Monday. Monday. Monday.

I'm sitting here at the Children's House writing this morning for two reasons. One, I don't want Rambo to hear. Two, I know once I get over to the hospital I won't get the chance because I'll be busy playing. 


As it stands now, we will be coming home tomorrow. Home!! Theodore has been off the vent since Sunday morning and we have been slowly weaning his oxygen down. This morning he is at baseline and doing well. :)


The PICU has been gracious enough to let us stay 24 more hours so we can avoid going to the dreaded "floor" as it's called. Considering this isn't Rambo's first trip here and no doubt it won't be his last, they've come to know us quite well. I'm thankful they listened to us and are helping us out. Thank you!!!!


For accuracy sake, I must correct what I said a few posts ago about no longer having an IMC. They apparently do have beds that are IMC status. This is only what I've heard. I haven't experienced it yet, and hope not to have to for a loooooong time. Of course, they tell me this as they crunch up their noses and shake their heads. That's not comforting. They are still private rooms so who knows if you'll be able to find your nurse, but I can't say yet. I'm sure we'll get to experience that first hand at some point. I'll be sure to give you my opinion then. 


I'm gonna grab some breakfast and head over to little man. Hopefully this is our last night here! 

Comments

  1. Blessings on you, your son and your family.
    Namaste.

    ReplyDelete
  2. You and your family are in my thoughts and prayers <3

    ReplyDelete
  3. Much love to you and your little man. Praying you and your family have lots of sweet time at home together.

    ReplyDelete
  4. You and your family are in my thoughts. Please give your sweet "Rambo" a big hug from me. Blessyou all.

    Love Bomb Member

    ReplyDelete
  5. Rambo is truly undeniably adorable!
    Much love and blessings to you and your family,
    You guys are in my prayers <3

    ReplyDelete
  6. A perfect name for a STRONG little soldier. I'm praying for his healing and for the strength of your family in Yahushua (Jesus) name!

    ReplyDelete
  7. Rambo is lucky to have such a committed, loving mom. I hope you'll be able to go home and enjoy some time with the whole family very soon.

    ReplyDelete
  8. He is so sweet! You are so strong! What a beautiful story! So much love and light to you and your family! My god you are inspiring!!

    ReplyDelete
  9. you are all in my thoughts <3 love and light xx

    ReplyDelete
  10. Sending love to you and your beautiful family. What a lucky boy Rambo is to have such a fierce warrior mama on his side.

    ReplyDelete
  11. LOVE BOMBING you from Oklahoma! Rambo is such an adroable kid and he has a wonderful family. So many prayers and love heading your way from this internet stranger :) XOXO

    ReplyDelete
  12. Speaking from experience, there is just nothing like having a sick baby in the hospital long term. It is taxing on your body, your soul and your psyche. I am praying for continued healing for that precious angel God has blessed you with.

    Hugs from south Alabama,

    ReplyDelete
  13. I will keep you and your family in my thoughts and prayers. Stay strong for Rambo so he can continue his fight. Best wishes, take care.

    ReplyDelete
  14. Sending Rambo, you and the rest of your family lots of love and prayers.

    -Stacy

    ReplyDelete
  15. Rambo and your family are in my thoughts and prayers during this time. Stay strong and keep your head up! There is a lot of love coming your way today and everyday!!

    ReplyDelete
  16. Keep strong guys, you can get through this, good luck xxx

    ReplyDelete
  17. Amanda please know that you, Rambo and the rest of your family are in my thoughts and in my heart. I'm sending you a love bomb from portland oregon and am putting out much loving and healing energy for you.

    xx
    jenn

    ReplyDelete
  18. Thinking of you and your family. Sending much love.x

    ReplyDelete
  19. What a little fighter! And so adorable. I love watching the videos you've posted. I hope that all goes well as you make this transition back to home. Sending prayers and hugs from Pennsylvania!
    -Katherine

    ReplyDelete
  20. Hugs and a big Love Bomb to you and your adorable little boy from New Jersey. I admire your strength and positive attitude when it comes to some seemingly insurmountable issues with your little man. Keep loving and hugging on him, it makes a world of difference! <3 You are in my thoughts and prayers!

    ReplyDelete
  21. Glad to hear you will be heading home. Stay strong for that adorable little guy!

    ReplyDelete
  22. Wishing you all the absolute best. Thinking of Rambo and hoping he makes a wonderful recovery and you spend much more time at home. XO!

    ReplyDelete
  23. Thrilled to hear the good news! Enjoy your time together at home and stay strong. Sending all the best wishes to your whole family.

    ReplyDelete
  24. (((hugs))) to you for all you do for Rambo. and, (((hugs))) to the rest of your family for making sure you have the resources necessary to be that support for him!

    wishing Rambo a speedy and thorough recovery...even if that requires a miracle,
    Lori Luza
    Austin, Texas

    ReplyDelete
  25. Love and prayers being sent your way~ debj, 29gifts

    ReplyDelete
  26. Love and light shining on you and Rambo and your family as you navigate this journey. So much love, so many lessons and so much dedication and patience. I am honoured that you share it with us, that you share Rambo with us, and allow us to be witness to miracles. <3<3

    ReplyDelete
  27. Sending you and Rambo prayers. God bless you.

    ReplyDelete
  28. I'm praying for you and your family!!!!

    ReplyDelete
  29. I am sending love and prayers your way that you get to stay home with your adorable little man.

    ReplyDelete
  30. Rambo is so lucky to have such a loving family! So glad that he's going home and hope you aren't visiting a hospital again for a long long time. Sending lots of prayers your way!

    ReplyDelete
  31. Much love coming your way. What a sweet little thing he is!
    Love Bomb member

    ReplyDelete
  32. Praying for strength for you and your family and health for your little guy. Count your blessings and always look for the good in hard situations, that always helps me when life is an uphill battle.

    ReplyDelete
  33. lots of love & prayers coming your way today!!! You are such a strong, beautiful woman & I praise God for the strength he has given you to walk this tough journey. You are an inspiration to so many! xo! Praying for healthier days ahead!

    **dropping a love bomb**

    ReplyDelete
  34. Love, hugs and best wishes for little rambo and your whole family.

    ReplyDelete
  35. Sending lots of love to you and little Rambo! He's living up to his name, such a trooper! xo

    ReplyDelete
  36. Prayers and best wishes for healing, peace, love and patience for Rambo and your entire family!! WHAT a precious little boy and what an awesome name for such a fighter!! :-) God bless you!

    - Jonathan

    ReplyDelete
  37. Thinking good thoughts for you and your family and wishing Rambo the strength to get through these early life battles.
    *Love bomber from California*

    ReplyDelete
  38. Rambo is an adorable little boy, and I wish him, you, and the rest of his loving family the very very best. Things are lookin' up and I pray they'll stay that way.

    Go Rambo!

    -proud love bomber

    ReplyDelete
  39. Remember that you are doing the best you can with all of your heart, you are amazing!!!

    ReplyDelete
  40. I agree with the diagnosis: Rambo is definitely Undeniably Adorable! Keep fighting with him. I hope you can enjoy some time at home with your family.

    ReplyDelete
  41. I just want to send my best wishes to your family and espcially Rambo! Stay strong keep fighting.
    Djimith

    ReplyDelete
  42. Sending you and your family the best of wishes. I pray Rambo can spend longer uninterrupted periods of time at home with his loved ones. So young, so strong, and so inspiring already!

    Love Bomb from London, UK

    ReplyDelete
  43. Prayers for the health of your son.... and much love from us here in Indiana.
    XOXOXO,
    Heidi and Lydia

    ReplyDelete
  44. Thinking of you and sending love and hugs :)

    ReplyDelete
  45. My heart aches for your family. I am so glad you are both home. I am praying his lungs will clear... and stay clear.

    ReplyDelete
  46. I will be praying for your family and sending loads of love!

    ReplyDelete
  47. Thinking of you and your family. Keep fighting Rambo!!!

    ReplyDelete
  48. Sending you lots of love and light, and keeping you all in my prayers.
    Much love and many, many heartfelt hugs and blessings! ❤

    ReplyDelete
  49. Best wishes for a happy and healthy future!

    ReplyDelete
  50. Sending you many prayers, loving thoughts and smile - what an adorable little man :D *Love Bomb*

    ReplyDelete
  51. My prayers are with you and your family!!!

    ReplyDelete
  52. It sounds like you've been through quite a lot with your beautiful little guy. I can't imagine how difficult it all must be, and wish you all strength and peace. I know you'll all enjoy being home!

    ReplyDelete
  53. Enjoy your time with your son. May you both have a safe and pleasant trip home, where your family can surround each other with all of the love and support that you all need.

    ReplyDelete
  54. I hope you and Rambo get to go home soon. My thoughts are with you and your family.

    ReplyDelete
  55. Just to let you know that I am thinking about you all and hope that things get easier in the future. Rambo looks like such a lovely little boy. Love to your family.

    ReplyDelete
  56. May you continue to have strength and courage as you continue on this journey. Hope you and the little guy have a great time together.

    ReplyDelete
  57. God bless your family. May you be carried and blessed through this journey. You are not alone and I am praying for you. Your boy is beautiful and I am praying for a healthy and happy future for you all.

    God Bless,
    Heidi

    ReplyDelete
  58. Undeniably adorable indeed! Know that so many are sending prayers and positive energy and to you, your family, and most especially little man Rambo.

    ReplyDelete
  59. Hang in there momma! Though it's hard, your strength wiil prevail and all will be well! Love luck and aliveness to you and yours!

    ReplyDelete
  60. what you're doing for his little life is astounding. You will be a better and stronger person for having known Rambo, whatever happens. I wish you love, strength and happiness for you and your family.

    ReplyDelete
  61. Your family is amazing and beautiful. Sending many good thoughts and prayers!<3

    ReplyDelete
  62. May every breath bring healing, peace, and love to your beautiful family.

    ReplyDelete
  63. Sending you prayers for peace, calm, rest. Praying for little Rambo's health and loving care. Love bombing you from New York.

    ReplyDelete
  64. Sending you prayers for peace, calm, rest. Praying for little Rambo's health and loving care. Love bombing you from New York.

    ReplyDelete
  65. Amanda, you have been such an encouragement to so many! You and Rambo are such fighters! Sending lots of love to your and Rambo, i mean who couldn't?

    Prayers to you and Lil' man!

    Lots of love,

    Anonymous :)

    ReplyDelete
  66. I wish you a lot of luck on your return home. You areca great mom and Rambo is really lucky to have you. You all will be in my daily prayers. Receive lots of love from a love bomber in Mexico.

    ReplyDelete
  67. Sending good wishes to Rambo and family. What a beautiful, brave little man he is!

    ReplyDelete
  68. I am praying for you and your family.

    ReplyDelete
  69. I'll be thinking of you and your family!

    ReplyDelete
  70. I don't know the specifics of what you and your family are going through, but you are all in my thoughts and prayers! Don't lose hope - things will get better!

    ReplyDelete
  71. Sending so much love and light to you and your family and your amazing little boy!

    ReplyDelete
  72. Love and encouragement for your family. Wishing a lifetime of happiness for that adorable Rambo!

    ReplyDelete
  73. Sending you strength, love, and hugs!

    ReplyDelete
  74. Undeniably cute is right! Hopefully the transition to the floor is a good one. I know it can be scary. I was a PICU nurse and a floor nurse and have to admit I liked PICU better as well. :-P I have an undeniably cute special needs kid as well - very different from yours but as a quirky 5 year old she is heart breaker and stealer and man are we proud to call her ours! There are definitely challenges that come along with it but I wouldn't trade one minute of our 2 years with her special needs (which came along when she turned 3) and consider it one of God's greatest blessings to me that He considered me worthy of being her mother.

    ReplyDelete
  75. Lots of love to you and brave little Rambo and your family, I will be thinking of you all xxx

    ReplyDelete
  76. Sending lots of love to you and your courageous little man from halfway around the world!

    You have the cutest little boy ever. And the spirit that you have .. it's amazing. Truly what one would call courage under fire.

    May the Lord continue to bless and be with you and your family even in this time. Keep rocking! :)

    ReplyDelete
  77. I hope you guys find peace in these difficult times <3 Sending lots of well wishes to you, your son, and your family.

    Love and hugs,
    Jess

    ReplyDelete
  78. Love and prayers from Hershey, PA! God is in control!

    ReplyDelete
  79. My thoughts & prayers are with you & your family!

    ReplyDelete
  80. Your strength and openness is so powerful. Stay strong and know that so many people are thinking about you, your son, and the rest of your family.

    ReplyDelete
  81. Keeping you and your sweet baby in my thoughts and prayers!

    ReplyDelete
  82. dear rambo, your smile in some of the photos here is just awesome :) sending hugs and energy to you and your family. go rambo!! you all are in our thoughts. love from montreal, gen

    ReplyDelete
  83. Rambo is adorable. I love that you chose that as his middle name. Though I'm a stranger, your whole family is in my thoughts and I hope sincerely for a speedy recovery for the little guy!

    ReplyDelete
  84. Stay strong! Your little guy is a fighter and he's so precious and beautiful.

    ReplyDelete
  85. Love, light and strength to you, little Rambo and your family.

    ReplyDelete
  86. Your positive attitude is awesome! It's obvious Rambo posseses your strength as he has fought this long, he is so adorable and I can't wait until he gets older to tell his story. You serve as an example to me as you turn to God and His sovereignty, thank you for that. All the best to you and your family!

    ReplyDelete
  87. Hey guys, just wanted to send some love your way. Stay strong :)

    ReplyDelete
  88. Your story and love for your son is inspiring. I'm sending you lots of strength and support from the west coast.

    ReplyDelete
  89. Sending lots of love & prayers for Rambo, you, and all of your family.
    Xoxo,
    Farrah
    LoveBomb

    ReplyDelete
  90. Rambo is so adorable! I will keep your whole family in my prayers. Hope you get to enjoy plenty of quality family time together.I admire your strength!
    Love Angie xxx

    ReplyDelete
  91. Thank you all! What a wonderful surprise!! We did get to go home, unfortunately we had to return this evening. Thanks for all the encouragement!!

    ReplyDelete
  92. Thoughts and prayers to you and your family. Stay Strong. - Megan

    ReplyDelete
  93. How wonderful it is to see a family handling so beautifully something that would bring most people down. You are a marvelous bunch of people. Your blog is an inspiration to other parents of chronically ill children and to many others. May you be greatly blessed. I think you already have--God sent you an angel.

    ReplyDelete
  94. Sending love and hugs your way. Hang in there!

    ReplyDelete
  95. Sending love and prayers for your beautiful family from across the pond in the UK. I pray that things only get better from here xx

    Hannah *Love Bomb*

    ReplyDelete
  96. Those cheeks! Rambo is such an adorable little boy, and even braver than he is cute. I wish him, you, and all your family nothing but the best.

    ReplyDelete
  97. Indeed, Rambo is a special little guy and your quote of Psalms 139:14 says it well. Not easy for a family, especially the Mom. But Phili.4:13 also says 'I CAN DO all things through Christ who strengthens me'. Blessings to you.

    ReplyDelete
  98. Aww. He's the cutest! I have a brother with CP, and it can be very difficult and tiring taking care of him sometimes, but he has the best sense of humor and his simplicity of life can teach us so much. He has such a sense of faith, trust, and love. I hope that you can always see the great qualities, even when you get really stressed out and tired. Keep up the amazing work you're doing with your son. Good luck!

    #dropALoveBomb

    ReplyDelete
  99. Blessings and love to you and your adorable son Rambo. xxx

    ReplyDelete
  100. I will be praying for healing and continued steadfast courage as Rambo and your family bravely face each day. God is both our strength and refuge. Thank you for sharing your story. xo

    ReplyDelete
  101. Sarah - we had a dear friend of ours recently go through a difficult time with their baby girl. One of the things their friends did was to come together and create a team of people who brought by food. There was also someone always gently massaging and talking softly and lovingly to the baby.

    I hope that you find time to rest and regenerate yourself. Please don't hesitate to ask your family and friends for assistance.

    Blessing to you and your family.

    ReplyDelete
  102. God bless you for being strong and hanging in there for your little Rambo. Although it's not easy, you are showing Rambo a mother's love. A love like that brings miracles and aids in recovery. I wish you peace of mind during these times. You are both wonderful. Much love!

    ReplyDelete
  103. You are continually in my prayers! Keep your faith and hope in God and He will supy you with the strength you need to get through the day! Remember, take one day at a time... Baby steps :)

    ReplyDelete
  104. Sending you and your family love from a stranger today (:

    ReplyDelete
  105. You guys have such an inspirational story! I wish your family amazing blessings. Stay positive and know that you are loved!

    ReplyDelete
  106. Praying for strength and peace to be with you and your family! God Bless<3

    ReplyDelete
  107. Sending much love to you and your family <3

    ReplyDelete
  108. Know that you are loved and protected. The whole Universe is there to protect you, love you, and give you strength. It will all be alright.

    ReplyDelete

Post a Comment