Chris- Update

[chrissmom]

Hi All...Still here in Pittsburgh...home of the Pirates  (and Steelers)...

1.  Chris is doing great !  The doctors and PT persons all agree that he is progressing very well.

2.  Today he had a gold weight implant.  His little eye is swollen. I didn't think the eye or mouth droop was that bad but the doctors said that it was their experience with young people that the "droops" happen later.  He wears his moisture chamber at night...told him he looks like Johnny Depp.

3.  He is walking fairly well with help.  He isn't dizzy at all and that amazes me.

4.  He is eating regular foods but he still is having trouble with water.  Hopefully that will come back soon so he needs thickened liquids until he passes the swallowing test.

5.  His hair is so long and he has scars all over his head from all 5 surgeries.  We can't cut or wash his hair.  We can't wait to trim him up.

6.  He seems to be getting stronger every day so I can tell all those prayers are working.  The novena to the Infant child is truly miraculous too.  You know, they almost sent him home on a Friday but I kept telling the nurses, something is wrong.  Fortunately, a community nurse was not available that day so they had to keep him and that night he had an emergency surgery for hydrocephalus.  The  prayers worked for us, he surely would have been in trouble at home.

7.  Speaking of home, we  may go home to a rehab center nearby TOMORROW !  He will get 3 hours of intense therapy as an inpatient, then as an outpatient. The PT told him today that he was progressing fast so it's looking good.

Taylor, I'll tell him to contact you when he is feeling better.  you can share stories.  Best of luck to you and Chelsea.

[Battyp]

Yeah!!  We're all celebrating the milestones with you.  Keep it up Chris!  Big Hugs to Mom!

[Sue]

Wow, what a story.  So glad Chris is doing well.  He does have youth and strength on his side (instead of old age and cunning!! ) and that certainly will help him heal fast.  Thinking of you and your family and wishing you all the best. 

vANcouver Sue

[chelsmom]

Hi Chris and Mom,

Things sound like they are moving along really well.  Did you make it to the rehab center yet?  If so, is it in- patient or out- patient?
We are still here at the UCLA neuro-rehab.  We were given a date of this Friday the 4th to leave but it was changed yesterday to the 8th.  Chelsea has to have a G-tub put into her stomach for feeding before she can leave.  They couldn't find a vien to put in an IV so this delayed everything which caused her discharge date to be changed.  She has had it with being in the hospital (so have I) and can't wait to go home.  She is hoping to be able to spend a little time with all her friends before they leave for college in a few weeks.  Is Chris still in school?  Will he be going back fall semester?  Keep us posted. 
Take care of yourself and Chris.  Give him a big hug from us.          Love,  Michelle

[Pembo]

Chris and Mom, Things definitely sound like they are improving. I went to inpatient Rehab and it was wonderful. The pt's taught me so much.  Stay strong.....

Barb

[chrissmom]

Hi All...

We're home.  Chris is in rehab at  a local hospital.  He is progressing so fast we can't believe it.  He is almost walking without assistance, no dizziness either.  He does have trouble with turns.  He hasn't caught on to that yet.  He wrote his name and the days of the week in therapy.  My heart just jumped for joy to finally see letters again.  As he got tired though, the letters became less legible.  He will not go back to Penn State in the fall.  That is sad because he is watching his friends get ready to go.  I may look into cyber-classes  for him.  That might be the best option considering we haven't even discussed what to do about the hearing disability.  We have been so concerned with just getting through this.  Chris is finally eating normal foods.  He passed the water swallowing test twice in a row so they upgraded his diet.  He is still very fatigued and he is not himself.  Normally, he is a friendly- outgoing guy.  He seems quiet, reserved and tired right now.  We have had Psych consults but he claims that he is coping well.  Thank you all for your help and support.

[cookiesecond]

Keep up the good work and thanks for the update.I am so glad to hear things are progressing so fast.Soon, this will all be a memory. Chris is so blessed to have you as a constant support in his life.Take care of yourself and keep us posted.
Take care,
Lynn

[tumor mom]

Hi Chris and Chelsea's mom,

So glad things are finally turning a corner and you can all start to recover from this.  I just want to say that as much as they want to get on with their lives, take this semester off and really work on getting healthy again.  When my daughter had her 5 cm tumor taken out March 2005 she was so upset that she was missing her spring semester at University of Delaware.  Kara had 5 months to recuperate and when she went back this past September it was still very hard to concentrate and deal with the work load, plus being away from home (we live in Houston) it was like freshman year all over again.  As you know although their bodies heal, having an acoustic neuroma is a life changing experience and mentally I think it takes a llittle more time than physically to get better.  You have been so stressed these past few months you now have to take care of yourself and also help your child prepare for what lies ahead.  We were so grateful that Kara came through the surgery and physically did so well last summer that it really took us by surprise when she had trouble coping at school.  This past February she decided to take that Spring semester off and has since transferred to the University of Houston, she is working full time in her field of study and seems to be her old self again.  She decided she did not want to live so far away at this time, after what she went through.  Everyone deals with the SSD differently but Kara found it to be particularly challenging when she went back to college and trying to hear in class or just visiting in the cafeteria (the noise level, as you can imagine was overwhelming and she felt like a different person not really being able to enjoy the different conversations going on with all her friends).  And last but not least for some reason they tire so easily and it is sometimes hard to keep up.  (I'm not sure if they ever get their old stamina back - but they learn to cope with their new body).  I know it's hard at this stage in their life to think they won't graduate with their friends - but I think they'll realize they needed that time off to heal and will someday think back and wonder why they were in such a rush to get to their classes.

We think about you and what you have gone through this summer and we're all so glad that your ordeal is nearing an end.  Please keep us posted and let us know how things are going in the future.  Although Kara is well we still check out these boards and try to help others by contacting them and letting you know there is a rainbow after this storm.

Take care

Donna

[chrissmom]

Donna,
Thank you for all your encouragement and words of wisdom.  You have been there and you are shining a light on the path that I must take.  I certainly appreciate it.  Your observations of Kara are very helpful.  I need that.

Bruce,
Thanks for the help with Penn State.  I'll look into it.  I too have a masters in Education with certification in technology. Interesting.

Thanks to everyone who reads my posts and replies with all your words of encouragement.  You give me strength.