Sunday, October 12, 2008

Sunday Afternoon

About 3 weeks ago Charlie started getting a rash. First just a few pimple looking bumps on his chin. Then it spread to each side of his nostrils and a couple days later to under his eyebrows. Every few days it seemed to have spread just a little- inside his ears, on his forehead. It is only on his face and only in certain parts of the face but it is taking all of Rob's will power not to pop them. (It's a strange Christensen tradition to pop each others zits at family gatherings. Some actually refrain from popping them themselves to have their siblings do it at Sunday dinner.) Our pediatrician was not nervous about the rash because Coop seemed to be fine otherwise but then his blood pressure started to go up as well so I called the neurologist as instructed. He was concerned about the BP and thought the rash could be from the ACTH (seizure shots) as well. The rash he said should go away when we are done with the shots but the blood pressure is concerning so he asked us to get a manual blood pressure as the automated machines tend to run a little high. After a failed attempt at Instacare we went to PCMC and it was in fact high so we are weening quicker than originally planned hoping the BP will come down and that the seizures will not return.

He has been doing a little better in therapy. He seems to tolerate bearing weight in his arms and shoulders better than before and he is alert a lot more often. He is only taking one nap a day and the rest of the time is softly moaning. He is now moving his arms up to his face by himself and can sometimes hold his binky in if he hits it just right. (not on purpose yet). He has had a cold for a couple weeks and is having trouble getting rid of it completely due to his decreased immune system so we haven't been feeding him much baby food as he is coughing more. He is liking his binky a lot and kept in in himself for 3 hours on Sunday. This is a new trick for him and we are pretty proud.


whitney said...

He is always full of surprises! I hope the weening goes well, so glad he is un-weening his binky (you know what I mean!) I need to see him!

Anonymous said...

I am always so happy to see a new post. I know you are SO busy and we all appreciate any updates. I am sorry about the rash and BP! I continue to pray for my little hero and his family. I pray that you can wean him quickly and that the BP will go down and not be a worry. I am glas he likes his binky more. At least it is some comfort for all of you! I know my kids binkies were the best thing for all of our nerves! It is nice when they can keep them in and just suck away! My faith grows deeper as I continue to learn for your family and Charlie. Some of my friends in Vietnam have asked about him. They still want to know about the sweet little boy in America who has brought such hope to so many people. Thank you for continuing to share your life with us!

linds said...

way to go charlie! these are great steps. we love you and are proud of you!

Anonymous said...

Thank you so much for the post. I continue to pray for all of you and wonder about Charlie often. Every baby step is a big step and soon you will all be running.

Anonymous said...

Hey Guys!

Dr. O here just thought i'd check on ole Charlie and see how the cougs were doing. Been so busy at work I've missed some football. Yah i know....blasphemy :) But i'm happy to here he is doing better after the seizures returned. Hopefully the ACTH will do the trick. I love Dr. Fran he is great.

Life has gotten a bit busy for me lately. promoted at work and at church (Bishop as of 4 weeks ago) But lucky for me my family still tolerates me.

I am going to the annual Infectious Diseases Meetings in Washington DC and presenting research that we have done at PCMC as a result of meeting and caring for Charlie. We will be soon writing the presented research in paper form and I would be happy to share it with you once it is all done and accepted.

Talk to you soon,

Dr. O

Anonymous said...

Here is to hope!! Ms.Shyla in Mt

Through the Looking Glass said...

Binky boy! What a success! He is making progress, darn it all he is. Can't wait to see you soon; I'll come prepared to help you relax and think of no one but yourself.

Ginny said...

hope the speeded weaning brings relief without relapse!! we continue to pray for you daily.

Marilee said...

Love the binky. It's nice if he can learn to comfort himself. Maybe that's what the moaning is about. I have seen acne like rashes with cortisone like medications. Hope that's all it is.
Happy for an update--thanks.