Comments on: Nov. 23rd, 2009 http://daniellesacchetti.mldfamily.org/2009/11/23/nov-23rd-2009/ MLD Family Personal Pages weblog Wed, 17 Feb 2010 16:31:53 +0000 hourly 1 http://wordpress.org/?v=3.0.1 By: Michelle Pierce http://daniellesacchetti.mldfamily.org/2009/11/23/nov-23rd-2009/comment-page-1/#comment-357 Michelle Pierce Sat, 05 Dec 2009 14:50:59 +0000 http://daniellesacchetti.mldfamily.org/2009/11/23/nov-23rd-2009/#comment-357 Thinking of you all today and hoping Danielle is having a good week! Hope the klonopin is still working well (I'm definitely writing that one down to keep up our sleeve for Emily - especially since Danielle and Emily seem so similar.) Praying for you continually for joy, peace, and rest!! Happy belated birthday Danielle! love, Michelle Pierce and family Thinking of you all today and hoping Danielle is having a good week! Hope the klonopin is still working well (I’m definitely writing that one down to keep up our sleeve for Emily – especially since Danielle and Emily seem so similar.)

Praying for you continually for joy, peace, and rest!! Happy belated birthday Danielle!

love,
Michelle Pierce and family

]]> By: Peggy Hoover http://daniellesacchetti.mldfamily.org/2009/11/23/nov-23rd-2009/comment-page-1/#comment-356 Peggy Hoover Sun, 29 Nov 2009 21:01:01 +0000 http://daniellesacchetti.mldfamily.org/2009/11/23/nov-23rd-2009/#comment-356 HAPPY BIRTHDAY DANIELLE! I think about you guys all the time, and say lots of prayers for you. You are amazing with all that you have to do and choose to do. God sure knew who to give Danielle to. I hope she continues to find comfort and that you find time for a little family fun. I wish you some quiet, peaceful moments and LOTS of really good days for Danielle. Love, Peggy HAPPY BIRTHDAY DANIELLE! I think about you guys all the time, and say lots of prayers for you. You are amazing with all that you have to do and choose to do. God sure knew who to give Danielle to. I hope she continues to find comfort and that you find time for a little family fun. I wish you some quiet, peaceful moments and LOTS of really good days for Danielle.

Love,
Peggy

]]> By: Susie http://daniellesacchetti.mldfamily.org/2009/11/23/nov-23rd-2009/comment-page-1/#comment-355 Susie Sat, 28 Nov 2009 08:40:33 +0000 http://daniellesacchetti.mldfamily.org/2009/11/23/nov-23rd-2009/#comment-355 Megan and Tony, you and your kids have been on our minds down here and are happy to hear that Danielle may be a little more comfortable now. I can't believe you can keep on going, Megan, especially since you now have shingles, for Pete's sake. God bless and keep you all. Love, Susie Megan and Tony, you and your kids have been on our minds down here and are happy to hear that Danielle may be a little more comfortable now. I can’t believe you can keep on going, Megan, especially since you now have shingles, for Pete’s sake. God bless and keep you all.

Love,
Susie

]]> By: Libby http://daniellesacchetti.mldfamily.org/2009/11/23/nov-23rd-2009/comment-page-1/#comment-354 Libby Thu, 26 Nov 2009 01:55:19 +0000 http://daniellesacchetti.mldfamily.org/2009/11/23/nov-23rd-2009/#comment-354 My goodness and I thought my week was shit! God love ya! I hope Danielle keeps on going for you guys! I have so much admeration for you and your family! I know that as an MLD parent we HAVE to be strong...but you are truely the STRONGEST parents I know! Please know that i really feel as if you are doing everything possible to make Danielle comfortable and loved. Knnow matter what God has to come for her, she has had a WONDERFUL life with you! Please call me if you ever want to talk! I am up all night LOL! Lots of love, Libby My goodness and I thought my week was shit! God love ya! I hope Danielle keeps on going for you guys! I have so much admeration for you and your family! I know that as an MLD parent we HAVE to be strong…but you are truely the STRONGEST parents I know!

Please know that i really feel as if you are doing everything possible to make Danielle comfortable and loved. Knnow matter what God has to come for her, she has had a WONDERFUL life with you!

Please call me if you ever want to talk! I am up all night LOL!

Lots of love,
Libby

]]> By: Teryn http://daniellesacchetti.mldfamily.org/2009/11/23/nov-23rd-2009/comment-page-1/#comment-353 Teryn Wed, 25 Nov 2009 18:04:13 +0000 http://daniellesacchetti.mldfamily.org/2009/11/23/nov-23rd-2009/#comment-353 Hi Megan and Tony, I just read your post. You know our heart and prayers go out to you all! Happy 7th Birthday to Danielle!! What a milestone! I will get the thoughts of the Medical Board for you on Klonopin. I do know that it is a good drug and can be helpful for some MLD affected people. (There is that "individual" thing again!) Lindy was on it in the earlier years. It is usually prescribed to control seizure and since it seems to be working so well for Danielle I'm wondering if she is having seizures and not just posturing and clonus. Please give a hug to Danielle for us! Hope you have a nice Thanksgiving and make some memories!! Butterfly hugs, Teryn Hi Megan and Tony,
I just read your post. You know our heart and prayers go out to you all! Happy 7th Birthday to Danielle!! What a milestone!

I will get the thoughts of the Medical Board for you on Klonopin. I do know that it is a good drug and can be helpful for some MLD affected people. (There is that “individual” thing again!) Lindy was on it in the earlier years. It is usually prescribed to control seizure and since it seems to be working so well for Danielle I’m wondering if she is having seizures and not just posturing and clonus.

Please give a hug to Danielle for us! Hope you have a nice Thanksgiving and make some memories!!

Butterfly hugs,
Teryn

]]> By: ginny http://daniellesacchetti.mldfamily.org/2009/11/23/nov-23rd-2009/comment-page-1/#comment-352 ginny Wed, 25 Nov 2009 00:09:42 +0000 http://daniellesacchetti.mldfamily.org/2009/11/23/nov-23rd-2009/#comment-352 Still holding you all up in prayer. Happy Birthday Daniell! Klonopin is an excellent drug and am so glad it is doing what it is intended to do. Here is praying you have that quiet moment occasionally just for yourselves...when babies are born, we all learn to sleep when they sleep. I hope that is possible for you, you MUST rest. God Bless Ginny E Still holding you all up in prayer. Happy Birthday Daniell! Klonopin is an excellent drug and am so glad it is doing what it is intended to do. Here is praying you have that quiet moment occasionally just for yourselves…when babies are born, we all learn to sleep when they sleep. I hope that is possible for you, you MUST rest.

God Bless
Ginny E

]]> By: Roberta Thomas http://daniellesacchetti.mldfamily.org/2009/11/23/nov-23rd-2009/comment-page-1/#comment-351 Roberta Thomas Tue, 24 Nov 2009 18:18:22 +0000 http://daniellesacchetti.mldfamily.org/2009/11/23/nov-23rd-2009/#comment-351 Hi Meg and Tony ;) I am so glad the Klonapin is working...Dani seems to be doing so much better now, sleeping at night and tolerating her feeds. Im wondering how she is feeling now? How is her congestion and lung sounds? As your Aunt was saying, you have to take care of you....go have a spa day, get a pedicure, or just go to the library sit in a bean bag and veg with a nice cup of coffee. If I happen not to be working on the weekend, I would love to pick Anthony up and take him to a movie with Jory and I (If he will go with me ;) Find time for you and Tony too.. that is SOooo...important for both of you ;) I love you all....like mine, Roberta ;) P.S Please, give Danielle a hug and a kiss for me. Hi Meg and Tony ;)
I am so glad the Klonapin is working…Dani seems to be doing so much better now, sleeping at night and tolerating her feeds.
Im wondering how she is feeling now? How is her congestion and lung sounds?
As your Aunt was saying, you have to take care of you….go have a spa day, get a pedicure, or just go to the library sit in a bean bag and veg with a nice cup of coffee.
If I happen not to be working on the weekend, I would love to pick Anthony up and take him to a movie with Jory and I (If he will go with me ;)
Find time for you and Tony too.. that is SOooo…important for both of you ;)

I love you all….like mine,
Roberta ;)

P.S Please, give Danielle a hug and a kiss for me.

]]> By: Gena http://daniellesacchetti.mldfamily.org/2009/11/23/nov-23rd-2009/comment-page-1/#comment-350 Gena Tue, 24 Nov 2009 16:09:15 +0000 http://daniellesacchetti.mldfamily.org/2009/11/23/nov-23rd-2009/#comment-350 Hi Megan, Still praying here! I hope you'll be feeling better soon, and so glad Danielle is doing better and you can rock her! Happy birthday, Danielle! --Gena Hi Megan,
Still praying here! I hope you’ll be feeling better soon, and so glad Danielle is doing better and you can rock her! Happy birthday, Danielle!
–Gena

]]> By: Martha Urquhart http://daniellesacchetti.mldfamily.org/2009/11/23/nov-23rd-2009/comment-page-1/#comment-349 Martha Urquhart Tue, 24 Nov 2009 15:31:18 +0000 http://daniellesacchetti.mldfamily.org/2009/11/23/nov-23rd-2009/#comment-349 We know Megan through Kay Carlile. We are saying prayers for Megan. God be with all of you. We know Megan through Kay Carlile.
We are saying prayers for Megan. God be with all of you.

]]> By: Chriss http://daniellesacchetti.mldfamily.org/2009/11/23/nov-23rd-2009/comment-page-1/#comment-348 Chriss Tue, 24 Nov 2009 04:29:50 +0000 http://daniellesacchetti.mldfamily.org/2009/11/23/nov-23rd-2009/#comment-348 Megan, Tony, I don't know how you do it, but yet as a Mom you just do it, your not sure where you even find the strength, but you just do it....but you have to take care of yourself to. Shingles in itself is very painful, so please remember when you can get the break, when the nurses are attending to Danielle you need to find the time to take care of you. Again as I say in every posting, I don't know what I can do for you, but if you need anything please just call, email, white smoke, whatever you need. Love Aunt Chriss Megan, Tony,
I don’t know how you do it, but yet as a Mom you just do it, your not sure where you even find the strength, but you just do it….but you have to take care of yourself to. Shingles in itself is very painful, so please remember when you can get the break, when the nurses are attending to Danielle you need to find the time to take care of you.
Again as I say in every posting, I don’t know what I can do for you, but if you need anything please just call, email, white smoke, whatever you need.
Love Aunt Chriss

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