Ellie was given a bear by her beloved Ms. Kelly yesterday and Ms. Kelly's mommy. It sings "Jesus Loves Me"....and that's all we've heard since she got it. At 4:30 this morning I had to threaten her that I was going to take it away if she didn't stop pushing the button. However the song is completely appropriate for life at the moment and the bear couldn't have shown up at a more appropriate time.
Alright now that we are moved and in our new room, lets continue....to be honest I'm not sure I'm liking this move...but then again I'm no good with change. Yesterday was exciting for Ellie, she took another stroll down the hallway with much better balance today.
While you are so proud of her for what she's accomplishing, its hard to think that a few weeks ago she was running around my house, without a problem, closing every door she could find open. Its hard to understand what this little girl has been through, even for me and I'm with her everyday. You forget she's had two brain surgeries in a matter of two days. Her smile has become so bright and her words are back to constant, while she's laying down, but being upright is still very hard for her. Its so hard as a parent to watch, while you are so proud and everyone tells you how well she's doing, your heart still breaks for her. But still "Jesus Loves Me/Her"
*Did I ever mention that we sang "Jingle Bells" the whole way to surgery last week, because Ellie was scared and that's her favorite song...that's why I will dearly miss the PICU ladies*
Ellie is officially unhooked from her drain, and now attached to a monitor to measure the pressure in her brain. She did well enough last night that they allowed us to move out of PICU. Dr. Jane Jr. says she did great, but he still wants two more days of monitoring and another MRI before he will take the drain out of her head. While you wonder how you can handle two more days of hooked to this machine, I can't complain, at least we will know if everything is working the way it should.
Last night around 3 am Ellie came to life. We played, talked, giggled, sang you name it. She has had a very hard time moving her right arm, it had a "board" under it for lack of a better word, that pretty much prevented her from using it. That got removed and now as Ellie says "I found my hand!" Well last night she figured out how to use that hand, holding her own cup (again another one of those things she's been able to do forever). The speech people had pulled the stopper out of the cup so that she didn't have to suck on the cup, which caused her pain, I had to add it back in last night (well 3:30 this morning) because she was choking herself from sucking on the cup...a great thing! She had one other huge milestone that only mommies could appreciate...I won't go into details, but I had to get the nurse to change it!
She also enjoyed playing with her collection of various stuffed friends!
I'm not sure how she was even fitting in the bed anymore! Most of her friends she has added stickers or hair bows to. She has always loved stickers, but her friends from PICU have created a monster! In fact she was handing them out to all her visitors the other night.
This morning right before we moved rooms she was singing and dancing to the singing dog Aunt Kimmie brought. I haven't see this kid in 3 weeks. Since her birthday she has had absolutely no energy or spunk to her.
Tomorrow's the day we are supposed to find out about the biopsy...honestly I try not to think to much about it, when I do I began to fall apart and I let myself start googling things that I shouldn't when I just don't have all the answers yet. I just never imagined we would be facing something like this, what parent would? I'm not mad, just having a hard time figuring out life right now. We have another child we have to take care of....well technically two, and with this new room it will be much easier for Mommy and baby Sarah with an H hyphen Rose Jane Blaine to rest. But do Richard I both continue to stay here day in and out? Do we both sleep here, what if I'm not here and something happens? Its not like we are right down the road. Noah didn't want to leave today and it broke my heart. He was so excited to see his sister's new room, and meet all the new nurses. Kinda feel like I'm living in a dream, this world goes on around me...and I just keep doing what the nurses and dr's tell me to do. I know Jesus Loves Me...now can I continue to show it to all those around me? Maybe I need to continue to push the bear's hand to hear the song.
*A little visitor intervention helped make that non productive train of thought go away - thanks Kim and Jr.*
Richard read me this verse this morning and at the moment, I find it completely appropriate...
Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding,will guard your hearts and your minds in Christ Jesus.
I don't know what tomorrow holds, but I know I'm extremely thankful for today. Thankful for these smiley happy moments. Thankful my husband is right by my side when I do fall apart and holds me tight. Thankful that for some reason God has chosen us because he knows we have the strength. And thankful because "Jesus Loves Me"
One Day at a Time