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Missy J
Missy J
Angela, I am so sorry that Eli is going to have to have yet another surgery. We will definitely be praying for him throughout along with you and all your family. I know that this is a frightening time for you all. I truly hope that this enables a path of healing for Eli now. (((((((HUGS)))))) Please keep me posted on when exactly the surgery is scheduled. We are sending you prayers now for peace and strength.
Missy J
Missy J
(((((((((((HUGS))))))))))) As always, continued prayers for you all -- and for the doctors as well!! I understand that your feeling is a desire to deal with this in the best interest of the long term positive results! I'll be praying that those making the decision will lean that way as well vs. the "here and now". Your thought of turning it over to God is inspirational and what I needed to be reminded of again today. Thank you for that!
Missy J
Missy J
{{{{{{{{{{HUGS}}}}}}}}}} Hon, there truly aren't adequate words. The options all are understandably worrisome. We will be praying especially for Eli's "team" to be guided through both their decision making and ultimate care to give the very best possible.

I'm praying especially for you too mama! Please know you that right now while you may be feeling weak, that you have others willing to pray with you... for you... and always by your side -- even those of us that are cross country!

Thank you for updating and for giving us another opportunity to offer our love and support for Eli, you, and your family.
Missy J
Missy J
Angela, I just finished reading through your latest entry in your blog. That is excellent news that after all this time there are answers on what is happening with Eli! Please know you can continue to count on our positive thoughts and prayers for Eli, and for guidance and wisdom for all those in charge of his care. Please do share the link on Pregnancy.org as I know more there would welcome the opportunity to lend their support also!


(((((HUGS)))))


 
Missy J
Missy J
{{{{{{HUGS}}}}}}}}  I'm so sorry to hear of those results. I am very grateful that you have offered us this opportunity. Please know that Eli and all your family will remain in all of our thoughts and prayers. If there is more that we can do to offer you our support, let me know.
Jennifer Shaw
Jennifer Shaw
I will certainly keep your little guy in my prayers. I am sure it is frustrating to have to "catch" a episode. It's kinda like an EEG for seizures. Unless it picks it up in the hour they are monitoring, they may have it but no one will know it.  =(

Praying for a good update on Monday...
Missy J
Missy J
{{{{{HUGS}}}}}}  Thank you for sharing that update here. I'm not able to post on the blog w/o setting up another account so I'm hoping you will read here when you have a chance.

You would think having a "name" to identify at least some of Eli's battle would be giving you comfort. Instead it appears that this particular diagnosis is one filled with even more questions -- questions on how to treat, what to do, what to let Eli do, etc. I am certain that you long in some ways to place him within a bubble to "protect" him from this unseen enemy within... but know too that as his mom you want for him to simply "be five" and enjoy being the delightful little boy he is. I have more that I want to share with you as I was thinking of you over this past weekend while contemplating viewing our Lord's passion from a mother's perspective (Mary's) -- and thought about the cross you and other moms have been struggling under. I know that you would spare your son any suffering if it was at all possible. Instead your cross has included that absolute helplessness. I can say though Angela again how very much I admire you for continuing to be Eli's advocate. While I know at times you may question "why God" an alternative perspective for me is "thank you God" to bless Eli with the gift of you as his mom!

Know that I am continuing to pray for you, Eli, and all your family daily... and yes, have included prayers for wisdom for his doctors and all the medical caregivers he has!

For the stroller -- after you use your friends' Sit-N-Stand you may have a better idea of how well Eli will respond to using it. Since that particular kind is more for "big kids". :) If you approach it that way and explaining that by riding some he would be *helping* you with your little one, that may persuade him a little more too.

Thank you again for the update! Know that you have so many cheerleaders pulling for you all!

Take care,
Missy J
Missy J
Angela,

I read your news and had to walk away for a bit to process. I imagine that you felt more like running. *whew* Definitely not the news that you wanted, hoped for, or even had anywhere on your "list" of choices. I'm so very sorry. I wish that there were some words that I could find to make this somehow "better".  I believe that I've shared before that I'm a "fixer" by nature... and definitely rely on words to convey what I feel -- but there are none that quite capture that. 

I am though also a practical optimist. While indeed I did actually walk away from the computer for a bit, I also took some time for prayer.  It didn't help with understanding.. as there are quite a few things that I really wouldn't mind asking God those "WHY" on.  It did though help to grant me a *sense* of peace amidst this current storm of anxiety and longing from my own "mother's heart" for you and your family.  As a practical optimist, one of the gifts that -- while seemingly joking -- I DO feel blessed with -- is my ability to refocus... even within ultimate challenges... and strive to gain a foothold on a positive plan of action.

My question to you I guess is "what next"?  I am pleased to hear this time is more slow growing... but TOTALLY get your fear/ concern over Eli living "outside of the textbook" cases.  With that in mind and that there seems to be at least a possibility of things changing at a faster and/or slower pace... what is next?  Are the doctors going to run another scan within a few months and evaluate the amount of change in that time to see if it is still on the same track and rate of growth?  What restrictions (if any) did they give you right now?

A somewhat separate thought -- I wanted to take a moment to say thank you. You offer a source of inspiration to so many women throughout the 'net both through here and pg.org. I am personally encouraged by your obvious love for all of your children/family, your sincere faith, and the way you champion and serve as advocate as needed. (((((((((HUGS)))))))) Please let me know if there is any other way that I / we may offer our support. In the meantime, know you remain in our thoughts and prayers.
Diane J
Diane J
Hi honey--I can't log in to PO again from work, but wanted to let you know that I saw your post from yesterday.  Have you put in a call yet to the doc to see what he has to say about the statement regarding Eli's head?

Man, I sure hate that this is never ending for you guys.

Much love, as always ♥

Diane
Diane J
Diane J
Angela, without a doubt, you are one of the most amazing mothers I have the privledge to call my friend.  I am so happy for Eli that he has you.  You two were given to each other for a very special reason.

I am so glad that you listened to your mommy gut and brought everything forward to the doctor.  A momma knows.

much love,
Diane (and Mikey too!)
Missy J
Missy J
Angela, I want to go back and reread your entry again tomorrow.  Your full blog link conveyed a beautiful message and one that I want time to think about and yes.. to pray.  Most certainly you have our positive thoughts and prayers for you to not just make the lists (and wow that one was incredibly observant and so important for the doctors!)... but also to continue to be guided along the way to be both the advocate and support he needs.  I know that it is so hard to not be able to take all of these "puzzle pieces" and be able to put them together for that "big picture" but what you are doing is equally valuable as you pull them all into view for those that CAN figure them out.  (((((((HUGS)))))))))  I'm sorry if I'm rambling.  It's late here but most of all I did want you to know that you remain in our thoughts and prayers.  Thank you for the update! 
Diane J
Diane J
Hi sweetheart!  Either I am just really forgetful or lacking a few cells, but I don't recall knowing you had a CB for Eli!  I know, bad friend I am.

I saw your post on PO and clicked on your link without reading your latest updates.  I'm off now, but Mikey has a CB too,
michealmikeyjohnson.

Much love,

Diane aka SparkleMomma :)
Missy J
Missy J
Angela, I am so sorry that Eli is going to have to have yet another surgery. We will definitely be praying for him throughout along with you and all your family. I know that this is a frightening time for you all. I truly hope that this enables a path of healing for Eli now. (((((((HUGS)))))) Please keep me posted on when exactly the surgery is scheduled. We are sending you prayers now for peace and strength.
Missy J
Missy J
{{{{{{{{{{HUGS}}}}}}}}}} Hon, there truly aren't adequate words. The options all are understandably worrisome. We will be praying especially for Eli's "team" to be guided through both their decision making and ultimate care to give the very best possible.

I'm praying especially for you too mama! Please know you that right now while you may be feeling weak, that you have others willing to pray with you... for you... and always by your side -- even those of us that are cross country!

Thank you for updating and for giving us another opportunity to offer our love and support for Eli, you, and your family.
Missy J
Missy J
{{{{{{HUGS}}}}}}}}  I'm so sorry to hear of those results. I am very grateful that you have offered us this opportunity. Please know that Eli and all your family will remain in all of our thoughts and prayers. If there is more that we can do to offer you our support, let me know.
Jennifer Shaw
Jennifer Shaw
I will certainly keep your little guy in my prayers. I am sure it is frustrating to have to "catch" a episode. It's kinda like an EEG for seizures. Unless it picks it up in the hour they are monitoring, they may have it but no one will know it.  =(

Praying for a good update on Monday...
Missy J
Missy J
Angela,

I read your news and had to walk away for a bit to process. I imagine that you felt more like running. *whew* Definitely not the news that you wanted, hoped for, or even had anywhere on your "list" of choices. I'm so very sorry. I wish that there were some words that I could find to make this somehow "better".  I believe that I've shared before that I'm a "fixer" by nature... and definitely rely on words to convey what I feel -- but there are none that quite capture that. 

I am though also a practical optimist. While indeed I did actually walk away from the computer for a bit, I also took some time for prayer.  It didn't help with understanding.. as there are quite a few things that I really wouldn't mind asking God those "WHY" on.  It did though help to grant me a *sense* of peace amidst this current storm of anxiety and longing from my own "mother's heart" for you and your family.  As a practical optimist, one of the gifts that -- while seemingly joking -- I DO feel blessed with -- is my ability to refocus... even within ultimate challenges... and strive to gain a foothold on a positive plan of action.

My question to you I guess is "what next"?  I am pleased to hear this time is more slow growing... but TOTALLY get your fear/ concern over Eli living "outside of the textbook" cases.  With that in mind and that there seems to be at least a possibility of things changing at a faster and/or slower pace... what is next?  Are the doctors going to run another scan within a few months and evaluate the amount of change in that time to see if it is still on the same track and rate of growth?  What restrictions (if any) did they give you right now?

A somewhat separate thought -- I wanted to take a moment to say thank you. You offer a source of inspiration to so many women throughout the 'net both through here and pg.org. I am personally encouraged by your obvious love for all of your children/family, your sincere faith, and the way you champion and serve as advocate as needed. (((((((((HUGS)))))))) Please let me know if there is any other way that I / we may offer our support. In the meantime, know you remain in our thoughts and prayers.
Diane J
Diane J
Hi honey--I can't log in to PO again from work, but wanted to let you know that I saw your post from yesterday.  Have you put in a call yet to the doc to see what he has to say about the statement regarding Eli's head?

Man, I sure hate that this is never ending for you guys.

Much love, as always ♥

Diane
Missy J
Missy J
Angela, I want to go back and reread your entry again tomorrow.  Your full blog link conveyed a beautiful message and one that I want time to think about and yes.. to pray.  Most certainly you have our positive thoughts and prayers for you to not just make the lists (and wow that one was incredibly observant and so important for the doctors!)... but also to continue to be guided along the way to be both the advocate and support he needs.  I know that it is so hard to not be able to take all of these "puzzle pieces" and be able to put them together for that "big picture" but what you are doing is equally valuable as you pull them all into view for those that CAN figure them out.  (((((((HUGS)))))))))  I'm sorry if I'm rambling.  It's late here but most of all I did want you to know that you remain in our thoughts and prayers.  Thank you for the update! 
Missy J
Missy J
(((((((((((HUGS))))))))))) As always, continued prayers for you all -- and for the doctors as well!! I understand that your feeling is a desire to deal with this in the best interest of the long term positive results! I'll be praying that those making the decision will lean that way as well vs. the "here and now". Your thought of turning it over to God is inspirational and what I needed to be reminded of again today. Thank you for that!
Missy J
Missy J
Angela, I just finished reading through your latest entry in your blog. That is excellent news that after all this time there are answers on what is happening with Eli! Please know you can continue to count on our positive thoughts and prayers for Eli, and for guidance and wisdom for all those in charge of his care. Please do share the link on Pregnancy.org as I know more there would welcome the opportunity to lend their support also!


(((((HUGS)))))


 
Missy J
Missy J
{{{{{HUGS}}}}}}  Thank you for sharing that update here. I'm not able to post on the blog w/o setting up another account so I'm hoping you will read here when you have a chance.

You would think having a "name" to identify at least some of Eli's battle would be giving you comfort. Instead it appears that this particular diagnosis is one filled with even more questions -- questions on how to treat, what to do, what to let Eli do, etc. I am certain that you long in some ways to place him within a bubble to "protect" him from this unseen enemy within... but know too that as his mom you want for him to simply "be five" and enjoy being the delightful little boy he is. I have more that I want to share with you as I was thinking of you over this past weekend while contemplating viewing our Lord's passion from a mother's perspective (Mary's) -- and thought about the cross you and other moms have been struggling under. I know that you would spare your son any suffering if it was at all possible. Instead your cross has included that absolute helplessness. I can say though Angela again how very much I admire you for continuing to be Eli's advocate. While I know at times you may question "why God" an alternative perspective for me is "thank you God" to bless Eli with the gift of you as his mom!

Know that I am continuing to pray for you, Eli, and all your family daily... and yes, have included prayers for wisdom for his doctors and all the medical caregivers he has!

For the stroller -- after you use your friends' Sit-N-Stand you may have a better idea of how well Eli will respond to using it. Since that particular kind is more for "big kids". :) If you approach it that way and explaining that by riding some he would be *helping* you with your little one, that may persuade him a little more too.

Thank you again for the update! Know that you have so many cheerleaders pulling for you all!

Take care,
Diane J
Diane J
Angela, without a doubt, you are one of the most amazing mothers I have the privledge to call my friend.  I am so happy for Eli that he has you.  You two were given to each other for a very special reason.

I am so glad that you listened to your mommy gut and brought everything forward to the doctor.  A momma knows.

much love,
Diane (and Mikey too!)
Diane J
Diane J
Hi sweetheart!  Either I am just really forgetful or lacking a few cells, but I don't recall knowing you had a CB for Eli!  I know, bad friend I am.

I saw your post on PO and clicked on your link without reading your latest updates.  I'm off now, but Mikey has a CB too,
michealmikeyjohnson.

Much love,

Diane aka SparkleMomma :)
Missy J
Missy J
(((((((((((HUGS))))))))))) As always, continued prayers for you all -- and for the doctors as well!! I understand that your feeling is a desire to deal with this in the best interest of the long term positive results! I'll be praying that those making the decision will lean that way as well vs. the "here and now". Your thought of turning it over to God is inspirational and what I needed to be reminded of again today. Thank you for that!
Missy J
Missy J
{{{{{{HUGS}}}}}}}}  I'm so sorry to hear of those results. I am very grateful that you have offered us this opportunity. Please know that Eli and all your family will remain in all of our thoughts and prayers. If there is more that we can do to offer you our support, let me know.
Missy J
Missy J
{{{{{HUGS}}}}}}  Thank you for sharing that update here. I'm not able to post on the blog w/o setting up another account so I'm hoping you will read here when you have a chance.

You would think having a "name" to identify at least some of Eli's battle would be giving you comfort. Instead it appears that this particular diagnosis is one filled with even more questions -- questions on how to treat, what to do, what to let Eli do, etc. I am certain that you long in some ways to place him within a bubble to "protect" him from this unseen enemy within... but know too that as his mom you want for him to simply "be five" and enjoy being the delightful little boy he is. I have more that I want to share with you as I was thinking of you over this past weekend while contemplating viewing our Lord's passion from a mother's perspective (Mary's) -- and thought about the cross you and other moms have been struggling under. I know that you would spare your son any suffering if it was at all possible. Instead your cross has included that absolute helplessness. I can say though Angela again how very much I admire you for continuing to be Eli's advocate. While I know at times you may question "why God" an alternative perspective for me is "thank you God" to bless Eli with the gift of you as his mom!

Know that I am continuing to pray for you, Eli, and all your family daily... and yes, have included prayers for wisdom for his doctors and all the medical caregivers he has!

For the stroller -- after you use your friends' Sit-N-Stand you may have a better idea of how well Eli will respond to using it. Since that particular kind is more for "big kids". :) If you approach it that way and explaining that by riding some he would be *helping* you with your little one, that may persuade him a little more too.

Thank you again for the update! Know that you have so many cheerleaders pulling for you all!

Take care,
Missy J
Missy J
Angela,

I read your news and had to walk away for a bit to process. I imagine that you felt more like running. *whew* Definitely not the news that you wanted, hoped for, or even had anywhere on your "list" of choices. I'm so very sorry. I wish that there were some words that I could find to make this somehow "better".  I believe that I've shared before that I'm a "fixer" by nature... and definitely rely on words to convey what I feel -- but there are none that quite capture that. 

I am though also a practical optimist. While indeed I did actually walk away from the computer for a bit, I also took some time for prayer.  It didn't help with understanding.. as there are quite a few things that I really wouldn't mind asking God those "WHY" on.  It did though help to grant me a *sense* of peace amidst this current storm of anxiety and longing from my own "mother's heart" for you and your family.  As a practical optimist, one of the gifts that -- while seemingly joking -- I DO feel blessed with -- is my ability to refocus... even within ultimate challenges... and strive to gain a foothold on a positive plan of action.

My question to you I guess is "what next"?  I am pleased to hear this time is more slow growing... but TOTALLY get your fear/ concern over Eli living "outside of the textbook" cases.  With that in mind and that there seems to be at least a possibility of things changing at a faster and/or slower pace... what is next?  Are the doctors going to run another scan within a few months and evaluate the amount of change in that time to see if it is still on the same track and rate of growth?  What restrictions (if any) did they give you right now?

A somewhat separate thought -- I wanted to take a moment to say thank you. You offer a source of inspiration to so many women throughout the 'net both through here and pg.org. I am personally encouraged by your obvious love for all of your children/family, your sincere faith, and the way you champion and serve as advocate as needed. (((((((((HUGS)))))))) Please let me know if there is any other way that I / we may offer our support. In the meantime, know you remain in our thoughts and prayers.
Diane J
Diane J
Angela, without a doubt, you are one of the most amazing mothers I have the privledge to call my friend.  I am so happy for Eli that he has you.  You two were given to each other for a very special reason.

I am so glad that you listened to your mommy gut and brought everything forward to the doctor.  A momma knows.

much love,
Diane (and Mikey too!)
Missy J
Missy J
{{{{{{{{{{HUGS}}}}}}}}}} Hon, there truly aren't adequate words. The options all are understandably worrisome. We will be praying especially for Eli's "team" to be guided through both their decision making and ultimate care to give the very best possible.

I'm praying especially for you too mama! Please know you that right now while you may be feeling weak, that you have others willing to pray with you... for you... and always by your side -- even those of us that are cross country!

Thank you for updating and for giving us another opportunity to offer our love and support for Eli, you, and your family.
Missy J
Missy J
Angela, I want to go back and reread your entry again tomorrow.  Your full blog link conveyed a beautiful message and one that I want time to think about and yes.. to pray.  Most certainly you have our positive thoughts and prayers for you to not just make the lists (and wow that one was incredibly observant and so important for the doctors!)... but also to continue to be guided along the way to be both the advocate and support he needs.  I know that it is so hard to not be able to take all of these "puzzle pieces" and be able to put them together for that "big picture" but what you are doing is equally valuable as you pull them all into view for those that CAN figure them out.  (((((((HUGS)))))))))  I'm sorry if I'm rambling.  It's late here but most of all I did want you to know that you remain in our thoughts and prayers.  Thank you for the update! 
Missy J
Missy J
Angela, I am so sorry that Eli is going to have to have yet another surgery. We will definitely be praying for him throughout along with you and all your family. I know that this is a frightening time for you all. I truly hope that this enables a path of healing for Eli now. (((((((HUGS)))))) Please keep me posted on when exactly the surgery is scheduled. We are sending you prayers now for peace and strength.
Missy J
Missy J
Angela, I just finished reading through your latest entry in your blog. That is excellent news that after all this time there are answers on what is happening with Eli! Please know you can continue to count on our positive thoughts and prayers for Eli, and for guidance and wisdom for all those in charge of his care. Please do share the link on Pregnancy.org as I know more there would welcome the opportunity to lend their support also!


(((((HUGS)))))


 
Jennifer Shaw
Jennifer Shaw
I will certainly keep your little guy in my prayers. I am sure it is frustrating to have to "catch" a episode. It's kinda like an EEG for seizures. Unless it picks it up in the hour they are monitoring, they may have it but no one will know it.  =(

Praying for a good update on Monday...
Diane J
Diane J
Hi honey--I can't log in to PO again from work, but wanted to let you know that I saw your post from yesterday.  Have you put in a call yet to the doc to see what he has to say about the statement regarding Eli's head?

Man, I sure hate that this is never ending for you guys.

Much love, as always ♥

Diane
Diane J
Diane J
Hi sweetheart!  Either I am just really forgetful or lacking a few cells, but I don't recall knowing you had a CB for Eli!  I know, bad friend I am.

I saw your post on PO and clicked on your link without reading your latest updates.  I'm off now, but Mikey has a CB too,
michealmikeyjohnson.

Much love,

Diane aka SparkleMomma :)