Tuesday, January 20, 2009

It's Been a While

Not because nothing has been going on but because we haven't had very much time to post. Coop has not been behaving over the last couple months and has become very high mainentence. Since staying in the hospital, his sodium has come back down to normal levels but the agitation has remained and has slowly gotten worse. He is now calmed the most by being held and cradled. When he isn't held, he get extemely tense and arches like he did when he was in the hospital and immediately starts sweating beads- like he is going through menopause. Our pediatritian checked him and couldn't come up with anything definitive that could cause discomfort so we are to see Dr. Such-Neibar to adjust medication. We have several theories but can't choose just one (teeth, medication change, brain recovery, constipation problems...) Due to his new temperment he has been kicked out of therapy until he can "find his smile". A problem his big brother often has. We have been very lucky, however, that Char has had few cold/viruses this winter to complicate the tricky diagnosis.
This is how he is the most comfortable-arched backwards- Notice he is sound asleep
The only pics from his hospital stay- I'm out of the habit
Reunion with his "Hog Doc"- He misses you
A Smile for Neale- we don't get as many anymore


Meghan said...

holy moly im just thrilled for the new post! he has been a tricky one the past while, and i assume the Big Man above is chatting with his pals up there saying "do you think they've learned patience yet? even rob? are you sure, cuz we can let this go on awhile longer?"

we pray he is going to be over this naughtiness soon and that it isn't behavioral. in the meantime, hang in. i know that gets old to hear, but i don't have any other advice except that bose makes a pretty sweet set of noise reducing headphones... and you're always welcome around us - jane could use someone else than sam to focus her energy on...

Kristine said...

I'm so sorry to hear that things have been tough.

I know that brain injury/healing is a difficult and bumpy road. I also know that it is forever changing as things heal, shift, new pathways are formed, etc...SO I am praying that it will change sooner than later for Charlie! This too will be better. :)

Kristine & Katie

Harris Family said...

Last week I ran into Charlie at therapy with Roxann. Rob your sister brought Charlie. I asked if she was Grandma! Tell her sorry, she doesn't look like Grandma. It was so good to see Charlie. He has gotten so..... big and looks so healthy. Looks like he continues to make Charlie steps. Keep it up little man. Hope whatever is bothering him will subside soon.


The Bountiful Family

Trish and John said...

Here's to hoping that maybe his foul mood is somehow related to the foul weather you all have over there in the winter. He'd like it here as it's been in the 70's the last few days! We'll keep praying for Coop and awaiting more little miracles and Charlie steps. We love and miss you all...

Anonymous said...

Terrible twos? We've got 'em at our house too -- I find chanting "it's just a phase...it's just a phase..." sometimes helps. Sometimes.

Love to your family from icy Brooklyn.

linds said...

i cannot believe how big he has gotten...he looks like a little man. hope charlie keeps taking those charlie steps and you are able to figure something out to help calm him. we love you and continue to pray for our buddy.

EMILY said...

Oneriness must just be in the air right now. I have had more appts then I want to count of late with our pediatrician trying to figure out what has been bothering Hunter. The poor kid has been miserable and it is especially apparent at night when he is trying to sleep (trying being the key word). For a while he was throwing up at least once a day for no apparent reason...and then of course that just went away suddenly (right as I was preparing to call my doctor for some Prozac). This morning when I woke up I looked over to see Hunter fast asleep in the EXACT position Charlie is demonstrating in the photo. What is so comfy about it anyway??? Hang in there...we're trying to also. :-)

Grandma Cheryl said...

Thanks for the pictures and update. I have a couple of hospital pictures, if you want them. I've held him when he was in his "s" position. If he likes it, more power to him.
Hope he is not hurting.
Bless him and both of you too!

Megan said...

I hope Charlie gets feeling better!! What a bummer. Livie has been having some issues lately, as well, with sweating a ton and being lethargic and just really out of it...the docs were thinking maybe its her seizure medication...its hard to tell with all the brain truama whats causing what.
I know Charlie has had problems with seizures in the past, what kind of seizure medication is he on? Livie has been on phenobarbital and she is now on trileptal, but it doesn't seem to be helping very well. So I was just wondering what works for Charlie?
I hope he gets out of this funk soon!!

Anonymous said...

I love seeing a new post, but I wish Charlie was feeling better! I cannot believe he is comfortable in that position! I guess whatever makes him feel calm is good. I pray that the doctors can figure out a solution for all of you. I admire your consistent patience and faith. Charlie is such a darling little guy! I love seeing his little smile. I hope he will share more with you again very soon. I pray for each one of you. You are such a strong and inspirational family! Charlie is so special and I guess there is just something we all need to learn from him He is truly a hero to me! I will continue to check in and know that SO MAY people are sending you their strength and prayers!

whitney said...

Coop, you move my heart. I hope you find your smile soon, it is pure delight to behold.

Ginny said...

what to say, except may God continue to bless all of you!! oh, and Coop looks so cute in that pic with Neale!

Leane said...

I'm so sorry to hear about Charlie's bad mood and discomfort. BUt I can only imagine all of the changes that are going on with him and I do believe it is a phase of his recovery and part of this very long process. I feel for you and you are always in my prayers and I love it when I can check in and see an update. Your little boy has really stolen my heart in many ways - I just love that lil' guy and want the best for all of you.

Hang in there, be strong and have faith that there will be improvement ahead.

Love -

Leane in LA