Thursday, October 27, 2011

October 27, 2011

It has been a long couple of weeks, but the hope, love, and support that everyone has sent me is hopefully helping. The doctors have put me back on steriods, and unfortunatly, this will be a longterm journey. Nobody knows the longterm effects of this, and that scares mom and dad a lot. Hopefully, I can get down to a low enough dose, and then grow enough to be able to breath without the steroids. It took three days on a high steroid dose before some help was seen. My oxygen is now down around 40%, and hopefully Monday I will be put back onto the conventional ventilator. I have gained some weight, and now weight 7 and a half pounds! Continue to send your love... I will be needing it as my journey is still far from over. Lots of love to everyone!


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7 comments:

  1. Once A MotherOctober 27, 2011 at 6:09 PM

    Wow.7 and a half pounds!!!! Amazing. Take it hour by hour Amanda. Day by day. Yes it is so scary to think about the long term affects of this or that, but these are the things necessary to get Alexander where he needs to go, and just know that the decisions you are making for him are the right ones and he is so lucky to have parents who love him so much, and to be receiving such wonderful care. I know how scary that is though. Alexander is an amazing little warrior and we are all so proud of how far he has come, and know he will continue doing amazing things and get bigger and stronger. Keeping you all in my prayers constantly. xoxo Praying he gets to come home sooner than later. I know you all much be exhausted.

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  2. Once A MotherOctober 27, 2011 at 6:10 PM

    *must

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  3. LindaOctober 28, 2011 at 5:17 AM

    So happy that you are doing better. I will continue to pray for you precious Alexander. Just remember God Is Good. Take care precious baby boy!!!! Love and Peace, Nana to an angel (Leah) and Tabitha.

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  4. LiatOctober 28, 2011 at 6:50 AM

    Yeah for rallying Alexander. You are such a big boy now. Keep working in the breathing. We continue to pray to less steroids, more independent breathing and strength.

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  5. NajeebaOctober 29, 2011 at 8:16 AM

    Happy to know that you are doing better. Praying for you..

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  6. LiatNovember 3, 2011 at 8:16 AM

    Still praying for you. Hope the breathing is getting easier and that you have been able to lower the steroids.

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  7. LoriNovember 4, 2011 at 8:46 PM

    I just want you to know that some random woman whose heart is breaking for all you are going through right now is praying, praying, praying that you are going to be looking back at this time a year from now (or 104 years from now!) and saying, "Whew...that was so tough...but we made it. We made it!" I only know a tiny, tiny bit of NICU life, but that it ended with a funeral is enough for me to just be begging God for a miracle for you and your family...that sweet little boy is just beautiful and amazing.

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