recovery update #8 > julie

hey ya’ll roma fans,

we received the results of the eeg and ct scan tests as follows:

> the eeg did show that roma was having some seizure activity. the doctors will slightly increase roma’s seizure med that she has already been taking [kepra] to counteract this. the challenge is to give her a dosage that controls the seizures but does not make her sleepy. i am going to get some more clarification on this from dr. doherty hopefully today. want to better understand the type and severity of the seizures and how they may be able to test for this. i asked roma if she felt she was having seizures and she confirmed that she was. so, we will listen to her and try to get these under control.

> the ct scan showed no increase in the size of the ventricles which confirms no hydrocephalus! dr. doherty will send the results to dr. parsa at ucsf so he can review and confirm all is good. big sigh of relief on this front.

misc news in roma’s world:

> the communication computer device is on it’s way. roma is not sure it is the best tool for her right now. the ataxia makes it difficult for her to push the right keys which is frustrating. the computer is supposed to relieve frustration not increase it. [isn’t this always the way with technology!] so, the vote is still out. we shall see.

> headaches have been decreasing. very little extra pain med needed this week: big deal.

> roma’s energy seems to be increasing. still pretty beat after pt/ot but not as much as last week. she has had a few good night’s sleep which have been helpful in this regard.

> pt and ot still going really well. incremental increases daily.

> visits on the upcoming calendar from healers extraordinaire: giulietta, james, colin, brian la forgia and mark frost. and then of course there is the daily healing regimin provided by the on-site healers: jean&glen and julie

> roma jean turns 42 tomorrow! next year we will make sure she is in a better location to celebrate the occasion. this year it will be kentfield porch with bells on.

that’s it 4 now.

love & light back at all yous.

xoj

recovery update #7 > julie

hey ya’ll,

roma jean had a great weekend.

she got these things:

– visit from the family for father’s day. all the father’s were in the house: glen and geno got love from rj and visa versa

– fried chicken [mom made melissa’s recipe which was amazing: soak it in buttermilk overnight = tender finger licking good!]

– new sunglasses and assortment of rehab lounge clothes delivered by roma’s personal shopper: sister liz [thanks sister!]

– treatments from giulietta and colin and laura&isa

– a shower!!! first true shower since may 6th. lord have mercy. also: shaved arms and legs! she was looking like a true blue hippy. she doesn’t mind the hippy part but the body hair was just not working for her. we [julie& cna curtazia] took her into the shower in this pvc wheelchair thingy. i got a bath too – fun.

yesterday she went to marin general for her follow-up eeg and ct scan tests. we should find out results later today. this went pretty smoothly after jean handled all the paperwork blue cross mix-up. only bad thing was that roma got goop in her hair from the eeg test. so, yesterday afternoon she got: another shower! julie&curtazia tried to stay dry, but to no avail. rj is clean clean clean.

today liz and kristy are taking the morning shift chillin with rj. roma will have a meeting with a computer rep in speech therapy. they are going to get her a computer that will help her communicate by touch screen until she can start talking via traditional methods. pretty cool.

more later when we find out test results.

xoj

recovery update #6 > julie

hey ya’ll roma love team,

here’s the latest from roma support team:

> we [jean & glen + julie] met with debbie the case manager today. she had the “rounds” report to review with us as well as basic info. the “rounds report” will come to us every friday and is an overview of the week’s progress containing info from all the therapists and doctors.

– the report this week was what we all observed: big progress from the week prior. roma is getting stronger and is able to execute much more of what the therapists are asking of her. [more on her physical symptoms later.]

– debbie also gave us the good news that roma has been approved by her blue cross insurance for 10-12 weeks of in-house rehab if she needs it. big sigh of relief from the financial team.

– roma will have an eeg and ct scan and meeting with neuro opthamologist specialist all next week. the eeg will confirm she is not having any seizures, the ct scan will check her ventricles to make sure she is not developing any hydrocephalus. the neuro opthamologist will help devise a plan to help her eyes to realign so she is not having so many problems with double vision. one of the potential therapies mentioned is botox! roma will be able to see and look better for it!

> roma’s current symptoms

some of you have mentioned that you read the blog but don’t have a super clear picture of roma’s physical symptoms. so here is where we are to date. as mentioned earlier she is improving daily however the symptoms are much more persistent than any of us imagined [especially roma]. roma looks and acts is as if she had a post surgery stroke. important to remember: she didn’t. having said that, here’s the deal: roma cannot walk or talk and is pretty darn incapacitated. she is basically in the relearning everything stage. on the bright side: she can understand everything we say and has 100% cognitive ability. she is also amazingly positive and working really hard in therapy. example: 10 days ago she was having a hard time lifting her head from the pillow. today she was lifting her body up off the bed to a seated position.

this is all very different from where we thought we would be at this stage. 3-5 days in the hospital turned into 4 weeks really quickly. and now we find ourselves looking at more like 3-5 months in initial recovery. so, big deep breaths and lots of patience + fortitude is what is now required. plus: love and positive intention of full recovery and healing from all of you out in team roma land.

have a great weekend and happy father’s day to all you fathers out there. big shout out to glen the super hero kentfield rehab resident dad.

as always, thanks for love, prayers and jokes.

xoj

dog love #3 – dozer

Love from our pup to Roma from her favorite Indian friends
John-Dori

love from susan & makenna

Melissa’s niece Makenna in her “O Mighty Isis Goggles.”

Makenna thought Roma could borrow them to expedite return to full vision (and beyond no doubt) while also providing her with additional super gal power for quick recovery. Melissa and I, (sister Susan) had remarkable powers when we were younger after crossing our wrists and turning in a circle (faster than the speed of light) while chanting “O Mighty Isis Isis Isis” . . . . . I can’t imagine what we might have accomplished if we had the extra benefit of the goggles!! Complimenting Roma’s own super duper strengths with Isis verve should have her fleeing Rehab without the aide of accomplices in no time.