Thursday, March 13, 2008

Still here


My little fighter doesn't think he's ready to take off yet.


He's decided he needed to stick around.


He's still have seizures - more of them now - and he's pretty limp. But he's still here. One of his doctors and his nurse came this afternoon and said that he's not in pain - judging from how he's reacting - and that if we think he's in distress than can come give him some morphine. We don't want to give him anything unecessaryily, so we'll just wait.

I was worried that he'd be dehydrating and starving to death since he no longer is swallowing or sucking. However his doctor and his nurses have explained to us that his not eating is his way of shutting down and showing us that he no longer needs it. His liver is feeding him energy (pretty cool the way they described it) so I can be sure he won't starve. That was my concern... I couldn't deal with that.

He's going gracefully, with the dignity he deserves.


And there's the tooth on the top/right.
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103 comments:

  1. that first picture of the hands is great.

    -Kristin M

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  2. What a precious little man. I know you are getting millions of hugs & kisses. I am still praying for all of you! Our Heavenly Father is with you & He knows what you are feeling & what your wonderful little man is feeling.
    Emily

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  3. Yay! The TOOTH!

    I understand completely how you must feel about Joshua not eating now. It was the same with my grandmother. My dilemma was this: Feed her with the dropper, a liquid diet, and watch her choke for hours (because she'd choke at least once per feeding and it lasted hours), or don't feed her, and watch her starve.

    The Lord took her home while she could still manage a tiny bit and I honestly think it did me more good than her because I couldn't stand the thought of her being hungry.

    I'm glad that Joshua's body has a way of coping. I do know that the digestive system is one of the first to shut down, leaving more resources for the heart, lungs and brain.

    My prayers for you all are still the same.

    Dear Joshua,
    You are so loved and I know you love your family, too. I'm grateful for this modern technology that allowed me to have a small glimpse into your precious life. I thank your mom for introducing you to the world through this blog. You've both been so fortunate to have had each other. I would be so proud to have a son like you.

    As you prepare to return to Heavenly Father, I pray that your body will be relaxed and pain-free and that you ride on the wave of love that surrounds you.

    You and your family have set an example of great love and courage that I hope others will follow. Your body is different than is needed to remain on earth, but your spirit is perfect. It is so perfect, that you are able to return to God's embrace much sooner than the rest of us. You have done what you've come to do. Peace be with you, precious boy.

    Love,
    Kimi

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  4. I cannot find the right words to describe what I want to say. You have an incredible strength that I believe at this point to be superhuman. I will pray for your family and for the peace of your sweet baby boy. I will never forget the courage you have demonstrated and the beautiful story you have shared. Your little man has had an impact on my life that will forever be with me.

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  5. Susie, he is so, so beautiful. What precious memories our Father God is blessing you with. You seem to be holding up so beautifully... I am so proud.

    Adam and I just went grocery shopping, and the minute we walked into the house, he goes "How's the little fella doing?" He gets more and more concerned the longer your posts are between each other. It's so sweet. Your precious, beloved son wriggles his way into everybodies hearts. How wonderful to have on your eternal resume that you were a blessing to thousands and thousands of people by the age of 67 days... and that you'd never even met the greater majority of them. What an ambassodor for Christ he is! For such a little dude, what stature he has in our Lord!

    I'm begining to think that the precious babies that leave earth too soon for us have a special place in heaven, with their own extra special crown of glory. I think Joshua's has rubies in it. (Just a thought that just dropped in, so I had better go an look up rubies now, and see what they meant in biblical times.)

    Be blessed abundantly, beloved mother.

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  6. prayers for peace in the coming hours. You are giving your son the most wonderful gift. I pray that Joshua continues to be at peace and comfortable.
    Cindy

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  7. Look at that tooth. Joshua sure is amazing. I'm so glad to hear that he's not in pain as he prepares to pass.
    May God be with you all. You are all in my prayers.
    God bless.
    Jessi.

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  8. We're still praying here in New York, NY. He is so strong and so brave. He looks content. You must be fantastic parents to him. I am sure he loves you all so much that he is waiting as long as he can. What a wonderful gift. Though I have never met you, I have been reading and I feel blessed to know about your amazing family- especially your perfect son. Be well.

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  9. Sweet little baby Joshua. Thank you for sharing the pictures of your precious little one with us. Perhaps Joshua knew his work wasn't quite finished.

    Praying for your family.

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  10. you are very curageous. I'm thinking of you and your family.

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  11. Praying for you in Alaska. Just found your blog a couple days ago, and stumbled upon it again today and was shocked to read the latest. You are in His grip, and it is obvious.

    In Him,
    ~Leah

    http://www.homeschoolblogger.com/lifelongalaskan/

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  12. He is so beautiful! So thankful that he is not in any pain or distress. I've camped out in the computer room all afternoon and evening, and now it's late and we must go to bed. This is the hard part...we'll see you in the morning. Hugs and kisses to all of you. We love you!

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  13. Hi, I came across your blog today, What an extroadinary story. Joshua is just an amazing little boy. He is so strong and such a little fighter. My thoughts and prayers are with you and your family.

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  14. My prayers are with you and your family at this difficult time. Your baby boy is beautiful.

    Jenne

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  15. Just as the heading of your blog says, Joshua, along with his whole family, is being STRONG AND COURAGEOUS. You are very lucky to have him, and he is very lucky to have you guys. Thank you for sharing him with us. I'm sure you can tell that you have impacted so many others with your testimony and faith. Cherrish these memories forever. May Joshua go from your loving arms, to the loving arms of God in peace.

    Debbie Lionberger
    Illinois, USA

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  16. Praying in Canada, Thanking God for the extra hours you're able to spend with him.
    Tami

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  17. You are an awesome mama!My prayers are with you.

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  18. You are in our prayers, I am so emotional I can't even say more. I don't know you or your family but feel so close. God Bless your lighter fighter IS so courageous!
    Cathy & Annabel

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  19. Thank you for sharing your story. You story is making me a better mother, wife, believer. I couldn't put my baby girl down tonight after she fell asleep. I wanted to hold her tight and I thanked God for her. I also thanked God for Joshua. He is changing the lives of many people right now.
    -A

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  20. Im glad the doctor could put your mind at ease that your little man isnt suffering in any way-that would make it so much worse on top of everything. Again. My prayers are still with you. There are no words to ease the pain of what your going through but God is doing everything he can right now to give Joshua as you said grace and dignity.
    Elisha Canada

    And look at that tooth!!

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  21. What a beautiful family you have. I love the picture of little Joshua holding on to his Mommy's finger. Still praying for you all.
    Heidi in CT.

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  22. Hi, I've been reading your blog for months (got here from Tarah G, I go to EGC) and I just want you to know that I and my family and friends are praying for you guys. Joshua is such a strong and courageous little boy, and he's beautiful, too. Thank you for sharing your story and continuing to update us all here in the blogosphere. May Jesus give you the strength and courage that you need during this time.
    -Bethany in NY

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  23. My tears run down my cheeks for you and your family and my heart has been touched by Joshua for months. I pray that Jesus comforts all of you. Thank you for sharing your family with the world and with me. I know are touched by Joshua. He is the brightest light for God anyone could ask for. Shine little man. We love you!

    xox Nickie (Shaleysmom on babyfit)

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  24. I have no words, just feelings, and tears. I don't know what else to say, except that I know he'll pass in peace, with love, and with dignity, and he has been blessed with an amazing family. May God grant you all the strenght in this time of sorrow. He is so beautiful, so sweet, and he will be missed by a lot of people who never actually "met him". We will think about him, remember him, and he will always live in our hearts. We will celebrate the time and the joys he shared here with you, and you were kind enough to share with us, where he certainly made an impact, and touched people's lives.

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  25. just checking in - you're in our thoughts and prayers as we turn in for the night.

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  26. I am so so blessed by your beautiful words, and especially your beautiful son. I will be praying for your family tonight and thinking about you often. Thank you for sharing your story.

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  27. I absolutely LOVE these pictures of your precious family! A sweet friend of mine sent a link to your blog today and I have checked in several times to see how the time is progressing. I can imagine that this is so difficult, and yet, I am so proud of the way you continue to trust in the Lord for each and every moment.

    Our little Maddox was born on January 23rd with Trisomy 18 and lived just an instant. I know the journey you are facing ahead is a difficult one, but I am so thankful that He has granted you all such wonderful time with Joshua. Oceana looks like a very fun (from the video :)) proud big sister.

    What a beautiful, amazing gift you are holding in your arms! Praise the Lord.

    Many prayers being lifted for you now and in the days and weeks ahead... whatever the Lord may lead.

    Love,
    Kenzie
    http://thestanfieldjourney.blogspot.com

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  28. Matt and Susie -
    My heart aches for you guys so much. I am glad that God is giving you this extra time with your precious boy though. What an amazing little guy he is! Still praying for you!
    --Jenny

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  29. What a beatiful baby boy God has given you. I'm praying for your sweet family.

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  30. Praying for your family. What a beautiful first tooth and you all have such amazingly strong spirits and faith. Certainly passed onto to Joshua three-fold!!! And now I am feeling so blessed by your strength.
    Continued prayers.
    Sarah

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  31. He certainly knows he's loved! He's so keen to stay!
    Thnking of you constantly
    Love Kath and Bob

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  32. God bless you all...I am so thankful that you have this time with beautiful Joshua! What a blessing...

    All God's Continued Blessings.

    Trisha

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  33. Praying for your family. Joshua is beautiful! You are an amazing family...thanks for keeping your blog family updated.

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  34. My thoughts are with you and your family, Susie. Joshua will be with you- now and always. Effie2, a Jan-08-mom

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  35. with his little chubby face, I can tell he's your twin. He's such a gorgeous boy, and he's so lucky to have you as a mother.

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  36. He is so beautiful.
    I have been reading your story for awhile. Thank you for sharing the pictures and your story with the rest of us.
    He is truly an amazing boy and you are an amazing family.

    Congrats on your tooth Joshua!!

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  37. "Do not fear, for I am with you. Be not afraid, for I am your God. I will strengthen you, surely I will help you, surely I will uphold you with my righteous right hand." Isa. 41:10

    These are words I keep coming back to, clinging to their truth for the past, the present and the future. The pain seems so unbearable...it feels like your heart might literally break into pieces. And somehow, Jesus gives hope for tomorrow and the strength to take the next step. May He uphold (I love that word!) your precious family during this difficult time. May He fill you with His peace that goes beyond explanation. Praying for you as I retire to bed for the night...

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  38. I am Marie's sister Minerva.(Marie Douglas) Just wanted to let you know that you are in our Prayers.And through this day my Prayer for your family has been that He continue to be Your Comfort, Tower Of Refuge And Strength, as you couragesly share your precious time with all of us. Know that your family has a family here that is uplifting you in Prayer. All our Love Alvarez family

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  39. I have been keeping up with your blog....I am praying for you girl! The pictures of your little man is priceless! I can't believe he has a tooth already! He is a little fighter! Stay strong and hold on to his little body as long a possible!! Praying.....

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  40. May you be able to say "It is Well with My Soul..." We rejoice with you in these precious hours that God has given you with Joshua. His little cheeks look so chubby and kissable.

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  41. I'm so happy to see he didn't just slip away in the night or while you were out or something. I hate that he has to go, but I'm glad you all are getting a real chance to say good bye. He's such a beautiful little guy! Thank you so much for sharing him with the world.

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  42. I have been reading your journal for a few days now, starting from the start. I just wanted to tell you that you are a beautiful and amazing person. Your family is in my thoughts. Your blog has made me smile at times and even cry. Thank you for touching my life.
    -Amber in Seattle

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  43. I feel very humbled and privileged and touched you are sharing these moments with us. I am thinking of Joshua frequently and praying for you all.

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  44. Matt, Susie, Oceana, & Joshua

    Not sure how I got here, from one blog to another until I arrived at yours. I just wanted to let you know that my prayers are with your family. Your courage and love throughout this journey have been inspiring to me as I've faced much smaller ones. Daily, I've thanked God that you've been allowed just one more day with your sweet boy, and I'm praying for God's loving arms to be around you as you face these last moments with Joshua.

    Rebecca
    (Victoria, British Columbia)

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  45. Look at his tooth. He is so beautiful. All my prayers and love go out to you and your wonderful family. He is such a miracle. God bless you all.

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  46. Thanks for the new pictures and that beautiful tooth too....
    He was on my mind the whole night yesterday and will continue to be there.....

    I'm glad you're getting to hold him for more time.

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  47. Thank you for sharing..you have no idea the impact on people's lives that your family and sweet Joshua have made....Only when you get to have your family together eternally will you have any idea how far you have reached..

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  48. What an amazing little boy you have. How blessed you are to have him, and he to have you.

    I have just found this blog through another friends site. I will be praying for you all.

    Please give Joshua just one little kiss on his gorgeous little face from me? I would be honoured if you could.

    Stay strong for each other. May you feel God's presence among you forever more.

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  49. What a strong little guy. We just happened to read Joshua's verse last night while we read through the Bible and it had me in tears thinking about you and your family.

    we're conitually praying for you.

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  50. I can't articulate what I want to say, so I will just say that my thoughts are with you and your family.

    Never before has a journal of a complete stranger touched me so much.

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  51. I have no words other than to say that your family is amazing.

    Joshua is beautiful and is being a wonderful teacher to thousands of people he doesn't even know. If he teaches just one parent to be thankful for the blessing of their child then he has done a great job...I think he's taught thousands though..and for that..he is incredible.

    YOU are incredible for sharing him with the world.

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  52. I'm so pleased you've had this time with him. He's dying on his own terms, just like he's lived.

    And I LOVE the tooth photo. :) You'll be glad you have it.

    Rebecca

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  53. I have only just stumbled across your blog tonight and I'm so glad I did.

    What a little fighter and such strong soul Joshua is.

    I'm thinking of you all at this time.

    xxx

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  54. your little man is just so precious, know that i am thinking of him and you all tonight ,and have shed many a tear.

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  55. Bless your little fighter and Bless your family too. Thank your for sharing him with us, he is an amazing little man. Sending you all love.

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  56. Guys... you are such an encouragement... we are praying for you during this tough time... but stoked to see how God is your strength and Rock! Praise Him... Robby and tanya Ayoub

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  57. Thank you for sharing your story with us. Joshua has inspired so many people to hold their child a little longer. I have thought about him all night wondering what he is going through and how you are holding up. The strengh you have is astounding and God chose a really wonderful family to bless with his beautiful Joshua. He has impacted so many lives in such a small amount of time. God Bless Joshua and your family.

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  58. praying for increadible powers of strength and .. hmmm... wide awakeness, so you can spend much time with Joshua, even into the night :)

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  59. He truly is an amazing little boy! So sweet, delicate and absolutely perfect in spirit! Been praying and will continue to ask the Lord for strength, peace and comfort for your entire family. Thank you for updating us and sending such lovely pictures.

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  60. What a beautiful boy. His life and his fight has touched me so much. I've been praying a lot for you all, and I will continue to do so.

    Angela in central Ohio

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  61. He just gets more and more beautiful every time I see him :) I just woke up and ran to the computer to see if he is still here. I am so happy that he is! It must be so hard to watch him shut down like that. I cannot even begin to imagine what you are going through. Again, thank you so much for sharing your story with the world. I know there will be a great loss felt when Joshua does pass. God bless

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  62. Matt and Susie,
    Today in my devotional the scripture was Joshua 1:9 - "Have I not commanded you? Be strong and courageous. Do not be terrified, do not be discouraged, for the Lord your God will be with you wherever you go." This was a very fitting reminder of God's everlasting presence and power. I am thankful to know that He is your peace and your faith lies in Him. Joshua has taken you down a new path and God is not finished yet. I love to see your pictures, and miss you guys all the more when I look and remember all the wonderful things God has done. Matt, you are blessed with a wonderful family! Love you!
    Sue G
    PS Love the tooth!

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  63. Susie,

    I know I left a comment last night but just wanted you to know that I have been praying for you throughout the night.

    Yvette Hostetter
    www.tristanasher.blogspot.com

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  64. I looked at these pictures and my first thought was how much Joshua looks like his big sister. What a beauty he is!

    I pray that you can feel God's love wrapped around your family and your precious boy during this time.

    What a blessing Joshua is during his short time on this earth!

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  65. Just letting you know that our family in California is praying for all of you and have been since Susie was pregnant with Joshua! Hope you can feel the love!
    Adam and Aaronne Livingston

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  66. thinking of you and your little guy

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  67. Hello. I was linked to this journal from someone on livejournal. I'm in awe of all of this; your strength, your family's strength and Joshua's strength. You are all Strong and Courageous. My entire family is praying for you and your family. Thank you for being kind enough to share your journey with us.

    Jen in Erie, PA

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  68. Thanks for sharing these moments with us. They are very powerful!

    Praying for your family.

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  69. Still here, keep checking in and praying for your family.

    Love, Dana in Virginia

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  70. What a sweet baby. I cant stop thinking about him and your family.

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  71. I just wanted to say what a inspiration you have been to me and that your son is so lucky to have came down to your family instead of someone who wouldn't have cared what happened to him or didn't take care of him like you have. He is so special to thousands of people in the world and thank you for sharing his journey with all of us...it was way to short but he has changed people all over the world as have your courage and faith...I know you have changed my way of thinking and have given me more faith in God so thank you for that...I will pray HE gives you and your family peace and all your memories stay fresh with you all. and that HE takes your little angel up and gives him peace and serenity...lots of hugs sent your way from the U.P. of michigan... love shannah and family...

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  72. Hi Susie,

    I am sorry to say that I am only just introduced to your situation and wanted to let you know you are all in my prayers, you are very inspiring. I hope he is still with you. I saw your list of experiences Joshua (also the name of Jesus) has had and didn't see baptism on the list, what a beautiful way that would be to end his sojourn in this life to go into the next. It would be a very simple thing that you can do yourself, simply pour a small amount of water on his head and say Joshua, I baptize you in the name of The Father and of The Son and of the Holy Spirit. He will truly then be an apostle of Jesus Christ.

    God's blessings be upon you!

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  73. Susie,

    I am continuing to check several times a day for updates, and was so glad to see more pictures of Joshua this morning. I love the one with all of your hands, that is beautiful.

    Still praying for you and your family, and I am so thankful to God that you all are being such a wonderful testimony to soooo many others. Your blog name is very appropriate.

    Devin in Illinois

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  74. I just found your blog and I'll be praying for you guys. May a peace that passes all understanding guard your hearts and minds as you continue on this journey with Joshua. God has a purpose and a plan for each moment of Joshua's life. What a precious life God created!!!
    Many prayers are with you!

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  75. Still thinking of you and sending all our love. XXX

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  76. Your blog is so appropriately named...your family is so strong and courageous...and it is obvious that you rely on the Lord for that strength and courage. I'm praying for the peace that only He can give to be poured out on all of you.

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  77. Oh Susie. Sending as much love as I can to you Matt and the family. You are heavily on my mind and in my prayers. Love you guys.

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  78. I'm at a complete and utter loss as to what to say other than that I am praying for all of you - praying for comfort and for peace - praying that you feel God's arms around you at this time.

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  79. WHAT A HANDSOME LITTLE GUY! He is so loved within his own home, and worldwide. Keep up the little kisses, gentle hugs... he's precious!

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  80. It is such a small world. After reading back post, I found out you graduated Elim with my sister-in-law Missy (Kirkland) Withey. You all are still all in my prayers.

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  81. I keep checking in for an update on Joshua and remembering the pain of impending loss. He has been loved so well. You guys have given him the life that dignifies a human being. Thank you for being an example of that to the rest of us!

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  82. What a strong little man. I am sure that his will to hang on is a direct reflection of the love he has had from his family and the love he feels for his family. I'm still praying for you...

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  83. checking in today. I was up praying for you in the night. It is obvious your family is in Gods Grips. Take comfort Mommy; Jesus is with you.
    Gods grace never ceases to amaze me. Look how many people Joshua has touched in his wonderful life! Susie you have taught me so much about being a mother, wife, sister and friend. I am expecting my 3rd child and just finding out my 2nd child is disabled with no clear diagnosis. THANK YOU for sharing your heart with the world and you CHILDREN.
    On my Knees,
    Danielle harnsberry
    seattle washington

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  84. What a blessing that he doesn't seem to be in pain. We're still praying for you in Alberta, Canada as you hold, kiss, and love Joshua. Thank you for keeping us updated and for the wonderful pictures. My heart is with you, but more importantly, God has been loving Joshua right there with you this whole time.

    p.s. What a beautiful little tooth! Who would have thought one little tooth could be so special.

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  85. You are so right - gracefully and with dignity. His little face is so beautiful.

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  86. John 9:1-7
    1 As he went along, he saw a man blind from birth. 2 His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?" 3 "Neither this man nor his parents sinned," said Jesus, "but this happened so that the works of God might be displayed in him. 4 As long as it is day, we must do the works of him who sent me. Night is coming, when no one can work. 5 While I am in the world, I am the light of the world."

    Your sweet Joshua has certainly been a witness to so many. Your faith as a family and your continuos faith, trust, and hope in God is awesome! May your family continue to be blessed!

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  87. Holding you up in prayer! Thanking God that he is not in any pain and you are able to have this extra time with him. Sweet little Joshua has touched so many hearts in such a short time.

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  88. Still praying for you in Salem, Oregon. Each pict. is a treasure to see. Julie from Salem

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  89. Your blog was emailed to me this morning at 8:41, I have been sitting at my computer reading your story from the beginning. I have been in tears more times today than in the past 6 months combined. I can't imagine what you are feeling. I am a mother of an 11 year old girl and stepmother to a 10 and 6 year old girls. I wish I could just give you and your brave little lamb a hug. God is so evident in your life. Your are refreshingly honest. I pray that God will grant you unspeakable peace, grace and mercy in the moments ahead. I pray that He fills you with Himself because that is the only strength big enough to handle what you going through. I pray for your family, that you cling to eachother and Jesus. Your brave little lamb has a place in our Fathers arms waiting for him. There are no right words for this moment, I just want to tell you I am thinking about you and praying for you all.

    Love a family member in Christ,

    Farrah
    Waterford, CT

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  90. I see his mamma and sister in him!
    I am thining of you constantly, and praying for your peace that passes all understanding!

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  91. Praying for you and your sweet baby boy.

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  92. Susie and family,

    I've been reading through the comments that people have left you and it blows me away that you have so many people praying for you from all around the world, and so many of these people (myself included) have never met you. In just 67 (or so) days, Joshua has made an impact across the world. He has touched the hearts of hundreds, even thousands, of people. How powerful. Thank you for sharing your journey with us so that we could have the honor of being touched by your beautiful boy.

    Much love and prayers,
    Jen in Massachusetts

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  93. Susie,
    I should have commented before now, but was never sure what to say. I'm even less sure now, but I want to thank you for sharing your life and precious Joshua with all of us. Tears are falling down my cheeks, but I cannot help but think what a joy it is that Joshua has spent his whole, short, miraculous life surrounded by such abundant love. Know that you and your family are in my heart and prayers today.
    Danielle

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  94. I saw an undate about Joshua on Dahvede blog.

    I am truly sorry for your loss. I am sure Joshua is happy and playing up in heaven with Jesus right now. He will always be watching over his mommy, daddy, and his big sister.

    Kendra...Oh, USA

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  95. According to Havalah's boyfriend's blog dahvede.blogspot.com Joshua has passed away. Check his page for details.

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  96. You are all constantly in my thoughts and prayers. So many times throughout the past few days, the most random things make me think of sweet Joshua and to pray for all of you. He is a miracle and such a blessing to me. Thank you for sharing him with me.

    Michelle

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  97. I just discovered your blog today and I am so touched by your story. I am praying for you.

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  98. Praying for you and your family. God blessed you with such a precious child.

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  99. Thank you for these pictures, they are just beautiful. My thoughts, prayers and tears are with you all at this diffacult time. Dianne

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  100. He truly is a perfect gift from God!

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