Friday, March 28, 2008

mid morning

Charlie was settled with his 6 o'clock meds and has been napping since about 6:30. Luckily, his agitation never got bad enough to require any Ativan. Jenny pulled out a binky to see if he would respond to and suck on it like he does his suction tube. He sucked a few random times on it, but he really seemed to calm down when I would massage his gums with the rubber part of it. Maybe his gums are sore from his teething???? Anyway, now he is slowly starting to wake up, and is eagerly anticipating hanging out with his mama today! Randa is nurse for the day and she will be giving me a lesson soon on how to crush up any tablet medication he may need at home and how to put it through his tube. Side note: According to Angel(who just walked in) Britton is pretty excited for his daddy to get home today from Hannah On Tanna. -Shani


Anonymous said...

Shani did an awesome job keeping us folks out here updated. Those pictures of him taking his bath are so cute. He looks so clean - we can almost smell the baby lotion here. Sweet Charlie. We hope you have a good day today!

Anonymous said...

I heard about Charlie through a relative in the Salt Lake area. I want your family to know that we will be praying for you, for Charlie and your entire family from here in Las Vegas, NV. We are member of Nevada's largest church and I will put all of you on our prayer list today.

Anonymous said...

I read the posts every day, but don't comment too often. I think of Charlie everyday and pray daily for him too. Anyway maybe because I am on the outside, but I would say that Charlie has really progressed. I remember several weeks ago reading about all the storms, which I had to educate myself on, and now his storms are seldom. And even though Charlie is now working on eating/digesting he is really doing so much better than he was weeks ago.

I know he has lots to learn, but he is doing better. I will continue to pray for him, his health, and your family. I am glad you have such a supportive family....they are funny too. :)

Anonymous said...

I think Red Bull needs to invest in Shanillia! She has more energy than the Tazmanian Devil on speed! I am tired just reading her posts!

Tammy G. said...

You guys will become old pro's at that feeding tube, I promise!! Make sure that when you go home you get the portable one. I think the g-tube is the best thing ever invented for medication purposes and I think every child should have one.

Good luck today and we are sending good vibes your way. I love to log on here and look at your little man. I think he is the cutest thing in the world. I have fallen in love with him and love that you guys keeping us updated.

The Woolstenhulme Family said...

You are the greatest Aunt ever. It really sounds like Charlie loves it when you are around. He is so very blessed to have such a wonderful family. I love being an aunt. It is the most amazing thing in the world. Keep up the good work Charlie you truley are an angel. I am so proud of the FIGHT you are putting up. I love it that you are such a strong little spirit of our Heavenly Father. Hope you day is as great as your night.

ty, ann & max said...

First of all, I want to say thanks to Shani for learning all she can about taking care of Charlie. My sister had a baby with some complications and was in a condition that needed full time care once he was released. Since I lived out of state, I was so reasured to know that she had friends who took the time to learn how to care for him so the parents could have a break now and then. Thank you, Shani, for doing that for Angel and Rob. It is a blessing to know that you are up there being a gardian angel to our little Charlie. Thank you.
Secondly, I love to read all the comments from people who don't even know Charlie or his family. It gives a boost of strength knowing that there are people out there who care and are praying and pulling for him. Thank you for posting your thoughts for Charlie, it means a lot.
Lastly, --so glad to hear of his implant! I know that has to be a tough decision for parents- I have been crying just trying to decide what school my son should go to so I can't imagine making this type of decision, but I know that you guys are prayerful about your decisions and are doing what you feel is the right thing. Rest assured in that.
Love you all!
Max still never misses a chance to pray for Charlie!

Tammy G. said...

As I was reading over my post I realized it really didn't make sense since I left a word out. I meant to say to make sure you guys get the protable pump, it makes things a lot easier. I am sure that the person writing the orders will know that, but just wanted to put a reminder in there.

Nancy Brown said...

You have no idea who I am but I just spent the entire night reading through your horrible roller coaster ride. My sister is Tammy Gale. I am mom to Tyler. He was born at 25 weeks gestation. He developed hydrocephalus due to a brain bleed. His bleed was severe enough to cause some damage. We were shunted after leaving the NICU and have since had one revison about 2 years ago. We have had several other "skull" surgeries. We go through the daily OT, PT and ST route. We don't have the hearing loss but we have vision loss. He is not blind but is considered legally blind.

I am in awe at the positive nature of your posts. I know how I feel when we are struggling to do new things and I look up to you. Thank you for the outlook.

If you would like to look at my blog please email me at and I will get you an invite.

Our thoughts and prayers are with you.

Nancy Brown