What happened to this day? It went by so quickly. I stayed with Gabe last night and Manny stayed with Christian. We woke up early this morning and went back to school shopping with our class supply list in tow. I can tell you that I miss the days where I would get whatever I wanted Gabe to wear, bring it home, and dress him. No complaints. Now, he needs to be involved. Talk about a headache. But we had a nice time together, got some goodies and new shoes for Gabe, and finished the shopping excursion out with take out from Applebees, courtesy of one of my August mamas! It was nice because Gabe and I have always had Mom and Gabe Days/Nights where we have a "date." This is either renting a movie and eating junk food, camped out in living room or going to eat or whatever we feel like doing together.
Manny got some time alone with Christian. He did some range of motion with him, he was able to be there when they did Christian's first trach change, and help take care of Christian. Manny loved it and felt so blessed to be able to take care of Christian and that Christian was here to be taken care of.
Christian had a good day, I'm pleased to say. He did throw up two of his feedings because they're trying to increase the volume. Increasing the volume and spacing it out further (for example, they give him 105 ml every three hours) helps him learn to eat as if he were taking a bottle every couple of hours. He's not really liking this plan so we're tinkering around with what is going to work for him.
The doctors also increased Christian's dose of baclofen. This drug helps loosen his muscles so they aren't so tight. I'm glad they did this because his movement was so fluid today. He was opening his chest and he was able to open his fists. He seemed a lot more comfortable.
I held Christian for two hours straight today. I didn't want to put him back! He was so comfortable and relaxed I just couldn't let him go. But I swear the kid wants to nurse! I know, I know, it's very reflexive, maybe in my head, blah blah blah...
I was wearing a tank top so I put his cheek on my chest so we were skin to skin. He kept turning his head and burying his face in my chest and he was making sucking motions. Not huge sucking motions, just intermittently. Of course, it doesn't make sense to him but something inside of him knows that nursing was probably his favorite thing ever. And he's just going for some more! He just doesn't know how to make sense of it. And that's another new thing he's doing...little sucking motions. Nobody else has seen this except for me, by the way. Figures.
While holding Christian, he just kept staring at me. The nurse even remarked how he was staring at me and he knew he was with his mama. I can't wait until we're home so I can hold him all day long.
Something else Christian is doing is yawning, or what looks like a yawn. At first I thought he was going to throw up but the nurse was actually there to witness and she said, "That looks like a yawn!" But his eyes watered just as if he'd yawned and he took a deep breath. Baby steps.
Off to another crazy day tomorrow. Gabe is turning 11! Happy birthday, baby!
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I just read through practically your whole blog and I am in tears. Not just a little watery eyes, the tears are pouring down my face and into my lap(!) over your story.
I found your link on Kelly's Corner prayer blog, and for some reason it just grabbed my attention, even in the midst of so many painful stories.
My husband suffered a traumatic brain injury 10 years ago and had a very poor prognosis. You have to click on the link to my blog and see him now. You'll be floored.
When Tim was in that coma for 3 weeks, and had machines doing everything for him, his doctors thought he would die. But I was so confident that he would pull through...I can't describe it any way other than God just put it on my heart.
I started balling when I read of your confidence and refusal to lose hope, and even more so when I read when his pulse and breath returned when you touched his leg and said his name--that is such a truely amazing miraculous and beautiful story.
We have a chronically ill 4 year old son, but in different ways. I was up worrying about him tonight and to take my mind off of things, I went on Kelly's prayer blog to pray for others. I saw so many heartbreaking requests and suddenly, felt so small!
The beauty in all of it though is that each of us, no matter how small, matter tremendously to our God. He is the God of miracles, the God who heals, and the God who saves.
I pray for a ginormous mighty miracle for your son and pray that God will receive all the glory for doing so!
Oh, and I am not able to donate to your paypal account because we have one for similar reasons--putting us in that no money but have lots of medical expenses boat together--but if you want, I would love to make-over your blog for free. I started doing it to make money for our medical expenses but I have a special heart for the mom who has a sick child, being that I am one myself. I never would have learned how to do it if a friend didn't do it for free for me one day, and never could have afforded it either--so I would love to pass on the gift to you.
If you go to my blog, you will see a button that says Masto Mama Make-overs, and if you click on it, it will give you more info. It
s totally free for you, no tricks! And best of all, it's custom made.
Anyway, I'm sending you huge ((((Hugs)))) from California, and I will be praying for you guys. I can even make a prayer button for Christian, and post it on my blog--it will eventually make its way around blogland!
Love in Christ,
Carla (Masto Mama)
http://mastomama.blogspot.com/
Happy Birthday Gabe!
Baby steps Christian.... keep up the good work ;-)
sucking and nursing begins as a very basic reflex! You said it was like having and holding a newborn again! The yawn just sounds precious!
Happy Birthday Gabe! I hope you have a great day!
It is so uplifting to read of Christian's progress!!!
I'm going to send your link to The Orange Grove (http://health.groups.yahoo.com/group/TheOrangeGrove), a group for TBI caregivers (and a couple of survivors!) I joined on behalf of a friend whose son suffered a severe TBI 2 years ago. There aren't many babies (I sent the link about Noah, a shaken baby - http://www.noahsroad.com/), and they would love to keep up with the good news!
Regarding Christian's possible nursing moves, have you tried to give him the opportunity, or is that not possible for some reason? If he's acting like he really wants something and he GETS it....
Many hugs and prayers, and happy Christian's birthday!
'Lucy'
I just love reading about his daily progress! Keep it up Fighter!!! <3
Happy birthday to Gabe! I'm do glad that you got to spend some time with him. Those are special moments to treasure...whether you're out shopping, watching a movie, or eating junk! :-P I'm continuing to pray everyday! Keep it up buddy! :-)
Happy Birthday to Gabe!!
Count in 3 Grandma's who are praying for Christian and your family. Me, in Tucson, Donna in MN, and Judie in NM.
Happy 11th birthday to you, Gabe! After reading all of your Mom's blogs, my friend in Minnesota wrote me about what a fine thinking and brave young man you are. You did 2 most important acts for your family. You pulled your brother out of the water and you called 911 for help. She writes, "I pray that God Almighty will open His storehouse of blessings and rain down upon Gabe.....filling him with gifts that only His Heavenly Father knows he has need of in this season of his life. AMEN to that!
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