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 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're so far you never were here. I know that isn't true. I know every day you were 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 was hard to hear it playing but I'm glad he enjoyed it. It's going to be hard when your brother starts watching 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,'s 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'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 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 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 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, 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 change make it not yours...what am I supposed to do with your stuff? I can't get rid of'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! 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 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.


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 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 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 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, 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 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 or

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 - - 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  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.
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, 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 ( 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....   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. 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 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 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 b q....bands....silent auction....raffle....come and go.


Please keep Julie and her daughter in your prayers - 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 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 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 - 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 - - 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 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' she was a bit we're working on getting the sounds to be more familiar - have her say Ball and then Ba right 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, 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 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 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 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" - which so many people have done for us - they just leave. I can honestly say I can't think of anyone that has disappeared since Grace's diagnosis and I think that is truly a blessing. If anything it's the opposite with so many more people coming into our lives and touching our hearts. We understand that it is hard for all of you too - you don't know what to say or do or how to act...although we've been at it a year so we're pretty much over all that now...but we don't know either. And we still want to be here for everyone else when they are going through difficult times. It's give and take and we want to help all of you just as much as you have helped us. We're just living a day at a time and as normally as possible. And we may not always ask or tell you what we need but that's b/c most of the time we don't know ourselves. Most days are fine - we have a "normal" life :) We have therapies and doctors appointments, wheelchairs and feeding tubes and pretty much a whole hospital room (even more so after we get our hospital bed and oxygen unit) but she's as smart as a whip and just as testy as any other 2 year old. Most days are ok. It's hard seeing other kids, especially her age, doing things and running, but that's just the way it is and since we have so many friends with that age we just love their kids like they're our own too. We don't want to miss out on their lives and growing up and joys and sorrows. And we just deal with it - life keeps going everywhere in all sorts of ways. Some days are harder and we have our periodic breakdowns. But most people have periodic breakdowns just from the normal stresses of life anyways. No big deal. Although I am long over due for my last breakdown so if I just start bawling around you sorry ;)or more likely throwing things.. It's a learning thing for all of us. But we are so grateful and blessed to have so many people learning with us and fighting for us. THANK YOU EACH AND EVERY ONE!!!!!

We are off to Utah next week - Grace may get to see her first snow :) - we'll let you know how that goes once we're back.

Wednesday, January 4, 2006

HAPPY NEW YEAR!!!!!!!!!!!! Hope everyone had a wonderful and safe holiday!!!! Can't believe it's 2006 - here's to a great year ahead!!!

Yes, Hospice here, or when the lady came, is about making them comfortable in their last days. The booklet we received says "less than 6 months to live" Looking for "comfort and not a cure" So, we got off to a bumpy start. She just started talking to us like we're here to watch Grace die and we know all about Hospice. Wrong on both accounts. She told us some story about an 18 month old that the parents decided it was time to let go and what they all did in the final hours...I just kept saying things like "she's not going anywhere any time soon" I know we don't know when it'll be but nobody knows that with anyone!! She asked if we were set on keeping her at home from now on - I said unless she gets sick and needs to go to the hospital...she was amazed she'd only been in once for illness. EXACTLY!!!! HELLO!!!!! Course the best one I thought was when she asked why we decided to go to hospice now...I told her we didn't. We weren't given a choice - her Dr said we should talk to them and called them for us. We didn't choose any of it. I do believe she started getting the point though that we're not here to watch Grace die and we are still fighting. We showed her all of Grace's machines and what they do and all her medicines. We talked to her about a hospital bed so she is going to work on that. This lady was...I don't know..she was just doing the initial visit and all. Supposedly the nurse that Grace will have is coming out today. I'll be sure she knows right away that we're still fighting hard!!! So, it started off really bumpy and I just wanted to kick them out of our new beautiful house ;) but I think they started to get the picture, and it may be good just b/c they'll handle a lot of the insurance stuff and get us stuff...Like we'll quit using our DME and they'll take care of stuff. I don't know. We'll see. What I do know that 2 months from yesterday Grace will be 2 years old!!!! When we were first given her diganosis it was 80% die before age 2. It's down to 50% now and in 2 months Grace will prove that wrong too. :)

Thank you everyone and here's to a cure in 2006!!!!!!!!!!!!!

Wednesday, December 28, 2005

Grace has been chosen as a 2006 Capital Area MDA Goodwill Ambassador. :) YEAH GRACE!!!!!! There are actually 3 this next year - they had at least 3 great candidates and decided there's enough goodwill to ambass (yeah, I know...) that they could use 3. They each have a different MD and are all different ages. So, it's WONDERFUL!!!!!

Grace had an appt in Dallas last week for Scoliosis clinic. He is happy with how she's doing - she has a slight curve, but it's very flexible so that is very good.

She had a follow up appt with her pulmonologist from being in the hospital. He was amazed at how well she is doing. That she was out of the hospital in only a week - he thought there was no way - and the fact that she was already pretty much back at her baseline...he was just blown away. Then he told us we need to talk to Hospice. Yeah, I don't know...What I do know is that I hope for his sake Hospice means something different for a 2 year old than a 92 year old... She is still very worn out - with the hospital and holidays and all - and is sleeping a lot more than used to, but who can blame her. I would be too if I could :)

She had a wonderful Christmas, as we all did, and was totally spoiled by Santa, Mommy and Daddy, and all her wonderful Grandparents!! She has everything a 2 year old could want!! And then some...She got the concept that a present meant tearing off paper and there was a toy underneath. We helped her tear, but she got the idea! :) we are closing on our house!!! YEAH!!!! So, starting this afternoon, Dec 28th, we will be out there painting away...and unpacking and who knows what else. We have several good days of painting ahead of us though. So, if anyone gets bored during this holiday break, or just wants a reason to skip're more than welcome to come paint :) Or just come see the new pad and Grace's ramp into the front door. That's our favorite part of it all!!!!

Hope everyone had a wonderful holiday and has a Blessed New Year!!!!!!!!!!!

Tuesday, December 13, 2005

YEAH! We're home! Grace is doing wonderfully and we got to come home :) She is on antibiotic for the next week or so, but is good. They had put her on amoxycilyn but the bacteria that she grew is resistant to that. So she's on something else doing the trick. We also now have the nebulizer we'll start twice a day. And we'll take it a little easy the next few weeks, especially with the holidays being so crazy she can heal completely. But the pulmonologist was very impressed with how well she's doing and how quickly she turned around. YEAH!!! (He's treated over 100 SMA patients) And, it wasn't from aspirating the food she shouldn't have been eating. :) YEAH! That makes us feel better, but we are definitely cutting back, almost out, oral eating. And he said to be real careful with her thru the holidays - since so many family and friends will be around - that's who she'd most likely get sick when you see us, be sure to wash up first. :)  Thanks for keeping us in your prayers!!!

Sunday, December 11, 2005

Grace is doing much better. She is out of PICU and up in a regular room. They have her completely off oxygen - on room air - and she's keeping her O2 pretty well. YEAH!!! She's been having some really good coughing sessions - lots of junk rattling around in there. Today  they are going to start trying some time off the bipap. She has had it on nonstop since Tuesday - take it off for breathing treatments and that's it. Her poor little face is getting so red and worn from the mask. :( Her HR was still a bit high yesterday, but overnight and this morning seems to be doing better. She's also kept a low grade fever, but they're not too concerned with that since it is such a low grade one. She sat up a bit yesterday and made some animal noises and watched a little TV. We should be home, hopefully, the first part of this week. Then we'll basically be homebound the rest of the month - as much as possible. He said resp illnesses like this would put a "normal healthy" person out for maybe 2 weeks - you know completely recovery - so with her it'll be more like 3 or 4 weeks. So, we'll just chill out here, which is fine since we have so much packing to do anyways :) Thanks for everything everyone!!!

Thursday, December 8, 2005

Grace is still in PICU but doing ok. Keven and I came home Tuesday evening to update and get stuff and when we went back to the hospital they had moved her from a room down to PICU. Apparently she gave them a scare with her O2 dropping and turning a little blue around the mouth. But she bounced back up. So, we've been hanging out down there. She has been pretty stable though and actually happy at times. :) She has made some of her animal noises for us and watched a little bit of Elmo. Tuesday she had the 103 fever and they gave her tylenol - it went away and didn't start going back up until Wednesday evening, so that was good. We caught it at about 99.5 and gave her some more tylenol. Still giving her antibiotics...pneumonia...lungs look a little better in places and worse in other places, but not terrible. Some viral stuff in the middle/upper lobes and some atelectasis especially in the left lung. But that could partly be b/c she had so much junk in her right lung so she's been laying on the left side...Lower lobes look a little better. RSV tests came back negative, so that was good. They were deep suctioning her in the middle of the night to get a good "loogey"- yes it's a medical term :) - so they could test it for stuff. So, basically we're just hanging out. Her HR is still above her baseline and her O2 is staying up with the help of added O2. They have lowered that amount though a bit, so that's good. She is doing breathing treatments every 4 hours - nebs/CP/cough feedings every 4 hours and they're going to go ahead and change her button while we're there too :) We're waiting to make sure she's good and stable and then move back up to a regular room on the floor. Thank you for the continued thoughts, prayers and support - it is definitely working!! Poor girl isn't used to wearing her BiPap - the most she usually wears it is over night - 8 hours maybe? She's had it on pretty much non-stop since Tuesday around 7 AM. Her cute little face is getting all red and rubbed. :( She's a trooper though! THANK YOU TO EVERYONE!!!!!

Tuesday, December 6, 2005

Well, unfortunately now Grace is in the hospital. She was coughing a lot, hard time breathing, elevated heart rate, low oxygen....played phone tag with doctors all day. Pediatrican finally called and told me to call 911 and gether to the ER. So, she and I took our first ambulance ride. Not good for someone with motion sickness, but I digress....we got to ER...she's been on BiPap pretty much all day...they hooked up some oxygen to it...was running 103 fever, x-ray of chest showed problems in the right lobe...white blood count is elevated....For now they are treating as pneumonia with antibiotics and fluids...are running more tests to make sure it's not something else. We are at Children's Hospital in Austin for however long the need be...So, keep those positive thoughts coming this way please!

Thursday, December 1, 2005

Well, it's been quite a busy week...

Sunday Grace awoke with a fever of 102 and a high heart rate. She didn't act too unhappy or uncomfortable, a little lethargic, but that's it. Monday AM it was 99.3 so we cancelled PT and then the fever went down from there.  There were no other symptoms so we have no idea. However now she and I both are battling something - allergies or a cold...she has a cough and chest congestion. That's one of the worst things for her, but her lungs still sound clear - most of the junk is in the throat, top of the chest. So while we usually cough (use her cough machine) 2x's a day - I think we used it no less than 12 times today. Just trying to keep that stuff from settling in or her aspirating it.

Tuesday we had a check up appointment in Dallas with Dr. I. We saw her, a resp. therapist, PT, OT and...someone else I think. They were all very pleased and impressed with how well Grace is doing. How much movement she has in her arms and head, how well she can sit in her chair, how many animal sounds she can make, and how well shaped her chest is - one of the effects of SMA is a concave chest cavity. And they weren't concerned about the fever she had Sunday and Monday, especially with it gone by then and no other symptoms. We will probably be starting private OT soon so she'll have PT,WT, and OT once a week each. And we're probably going to do a speech evaluation and see if we need to start speech therapy, work on assistive communication devices, or chill out. :)

Thursday she got her power wheelchair. YEAH!!! Now let me just say this is the Rolls Royce of power chairs. I was at work when it was brought over and I got home and man, I was just blown away. He's coming back tomorrow to show me how to use it. It's purple like her manual chair, although the picture looks blue....Has her name on it :) , on the back  is hand controls for Keven and I. That way if she hasn't learned yet or is asleep or tired we can drive it from back there. It doesn't have her joystick yet, BUT it's so cool b/c it has a little tray in the front and you just touch the spots on the tray and it drives. WOAH!!! I must be easily amused, but it's crazy! There are still some glitches with it and they'll be working on it over the next week to get them fixed and get her a joystick to use.

Hope everyone has a wonderful December. We go back to Utah in January....YEAH!

Wednesday, November 2, 2005

Grace is doing pretty well. She's had a lot of extra secretions and drainage lately, like so many of us do this time of year. So we've been having to do extra cough treatments and suctioning, but she's good. Her recent chest x-ray came out clean and her heart rate has been better - not as wacky as it was... We have also purchased, thanks to that wonderful garage sale and generous people, a used portable pulse-ox and suction machine. We have those at home from the DME company but they are huge and a pain to move and aren't really portable. But her Heart rate has been a little wacky lately and the extra secretions - we needed something for in the van and for our many travels. So we got those this week and should be a huge comfort/help to us.

She was also supposed to get her powerchair last week - but turns out the most important part - the joystick - wasn't ordered with it. SO it'll be a few more weeks on that. The good part is we've met every possible deduction for the year so there shouldn't be any kind of copay on it. YEAH!! :)

It's also time to start getting our team together for the MDA Stride and Ride walk again. A lot of you participated last year - at Barton Creek Mall at the beginning of March. This year it's going to be Feb 4 at Highland Mall. Last year we had one of, if not the, biggest teams and were one of the top 2 money raisers. We have challenged the other team this year, all in good fun and to raise more money, that each of our teams raise at least $5,000. We can do it!!! Last year we raised, I believe, $3,400. They have also added a new tool this year - with websites for each team that will enable people to make their donations online. Once we get our website set up, I will let you know. Then you can email everyone you know with that info :) It'll also list all the ways the money helps MDA which helps so many people and other information on MDA. We do plan on making Grace t-shirts again this year for all our walkers, and if you raise $65 you get an MDA shirt too. KXAN has been great with the MDA telethon and now they're partnering up for the walk too! so we'll have lots more coverage, hopefully, and the reporter that is helping us is ready to help and open to ideas! So, let me know if you want to walk and I'll get you a packet of information and stuff. Or you can become a team captain too and have your own walkers. Yes, you can raise money and not walk many options :) We're excited!

Another exciting note - well to me - I have been working with a few other people in Texas and we have just gotten word that we are official - we have started a Texas chapter of FSMA ( YEAH!!! Hoping to get some fundraisers going and spread awareness. Pretty cool!

I think that's about all the excitement around here. We go to Dallas at the end of November and then to Utah in January. Thank you everyone for keeping us in your thoughts!!! It really works/helps!

Tuesday, October 18, 2005

The nominations are in and Grace is one of the kiddos in running. For what??? For the Local Goodwill Ambassador for the Capital Area Chapter - for MDA. AND, she was nominated for the state ambassador position too! How cool is that?!!!! We have to fill out a form and send it in with some pictures by Nov 1 and then hold our breath... :) But that's so cool! "It's just an honor to be nominated" ;) Watch out Jerry Lewis! :)

Grace is doing ok. She's been extra tired and her Heart Rate has been elevated, but she just got a flu shot so it may be a reaction to that. And we're going to back off on the amt of the trial drug she's getting. We'll see. But just wanted to share our excitement. :)

Wednesday, October 12, 2005

Well, we just got back from Utah. The only good thing about getting home at midnight - Grace went right to sleep :) It was a good, and pretty uneventful trip. We flew in on Monday, spent the evening hanging out in the hospital. Tuesday morning we did the blood work and MUNE again...everything went fine. They are still very pleased with how Grace is doing. We went out that afternoon and walked around part of the city. It was pretty, but we should have walked more in the City Center/Temple Square area, but...oh well, I digress...Wednesday morning was the PT exam. Keven took her to that by himself, as Grace did not sleep well the previous evening, which meant I didn't sleep well and awoke with a migraine. But anyway...She did ok there. Keven's turn to give blood was that afternoon...they're banking our blood until they get further funding and can continue a natural history study. They started one, but have run low on funds...but they have discovered people that don't follow the "rules" :)

We start the actual drug tomorrow, Thursday. She will get it 4x's a day...all her bloodwork came back pretty normal. There were 2 things that were off - one was a little low, which Dr. Swoboda sees a lot in SMA patients, and gave us a supplement to help level it out, she'll get that 2x's a day, along with her zantac 2x's a day and miralax once a day.... Not a big concern, just something to watch. And one of her liver functions was off, but again, Dr. S said she sees that all the time in SMA, doesn't really know why, but at the level grace's was she's not concerned - they'll just keep an eye on it. We don't go back until January. Then Grace will get her first experience with snow! :)

Something we did learn is that you can have a half of an SMN gene...They were questioning Grace's SMN copy results b/c they got 3 and Dallas got 2...they asked the person that did the test and he said yeah, there was like a smudge, so she may have 2 and a bizarre! Who knew?! But Dr. S said that yes, it theoretically could happen. So they're going to look at her results again. How bizarre though to have half a gene...

We met another family there with an 11 month old, from New York. They were very nice and Jenna, the daughter, is a strong type I like grace. She was so cute! She has 2 older sister's at home (unaffected) and they just got her diagnosis like 3 months ago. They were very nice and we talked a bit with them.

Off to the pulmonologist Thursday morning and it should just be a routine check up along with perhaps her RSV and flu shots. But that should be about it. So, all is well on our front! :) Hope everyone else is doing well and staying healthy! I know there has been something going around and lots of illness...we'll keep everyone in our thoughts and prayers!!

Here are some other SMA happenings...

Last week they filmed an episode of Extreme Makeover Home Edition - for a little boy with SMA. Although it would have been nice for it to have been our house :) we're glad that SMA will get some national mentioning and help raise awareness. It is scheduled to air on Dec 11th, but will let you know if we hear any different

Here's a link about a documentary - some of you have already recieved an email about it, but for those that haven't....check it out. Hopefully it will be playing at Dobie and/or Alamo Drafthouse sometime in November. We'll let you know!

We have had several losses in our SMA Support group. Actually they're friends of friends, but it still hurts just as badly - knowing that this awful thing has taken another life. Please keep these families and friends in your thoughts and prayers.

Rhine Andrew Oliver was born on 25 March 2003 and was set free from SMA Type 1 on 2 October 2005. (South Africa)

Another angel passed away at 2:30 am (Oct 7) Christian May age 8 3/4 months. He is the son of Jim and Kristie May from Quincy,IL

And a lady in Round Rock whom I had emailed a few times, her son was to start Kindergarten this year..last I heard from her was the first of August and she was raving about how well he was doing. He passed the week before school started.

Here's an article written by a highschool student from McAllen Texas - he has SMA. I liked the article. thought I'd share


Tuesday, October 4, 2005    

We had such a great weekend! We went up to Dallas and got to meet lots of people. Saturday morning we got to meet and hang out with Jana and Kyle. Kyle is 11 months old. He and his older brother are just too cute. Then that evening we went to an SMA/MDA fundraiser. We got to re-meet some families and meet lots of new people. Grace wore her beautiful white angel dress and was the belle of the ball. We had a wonderful time! 

We're off to Utah next Monday. Keven gets to go this time. He's excited, as are Grace and I. 

Big UT/OU game this week! Hook Em Horns!!!

Friday, September 16, 2005

Ok, I received 2 exciting bits of information today that I had to share! They are so good!!! I mean, even the huge Mt St Helen zit on the side of my nose that is throwing off my entire balance and visual perception is "an I DON'T CARE" after this news!!! :)

I got the mail today and in it was our approval letter from the insurance that coverage is approved for Grace's powerchair!!! Yeah! We have the one we borrowed and are so grateful to have it, but it'll be wonderful to have Grace's very own made just for her!!!! YEAH!!! It'll still be a couple months before we get it, but now the ball can start rolling. :)

Then read this little blurb from FSMA:

Researchers have identified the SMN1 gene as the primary manufacturer of the SMN Protein. It is the absence/defect of this SMN1 gene that causes Spinal Muscular Atrophy. However, there is another form of this gene called SMN2. The SMN2 gene is similar to SMN1, but does not produce as much protein, or the right kind of protein, as the SMN1 gene. One determination of prognosis is the number of copies of the SMN2 gene. The greater the number of SMN2 copies, the more SMN protein is produced and the greater likelihood that more motor neurons remain healthy and productive. Individuals with only 1 or 2 copies of the SMN2 gene will typically have the most severe expressions of SMA. Three or more copies of the SMN2 gene will typically mean a less severe expression

When we were in Dallas they did blood work and supposedly Grace had 2 SMN2 genes. they emailed from Utah today - from Grace's blood work - they said she has  3  SMN2  copies. YEAH!!!!!! That doesn't guarantee anything, but it does give a lot of hope!! :)

Hope everyone has a wonderful weekend!!!! I know we will!!!!!!!!!!!!!!

Monday, September 12, 2005

First - the MDA telethon. We had a great time! Grace was quite a hit with everyone there. Thanks to everyone that called in and made a donation!! They're getting close to a cure. The neuro in Dallas said they're hopeful of a treatment in the next 2-3 years, so that's very promising! And those of you that walked the Stride and Ride with us...this year it's the begining of February - Feb 4th I believe...Last year our team raised $3400 and was one of the top 3. This year our goal is $5000! We can do it! :)

Utah visit went very well. Mom, Grace and I flew in on Wednesday. We stayed at the hospital and were just nice and lazy and didn't do a darn thing. :) Next time maybe we'll venture out - there's a lot to see there. They were all wonderful!  We really like them! We met another family there from Cuba, and one from Maryland.

ANYWAY...they were very impressed with Grace. The fact that she's never been sick, knock on wood, or had a hospital stay except for her GTube surgery. They did a DEXA scan - measure bone density and muscle mass...SMA kiddos tend to have less dense bones, and get broken bones very easily... hers are less dense, but not horrible and look good for her age. Her muscle to fat ratio was good. It's better to keep SMA kiddos a little on the lean side b/c extra weight is just fat - not muscle - which makes it harder to move and breathe and wears them out faster. Grace has lost weight in the past view months so she looks very skinny to us, but they said she looks great.

We are doing a 3 day food journal that a nutritionist there is going to analyze and make sure she's getting enough calories and all that she needs.  I'm very thankful for that! So, then we did the MUNE test (measures electricity in/btwn the nerves..) - which they had done in Dallas too. They gave grace a little bit of a made a world of difference during the MUNE and blood draw. And the neuro that's doing the study - she did the MUNE, the blood draw and talked to us, she's very hands on. Plus it took like a quarter of the amount of time it did in Dallas, thanks to the sedative. And she told us what she saw! She said she's between 3-5 range, on the MUNE, which means nothing to me...don't know what it means. But to put it in terms that are important - she said that type I's usually are in that about 4 months! By 18 months they would be a lot lower!! So she was impressed/pleased that Grace was still that high. Blood draw was no problem since she had a little medicine and they did it in her leg...she watched videos and danced through the whole thing :) Then she had the PT exam, same one they do in Dallas... she fussed through the whole thing - and who can blame her. :) But she did very well and the PT was surprised to see her hold her head up and move it around so much. So, all in all it went very well. 

Friday, September 9, 2005

Well...we heard back and we're doing the Utah study!!! Actually Grace and I will be flying to Utah next week - Sept 7! What a busy week next week! But it's such a great opportunity we couldn't pass it up! I don't know all about the study yet, but we'll let you guys know as we know. Here's an article about the drug - the sodium phenylbuterate....We'll see!,1249,600131828,00.html

Wednesday, August 31, 2005

One year ago today our worlds were shattered. Our hearts were broken. Our breath was sucked out of us. Our dreams were crushed. Our lives ended. We learned pain like we've never known, and hope so many people never will. One year ago today our daughter was given her death sentence within 18 months....

One year ago today I learned you can't plan life. I learned to count my blessings. I learned to fight with all I have. I learned how lucky we really are.

One year ago I learned that nobody knows anything for sure.

One year ago today our lives changed forever...We were given Grace's SMA diagnosis. We were told she would probably not be here today and that 80% of children die before they are 2. We lived in a fog for quite awhile after
that. Denying it. Hating it. Crying. What else would you do? And the things that I said I learned 1 year ago...more like I learned them over the following year. I didn't learn anything that day except anger and depression like I had never known!

But look at us today!! Nobody knows anything for sure - not even doctors. Grace is doing amazingly!!! We are so blessed and lucky to have her in our lives. So many people don't get to have near as much time with their children, sometimes none, whether it be SMA or something else. She is here for a reason and although she has already taught me so much and touched so many...I believe she is far from done! We have gained more than we ever thought imaginable! How to embrace life. How to appreciate what we have. How to live while you can live!!!!

We have also gained a whole new family - our SMA family! At times they are closer to us than our own family - only they can understand, relate, support and reach ways that others can't. We are so thankful for them and
owe them for us being here with Grace today! (Not that our own friends and families haven't done everything in their powers - and have been tremendous - and we definitely wouldn't be where we are, and as strong as we are, without them - they're amazing!! We are thankful for them too!!!) is a day that we will ALWAYS remember. Good and bad - it will always be...

Now for an update...this past weekend we went to Dallas. Saturday night we went to Odds on A Cure fundraiser for FSMA. We got to meet several families from the Dallas/Ft Worth area. It was great! Just to meet
more people and see all the people there reaching out to help! It was a lot of fun too!!!

Monday was Grace's final appt with her drug study. She has been off the rilutek for 3 months so they were doing final blood tests and pt tests. Now, she can go back on rilutek with a Rx, if we choose to do so. As of right
now, that is our plan...however, they have seen more luck with another drug and I've heard there is a trial of it happening in Utah. So, I'm looking into that to see if she can get in there...

Her spirit/attitude have changed since her GTube surgery. She screams all through all her therapies - even water, which she loves. She doesn't cry - just screams. She doesn't want anyone messing with her. I think this is partly b/c of the surgery and being scared. Partly b/c her legs have gotten tighter so it hurts more to stretch and do things. Partly b/c she's almost 18 months old and partly b/c her molars are coming in. She has 1 all the way in. One 3/4 of the way and one just barely poking thru. So...she's pretty fussy a lot of the time.

She is so smart though and has learned many animal sounds - including dog, cat, sheep, cow, snake and lizard. Of course she knows a car too. Has started saying "more" in sign language. Blows kisses. Says "roll over" when we roll her over...well..that's what she says in her language :) She can show you where her eyes, nose, mouth, chin, neck, ears and hair are. She is just SO SMART and quite the ham, when she wants to be. Turns out my name from her, what she calls me, is Ada. Not sure why or how, but that's who I am. :)

Thank you to everyone for everything!!!!!!!! We could never thank you enough. We are so blessed and lucky and unworthy. Thank you everyone!!!!!!!!

Tuesday, August 23, 2005

Well, we had a great trip to Virginia. It was definitely too short, but lots of fun. We got to meet about 15 families - Grace was the youngest one there, Charlie turned 2 on Monday - he was closest in age - Oldest was MJ who is 17. There were both type Is and type IIs there..and quite a spectrum even within the types. It was nice to put faces to names of people we know...and nice to be around people that understand and know and...just get it.

We got to watch someone change a Mic-Key button, so if Grace's should happen to fall out before her next appt we know what to do. After that appt we will change it regularly on our own. It looks easy, but pretty gross. :)

It also helped remind us of how lucky we are and blessed with Grace. We always thought she was pretty strong and this helped us remember that she is. August has been crazy busy for us so we've both been stressed and exhausted and so that leads us to a down cycle...we get them every so often - who doesn't?. So, it was good for us to be reminded about how truly lucky and blessed we are.

We had a butterfly release in honor of the SMA Angels in heaven, and a candle lighting which is an annual event. We had birthday cake for Charlie and Angel Jacob. There was karaoke and face painting, pizza and toys...Oh and this amazing photographer came and took pictures of each of the kids -she started a non-profit org  - she is going to send each of us a CD with all the pictures she took - for us to do as we please, PLUS we can pick one picture and they will put it on a canvas and frame it for us. All free of charge! She's incredible!!! Her website is

But it was wonderful. All the kids are just amazing!!!! There truly is something about each and everyone one of them. SMA should stand for something else...I don't know...Special Miracle Angels....something b/c that's what they are.

Grace recieved her quilt from Cole's Quilts - it's a group in memory of Cole - they sew quilts - different people from all over sew a square - the theme can be picked by parents - and then they are sewn all together.   The waiting period is about 2 years, but they bumped ours up since we were going to be at the gathering.  It's gorgeous!! 

Oh, she also got a power wheelchair. We are borrowing it from SMA Support, until she can get her own. She did a few backwards circles at the airport. I need to take her to an empty parking lot to practice - our house is too small. Once we get some practice going we'll share some video clips...if we can get the stupid video camera to work - we took it this weekend and it did not work at all.


Monday, August 8, 2005

The garage sale was a HUGE success!!! We raised much more than we ever could have imagined. Thanks to everyone that helped, donated, thought of us, or just kept us in mind. :) It was a lot of work for a lot of people but definitely worth it! We are so thankful to all the help! The winner of the Quilt is Karen Mills and the winner of the Mary Kay basket is Joan Carpenter. Congratulations ladies!!

We have several things the next couple of weeks. This Wednesday News 36 will be out to interview us for the MDA telethon in September. How exciting! 

Next weekend, 18-21, we are going to Virginia Beach to an SMA Family Gathering. We get to meet all these people we've been talking to in our on-line support group. It's going to be wonderful! We can't wait!! of the families just got their new power chair, so they don't need the loaner chair they were borrowing, so we get to bring the loaner home with us!!! YEAH!!! So Grace can start learning to drive very soon!!!! She'll be a pro by the time she gets her very own.

The weekend after that we head up to Dallas for an SMA fundraiser and Grace's appointment at Scottish Rite.

The weekend after that is the MDA telethon! So, we plan to be busy the next few weeks!

Grace is doing well with her button and we're getting better at the pump and feedings. I am working with a mom in our chat group on getting a diet going for Grace. I'm almost there. :)

Thank you to everyone!!!!!!

Thursday, August 4, 2005

For those that missed it, or aren't in the area - here's the link to watch Grace's news clip.       That'll take you to the page and then click on the SMA story. We also were asked this week to be a featured family on the MDA telethon in September! We will just be here with our local station doing it, but out Jerry Lewis - here comes Grace! 

Grace had her follow up with the surgeon today. It was short and sweet. Said she looked good and she's ready to swim again!!! YEAH!!!

Friday, July 29, 2005

Yeah! We're home!!. Grace is snoozin, which is probably the best thing for her. She is doing great. We are supposed to get our equipment later today, but have supplies that will last awhile, so we're good. Now to start digging out of the house - we're buried in garage sale stuff!! And I say that as a praise, not a complaint - it's going to be WONDERFUL and a HUGE SALE!!!!

There's just a plug in the button and when it's time to feed we unplug it and put in the tube. Pretty cool. There is still a piece ofgauze under it, as it's still a little raw and leaky, but that won't always be there. And then the other little incisions where they went in - including her belly button!

Thanks to everyone for all the calls, cards, emails, support, etc....I think we could say thank you til the day we die and it would never be enough. THANK YOU!!!!

Wednesday, July 27, 2005

Grace is doing wonderfully. They started her feeds today through the tube. She is tolerating it well and her stomach is processing it properly and doing what it's supposed to. They are slowly increasing the amount she is receiving and we are striving to 40ml/hr. She's at 20 right now, so we have a ways to go - they are increasing by 5ml every 4 hours. She was back to her old self today - laughing, talking, reading, playing cards...her usual self. It was good to see her that way again. We most likely will not be home before Friday. They still have a ways to go on the feeds and we don't have our equipment yet and we haven't learned how to clean and take care of her I don't suspect it'll be Thursday.

It did break my heart though when she heard the words drink and ice cream and got very excited b/c she wanted them...and couldn't have them. And then a KFC commercial came on TV and she was just staring and wanting it so badly!! As soon as we get home she'll be getting some ice cream. :) She will be allowed to have a few bites of food here and there - just for pleasure, but her main source will be through the tube. And should her swallow get weaker then she'll have to stop the pleasure eating too.

Monday, July 25, 2005

Grace's surgery went well this AM. We arrived at the hospital at 6:30 and checked in, did our pre-op stuff, spoke briefly to the Doctor and anesthesiologist. They took her away for surgery at 8. It was just a little over 2 hours long.

They went ahead and put in the button, so that is nice. Since this is for a lot of different people - what that means - is the feeding tube they put in - sometimes they leave a peg out and later go back and add the button (Mic-Key). They were able to go ahead and put the button on so we won't have to do that later. 

Her esophagus was thin and weak and did tear some when they put the tube in and all. But he put in a few stitches there and when they did the nissen it covered it up. The nissen is when they wrap the top part of the stomach around the esophagus to close it up a little - to stop reflux. So they wrapped it around where the stitches are and it should be fine. He did not seemed concerned about it and said everything went well.

She is at the hospital now sleeping peacefully...or drugedly :) (We ran home for a brief time - mom is up there with her) She really hasn't woken up since then, but who can blame her! They have her on pain meds and she's getting fluids through the IV. We won't use the tube/pump until Wednesday.

We ended up not having to go to ICU because she did so well and is still doing so well. We are in the intermediate care - more than regular room but less than ICU - because she is on BiPap. They like to monitor her more closely. 

Keven is being strong with the help of his Super Dad shirt. I am being strong with the help of caffeine. Thank you to everyone for all the calls, cards, emails and food! We are so lucky to have so many people that care about us, and most importantly about HER!!! THANK YOU!!! We will probably be in the hospital until Thursday or just depends on how things go.

Just a heads up - August in SMA Awareness month. I'll be happy to send anyone information that is willing to post it somewhere for others to learn. Help spread the word so we can find the cure!

Again thank you all so much. We are so glad the first step is done with!

Now on to recovery! :)

Thursday, July 14, 2005

Grace will be having surgery Friday, July 22nd at Austin Children's Hospital. It will be 2 surgeries - the G-tube and the nissen. It'll probably take about 2 hours - we don't know what time it will start yet, they'll call us next Thursday and let us know. She'll go from surgery to the ICU - this is routine and is just so they can keep an extra eye on her. We are very thankful that all our doctors are so willing to work together and be resources for one another. On top of the usual concerns of surgery - SMA kiddos have to be more careful about what anesthesia is used (anybody with neuromuscular diseases from what I understand) and then then extubation back to her BiPap - since respiratory is such a concern. Thankfully Grace is very healthy and very strong respiratory wise so hopefully none of that will be a problem. We'll update as soon as we can after surgery and all. Thank you to everyone!!!!

Wednesday, July 13, 2005

Ok, I was trying to wait until we knew when the surgery would be before I updated again ....But, a lot of people have been asking, which we're so thankful to have so many people that care, so....The doctor called on Monday and he had spoken to Dr. I in Dallas and they have decided to go ahead and do both the G-tube and the nissen. It stinks b/c it's 2 surgeries now, but I'm glad they'll be doing both and we won't have to worry about it. Talking to mom's of other SMA kiddos this is the best way to do it. So, they decided there's no need to do the reflux test they had planned and to just go ahead and schedule the surgery. We are waiting to hear when surgery will be. We have called and asked each day this week so they won't forget us - we're anxious to get it over with - when we know when it will be we will let you all know. It will be at children's hospital in Austin and will probably be a couple of hours long and we will be there for several days...that's as much as we know right now. 

On a different note - Grace's Garage sale is in the works for August 6th - it will be held in the parking lot of our church - St Andrew's - we have a small pile going from a couple of people so hopefully it'll be a decent sell. We may also be selling bake goods and such. If you have things to donate we'll come get them or if you're looking for something we may just have it. 

Thank you for keeping us in your thoughts!

Thursday, July 7, 2005

Ok, so we met with the surgeon today. He is very nice, I like him a lot. Grace just smiled and laughed the whole time, which NEVER happens with her and doctors. So, I took that as a good sign. :) They are going to schedule another test next week to do more examination of whether or not she needs the nissen (the closing up part of the esaphogus) From the one they did this week it appears no, but that is just a quick snapshot. So they're going to do a longer test - 12-24 hours - and check it out - a PH Probe. I'm glad he's doing this and did not just rule out the nissen. While of course we want to do as little as we have to....the majority of SMA kiddos that have G-tubes either get the nissen with it, or shortly there after. And after placing a G-tube usually the occurance of reflux goes up. So...we're trying to avoid multiple surgeries. They are hoping to schedule the test at the beginning of next week and then hopefully the surgery at the end of next week. We'll probably be in the hospital for 2-5 days - depending on if she gets one or both.

Tuesday, July 5, 2005

Alrighty...we had an upper GI done today to check for reflux - a lot of the kiddos have issues with reflux which causes aspiration pneumonia. So, sometimes they have a nissen also where they tie off/close up part of the esophagus so they can't reflux back up into the lungs. She wouldn't drink the bottle they gave her so they had to put in a nasogastric tube - a feeding tube into the stomach through the nose. She is such a trooper!! They only saw one incident of reflux which they felt would not be cause enough to perform the nissen. We have an appointment on Thursday with the surgeon to discuss everything and then we will know exactly what will happen. We also got some powder thickener to add to her bottles so they are a thicker and not as easy to aspirate. 

Thursday, June 30, 2005

Wellp....we had her swallow study today. It's really neat how they do it actually - with barium and x-rays and video tapes and all. They tried several different consistancies of liquid and then tried some more solid food. She wouldn't eat the more solid stuff - course it had that nasty barium paste on it, so I don't blame her. Anyways...she has good oral function and stuff, and she's swallowing like she's supposed to, but...her muscles are weak and she isn't swallowing everything. There's left over residue so then when/if she breathes it may go into the wrong tube. She, the speech pathologist that did the exam, said she saw several incidences where it did go into the wrong area. More so with the thinner liquids than the thicker ones. So, it's time to get Grace's G-tube - her feeding tube. We don't know any of the details yet...have called the pediatrician and am waiting to hear back. It will be a surgery...a tube in the stomach which she'll be fed thru. After that is in place she can eat a few bites of pudding like substance at each meal just for pleasure/taste. But no more than that and her source of nutrition will be thru the tube. Not sure when all this will happen but we are guessing within the next week or so. Dr. I told us to go ahead and come home and have it done in Austin. So, at least we'll be in town. 

Sunday, May 29, 2005

Well, we made it back from our trip to Seattle.  We had a great time!! Since we went with mom and dad there were record highs up there. That seems to happen when they travel.  In the past 2 years they have gone to Italy, Minnesota, and Taos - all times planning for cool weather and all times having heat waves.  But, it made for beautiful weather and a great time! Be sure to check out all the pictures from our trip! 

Monday, May 23, 2005

Alrighty....We went to the pulmonologist last week. He is very pleased with Grace and said she looks and sounds great. I'm not thrilled with the settings he has on the BiPap, but I'm giving it a rest for a little bit.  She's doing fine, so...we'll let it be for now. He'll see us again in 2 months and then we'll work on getting into the sleep lab and doing a real sleep study. He said it takes about a month to get into the sleep lab. Then they'll monitor her all night and be able to measure O2 and CO2 and change her settings also did some blood work on her this visit - to look for other signs from the BiPap to make sure he isn't over/under ventilated. Everything came back normal!

Friday she had her regular PT appointment. Her therapist is very pleased with her. VERY! She wants her to start having therapy 2xs a week b/c she is doing so well and it does seem to be helping. I agree and have been wanting to do twice a week also. I work with her at home, but not the same intensity she gets at therapy, or as knowledgeable as Dianna. Plus it'd be with a different therapist so it'd be good to have another perspective and all.  That'll start a new battle with insurance as they only cover 60 visits a year, so...we have to look into it. The co pay is already almost $30 a visit, so if insurance doesn't cover it. I dunno....but it also says you can see about getting more covered, so we'll be looking into that.

We got our second denial for the stander. We're not done!  The first appeal we just sent in a letter of medical necessity. I had more information, but was advised to just send the LMN so then I'd have more to send if it was denied again. They said sometimes insurance just automatically denies the first time. So, now I'll gather the other papers and send those in. In light of this we have already began talking about her power chair. They usually like the kids to get these sometime between 18-24 months - when kids are really starting to move and explore their independence,'s only right. It's very important developmentally that she have the opportunity too. So, we've already started talking about it with our PT and we're supposed to see a couple of chairs next month so we can figure out what will work best, so we can start the approval process with insurance, so if we fight it for months like the stander...we'll still get it by the time she's 2. HOW EXCITING!!!! Can't you just see her driving around? She'll be so cute. I think I'm more concerned about Keven - wanting to juice it up and race it around...

We went to Scottish Rite on Monday. That was the last day of taking the drug for the drug trial she was on. So, we had just a regular 6 month check up with the neuro up there. They're pleased with her - she looks great. Then we did the study check up - the usual Physical therapy exam, MUNE test and blood draw. The PT was very impressed and pleased with her. She seems to be getting stronger, which "shouldn't happen" but I told them they picked the wrong gal to mess with. :) YEAH!!!  MUNE test was ok - she was so tired by then she fell asleep. Blood draw went excellently. Of course she cried, but they were able to get the vein on the first try. YEAH!!! They did some adjustments on her wheelchair so she fits better with her TLSO on and b/c she's already gotten taller. Not sure of her length, but she weiged in at 22 lbs today.  Course since it's all limp weight it feels like 50.  Now we stay off the drug and go back in 3 months to do a follow up of tests to check for changes off the drug. After that if our home Dr will prescribe it we can put her back on it. That is our current plan. Her pediatrician seemed very please with her and thought she should stay on it. So, once we're cleared from the study hopefully she'll prescribe it for her and we can start it up again. We don't know for sure if it has helped, but it hasn't hurt. And she's doing so well with all we're doing, we don't want to not do it...

We'll be back up in Dallas at the end of June so they can do a video swallow - to check to make sure she's swallowing fine. Now, based on how she eats and what she weighs - she's doing just fine.  But, it's good to check and make sure she's not aspirating at all. So...we'll see... 

On a different note....If anyone knows or has any ideas for fundraising, please let me know. We are trying to think of ways to help raise money for Grace - first and foremost for a handicap van. Our Tribute works ok right now - although it is a pain for me, literally, to lift her chair in and out of it. But, once we get the power chair - that will not be an option, as they weigh way too much. And it would be better for her to be in her chair in the car as it has the best support for her. So...we are not looking to get anything new or fancy (as that would be at least $30,000) - just to serve the purpose.  After that would just be to raise funds to help pay co pays and medical equipment, etc...So, any ideas would be great! We'll probably have a garage sale towards the end of summer....that's about all we have right now. :) So any suggestions would be great.

We leave Wednesday for a trip up to Seattle. We can't wait!!! We get to go see some family we haven't seen in years and they have not met Grace. We can't wait.  Can't wait for cooler weather too!!!

Tuesday, May 10, 2005

Grace had a pulmonology checkup today. She is doing wonderfully! He is very pleased with her and how well she is doing. We'll go back in 2 months. Now, even more exciting...she figured out how to drink through a straw. Well, she's figured out how to suck it up the to get the swallowing down too - right now it just kind of dribbles out her mouth. But it's amazing!!! Just like her!!! 

We go to Scottish Rite in 2 weeks and then off to Seattle. We can't wait!!!!

Monday, April 18, 2005

Ok, we are finally home. We got home Saturday afternoon - after 3 PM. It was a long week in the hospital, but am thankful that Grace was/is healthy and she did amazingly!!! She of course charmed everyone and just kept saying "Hi" over and over. She's too cute! But we're home and we have her set up, in her new big girl room, on the BiPap at night and the pulse-ox, to keep an eye on her heart rate and O2 level. She never stops amazing us!

Thursday, April 7, 2005

First, we've made a lot of progress in the last 2 weeks. We have received Grace's TLSO (Thoraco-Lumbo-Sacral Orthosis, or more simply thoratic lumbar support orthotic), we call her turtle shell. And her KAFOs (knee ankle foot orthotic) leg braces (last night) The turtle shell seems a little big, so we'll get it adjusted and the leg braces won't do us much good until we get the stander. Which we have gotten the letter of medical necessity from the DR to send in for the appeal, so yeah for that too.  We also have the mask and the bonnet for the mask, in our possession, at our house. :) They are supposed to bring us the actual BiPap machine on Monday. And then we are scheduled to check back into the hospital on Tuesday. What a concept - to have all the equipment first. Wouldn't that have saved a lot of time and money in the first place? Sorry...getting off tangent. So, we'll be going back to Austin Children's hospital on Tuesday for a few nights.

Friday, March 25, 2005

Wellp...we're home. We'll probably be back there next week again, but we're home for now and get to celebrate Easter at home. They didn't have everything as "in line" as they thought and didn't have the mask. It was supposed to be overnighted and get it today (Friday) Now, they're saying Monday. They gave us the option of staying and trying some other things - YEAH RIGHT - or waiting for the mask to come in and then getting everything together and making sure it fits and works and then going back. Yeah, I took the second choice. Grace charmed everyone though and was wonderful.

 She has 4 teeth now with another one starting to poke through. Can shake her head no like nobody's business. Sometimes she means it too. :) She's working on yes and it's so cute b/c she moves her eyebrows up and down when she does that one. She gets measured next week for her braces. YEAH!!! They got approved by insurance. Of course the point of them is to use them in the stander that they denied....whatever dude!! We'll get it all together eventually. Hope everyone has a wonderful Easter. I know we will!

Wednesday, March 23, 2005

Well, today was not a very exciting nor productive day.  The Dr/hospital was expecting the DME (durable medical equipment) to bring masks to try – that was the point of coming in early in the day. The DME got here and didn’t know that and assumed a children’s hospital would have some. Plus neither of them keep them in stock b/c they’ve never done it. So, they don’t even know what they want or need. I’d be even madder if they weren’t so willing to listen and do what they can. So…didn’t really accomplish anything today. They are gonna attempt to do a nasal prong thing tonight and push some oxygen thru just to see how she takes getting pressure and such. But, they probably won’t get a mask here until Friday. Then time to get use to it. So, we’ll probably be her until at least Sat or Sun. She’s doing great though and charming everyone, as usual! 

Tuesday, March 22, 2005

Grace's hospital stay - Don't worry - it's a good stay. Kind of sudden, but her pulmonologist is on call this week, so he wanted to get us there since he'll be there. We will be checking into Children's Wednesday morning for her sleep/BiPap evaluation. We'll play by ear how long we stay, but between 3-5 days. (hopefully 3 so we can be home for Easter)  She is in great health, no concerns, just want to observe her, check for sleep apnea, and get her set up on the BiPap and make sure we get the right settings going for it. Some parents from our support group have said they were just sent the equipment and told "there you go" I would much rather have it this way - with the experts around, to make sure we get it right and what's best for Grace. Unfortunately, she's not going to like it, but it should really help her sleep better at night, sweat less, and kind of give her lungs a break so they don't have to work as hard and kind of rest. And, hey, maybe I'll get some stuff done sitting in the room all day. :) Pictures organized, bills paid...who knows.
Also, we recieved a call yesterday that her stander we ordered was denied by insurance. Not a problem, lots of appeals to do and letters to write. It's a pain, but we'll get it. And, from what I've heard, we'll get use to fighting for stuff. Thank goodness for insurance, but sometimes, man oh man...
She also had her television debut this week. Sunday we went down to do a spot on KXAN for the firefighters Fill the Boot campaign and MDA. We did a live thing at 8 AM and then they taped us a played it at 5. She's gone from print to small screen. Big screen here we come... Just kidding.
 Hope everyone has a wonderful week and a Blessed Easter!!!

Thursday, March 3, 2005

HAPPY BIRTHDAY TO GRACE!!! I can't believe she's 1!!!!! Such a sweet angel!!!

Tuesday we had our first appt with the orthopedic. She was very nice and I liked her. Didn't agree with everything she said, but I'm gathering my information and then will win that battle too. :) Actually, that's why I like her - I don't think it'll be a battle. She is very supportive of what the parents want to do. I digress. Grace looks pretty good. She does have hip displaysia and scoliosis but these are both things that are expected and come along with the SMA. Most kids end up with rods or fusion or some kind of back surgery for the scoliosis. It is good that her hips weren't dislocated and the scoliosis right now is only about 20 degree curve. Oh, and one leg is slightly longer than the other. I'm researching and gathering information on TLSOs and we'll probably be getting one of those.

She had her 1 year check up at the pediatrician today. She is 30 inches long and about 21 pounds. (75th percentile for height, 50 for weight and 97 for head size :) ) She looks good and sounds good. We got a script to help with constipation. Talked about TLSOs with her.

The RT from the DME is coming this afternoon with our cough assist to set it up and show us how to use it.

Unfortunately we will be driving back up to Dallas one day next week as they have to get the blood they couldn't draw. But it'll just be up, blood draw and back....

I also forgot to mention last time- in the March edition of Men's Health there is an article about stem cell research/ SMA, from the view of a father with a child with SMA. Something to read if you get that magazine. If you don't...Matthew Macougnehey ( I can't spell ) is on the cover. ;)

That's about it from this end. Keep up the great thoughts and/or prayers - they seem to be working!!!!!

Thursday, February 24, 2005

Ok, so other than the 1000 miles put on my car in the last week and the sore bottom from the car and waiting rooms - our week has been good.

We were in Dallas Mon/Tues at Scottish Rite. Everything went pretty well really. They all were amazed at how big she has gotten and how well she is doing. She has figured out doctor's and their offices. She would be fine until they got close to her and she'd start crying. Even when they were just weighing her and measuring her she was screaming. She's usually really good - but she's remembering now and figured it all out. She weighed almost 22 pounds and about 30 inches tall I think. Her PT exam went well and the therapist was very impressed with her progress. The MUNE test she actually did pretty well during. Thanks to the Doctor Seuss book she had. She LOVES books. The blood draw went terribly - as usual. They checked both arms, both wrists, both feet - poked her 3 times - did the digging in the arm with the needle for the vein and finally gave up. So, they didn't get the blood they needed for the study and she screamed a lot, but she's ok.

Then we went back Thursday for a pulmonology consult. We have a pulm. here in Austin, but this one works with Dr. I on the clinical study, and all the eyes and brains we can get watching her the better. He was very impressed with her. Didn't hardly believe she is Type I since she is doing so well. The NIV protocol we've been talking about and pursuing, he's not a huge supporter of. And he said "She ain't broke, so don't fix her" She's doing great. Her O2 is good, CO2 is good, chest has a little of the shape they watch for, but not bad...did chest x-rays and were clear and sounded good. He's very impressed that she hasn't been sick her whole first year - for a Type I that's almost unheard of. Heck, for any child that's almost unheard of Usually have colds and/or earaches. We are so blessed. And he was impressed with her arm movement and head control. So...who knows. There are concerns about her during the night though - with O2 getting too low and apnea and all. So I will be scheduling a sleep study so they can watch her over night and monitor her and see if something at night would be useful. We'll go from there. We will also be looking into a swallow study - another common study for these kiddos. That's something to keep an eye on to watch as a precursor for a feeding tube. Right now she seems to be fine, but it's something to watch and check into.

Next week she has her 1 year check up and her first Orthopedic appt - Scoliosis is a concern with all these kiddos so we have to watch her and before we get her KAFOs ordered have her checked out and make sure we order the correct things.

She is truly amazing and we are truly blessed!! Thanks for everything you all do for us! Just your thoughts and prayers are a big help!

Monday, February 14, 2005

Just wanted to say Grace had a great Valentine's day as we drove to Dallas and picked up her wheelchair. It was a long day as we got up, drove, got the wheelchair - adjustments, pictures, etc... - and drove back and got home about 8 PM. But it's great! It's a pain to take apart to put into the car and heavy, but all that will be worth it since it supports her a lot better. 

She still has a lot of congestion going on and we're hoping it's not draining into her chest/lungs as that would not be good and could easily become pneumonia. We're staying positive though and she's happy. We're still waiting on the cough assist. It'd be great to have right now!

Hope everyone had a great valentine's day!!!

Thursday, January 6, 2005

Well, we had a great Holiday Season. Grace got to spend a lot of time with all of her family.  She was of course very spoiled.  She has more stuffed animals and clothes than we know what to do with.  She also got some money for her college fund. Watch out MIT! We loved having time at home with just the 3 of us and focusing on Grace.  We are so blessed to have her.  New Years Grace and I were party poopers and were asleep before midnight.  But, 2005 came anyways.  She's now 10 months old!! I  can't believe it's been almost a year! She's doing wonderfully and we just wish that top tooth she's trying to get in would hurry up and break through!

Wednesday, December 22, 2004

I must say that Grace is amazing. She was poked, prodded and messed with to all ends and when we got in the car Tuesday to come home she was laughing.  She was soon asleep, but was still smiling when it was all over. She's incredible!!!!

Let's see...Monday we checked in at Children's in Dallas at 6:45 AM and checked out about 9:15 PM. They did a blood draw before she had her medicine and then did 5 more after her medicine at different intervals. They did all the blood with the heel clip things, so her heels are all beat up and feet are sore. They also took 4 urine samples. Luckily they didn't cath her - they bagged her, but that didn't look like much fun either, all the sticky stuff and having to constantly change it. No fun!!! Poor little girl. They were doing blood and urine samples as part of the study she is in. They are seeing how her body metabolizes and uses the medicine. Well, then the nurse messed stuff up.   We're used to giving her the medicine with breakfast and dinner.  So, at dinner I went to ask her about her medicine. She had to give it to her that morning - since we're at the hospital and all. So, she came in to do it and Keven being the smart guy he is said he didn't think she was supposed to have it since they were checking to see how her body did with the medicine and they were checking at different intervals from her first dosage.  This made sense and I didn't know because she hadn't said so I went to look for the Doctor.  The nurse said not to worry about it she would have said something if she didn't want her to have it.  Keven and I didn't like that and kept looking for her.  The nurse didn't care and went ahead and gave it to her and said oh well - blame me.  Then her shift ended and she left. The Dr. was not happy.  She had marked her chart, which the nurse didn't even look at, and had her pager number on the chart in case they needed her.  So, the data is skewed and the Dr. was not all too pleased with the nurse.  But, they're just going to make note of it and mark it - we're not doing it again. Thank goodness!!! We bought her a Beanie Bopper doll in the gift shop b/c it's her. It's an angel with blonde hair, blue eyes and big round cheeks. She's so cute, but not as cute as Grace. 

Tuesday we checked in at Scottish Rite at 7:15AM.  Dr. I looked her over, did weight, vitals, etc...Then they had to do a blood draw. Poor little girl.  They did her arm, but got it the first time this time. THANK GOODNESS!!!  They gave her a beanie baby - lamb, for being good.  By 9 she was exhausted and  then we had to go do the Physical Therapy evaluation.  She cried through the whole thing. She usually fusses some because they're working with her to see what she can do physically. So, they push her beyond her abilities. So, it's always hard and tiring, but today...just horrible. She cried the whole time and just kept looking at us like make them stop. It broke our hearts. We finally got out of there and she took about a 30 minute nap. While she was napping Ms Dallas County came and sang for everyone and Santa passed out toys to the kiddos - she got a stuffed Santa doll. Then we went to take pictures. One of the OT ladies is doing a presentation in February and wanted to use Grace as an example in her slide show. Who can blame her? They took a picture of her in her regular stroller and then one in her kid kart. Showing the difference in support and seating. They're hoping to get her wheelchair in and get a picture of her in that too. Then another break time...

Then to our "Family Conference" with all the doctors. The chance to ask our questions. They got the gene count back and she is indeed SMA Type I. That wasn't what we wanted to hear.  But they said just because the odds are against her....The mortality rate by age 2 isn't as high as once was. But it is still about 80% pass by age 2. She is doing really well though, even the Dr. said she's doing great, and so we are hopeful. The study she's in is hopefully at least slowing down the progression of the disease. They're still searching for that cure!!  They are also great because they talk about years down the road...don't just dismiss her. We met the support people there, that can be of support in Dallas and meet us up with someone in Austin.  Dr. I is a big supporter of NIV (Non invasive ventilation)  The BiPap and such - what the pulm. had been a little against. But, said there is no need for it right now. She's doing great, so not to worry about it yet. Yes, they want to be proactive and catch stuff ASAP, but they haven't seen supporting evidence in using it so young if they're doing fine. But, when it's time for that they know all about it and have lots of experience and are there and ready to do it. Same with the G-tube (Feeding tube) She doesn't need it yet, just keep an eye on her, and when it's time - it'll be done no problem. Both things are more of a when will she need it - not if she will need it. What we can do is keep her healthy - especially respiratory wise - out of smoke, away from germs and sick people, check for allergies (which we need to look into b/c I'm pretty sure she has allergies - her nose is always congested, but her chest is clear. That's good that the chest is clear, but...she'd probably like her nose clear too) And for her a simple cold can quickly turn very bad. Respiratory is the biggest concern right now b/c they aren't that strong, so they can't fight it off like healthy people. She also recommends a power wheelchair about age 2. It's great for them because they get to learn more independence and because they can learn so much and so well at that age. I think Keven's more excited about it than her. : )  Also, we have to make sure we watch her positioning - when sitting and laying and such - to watch for scoliosis. Most of the kiddos at some point develop it and have spine fusions or something like that. So, just try and keep her as straight as possible and keep an eye on her back. They do also know people, in the area, that have done the pre-genetic diagnosing, with IVF and it was successful. So, we hope to be looking into that so Grace can be the big sister she's meant to be. Everyone is so nice and accessible and great.  

After the meeting we had to wait and talk to the nurse heading the research study so mom and Grace wandered off. They found a party going on down the hall - The princess and nutcracker from the Nutcracker ballet in Dallas had come down. So they put face paint on Grace and took a picture with her.  And a lady from The Dallas Morning News took her picture and info, so she might be in the paper tomorrow.  Then we went and filled out paper work for our handicap parking sticker and finally left about 3 PM. She slept almost the whole way home. Who can blame her!!  It was a long 2 days, but we made it!! 

Grace was great!! She just has the most beautiful and loving spirit and everyone can feel it!  Santa visited her early on Friday the 17th and she got her present. A puppy dog.  Her and Hope. We have lots of hope for Grace and progress, so we named her puppy Hope Noel. She's still not too sure of her, but seems to like her ok.  Thank you for continuing to keep us in your hearts and prayers. We keep all of you close to our hearts too! Hope you have a wonderful holiday!! We will - it's Grace's first!! We're so excited!!!