This baby girl...
This baby girl that I have been entrusted with has brought me smile after smile today. This baby girl is the most beautiful child when she smiles. This baby girl has a twinkle in her eye as she busts into a grin so large it covers her entire face. This baby girl has been so silly and so precious as we played together today. This baby girl has reached up her tiny arms to me each time I approached her crib. This baby girl awoke with a smile from each and every nap she has taken today. This baby girl is wonderful. This baby girl has called her Daddy 3 times today just to listen to his voice. This baby girl has stolen my heart as she quietly dreamed of happy things while she slept. This baby girl has blessed the deepest parts of me.
Today was not only filled with lots of play, but it also included lots of work. Ash had to work very hard with her therapist today and it was painful. This was her first time being strapped into the pediatric stander. It looks scary. It is scary. She cried from the discomfort and I wanted to cry along with her. I hated to see her struggle so much, but it is something that must be done. She reached for me the entire time and cried "Mommm" over and over again hoping that I would rescue her. I make her work hard because I love her, but it breaks my heart. If my Ashley has any chance at ever standing or walking we must make her endure the therapy and push through the pain. It is very frightening to have her place her body weight on her feet and legs. Her bones are very fragile and brittle from the extended use of TPN and strong doses of steroids that she lives on. One of our little transplant friends has actually fractured his leg and he doesn't even crawl or walk yet. We must take it very slow and it will take many, many painful days to strengthen her bones and muscles so that she might one day be able to walk. Today was difficult to watch. It was a huge dose of reality for this mommy. I saw what a very long way we have to go as we slowly recover from all that she has been through. Just 5minutes at a time for now. It may take us years to get there, but I believe if He wills it that she will get eventually get there. The amazing thing about this baby girl is that the minute she was released and I picked her up the smile came across her face and she began to pat me as though to tell me that she forgave me and all would be fine. I love this baby girl.
Tomorrow we face the G-J procedure. It is scheduled for 1:00, but they told me they may take her down as early as 11:00 or 12:00. Be prepared is what I was told. I really don't know how long to expect her to be gone. She has had it done 4 previous times and they have ranged from 45 minutes to 4 and 1/2 hours. I pray all goes well and that she is returned to me in an hour. Their is a possibility that she may return on the ventilator, but she has been breathing well on her own without oxygen for more than a week now. Hopefully they will be able to remove the breathing tube while she is in recovery.
Tonight will be a long night as I anticipate tomorrow's procedure. Maybe this will be the time that all goes well and she is able to eat. I pray that for this baby girls sake that it will work. I am going to go lay down and talk to the one who gave me this baby girl. I am going to thank Him for His goodness to me. I am going to entrust this baby girl into His care. I am going to thank Him for those He is sending to this baby girls story and thank Him that they care enough to pray for her. This baby girl loves you all and so does her mommy. Take care and Good night. Trish
posted by Ashley @ 10:11 PM
12 Comments:
Trish, I'm praying for tomorrow's procedure:
1. That all goes well,
2. That no vent is needed,
3. That it is the beginning of a solution for EATING!,
4. and that you make it through, too:)
I wish I could come and keep you company, or at least bring you a goodie basket to cheer you up, but since that would be a loooong commute, I'll pray for you instead. :)
I hope your next update is one filled with joy and success!!
I know all too well about the standing frame. Josh isn't fond of his either. Although, he will tolerate it better now & we have to tell him it is a car. (strange but it does have wheels) LOL. He likes it much better thinking it is a car....although after ten to twenty minutes (varies)....he changes his mind about the enjoyment of the contraption....that is not really all that friendly. Both of his standers have a tray on them...next time try to put Blues clues on & see if that helps....(dunno) Anything to take their mind off of it....(= Anyway, praying for you guys tomorrow. For your peace...for a shorter procedure versus the four & a half hour one. For God to lead every step during the procedure.. .... Praying..... Hopeful for good results....
We will be praying for tommorow's procedure ~ and we'll check on you throughout the day.
You talked about the long road ahead involving therapy and I just wanted to assure you that when Ash comes home to Longview, whenever God wills for that time to be, there is a wonderful Physical therapist named Debbie Pace who worked with Morgan. I've actually been sad that our physical therapy stopped. She is AMAZING and was such a joy and a blessing to be around! She's with ECI and lives in White Oak.
You're probably thinking, "I'll never remember that." I just wanted to put that bug in your ear :O). Sleep well tonight.
Lord, I just thank You for the playful time that baby Ashley and Trish enjoyed today. We praise you for who You are. Thank you for the beautiful blessings they shared through the grins and the smiles and even through the struggles of learning to stand. We know that she has to be able to stand before she can walk and walk before she can run and play with Blake and Allie. I pray for strong bones and protection against falls and fractures. Give her little body strength to endure all her battles.
May the procedure tomorrow be successful. Father, guide the surgeon's hands and may there be no surprises or complications.
I pray that both girls are having a good night, resting in You.
Thank you for Your faithfulness to us. Thank you for Your love for us. Thank you for Jesus~~~I pray these things in His precious name...Amen
Praying for skilled surgeons and a successful surgery for Miss Ashley. May she be strong and safe in hte Father's arms.
In Jesus' name!!!
you will both be in my thoughts and prayers today! Wrap up in that prayer shawl and feel the love...
Trish, Ashley was a great sermon for us today - having to push through the pain to achieve the goal. Praying for your little one. oxoox
Just letting you know that I'm praying.
Lauren at mychoice-hislife.
Trish, I am praying that today's surgery will go quickly, smoothly and that no vent would be necessary. I will also be praying for you. Goodbyes can be so hard. I cannot wait to hear how God will bless you and Ashley today.
woke up thinking of Ashley and the family today. Praying!
Praying for a PERFECT procedure today. Praying that all goes well and she will begin to eat and grow strong. Praying for Peace to come to you today as well. I will be anxiously waiting to read the updated journal. Good luck and we love you.
Can't wait to hear the outcome of today's surgery. May God put His arms around you as you wait.........
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