Saturday, September 6, 2008

Quick Update

Way to go UTES!
I had to get that in before Rob reads this.

It has been one week since we started the ACTH therapy so I thought I would let you know how it's been going so far. He does pretty well with getting the shots even though the medication is extremely thick and takes a while to inject it into his thigh.

Last Saturday (day 1) was pretty bad. His seizures were getting more frequent, more intense and lasting longer. As the week progressed he was still having more seizures but he also was extremely stiff. He would wake up in the morning with his arms fisted and straight up towards the ceiling. His head also took a lot of pressure in order to turn it to the middle and he would scream when he did therapy. Wednesday I increased his Baclofen (muscle relaxer) to the limit the doctor had allowed me and he has improved some. By Friday I think the seizures have improved some although he has started to get more angry. His blood pressure has remained low and I haven't seen any water retention :) He gets his blood checked in one more week to check for liver and kidney problems.

15 comments:

Randi said...

The Utes and Cougars did AWESOME today but lets face it, Charlie is the real ROCKSTAR!! Keep up the good work little Coop, you can pull through these seziures. He is in our prayers every day.
God Bless

Paige and Josh said...

I second the UTES comment! I am sorry that he is so stiff and still having seizures. Hopefully as time goes on it will keep getting better and better for him. ;)

Anonymous said...

I am glad that even though the Week was stressful that it has calmed down some. I am glad the Utes and Cougs did well. I do not even know how my teams did in Montana.Hug the boys for me !!! I hope many blessings come your way today. Love,Shyla

Anonymous said...

Yeah UTES and Cougars they both did so... well. Glad to see things are going well. Keep up the great work

Christiansen family!!! You all rock!

Love,

Bountiful Family

whitney said...

Go Utes! I hope Rob had his hat on. Ang, I will say it again, thank goodness Coop has you and yours to take care of him.

Anonymous said...

Thank you for the update. I am fasting and praying for you today. I know that blessings will come your way! We all love you.

Anonymous said...

When Hunter was on ACTH, he was pretty awnry. After a few weeks of this, you both with feel like nurses. Checking blood pressure, giving the shots, etc. Emily would sing Jesus Wants Me For a Sunbeam to Hunter to distract him for the shot. It was nice after about the first week he seemed to get used to it. Hope it helps, keep up the good work.

Bryson

Meghan said...

i'm not looking for a miracle, just some charlie steps. cuz that's how he rolls.

sorry we haven't been around - keeping my sickies (who are better) away. wish you luck and patience this week. we love you.

Roxey said...

You are the best. Thank you for your example. much love and prayers as usual.

Megan said...

My prayers our always with sweet little Charlie.
He looks so cute in the picture with Britt. What handsome little boys they are!!

Good luck with the new meds, I hope everything works out and that Chalrie's seizures get under control.

Shannon & Eli said...

i just wanted to thank you so much for the charlie steps bracelets that came in the mail today. We think of you often and in return I would like to make a vinyl car decal in honor of charlie and your wonderful family and sell it on my website and i will donate all of the profit (90% of the total) to Charlie. I am sure you have heard of nie-nie's story and I have done one for her. Is there anything in particular you would like it to look like or is this something you would like done? Thanks, again, we think and pray for you often. (shannon_staker at hotmail dot com

Marilee said...

OWWWW!!! Thick shots in his chubby little thigh. What the-- I would be mad too.
I was just bragging about Angel to my husband and the "at home EEG" and that not all mothers would be able to do all you do for him at home. I know it's hard, but I am so proud of Rob and Angel and their large support group.
Go Utes--Go BYU--don't want to offend anyone. Consider me the squishy middle. ---((stand and shout the--well you know the rest)

Trish and John said...

John and I and the guys at my station are all keeping you in our prayers. So sorry that our little fighter can't get a break with things. So glad that you are able to have access to equipment that helps appropriate treatment come sooner to Coop. We love you, hang in there!

Anonymous said...

Just checking in.... I hope things have settled down a bot for you guys!

The Huffies said...

Hey, I don't know you guys but ran into your blog awhile back and follow it from time to time...I have a baby girl the same age as Charlie. Anyhow, I just wanted you to know I felt I should put his name in the temple this week and I did so on Tuesday...I hope it helps.