Today has been a hard day on so many levels. Baylee woke up hot & tremoring again. I gave her some childrens motrin since that always seems to help. Whenever Baylee is awake she is constantly tremoring (her right arm & hand.) She is so inconsistent from 1day to the next.
Tracy called 2 check in & also got some refills 4 medicines ordered. There hasnt been much change since Sunday except that she stayed awake most of that day, even with the medicines I had given her. She still sleeps quite a bit but that day she was determined 2stay up & not miss a thing. She was tracking pretty well w/her eyes & even offered up her lips for some kisses.
I also received a call from the pharmacy that delivers all her feeding supplies & formula. I had 2tell her Baylee didnt need any more. She asked me if it was just this week & I said No, not ever. Not exactly what I wanted 2say but thats what came out. She knows Baylee is sick but I dont think she was ready 4 my response. Supplies & formula r no longer being sent however I did ask her 2keep Baylee's acct open just in case she needs something, mainly extension tubes or mic-key buttons. I am 2call her when Id like it closed & hav everything picked up...the IV pole, kangaroo pump, extra formula, feeding bags, extension sets, syringes, and all the rest of the extra stuff.
Going back to the day I said she wasnt peeing, well of course after I posted that she peed. Very concentrated from being somewhat dehydrated. Im only changing her 1x/day & its very little.
I finished reading the book 2her yesterday. (If u were interested in reading it, Amazon sells it.) So today I started reading her this one. Our Pastor's wife brought it over 4us 2borrow.
Praying for your family's continued strength...big hugs from CA.
Posted by: Tiffany Johnson | December 29, 2009 at 05:22 PM
Glad to hear you were able to share kisses and read with Baylee. I continue to keep you all in my daily prayers!
Posted by: Lisa Risser | December 29, 2009 at 05:23 PM
Baylee is such a strong little girl! She amazes me. What a blessing for me to have been able to meet her in real life!
I think of you all so often and of course keep you in my prayers.
Thanks for the updates.
HUGS!!!
Posted by: Dana | December 29, 2009 at 06:00 PM
Hi Sonda,
You probably don't remember me from Self-Addressed and that is okay. I recently found out via your "Cupcards To Go" about Baylee. I have been checking each and every day since finding out. I just could not let anymore time go by without telling you that you are in my thoughts and prayers.
I don't know what else I can say but that, Sonda. You and your family are in my heart.
Posted by: Glee | December 29, 2009 at 06:17 PM
just heard of your story. please know that you are in my prayers. big hugs for you.
Posted by: jennifer mcguire | December 29, 2009 at 07:04 PM
Sonda,
You, Duane and Baylee are all in my prayers constantly. You are the most strong, amazing woman I've ever known. Huge {hugs}.
Amy
Posted by: Amy Gallegos | December 29, 2009 at 07:44 PM
Hugs to you, Duane and Baylee. You are such a strong family. That book is a beautiful way to celebrate Christmas with Baylee. Take care.
Posted by: Jennifer Nenni | December 29, 2009 at 08:11 PM
Such a wonderful day to share awake time and kisses with Baylee. Keeping you all in my thoughts and prayers.
Posted by: Melanie J | December 29, 2009 at 08:27 PM
Sonda and Duane - keep on keeping on - doing what you are doing. This time is so very hard I know and my thoughts and prayers are with you. Your love for Baylee shows so strongly in your posts and I know that Baylee is feeling that love also.
Posted by: paula | December 29, 2009 at 08:37 PM
I'm glad you have had a little awake time with her. I cannot imagine how hard this must be and how you get through each day. Sending up prayers for your family.
Posted by: MichelleG | December 30, 2009 at 04:03 AM
Sonda, im sure you dont remember me from Tomorrows Memories Design Team but I heard about your daughter and wanted to see how she was doing. This time must be the most difficult a mother can endure..please know your family is in my thoughts and prayers. Baylee is also an amazing little girl. You are both blessed to have eachother.
Posted by: Theresa N | December 30, 2009 at 06:00 AM
......My heart is just breaking for you.....you are all in my prayers....I think about you all the time.....hugs to you....
Posted by: Michele | December 30, 2009 at 10:41 AM
Sonda...you are so strong. I have been thinking of you guys and checking in, hoping for good news. I am just so sad, but also hopeful. HUGS to you and your sweet Baylee!
Posted by: noel | December 30, 2009 at 11:14 AM
Sonda, I just wanted you to know that I am thinking of you and D and sweet Baylee.. Sending comfort and prayers your way.
Posted by: Lisa spiegel | December 30, 2009 at 01:44 PM
Just wanted to let you know that I'm thinking of you all.
HUGS!
Posted by: Dana | December 31, 2009 at 06:59 AM
sending long distance hugs and prayers:) Thinking of you all everyday...
Posted by: Trisha | December 31, 2009 at 03:46 PM
You're on my heart right now.....praying and sending hugs to you. xo
Posted by: Katie McLaren | December 31, 2009 at 09:13 PM