Rosie Current Events

Rosie had her 3rd vocal surgery in early August, her vocal chords just wouldn't meet to get voice, just whispers, and raspy quiet voice. She seems to now be getting more voice, but it has come with lots of hard work. She is going through a job evaluation process, and likes being "on the job" though it is just 2 hrs a day, and she says she's voicing the whole time there. She just finished doing work in a floral dept. for past 3 days. It is still very hard for her to start her voice, she has to strech out her neck, and tighten her vocal chords.

Her sensitivity to high pitches has been reduced, is much better, though not gone completely. Motorcycles and crying babies are the worst!

Volunteering at the nursing home has been most encouraging for her. She likes meeting people. At our church she has appointed herself to be the greeter. And of course, everyone is thrilled when she can say their name.

Drinking liquids still going slow, but she has done well, stayed healthy, and keeps track so she gets enough in daily. Eating is also slow, but getting better all the time.

Last year she went through vocal surgery, shoulder surg., and eye surgery within 6 months. Lot to handle, but she's really great. Has a good attitude, and good humor! She finally doesn't have headaches anymore, just minor sensitivity to bright sun early in the morning. So we thank God and keep on going.

On Wed, the 25th, Rosie's peg tube was removed. She has been drinking so well, 30-45 ounces per day, that her surgeon agreed it could come out. We saw her neurologist also, just to check with him before we had it removed. Her speech therapist encouraged her to sit for 20 minutes after each meal and drink her pop, water or juice.

The increase came gradually over 3 months, but here we are, getting along very well. The liquids also help her to get her voice frequently also. It still comes and goes, but sometimes stays for an hour or even two.

She has also begun doing volunteer work at a nursing home and enjoys the activities very much.

It's been over 5 years since Rosie's hemorrhage. We've seen lots of improvements over the 1½ yr since our last update. Rosie is 22 this month. Her memory, swallowing ability, headaches have all improved. She occasionally gets on-line to send e-mail. She has begun maturing as well, as opposed to being "stuck" at 17 when she experienced the bleed.

Her vision deteriorated due to the medication drying out her eyes, now uses eye drops, and is getting plugs inserted to help keep her eyes moist.

She has come a LONG way, and has maintained a positive attitude. She would like to have some bigger challenges, but still has some big hindrances. Her hearing is so sensitive, cannot tolerate crying kids, loud motors, coughing. She eats very slowly, but thank God, she eats, rather than depending on the peg. We still have to supplement water through the tube.

Rosie continues to be very outgoing, loves socializing, but finds most of her age group busy at college or jobs. We have a good church family to provide lots of social activities with a variety of age groups, as well as chances for her to volunteer.

June 4, 2005

Rosie has had a good spring. No headaches, or just takes her 1/2 hr to adjust to sunlight. A great improvement. PTL! She has begun looking towards her future and what education she'd like to get, to do something with her life. We just returned from a 10-day trip to England visiting Sondra and Mark Striker, traveled to London and several places of there near their Lakenheath area. Rosie did better than I adjusting to the time change. We had a great time! Maybe we should just do some more traveling!

In March we saw her neurologist, for follow up. He recommended d/c the sinemet, which we did gradually. We noticed in May that her right hand was weak and not being used, so have contacted the neuro and restarted her sinmet, and have already seen improvements in 2 days.

Rosie developed double vision from being on noretriptilene, so after seeing the ophthalmologist in Faribault, and talking with her Mayo neuro, we have been decreasing it gradually until now she is completely off it. The headaches have not redeveloped, and we pray they won't. We went to see an ophthalmologist in Mayo last week, and after several tests, he determined that she needed a prism in one lens to correct her vision, which is has done. This is a huge help to her, to be able to see again. She continues to struggle to drink liquids. It's quite a battle, but her attitude remains positive, and she continues doing well generally. Problems with pain in her left shoulder have re-developed, so we need to respond with some pain medication twice a day, and massage therapy should help too. She continues to become more independent at home, which we all enjoy.

Its been all summer and part of the fall on noretryptyline, increasing the doseage to try getting rid of the headaches, and it finally seems to be working. On cloudy days, NO HEADACHES! On sunny days, the headache lasts for 1-1 1/2 hours, and then is gone. No tylenol or other analgesics, just wait, and the headache goes away. This is a huge step forward for Rosie's life. She can plan for morning activities, and have a full day. She doesn't need naps, wants to stay up later than her parents, usually. Voice comes and goes, usually while eating or while drinking pop it will work for 10-20 minutes. We are still hopeful it will continue getting better, as everything else has improved.

We saw the vocal surgeon again this week (Sept 27). The right vocal chord was "plumped up" as he expected, and the chords come closer together. However they still do not meet easily, and he didn't hear vocal sounds> during his exam. But he wanted us to see one of Mayo's speech specialists, which we were able to do that very day, and even the head of their Medical School Speech Dept, no less. Dr J Duffy was very encouraging with us. I gave Rosie some pop, and she was able to talk during his session for about 15 minutes. He said the healing following this surgery continues up to a year after, so we should not give up, keep working on speech whenever Rosie gets sounds, and also suggested a med change which could help improve her speech.

We also saw our doctor about the headaches, which are less, but still are daily, about 1-4 hours duration. Have to use Tylenol about 1 x each week. since this was probably causing rebound headaches, we only use it when she has to go someplace and the H/A doesn't subside on its own. We are increasing the medication again gradually, to try to get pain control, and perhaps eliminate the headaches.

Rosie's attitude continues to be positive, she's a trooper. We are also trying a high dose of Sea Silver, 2 oz twice daily, as this has helped some with various problems, including headaches.

Thanks for visiting the site, please e-mail or sign the book! Love, Faith

Since the vocal surgery we have been somewhat discouraged and yet we see occasional bursts where Rosie can talk for 20-30 minutes, with lots of encouragement. It's very hard work for her. Our speech therapist says there is a lack of brain power to move the vocal chords, messages just not getting through the system.

We had another ER visit, which resulted in a gynecologist visit, and another trip to Rochester for more follow up with 2 neurologists, long day there.

We continue to electrode stim for swallowing once / week, just to help improve swallowing of liquids.

A very positive occurrence this summer, Rosie's energy levels have improved so much that she no longer needs naps each day. In fact, all summer she has been going through each day without stopping to sleep. She swims about 2 x ea week, and walks sometimes.

The headaches have been difficult, which has cut back on activities and fun trips for the summer.

Later, Love, Faith

Since the change in medication for headaches, Rosie has had longer headaches, sometimes enduring all day long. Nothing to do but wait and keep on the medication for at least 10 more weeks to see if it will help. We had hoped to do some traveling this summer, but probably won't until we get a better result. It would be too hard at this time on Rosie. We do hope to start seeing Rafi for speech therapy within next week or two. He has some good ideas in helping Rosie to speak. Faith

Rosie had a good week, but still has pain in her neck from the surgery on her vocal chords. She went to LaCrosse one day, but the e-stim was too much for her, so we will wait until the 13th to go back and begin e-stim again. We had a difficult time saying goodbye to Mark and Sondra, as they are leaving for England. Sondra and Rosie learned a lot together, Rosie has come a long way in the past year. We'll miss her dearly.

We did go the the neurologist, headache specialist at Mayo on Mon, the 28th, and have a couple different meds to use attempting to get rid of the headaches altogether. He theorizes that the analgesics taken frequently can cause rebound headaches. So she is on different pain medication to see if this has happened.
Faith

We had a good week. Rosie's vocal chords are still sore when she talks, so I have been discouraging much talking. She could talk right when she came back from post-op, and we all were very excited with that. So once she gets healed from surgery, she will be talking again, although slowly, and softly. The medication, neurontin, we tried for her headaches did not work, so after about 6 weeks, we stopped it with our neuro's advice. We have to consider going to a headache specialist, neurologist. Too many doctors!

Rosie has been in a lot of pain since surgery, but is getting better slowly. today we had breakfast at Wimpy's and she was able to eat better. We haven't done much this week except let her rest all day. And keep up with the pain pills.

We saw the ENT Dr at Mayo, who did a video study of Rosie's vocal chords, and has said that the left is working so well he feels surgery to move the right in closer to left would be beneficial. June 7 and 8 we will be in Rochester, surgery on 8th. We are so thrilled, it's not the whole answer, but a great part of easier speech. It will still take a great deal of work for her speech to come back, but this gives her a better shot at vocalization. The Dr said these types of injuries take a LONG time to heal, don't we know? We are soooo excited about this, have prayed and pleaded with God for so long. We are going to Il for Memorial Day weekend, nice trip away for a few days. Graduation time. Love, Faith

Rosie and I went to Mayo clinic May 6-7, for an evaluation of current status, recommendations, and to discuss the possibility of getting treatment for her vocal chords. We then received a positive response from the speech therapist, who said she would be able to talk, but it would be hard work to get there. Also we obtained a referral to the ENT dr we saw last year for another eval, we are going Wed, May 19. The PT, and OT also saw her, as well as nuero-psychologist, and the 2 doctors from the brain injury program. The team also recommended we attend a headache clinic, or see a specialist for the headaches she still has each morning. The whole team thought she should get more therapy, and attend Courage Center to continue her progress.

Rosie has taken a drivers test through a rehab facility, and they said she could drive again. CAREFULLY. The opthalmologist agrees, so we go tomorrow to see the Driver's Examiner, to see if they will renew, or if she has to take another test to get her license (Old one expired).

We have a new PCA to take Rosie to LaCrosse, and help her with various things she does and needs, Natalie Crooks, a good friend of ours. Sondra will soon be moving to England to join her air force husband. That's about it for now.

Please sign Rosie's guest book before you sign off the site. We all enjoy your notes. love Faith

Family and friends-Rosie and I have been so busy lately!!! There's swim therapy a few times a week, for the tendonitis in Rosie's shoulders. We've started going back to LaCrosse, mom takes her one day and I take her one day. She has school and speech therapy weekly. The sun is shining, mostly, so we're taking some walks too. Rosie loves taking the dogs for walks and does quite well handling Brutus, the bigger of the two. She has even begun helping to get them on/off their tie outs to come in the house. She was a little fearful of them when we first got here, but has learned a few tricks to keep them from jumping on her, they love her so much, and are very protective of her when she's here. They love it when she spends the night, she likes to cuddle with them cuz they keep her warm.

We are also thinking about the time in the near future when I'll be leaving, this causes both of us to get a little teary, it will be so hard to say good bye to my adopted girl, best friend, shopping buddy and all around cheerer upper. We talk all the time about Rosie & Faith coming to visit, and maybe a time when Rosie could come by herself.

Wednesday we spent a few hours at Mall of America, shopping for Mothers Day/Birthday gifts for Faith. We think we found some winners. We had dinner, looked at prom dresses, we couldn't resist those. While looking at the beautiful white gowns Rosie said she couldn't wait for her wedding day, we talked about praying for the special man that will be Rosie's husband one day. What an incredible spirit she has.

Faith has been trying a new tactic for Rosie's daily headaches, she gets up around 6am, before the sun comes up to give Rosie pain meds. So far the days she has done this Rosie has been spared the terrible headaches that sometimes last up to 5 hours, giving Rosie those hours to be productive. Hopefully this is the way to keep them from coming at all, which gives Rosie the opportunity to explore more work/school options. Rosie is also taking most of her meds by mouth these days, when her intake of fluids improves there is talk of the NG tube being removed, please pray for her to be able to drink 3 cups of fluids or more per day.

That’s all for now, love from Rosie and Aunt Sondra

Rosie and I started the journey back to e-stim therapy today. Unfortunately, her swallowing of liquids has become much more difficult the past month, and so we are again going to LaCrosse 2 x each week. We so much hoped Rosie would be able to be off the tube soon, but seems its going to be delayed. We ask again for your prayers, and thanks for listening.

If you sign our guest book or e-mail, we would love to respond personally to you, Rosie is doing some e-mail now, and we'll keep in touch better. On a more positive note, the shoulder pain has gone, she has good range of motion again, and is doing swim therapy several times each week to gain strength. Faith

We have had about 3 weeks home from LaCrosse now to see if the drinking and eating continues to improve without the e-stim therapy. It has still been improving. Rosie can drink 2 cups per day now when she has plenty of time to work at it, instead of lots of other activities. She continues eating well, though not as quickly as should, and has widened her food choices considerably. The physical therapy has paid off, with good shoulder movement, still needs strengthening to continue healing. The ortho MD said it could take 9 months to heal.

Rosie's appreciating your e-mails and notes on her Web site. Takes her a long time to answer, but she does like getting "Mail." She has begun to show an interest in listening to books on cassettes, so we will order a couple and see how she likes them. Later, Faith

Rosie received an honorary diploma from her school, so she was able to graduate with her classmates last May.

She has continued making progress in many areas, cognition, vision, handwriting, self-care skills, eating, communicating. She "speaks" through her Dynawriter, types in her thoughts, and it speaks for her. She can use a speaker phone to talk to friends, although it is a slow process. Occasionally her own voice box works for several minutes on its own power!

Physically she has gained strength, but endurance hasn't returned. She needs a nap, usually. Short term memory still remains a problem, but has also improved.

The swallowing therapy continues twice per week, lots of travel time. Now Rosie can drink 1 1/2 cups liquid per day, and no longer gets supplemental food through her tube, is able to eat enough to maintain.

We anticipate more improvements to continue as she is slowly healing. Next week she'll get silicon contacts, and hopefully be able to then pass the driver's vision test, and slowly start driving again.

Many will say there is a window of time for healing. I don't believe there are such limits with good therapy, and a Great God. We continue to believe Rosie can go much further, and time will tell the story.

The electrode stimulation therapy is helping Rosie, after having 8 treatments. We will continue as long as it continues to improve her swallowing ability. I wish we had known about this a year ago! (Editor's note: For more information regarding electrode stimulation therapy, please email Faith Malek.)

When Rosie was in the hospital, the therapists wouldn't let her try to drink or eat because she wasn't talking yet. They were afraid of aspiration without vocal sounds to let them know how she was doing. If only she had been encouraged to try sooner, we probably wouldn't have seen her dysphagia get so bad. She could sip liquids in the hospital when I gave them to her. But I had to do it without their permission.

School has been going very well, very good to be back around supportive teachers and friends. We set up a schedule for 9 - 12 noon, 4 days each week. She has volunteers from her peers working with her on therapeutic exercises for reading, writing, eye exercises, physical activities, and art. We hope she'll be able to use a computer, regaining better use of her right hand. Rosie's endurance has picked up, no longer needs naps every day, but occasionally still rests about a half hour. We are hoping for huge gains this next year. But nothing is sure, no one can predict the long term outcome.

It would be great to hear from others who experienced AVM bleeds as teens to know how you have recovered. Some of you have shared your experiences from the first year, it would be good to hear about the 2nd year too.

She regained gross motor first, able to walk very well, (especially if shopping,) and her swallowing is better, but we still depend on a feeding tube for balanced nutrition and liquids. We have continued in OT, PT, and speech therapy. Rosie is able to take care of her personal needs, and showers now independently. She has poor short term memory, needs constant supervision to keep her involved in life, and help with maintaining a schedule of any sort. She is very loving, and cooperative. The biggest hindrances are severe daily headaches, questionable ability to read, and cognitive deficiencies. Eye therapy began July 25, to help strengthen eyes and we discovered she had suffered from double vision. We are discussing with her school and therapists starting back in school setting up special classes for Rosie so she can feel a part of her former surroundings and be with her friends every day.

Eating is still very difficult, she is starting to use her right hand more often. Vocal studies show her vocal chords are also very sluggish, so she cannot talk until there is more healing or surgery if necessary. Facial expression have improved to nearly normal, with a full smile most of the time, instead of half. We tried going off Sinemt for 2 weeks this summer to see if it actually helped her brain activity, and we found it made a huge difference. She was set back without the medication, so we restarted it and saw her almost immediately return to being more alert, able to play games, do simple math, and participate in her therapy. She lacks "brain power" without it. Spelling ability has returned, she can use a spelling board and some sign language to communicate. But it is a slow process for her. Whispering works a little, and sometimes we can lip read what she says. She uses appropriate gestures to say many things, so we can figure out what she needs.

Rosie's progress has been painfully slow in most areas. Showering freezes her, she is very sensitive to cold, and probably even the water on her head bothers her. Her mouth is very sensitive, she hates to brush her teeth. Still very difficult for her to control her mouth, drooling has continued, but lessened. The Cogentin helps to decrease saliva.

We had a huge setback in the spring with a MRSA infection in her 2 big toenails, went again through various doctors to find the solution. Took over 2 months of antibiotics to heal, and the removal of both nails.