ad who knows what will happen between now and then...And there is another trial drug they have had good results with so may look at that one - we have several friends using it...who knows...
 
Keven's job hunt is still hunting. He has 1 more month at verizon and then...who knows what. He is looking and is trying to remain positive that it will all work out. We're sure it will, but sometimes when you're on the bottom looking up - it's hard to remember :) But at the same time we've already overcome so much we know we can this too.
 
We are having our 1st annual FSMA Fundraiser on June 17th at Jonestown park - starts at 12 until 10...bar b q....bands....silent auction....raffle....come and go.

 

Please keep Julie and her daughter in your prayers - http://www.smaaustralia.com/- she and her husband lost their a daughter last June to SMA - she was 10 months old. They started a great SMA organization in Australia and are really working to help others "down under" Her husband was killed last week in a freak auto accident. I can't even imagine what she must be going through. Please keep her in your hearts.

Thursday, May 25, 2006

YEAH!!! We went  Wednesday  and got the other cast off. Of course her leg is sensitive and all, but it's  off!!! She LOVED being back in water.  Saturday she gets to go swimming with her cousin - his name is Giuliano and she always remembers Thanksgiving when she and Keven played football with him so anytime we say his name she says football :) Then off to Utah next week. Woo hoo!!

Thursday, May 11, 2006

Grace wanted to wish everyone a happy mother's day. Whether your kids are here on earth or watching you from Heaven above - or are other people's kids that you love like your own - you're all special and important to us and we hope you have a wonderful weekend!
 
Grace is doing very well. She had a recent growth spurt and is getting quite heavy and a little awkward with the longer legs and arms :) I am so thankful to have such a problem!! It means she's healthy, growing and ALIVE :)

Two more weeks with the cast - YEAH! Then we'll hopefully be in a pool as much as possible - it's great for her - stretching and movement and she loves it!
 
Speech therapy was approved and we started back to that yesterday - although of the 2 times we've gone the therapist has been at least 10 minutes late both times. So...we'll see what happens next week. But we are back to that and we'll see what way that road goes.
 
Our physical therapist put in her 2 weeks notice :( We're not happy about that and she doesn't really want to leave us. We are going to stay in touch and keep going to the center we're going to and then after Keven gets a new job and new insurance we'll try and switch over to her place so we can keep seeing her. It'll be good for someone new to see Grace - for a new perspective and all, but we really like our current one. She's been with us since the beginning, so we're all very attached. And the company she's going to is home health, so she could come here and do it YEAH! (would be nice since we're now driving 175 miles a week for therapy - but again - a great probem to have b/c that means she's healthy and strong enough to go to therapy and leave the house) She would also like to get certified in water therapy, so then could come to the neighborhood pool and do that with us there!

Other than that Grace is doing wonderfully. Quite the drama queen and definitely a 2 year old ;) We're beginning the process of getting a bath chair so we can attempt potty training. Some SMA kiddos can master it and some can't - just depends on their strength. We're going to give it a shot :)

We go back to Utah May 30th (with NO CASTS)
 
Thanks for being part of our lives. We feel so very blessed!!! Have a wonderful weekend and enjoy the gorgeous weather for a change! It's great out there today. Saturday we're going to the www.karsandkids.com thing - maybe we'll see you there ;)
 

Friday, April 28, 2006

Grace is doing really well. She is back down to 1 cast. Ok, let's back up...Last Monday she had her sleep study. Then she slept almost all of Tuesday - worn out. She finally woke up and was complaining about her leg again. We had dinner plans, so met our friends for dinner and then stopped at the ER on the way home. Now, we did get a few looks - and one nurse even asked our nurse...you know about calling CPS. She had the one cast already, her arm brace was on and her face was all red and blotchy from the tape from the sleep study. Plus we had forgotten diapers so was sitting in a big wet diaper. They were very nice/helpful - except the Dr seemed a bit skeptical. But he came back with the X-rays and said her tibia was broken. He seemed surprised. We do know what we're talking about! :) So, they put a temp cast/splint on it. So Wednesday morning began the process of calling Drs to try and get into the orth to get a real cast on before flying off to NY. Lots of phone tag and no luck - so off to NY we went with the cast and the splint. We were quite the site with all of Grace's equipment, her, her lipstick and hair and all of our stuff. I don't think we could have made it with any fewer  hands. LOL. Oh, it was broken in therapy when she was being stretched - her bones are just so thin and brittle...she'll probably be started on some osteoporosis medicine soon.
 
NY was a blast. It was mom, dad, me, grace, Aunt Amy and Aunt Elissa. We wore ourselves out trying to do as much as we could. Grace loved riding the subway. She'd wake up and we asked her what she wanted to do.."Ooo Ooo!" you know - choo choo - the train/subway - and then it'd be bumpy and she'd yell weee and yehaw. Too cute! Also went to the Aquarium - she loves fish - and rode the Ferris Wheel at Toys R Us - she liked that a lot. We had fun and came back exhausted. We also went to CT for a day and met some of our SMA family. That's always nice :) Had cheesecake of course!
 
Got home about 4:00AM Monday morning (flight delay - were supposed to be in at midnight) Monday we finally got to the orth and got a real cast on. Turns out her femur was broken, not the tibia. Yeah...boy oh boy!  But, the good thing was she was supposed to get the other off Wednesday, so they went ahead and took it off. She's stiff and sore from the cast, but doing alright. And a fresh cast on the other - comes off May 24th.
 
Tuesday was our 1st appt with our new speech therapist. She seems very nice and is very excited to be working with Grace. She just kept going on and on about her and all these ideas. I'm very hopeful. Don't know when we'll go back, she would like us to come twice a week - she has to do an eval and get insurance approval, so...we'll see. But should be a good thing.
 
Wednesday was Keven's birthday :) Then Thursday was Physical Therapy. I had to tell her therapist about the broken leg. She was so upset and heart broken. She's wonderful though!! 
 
Our next trip to Utah is now May 30-June 1st. Then June 4-7 is an SMA gathering - Grace and I are hoping to drive to (in Cincinnati) with Mom...but we'll see what happens in the next month or so and if it'll be feasible.
 
Keven is now actively looking for other employment, as today announcements were made about "changes" that are taking place within his organization. Those "changes" would include shutting down the call center that Keven has supported for a long time. Luckily we have faith that is strong enough to deal with everything else we've dealt with... so this isn't looked at as much of a barrier. Keven is very excited about new opportunities, and isn't really worried much about finding something new. The official end date of his employment at Verizon will be July 3rd. He of course makes the joke that July 4th will truly be Independance Day.
 
Kelly is keeping busy keeping up with the 2 of them, general household drudgery, orchestra (we have 2 concerts in May) working at DQ, and the Texas FSMA chapter. (You can join too if you want - either through me, or online at www.fsma.org - it's $30/year...they send you research updates, newsletters, and then you'd get the newsletters and mailers I send for the state chapter)  Also hoping to get signed up for an online Medical Transcription course so I can learn that and be able to work from home. It's on the 4 page to do list :)
 
Saturday May 13th is a cool - free- car show - www.karsandkids.com - all funds raised after expenses will go towards a wheelchair friendly playground at the new Children's medical center in austin - check it out!
 
June 17th is our FSMA fundraiser in jonestown - tickets are $15 (tax deductible) - bands, barbeque, SMA merchandise - and lots of friends and family.
 
August 5th is Grace's garage sale. Still need to ask permission to use the church again, but if not, we'll have it somewhere, so be putting aside any "junk" you want to get rid of :)
  

Tuesday, April 18, 2006

Grace had her sleep study last night. I actually did not go. It was a hard thing to do but I knew she'd be ok with her daddy. So off they went. The outcome was there isn't much difference between having her bipap on and having it off...which I guess is good? I assume that means her O2 and CO2 are ok and everything....they did recommend using the chin strap to keep her mouth closed, but...until they have a thumb sucker...and it's better to have it open b/c of all her secretions at night - so they can come out...yeah...I don't think we'll be doing that. But she's good. She's exhausted and snoozing away..between that and a busy weekend and sunburn...she's pooped.  She's complaining now that her other leg hurts (PT again yesterday) so we may have to get it looked at...
 
Please keep our friends in your prayers - the Petermans - their little girl joined the angels yesterday - she was 15 months old. It was a complete surprise and tragic ending to such a beautiful young girl - Baylee Grace (SMA 1) - so please keep them in your prayers - if you think of it light a candle. Whenever one of our beautiful family passes we all light candles for them to guide them to heaven

Thursday, April 6, 2006

Happy Anniversary Mom and Dad!!!! Hope your day is as great as you guys!

Just wanted to say Grace is doing well with her cast. She is milking it and points to it every so often and says "OW"...but she's doing very well with it. She got her AFOs this week.  She also got a brace for her wrist to help with it's deviation and will be getting one for the other wrist soon too.
Our trip to Utah was put off until May after her cast comes off. And her RSV shot for next week was cancelled since it's end of season and all. So her next thing is the sleep study on April 17th.  See, that wasn't too long :)
 
Mark you calendars for June 17th - big FSMA fundraiser we're putting on - bands and barbque... :)

Wednesday, March 29, 2006

Grace has a cast! And not the one for her first feature film :( The good news is that we were about due to see the orthopedic again for our regular update. So she went ahead and did her spine xrays while we were there and her spine looks pretty good. It is of course still curved but there hasn't been much progression. And her side view xray showed it growing into the proper S shape, so YEAH!!!
 
The bad news is she wanted so much to be like mommy and daddy that she broke her left leg. (I broke my left leg when I was 2, and Keven broke his left leg when he was 16) Well, she fractured it - in at least 1 place, maybe 2. The other spot was unclear, but it didn't really matter since she was already getting casted. She'll have the cast for 4 weeks. Poor girl. And that also explains the fever she's been running. She didn't get a cool colored cast but we can write on it ;) Can't get it wet of course - which totally stinks since she loves the water, but oh well...said that'll be the best thing for it afterwards - water therapy. Guess we'll start looking for a new place that takes our insurance for that.
 
On that note too - we got a call today that her speech therapy doesn't take our insurance, so...we'll have to go back to the drawing board on that one too. Man oh man. I do love and appreciate insurance, but sometimes....
 
Ok, I think that's it for now - I'm gonna go take a nap with my girl :)

Tuesday, March 28, 2006

Yup. Officially a mess :( She's been having all sorts of issues with pooping b/c of new supplements and such - so very constipated - poor girl. If that doesn't feel right, nothing does.
 
Didn't sleep well the past few nights or naps - just wakes up crying in pain or discomfort frequently. Sweating a lot. Then yesterday at therapy she was driving her chair and ran into a table and hurt her leg. First I thought she just bumped her shin and would have a bruise - but it seems to be in a lot of pain - think she pushed it back and to the side or something - hurt her hip. Their bones and joints are so brittle since they don't stand and develop them. Plus she's been running fever.
 
So, we just got back from the pediatricians office...Fever - said it''s probably something viral. Ears, nose, mouth and lungs are clear, so that is good. Thought maybe a UTI - so took a urine sample - pre lim tests came back negative, so that's good. So said it's probably just something viral and she'll run a fever for a few days. It came in at 101.2 at the Dr office - a little over 2 hours after having ibuprofen, so...who knows..Her HR is up - but that's from the fever - her O2 is still good, so that's good.
 
Meanwhile with the leg/hip - she said normally she'd send them to the hospital for an x-ray, but with Grace she'd rather her see her orthopedist - they can evaluate her and do xrays in office. Of course her orth is out of the office today so they're talking to the on-call/other orth to see if he could see her since it's not a routine check up and all....waiting on a phone call from them.
 
So, poor girl is just wiped out and in pain. And I imagine quite tired, since I am :)
 
She's scheduled for Utah next week 5-7. FSMA meeting on the 8th. And then a sleep study on April 17th. It'll be overnight at children's hospital - to check the measurements on her bipap and stuff - make sure everything is ok - the pressures and her CO2 and all...
 
Do you know how much you use your passenger side mirror? I didn't until I broke it and don't have one. Man oh man...Especially with a wheelchair lift blocking her view on that side.
 
And bipap tubing tears very easily, so be careful with it - hopefully cough assist tubing will work for a little bit...
 
And the electricity in Hutto goes out way too easily...
 
Oh, and her garage sale - we're probably looking at August again. And I was hoping to keep it low key, but it looks like it will need to be another major affair like last year. We were spoiled last year b/c it was such a success and it was towards the end of the year so we were meeting all our out of pocket expenses with insurance and all and so were able to put it in her medical account and not use a whole lot of it...but a new year has begun and it is quickly depleting, so...looks like another huge one!!
 
I think that's it for now. Hope everyone else is doing well.

Friday, March 10, 2006

Just wanted to say thanks to everyone for a wonderful Birthday for Grace. She celebrated all weekend long and enjoyed every minute. At least I think so - she didn't want to sleep and didn't do much of it.
 
She was fitted for her AFOs on Monday. We're waiting for all the paper work to go through, then he'll make them and she'll wear them during the day. To help her feet keep from drooping and turning in.
 
Tuesday was speech...she's doing ok....we showed the therapist a new thing to baffle her...if you ask Grace to say a word she says "uh" - like a grunt - it sounds like her "kiss". Where most kids her age would at least try the word...to her she is trying the word but it's only that. She tells her to say "ball" and she does - then says say "B" and says 'uh'...so she was a bit confused...so we're working on getting the sounds to be more familiar - have her say Ball and then Ba right away...to get her muscles use to it...Also printed out pictures so we can start using them for Grace to tell us things - pointing to the pictures and such...transfers easily to augmentative devices...We just want her to be able to express herself more and easier. She can tell us her basic "needs" - she can tell us food, lolipop, laydown, sit up, suck.....to the untrained eye you'd have no idea what any of them are, but they are her words :) She was playing with some dolls at speech and would call them mom and pop - and it sounded pretty much like mom and pop :)
 
She had a pulmonologist check up. I think he's just amazed every time he sees it. Doesn't really know what to say :) But he said she looks great. He is setting up a sleep study for us - he's been talking about it for almost a year but he actually started the paper work this time, so...Just to check her O2 and CO2 - make sure settings on the BiPap are good. A lot of the kids we've met have one annually just to check on things. He did give her a bday card which I thought was very thoughtful and sweet.  She also got her RSV shots. YUCK! And RSV is still high so she'll be getting them again next month. According to their scales she had lost a little weight since last month, but it was only a matter of ounces, so no biggie. And it's hard to believe with all the cake she ate. The weight I trust the most is in Dallas or Utah b/c they have better scales - they still use a baby scale for her since she can't stand, but she's too long so trying to get her all on it....in Dallas and Utah they're used to people that can't sit or stand and have big scales to lay on. So we'll see in April..
 
Oh, and prayers please for our friend Meredith - she's 6 -she's at Children's in Austin..doing much better, probably home soon. And then our friend Kyle in OK. We went to the zoo with them last year. He's intubated in the hospital. So...some good thoughts for them. And a little 7 month old girl named Jewel.

Thursday, March 2, 2006

Another update already. :) Sorry - just wanted to share 2 things.
 
1st - and unfortunately...we are currently no longer in water therapy. We went on Wednesday and found out they don't take our new insurance...so to keep going it would be $100 a week. BUT...I'm going to talk to her PT about a different place. OR better yet...look into getting one of those quick cheap pools and throw it in the backyard. We've been doing it for quite awhile now, so I could just work with her in it  - and do her stretches in the hot tub - her PT thinks this would be better for her. Her feet and legs are getting very tight and we need to do more stretching but she hates it and it's hard to do. So she said she may be better if we do it in warm water. We'll see....
 
Now, her guardian angel. It's just so neat to me....Some of you may remember us talking about Angel Eddy. We met him a wal mart not long after Grace's diagnosis. He came up to us and started talking to us and commenting on what an Angel and blessing Grace is. He had no idea. Just kept talking about her and how special she is and all. We told him how right he was and told him of her diagnosis. We spoke with him for a bit and he told us of how he had died twice and come back and he was spreading God's word and just told us other stuff. Now, yes our first response was we were quite caught off guard and felt a little weird about him and all...but the way we felt before we talked to him and the way we felt as we walked off - definitely something there. And then we noticed "In the arms of an angel" was playing on speaker. So we felt something...THEN a few months ago...don't know how long ago now...6 months? I had to take Grace to get X-rays at some location in RR...and he was there and came and talked to us. He didn't remember us but spoke to us and said pretty much the same thing. Well, today at water therapy he was there! He was doing therapy there and was getting out of the pool as she was getting ready to get in. He didn't remember us again, but talked to us and told us how special and precious she is....Then he said his mom's name was Grace and that she helped raise over 200 special needs foster children - during like the 30's and 40's. I bet she was an Amazing woman!! I definitely think he is Grace's guardian angel. When I saw him today at therapy I thought it was a sign - since we had just switched to Wednesdays...but then I found out it was our last day there - so maybe it was a sign of we're still being taken care of even though we have to leave there. We'll see him again, I know it. I'm so glad he has blessed Grace.

Tuesday, February 28, 2006

Wow! Let me tell ya...I always feel I send way too many updates but then I don't for awhile and people ask. That makes me feel so good!!! I'm glad so many people love her!
 
First and foremost Grace turns 2 on Friday! YEAH!!! Hope to see everyone at her party Saturday. If you didn't get an invitation in the mail, I apologize - it was hard keeping up who I sent what to...but of course you all are invited! I attached the invitation so if you didn't receive one you can get all the info.

Grace has started speech therapy. Her first appointment was last week - last week was mostly talking, getting to know her and seeing how Grace understands and everything. She talked to Grace and did an assessment on her understanding/comprehension etc...she stopped when she had passed the level of a 2 and half year old and was almost to the 3 year old. She realized understanding is not the problem. I tried to tell her that from the beginning, but had to see it herself ;) But she is pleased with Grace and thinks she's adorable - of course :) Grace made most of her sounds for her and she was pleased with it. The fact that she can make all the different sounds that she does shows she has the muscles to talk. And she appears (and I believe) has the respiratory support to talk. We are also starting to look at technology to help her communicate. We're going to start with some pictures/symbols that can the concepts can then be transferred to some of the devices available. The therapist is great though and we're very excited to be working with her. This week we're working on the words Pop and Up...just to get some different sounds going and some new use of words - like Up...also working on screaming to  increase breath support. :) Man, if we ever have other kids they're not going to think we are fair at all - telling grace to kick, throw and scream all the time.:) She blew a bubble though - that was VERY impressive!!! Something interesting we learned...It is shown and pretty well known (at least in the SMA community) that SMA kiddos tend to be very bright - more intelligent than average, and sensitive and understanding. Well, most have always said it's b/c they lack the muscles and make up with it in intelligence. Like when you lose one sense and others become stronger. Well,...they've done some research and they're finding that is not the case. They are studying other kids with similar weaknesses, as far as muscles and such...and aren't finding the same high intelligence consistently among them like with SMA. Just thought it was interesting....
 
Besides that she is doing wonderfully. She is doing PT twice a week now because she's doing so well. All of her therapists are very impressed by her work and improvements. A lot of it, I believe, is from the drug study she's on.
 
She has her monthly RSV shot next week. RSV has been very high this year..thank goodness she has been healthy. With her turning 2 we'll have to start fighting for the shots, but we'll fight, that's for sure. And can you believe - these shots are over $3000!!! That's insane!!! So we of course have to win the battle, and we will :)  And she has quite the travel schedule the next few months.  April is our trip to Utah. Can't wait! It should be beautiful weather. then we're going up to New York for a few days and get to meet a bunch of families up there around NY and CT! Then in July is the National FSMA conference in California. I'm looking forward to making it to the conference this year and meeting so many families and doctors and experts.
 
Oh, and we are having another garage sale for her. Crazy, I know. But 3 people asked me about it in a span of 24 hours...took it as a sign that we should have another. The last one was so successful and has been so helpful for Grace's bills. It's great! So, we're planning on another...sometime....April or later...probably May or later...who knows.
 
We've also started a State chapter of FSMA. We will be having our first fundraiser June 17th. Bands and barbeque.
 
Ok, this is getting long. Hope everyone is doing wonderfully! If there is anything we can do for any of you please just let us know! We'd love to be able to reciprocate all the love and support we have received.

Tuesday, February 14, 2006

Grace just wanted to make sure and wish everyone a Happy Valentine's Day!!! Last year on this day we drove to Dallas and picked up her manual chair. This year we're working on driving her power one. What a difference a year makes. :)

For those that hadn't heard...the MDA walk was a HUGE success. Our team alone raised over $5600...and we still had/have some donations coming in - so probably closer to $6000. The walk in all raised over $36,000 (over $11,000 more than last year)

Grace will be starting speech therapy next week. We think she's capable of saying more than uh-huh, uh-oh, poop and football (talk about a texas vocab). She'll be going to a recommended communication disorder facility to work on mouth muscles (they seem to be getting tight - doesn't open her mouth very wide), words and perhaps with some sort of technology. We don't mind using technology and some sort of communication device - we just want to make sure it is used to supplement and not as a crutch. She is also going to pick up an extra session a week of PT - to focus on driving her chair. YEAH!!! She's a busy girl. :)

She has continued getting her monthly RSV shots as there is a lot of RSV around the whole country this season. Next year we'll be fighting for these shots as they don't usually give them to children over 2. Her Dr from Utah called and she has a bit of a vitamin C deficiancy and slightly/borderline anemic, so will be starting on supplements for those. That extra iron will be great (hear my sarcasm) as SMA kids already have problems with constipation....OH WELL! :)

I think that's about it - not much has changed with her - which is wonderful! :) Thanks for continued thoughts and prayers! Happy Valentine's Day!

Wednesday, January 25, 2006

So, it's been a long couple of weeks...holidays, moving, Utah, first official TX FSMA chapter meeting, etc..Not really sure how Keven and I have kept from strangling each other, and it's been close at times, or getting one productive thing done. Must be the Grace of God....or sheer madness...or the fact that we just love each other too much... ANYWAYS....

Just thought I'd update a little about the Hospice situation. I fired them yesterday. I say it that way b/c the nurse came and I told her we weren't going to continue with the services, what did I need to do - she said I needed to fire her. So, I did :) She's really nice. And it was all about insurance for the firing reason. Turns out there is a lifetime limit on what they'll pay for hospice - $5000. Well, since we planned to be using them long term and not just "6 months" we would quickly hit that mark - with all the equipment and such. So we decided to discontinue it for now so that when/if we need it we are able to use it then. Course the downside to that being they're taking back all there equipment, which is fine b/c we still have the rented stuff, but means the hospital bed too. So, back to the drawing board on that one.

As for other equipment and battles...our insurance approved a piece of equipment, paid for it for a month, stopped paying for 3 months, then denied it, then paid another 4 months and is now saying they won't pay again...And of course it's one of the respiratory pieces, so it's important and of course it's the most expensive. So that's our battle this week. It's just frustrating b/c insurance is saying one thing and the DME says something - so going back and forth and conflicting answers...I LOVE IT!!! But they did get her chair going so we're working on driving. Hope to bring it to the walk next weekend. YEAH!

We did have our first Tx Chapter meeting and it went great! We got to meet a lot of people and there were 7 kiddos there. We seem to have a very energetic group with high expectations - for raising awareness, support and fundraising for research $$$. Looks like our first major fundraiser will be in June in Jonestown. We'll keep you posted.

Now, if anyone has a magic wand or pill for making more time, more productive, less overwhelmed, more energy, less weight...I know you'd be a millionaire. Or maybe just one that makes a person able to say no or let things out of their hands to let other people do it...less controlling...any of those...I'm willing to pay big bucks - not that I have big bucks but I figure there's no magic pill either :)

Umm...ok, I guess that's it for now. Sorry, I guess this email was more for me to let it out than for you to be informed. Thanks for "listening" :)

Friday, January 13, 2006

Another whirlwind trip to Utah. It was good though. Aunt Amy went with us :) - Thank you! We left Monday afternoon and got to the hospital about 7:00 that evening. Just hung out - met the family across the hall - they have a little girl that will be 2 this month - well she's not that 'little' - and she's a type II. They live in San Antonio and are very nice. We'll probably see them when we go back in April. Tuesday was the testing stuff - her bloodwork and the MUNE Test...They were pleased with how well she looks and seems to be doing - especially with the respiratory illness last month. ON the MUNE test she kept doing it over and over b/c she didn't believe it was as good as it was. ;) I don't know a whole lot about that test - but they see improvement, so that's good. It's looking at the electrical conductivity or something like that...Then we all went and took a nap and then went out to the mall. It was a gorgeous day - chilly compared to the 80s we've been having here but it was nice. Wednesday was the physical therapy part. She did pretty well. She cried through the whole thing. She usually fusses through it but this time there were actual tears. She has been so incredibly clingy since being in the hospital last month. Not that anyone can blame her - just makes this stuff all that much harder. She did pull the cloth completely off her face though - YEAH!!! - and turn her head both ways - YEAH!!! - showed a little bit of improvement. So all in all it was a good trip and they are pleased!! Another family in Tx is doing the trial - they have a long story with them - but the short of it is they have a 5 month old and got her started on the drug very early - like 8 weeks - here's what he had to say - "[she] is doing exceptionally well on the PBA. She can hold her head in line when pulled from her back to a sitting position AND when being let back down onto her back, she has very good head control, has turned from her back to her side on several occasions since X-mas, can raise her head when flat on her tummy or on her tummy at a slight incline, can get almost full arm extension while lying on her back and reaching upward for a toy, will bear some weight on her legs, etc. Her C-map improved from the 40's into the 50's since her surgery in late Oct & her max response on the MUNE was like 4.69, an improvement from about 3.30 in Oct. Doctor Swoboda was guarded in her optimism but very encouraged. She said she has NEVER had a type 1 generate numbers in those ranges at 5 months of age. Her swallow still seems to be strong and her respiratory fucntion is still strong. She has some very minor tongue fasiculations and her legs have some involvment but when all is said and done, we are very pleased at how well she is doing" So YEAH for them!!! She is doing some things that Grace NEVER did - so the drug is helping! :)

Alrighty...then we flew home Wednesday - were hoping to go out again but that day was nasty and yucky and we all slept instead - it started snowing as our plane was taxiing to the runway. Finally made it back to Hutto about 12:30 Thursday morning. Up Thursday and off for an MDA appearance at a Lock up...couldn't stay long - off to the pulmonologist. That appointment went pretty well. I did chicken out and didn't say anything about the hospice. Although he asked how it went and I said fine after they realized Grace has more than 6 months to live!!!! He said he knows they're a good resource and helpful at getting things and information...whatever I think he was back peddling. Anyways, Grace did well and didn't fuss much at that. He was very impressed with her - as she seems to be breathing easier than before the illness..hmm..drug help???...Said she's the  oldest type I w/o a trach or something that he's ever seen - and pretty much true for all the partners in the group - I've got some people I could introduce them too. That's why you don't tell us what it will be like! Don't they know that Grace got her stubborness from me and hard headedness and anything to prove people wrong!! HELLO!!! Messing with the wrong girl! :) But he was very pleased and she's doing great. Got her RSV shots too. Of course that brought tears, but she's so good.

So that's about it...we start back to PT next week as we haven't been since the first week of December - poor girl -her legs are so tight!!!. Wheelchair people are coming out next week to work on the pwr chair again too. She's doing great though!!!

Friday, January 6, 2006

Alrighty...the visit with the hospice nurse went much better than with the initial visit. First of all I was never trying to put down Hospice or what they do or anything. They are wonderful and a help/relief to many. I think it is great. I was just not happy with how we were thrown into it and the Dr assuming Grace had 6 months or less to go. And yes, that is generally how this group is done here also. It's in the end when you've given up the fight and just want to make the person as comfortable as possible. We're not at that point and the fact that the Dr was pushing us that direction and then didn't communicate with hospice that he was referring us - not us coming to them...it was just very aggrevating. Hospice is a wonderful service and I mean no ill-will towards it or all the hard workers they have. And we're part of it now, so... :)

Now, the visit with the nurse that will help with Grace went much better. She came in treading much more lightly and listened and understood. She sees, knows and agrees that we are not at the end with Grace. She understands that yes we want resucitation and we are still fighting here. I liked her approach and manners much better and was more comfortable with her. They do seem like they will be helpful to have and if nothing else more players on our team with Grace. I figure the more people watching her and helping her the better. It is not home nursing - she won't be coming several times a week to stay while I go do other things. She will come once a week and check on Grace and us and make sure we're doing ok and don't need anything. It will also be helpful b/c they will provide some of Grace's equipment which will allow us to return some to the DME and help lower our monthly rental bill on all of that. We also mentioned we wanted a hospital bed and it's supposed to be delivered hopefully today so that is a lot easier and faster than get a script for it and going thru insurance and everything. And an oxygen unit. So, they will be helpful in the care and comfort of Grace. And that is wonderful!! I just didn't like these people assuming we've given up and were at the end. They are so close to a treatment for SMA - not a cure, but a treatment, and we'll take that. Don't they know I'm too stubborn and bull headed to not fight? Come on now. :) So it is more positive now and should be a good thing.

Now, another thing I want to say - is thank you. I know I say it a lot, but I really mean it. We are so lucky/blessed to have so many people that care about us and especially about Grace. There has been some major ranting going on in our support group about people that have lost friends b/c they just don't know how to deal with a child with a terminal illness - so they just disappear - instead of just saying "I don't know what to say or do but I'm here for you and love you&