The day was better than last night. He has been relatively calm and very responsive to the bum pat. Yea! This morning we went with Janine to physical therapy/speech therapy. He tried a small taste of sweet potatoes with the same technique as the pudding yesterday. The fact that he didn't clamp his mouth closed is considered a positive sign. He is not opening his mouth and swallowing like a normal kid but when the therapist's finger is in his mouth with food on it he investigates it with his tongue. Because he hasn’t passed his swallow study we are limited to giving him a taste of something once a day. Janine said he is holding his head up a little again and is calmed with patting his bum, lips or chest.Dr. Brockmeyer, the neurosurgeon, came by to let us know he looked at the CT and there are no changes. So there is not a good explanation for the breakthrough seizures. I also should have been more specific on the CT results from yesterday. I said they were normal and that is not necessarily true. Charlie’s brain will never be normal. I should have said “the shunt is working normally” because there is not any increased pressure in the ventricles. The CT looked like the previous scan – no change. Dr. Henrie stopped by on his way out and told me that Charlie’s seizure medication level is within therapeutic ranges so we will probably not increase his medication at this time. He also talked to neurology about the episodes and they feel the seizures are probably partial-complex because of the eye twitching. Either way they were not too excited about them and if they happen again we are to give Ativan to stop them and then check the level again. I told Coop that he had to continue to behave for Grandpa Barlow tonight.
Since Charlie has become a celebity he has had all of his cute girlfriends come to visit.
Andrea and Ashley
Andrea and AshleyAndrea and Jada Rose
22 comments:
I'm so excited for you Charlie that you are actually tasting real food. Keep on keeping your head up and your still in our prayers every night! We love you Charlie you are such a sweet boy.
That is a good sign that he will do that for the therapist. I was really nervous when Kayden had his swallow study because he didn't ever take anything by mouth. For some reason my son likes the barium and swallowed just fine. So we knew that he was o.k. with swallowing he just didn't like things in his mouth. Good luck and hopefully things will get better.
You have such a sweet baby! Our prayers are for him and for you. He chose you guys to be his parents out of every other parents in the world--becuase he loved you guys the most!!!
I'm so glad that he is swallowing! What a great sign!
We wish you all the blessings in the world at this hard time! And we will pray for his health and for Mom and Dad's health. (Don't forget to eat meals, too!)
God bless your family!
--S.P.
Seriously, if I see oreos, I will freak...........
Yeah, I am glad to day was a better day for Charlie....that makes it a better day for you too! I hope he sleeps well tonight. Sweet Dreams of Heaven Charlie.
Angel...
I want you to know that you are still in our thoughts and prayer! And Rigby is now in the pj's that you gave him and he loves them.
And by the way your hair looks Fantastic!
My friend Emily said that she loved you and Rob. I am glad she got to take care of little Charlie.
Keep up the good work!
you know how char loves sweet potatoes - i am glad you went for the ace in the hole. and those grils are no dummies - thye know a cool kid when they see one. i hope he has restful night with grandpa brian...
by the way, brit said he't not ry's friend anymore because he has a new friend.. hejust can't remember his name :)
Ang and Rob, just want you to know we are still here thinking of you and your little precious family! We will pray for Charlie's progression, that the siezures will go away. We love you! Love, Brad, Allie, Averi and Lilia
sweet little charlie. we love you and pray for you all day...seriously. izzy is really into prayers so we stop playing at least once every few hours and say a prayer for our friends charlie, britty and of course ry-ry and the babies. hang in there!
Angel and Rob, my name is Kristine and my husband and I live in Ottawa, Canada. We welcomed our first child, Kaitlyn, this past December 18th. Kaitlyn became ill on January 5th (known as the day it all went to hell) and it turned out to be GBS Meningitis. We have been where you are now. Katie has only been home for about 1 1/2 months. We've been through almost losing her, seizures, 20 meds, a broviak surgery, brain damage, MRI's, etc. I only have a minute, as I'm heading off to bed. I just wanted to connect and let you know that I've just started following Charlie's story and I will be thinking of him and praying for him, along with my daughter. I will tell you more about our daughter and our experience so far, if you are interested. My email address is sorochinsky@gmail.com. I hope you have an uneventful night!
So much love for you guys! Sleep well tonight. Love and prayers, Rox
The love and prayers just keep coming. I read so many comments of the lives you have touched and I am in awe. Charlie has such a strong spirit that I can almost feel it when I see his pictures! The many people who surround you love you and I know they give you a lot of strength. You are never alone. We are all praying and doing all we know to help you eventhough we do not know you personally. I have found a glimmer of my old faith that is burning a little brighter now that I am praying for Charlie. I know that he ia a miracle and he still has things to teach all of us. thank you for sharing your sweet boy and you experiences with all of us!
I have been amazed by little Charlie since finding your blog the beginning of March. My close friend has had stays at Primary Childrens and she found your blog off of my link list. She says she checks your blog at least once a day. I check every few days. Your family and Charlie are such an inspiration to all of us. We too have had hospital experiences, but you always stay so much more positive than I ever felt while being cooped up in a little room. God bless Charlie and everyone continue to keep your heads up. You are all in our thoughts and prayers. - Brea Wentz
Since seeing your story on the news the other night I've often thought of your sweet little boy. I'm no stranger to the hospital scene, as last spring my baby began a two-month stay in the NICU during which my husband was hospitalized for viral meningitus. I'm sincerely touched by your family's strength and faith through such a diffucult time in your life. One thing I finally learned during my son's hospital stay was to finally put everything in the Lord's hands. I found comfort in the words from a hymn "I believe in Christ, so come what may" Through the heartache there is so much peace in that statement. Your story makes mine seem small so I'm sure you already knew all that, but I just wanted to write something to show some support. Your little boy is truely amazing and I will keep him in my prayers.
Don't forget to take a care of yourself too.
Sincerely,
A.F.
p.s. Go Cougs
I just heard about your beautiful and sweet boy from a friend of mine and I just want your family to know that he is in our prayers and thoughts. I am deeply touched by your strength and pray that he will recover quickly so he can return home with your family. He has a beautiful smile and my heart is touched by his story. Thank you for keeping us updated on how he is doing...we are praying for your family especially Charlie!!! God Bless!
Good morning,Charlie!!! I hope you are feeling better! Iam hoping that there are no more seizures! I hope you are able to taste more food! I understand Shani loves Oreos Maybe they'll blend some up for you!! That would make her happy! I read that you, Mom and Dad were on TV Thanks for the link all.
Seriously, though you're so loved and prayed for each day!! I wish there was something that I could say or do to help in person. I know that Mommy wants you to smile again and you will!! There are so many unique ways of doing things. Mom and dad are going to be busy heping you and Britty grow up. If they need anything,just post Shyla From Montana
Angel I have decided that this week is seizure week! Darin has also been having seizures this week! They are no fun!!! I'm so sorry about having to see your little boy go through that! Here's hoping that seizure week ends early!
He is so very beautiful and you are surely blessed. I just came upon your blog and I will check it often. Thank you for sharing your story with us.
Rob and Angel...
I just spent the night and morning reading all of your posts. My heart is full and my cheeks are soaked. What amazing parents you are! What a perfect little boy you have. He is a blessing to so many...
I have to say that I am IN LOVE with your little man. I just want to hold him and pat his bum. Having 3 kids of my own, and knowing how much you love Charlie, we will be praying for you...even tho we're strangers.
Keep the faith.
Tami
I found your blog and just started crying when I saw your sweet little boy, and read about what your family has been going through. You are such strong parents and I hope the best for your baby.
We linked to Charlie's blog from our friend Jen McFarland, and I have spent many hours the last few days ready about your sweet little guy. He has been in my thoughts at all times, he has touched my heart and the hearts of my own kids (9&8 years old.) Your family is amazing, your faith is inspiring! I am so impressed by your positive attitudes and I am sure that is helping Charlie. We have a quote we like at our house, and I feel Charlie and his whole family live by it:
There is only one way to succeed at anything and that is to give it everything! (Vince Lombardi)
Your in our prayers. The Johnson's
P.S. I am sorry you haven't been able to push your husband to the light! Go UTES!
Since the story ran on KSL I have checked this blog almost daily and I feel like I relate to your family and what you are going through, I have had to watch my baby lay in those Primary Children beds far to many times and I have experienced the outstanding staff there and I am so happy that Charlie has them, He is an amazing little guy and I have you all in my prayers - stay strong and know your little one has touched my heart.
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