Tuesday, October 31, 2006

Michael Update - 31 OCT 2006

Long QT Syndrome, Type 3

When Michael underwent blood testing for the genetic defect, Long QT syndrome, Type 3 (LQT3), that caused his mother's cardiac arrest on February 23, 2006, he had a 50/50 chance that he had not inherited the same defect. Richard received the results of Michael's genetic testing this morning and it confirms that Michael has inherited the same defect.

We have been researching the consequences of this possibility for months, and are all prepared for what we have to do next as a family to insure Michael's health and well being, despite the gravity of the test results. As you can see from the picture Michael has been helping us with the research and we are confident that the future holds the promise for his health and happiness.

What is the QT Interval?

The QT is a time interval on an electrocardiogram tracing. The heart's natural pacemaker fires an electrical impulse to stimulate the heart to pump. The QT interval represents the electrical activity that passes through the heart muscle causing it to contract and pump blood through the heart. The QT interval continues until the end of the contraction when the heart muscle relaxes. The natural pacemaker then produces another electrical charge that stimulates the heart to pump again.

Long QT syndrome is a disturbance of the heart's electrical system. There are no physical abnormalities to detect on physical exam, only a subtle electrical disturbance on an EKG. Please note, 10-40% of long QT syndrome patients have a NORMAL QT interval on initial evaluation, so a normal QT does not exclude the condition. Long QT is caused by abnormalities of microscopic pores in the heart cells called ion channels. Ions such as potassium, sodium, calcium and chloride pass back and forth across the heart cells membranes through ion channels. As they do, they generate the electrical activity that controls the heart's beating. These electrical signals are detected on the surface of the body with electrodes and recorded by the electrocardiogram (EKG or ECG). Potassium and sodium ion channels are two of the sites affected in LQTS. The abnormal channels prolong the process of the electrical charge from the pacemaker passing through the heart muscle and therefore, lengthen the QT interval. This defect can cause the heart to beat abnormally leading to a cardiac arrest.

What are the symptoms of Long QT syndrome?

Sudden, temporary loss of consciousness (syncope) is the most common event. About ½ of LQTS patients NEVER experience syncope. Others have one or many syncopal events or cardiac arrest possibly resulting in sudden death. These events usually occur without warning. They are caused by a very fast cardiac arrhythmia known as torsade de pointes. Typically, the onset of symptoms is earlier in boys than in girls. Events may occur in the twenties, not so often in the thirties, and rarely past 40 years of age.

In patients who experience syncope only, the torsade de pointes rhythm spontaneously returns to normal, usually within about one minute, and the patient quickly regains consciousness, without disorientation or confusion. Some patients experience fatigue afterwards, others feel fine and resume their regular activities. On the other hand, in a minority of patients, the torsade de pointes rhythm persists then degenerates into the heart rhythm known as ventricular fibrillation, which rarely reverts back to a normal rhythm without medical intervention. If the ventricular fibrillation is not converted, usually by electrical defibrillation, the outcome is death.

There are many subtypes of LQTS and all but one involves an abnormality in the potassium channels. Long QT Syndrome type 3 is the only one to involve the sodium channels. In these subtypes, syncope often without warning symptoms, occurs during or just after physical exertion, emotional excitement, or sudden auditory arousal (such as a doorbell or alarm clock) but may occur in sleep or at rest. Conversely, in a simple faint (known medically as a vasovagal event) is primarily due to a fall in blood pressure accompanied by a slowing of the heart rate caused by pain, injury, nausea or stress. There are warning symptoms to fainting such as dizziness, blurring or blackening of vision, tingling or sweating, for seconds to even minutes prior to the syncope. In LQTS type 3, there are rarely any warning symptoms and the event occurs during sleep or at rest and is usually catastrophic.

Michael had his first appointment with his cardiac specialist, a pediatric cardiac electro physiologist, Dr. Sampson, before he was 2 months old and his follow-up appointment was when he was 6 months old. He had no abnormalities that showed on his EKG's at either visit, which was very encouraging, but the gold standard of his own genetic test has indeed identified the inherited abnormality. Michael has been on daily medication to prevent abnormal heart rhythm; since Lisa's genetic testing came back showing LQTS type 3. Michael has never shown any symptoms, but then neither had Lisa. Now that Michael is known to have the defect he will be examined again tomorrow by Dr. Sampson and another EKG will be done. His medication will be changed to one that is specific to his abnormality and a treatment plan will be established. All children without symptoms should be treated because some will become symptomatic and sudden death may be the first symptom. At present, it is not possible to tell which child is destined to have symptoms.

How can Michael be Protected?

** No medication misses!! Treatment for LQTS is effective in most instances by administration of daily medications.

**See doctor regularly for follow-up, even more often during periods of rapid growth. Growing children need medication dose changes regularly.

**Be supportive when the doctor advises "no competitive sports for Michael". Usual physical activities are suitable but competition can be dangerous.

**Channel Michael's energies into sports without intense physical demands (golf, for example) or non-physical activities.

**Have Michael avoid caffeine and over-the-counter stimulants (cold pills).

**Keep abreast of new research and treatment options and be proactive with the medical team.

**Hugs and kisses and Love, Love, Love

Addendum:

I have agonized over not having been able to save Lisa's quality of life when Richard and I fought to keep her alive on the night of her arrest. But, Lisa's grit and determination as she struggles through her rehabilitation has given Michael the greatest gift a mother can give. Michael will forever be protected with the knowledge that Lisa was able to give him with her genetic test results, which literally hold the promise of saving his life. A mother couldn't be more proud.

Sherry Wintory

– mlwintory@msn.com




Monday, October 30, 2006

Lisa Today - 27 OCT 2006

What a mixed bag of treats and tricks for our little family this, Michael’s first Halloween. The treat has been Lisa’s been stable and doing well since finishing off her course of antibiotics last weekend. No fevers, vomiting or its evil companions- aspiration and infection.

At midweek I visited with Lisa’s neurosurgeon, who, after consultations with colleagues and much review and reflection, concluded that Lisa would not benefit by relieving the small amount of pressure caused by Cerebral Spinal Fluid (CSF) reabsorbing too slowly into the body. The thought had been that a shunt draining excess fluid might help Lisa regain some of her ability to interact with us. Dr. Theodore believes that Lisa, upon closer examinations isn’t showing the kind of impairment typically caused by hydrocephalus. Dr. Theodore is also concerned about a particular risk as well. Draining CSF may cause the remaining healthy brain matter to fold in on itself tearing tiny blood vessels that could cause bleeding in Lisa’s brain. These subdural hematomas can be treated but would be a significant complication and setback that simply outweighs any possible benefit in Dr. Theodore’s view. While I know Lisa would want me taking reasonable risks to get back her ability to participate in her world, this doesn’t seem like one to me, so ‘nuff said.

Ruling out the shunt put us back on track to work on the mix of medicines in Lisa’s pump- or so I thought. We’d been on hold for infections, antibiotics and the shunt assessment but at midweek, we got our first trick of the week. Lisa’s blood pressure dropped due to her becoming dehydrated. The dehydration was a likely caused by her tube feeding being held during the day, so when she was loaded up with fluids her BP popped back up. Still, the medicine that has helped Lisa’s spasticity, clonodin, lowers blood pressure so her med mix is on hold for the time being.

This puts Dr. Theodore and his colleagues back at the plate. Lisa’s brutal muscle tone is threatening her ability to bear weight on her feet. If medicines can’t relieve the spasticity by chemically blocking the messed up signals from damaged portions of Lisa’s brain than the surgical options used before baclofin and clonodin (and still used regularly in pediatric cerebral palsy cases) are still available. Lisa will be evaluated next week to see if these may be of some help.

Tough stuff! But, again all more or less than what we’d expected. I figured Lisa’s due to begin hyperbaric in a few weeks, so that gives us some time to work through these issues to see if we couldn’t get the long hoped and prayed for breakthrough.
So, then comes the big trick: Lisa’s caregivers have decided it’s time to discharge her from neuro rehab, at least until the hyperbaric starts at the end of November. I had been assured that I wouldn’t have to worry about Lisa being moved out before then but other concerns have arisen. Mostly, the concerns are the original ones. Lisa came to the unit, not to rehab but to protect her ability to rehab, with the hope and expectation being that the baclofin pump would work its magic and we’d get to work. The result after four months has been a stalemate without significant progress, at least as measured in terms of regaining function. The continued use of restorative therapists to maintain the status quo has taken a toll on folks who’ve struggled mightily on Lisa’s behalf so if they need a break I want to at least know where they have in mind for us to go.

While we’re deep in discharge planning for home modifications and equipment acquisition, Lisa is not medically stable enough to come home. The obvious choice would be for Lisa to rejoin her old friends back up at Select Specialty Hospital, the long term acute care facility that was our first home at St. Joes from the end of March through June. The therapists and key members of the nursing staff know and care deeply about Lisa. Lisa’s doc’s here would be her docs there as well. Her trip would be in a gurney, not an ambulance.

Time for the next trick. The corporate folks at Select won’t accept Lisa back as a patient. The problem isn’t money, and she’s medically appropriate, but they’ve asserted they have the right to refuse a patient and they’re refusing Lisa, “respectfully.” I’m pretty certain I know why this has happened and I’ve reached out to folks I know in Select to see if I can do anything about this, but at least for another week or so I really won’t have anything to offer them.

All the alternatives are ugly. There is one medically appropriate facility, about which we’d heard bad things, but Lisa’s docs are comfortable with, but they don’t take our insurance. Negotiations to follow.

“… in sickness or in health…” Vows Exchanged. Lisa and Richard. 10/09/ 2004I really can’t put a happy face on this. I’d hoped to use these few weeks of anticipated medical stability to really see how Lisa could do with traditional approaches before the hyperbaric treatments start. I also wanted to concentrate on learning and acquiring what I need to care for and protect Lisa at home. Now, I’ll need to do what I’ve done in each new placement to make certain Lisa’s safe, and cared for by folks who care about her. Fortunately, I’ll be able to count on Lisa’s Ranger’s, Yolanda and the other friends and family I’ve learned to trust to do what Lisa needs.

Another sad transition happened this week I’d been putting off. Lisa’s had no stronger group of friends than her ICE co-workers. Her supervisors, Pat and Kimberly have, in a word, been super. Her federal colleagues, some, friends known to her, others we have never met, have all become family. They (along with many of our other friends in federal service) offered prayers, cards and notes of support and, to help us keep our roof over our heads, donated their own annual leave time. That’s right, while they could have used their annual leave to spend time in Las Vegas casinos, the parking lot of Hoover dam, or the opera in Tucson, these folks instead sacrificed so that Lisa will have her home to come home to.

I’ve been forced to acknowledge that whatever improvement Lisa makes, she won’t be returning to work as a trial attorney for ICE. Applying for social security disability wasn’t too hard; their standard is 5 months of disability. But as Lisa’s donated time is running out, I have to actually end her career as a prosecutor, in order to apply for her disability retirement. I’ve used the months of donated leave the way they were intended, to buy time for Lisa to prove her first neurologist who said Lisa wouldn’t ever be a lawyer again, wrong.

Now for the last trick: turns out the time for the paperwork I submitted this week is two months on an expedited track, our donated leave time will run out some time in November. Well, this one’s on me. I just couldn’t bring myself to do this any sooner. -- Richard

On the home front, Michael discovered that apples are not only applesauce. Here is proof:
Michael in the last two-weeks has become a Tasmanian devil. He stands in his walker and runs around like a whirlwind. Wants to touch everything-taste everything-see everything and feel everything. He discovered that Tosh our Scottish terrier has a beard worth pulling, a water bowl worth tipping and food worth biting. His four teeth work like a beaver on everything. He loves graham crackers, Melba toast, Matzos, and expecially bananas. He wakes up smiling and melts our hearts. He continues to sleep throughout the night, loves his naps and car rides. He is an expert at charming, literally everyone he meets and gets perfectly proper adults to make funny noises and faces for his entertainment. I am so proud that Richard includes him in every one of his trips to be with Lisa, and I know in my heart Lisa feels their presence.

Michael – mlwintory@msn.com

Sunday, October 22, 2006

LISA TODAY – 22 OCT 2006

ST. JOSEPH MEDICAL CENTER
BARROW NEUROLOGICAL INSTITUTE -- PHOENIX, ARIZONA

Hey gang, Richard here from our 2nd home in Phoenix, Lisa’s room at Barrow Neurological Institute. I’m sorry I’ve been slow in updating. I’d hoped to have more hard news this week but we’ve been in a holding pattern, so I’ll tell you what I know, and with Dad’s help fill you in as more details become clear.

I have time to do this now because Michael’s asleep in Lisa’s bed this Saturday morning. Lisa has therapy this morning in about 20 minutes so I thought I’d get started.
This weekend, Lisa’s finishing another round of antibiotics today under the care of our favorite bug doc, Dr. Jones Kumi. The culprit again was Lisa aspirating a small amount of her stomach contents. She vomited when being repositioned during therapy. The balancing act of nutrition, therapy and digestion is complicated by Lisa’s difficulty in closing her larynx tightly enough to seal off her lungs. Lisa’ must receive certain amounts of tube feedings and exercise to protect her from pneumonia, bed sores etc and to advance her recovery. Her nutrition and exercise schedule aids her digestive process, which in turn, keeps everything else …going.
To get Lisa enough calories thru her tube slowly enough to prevent vomiting and its attendant risk of aspiration requires her to be fed from 5:30 pm to about 8:30 a.m. This new schedule has eliminated her lunchtime session which had been putting a large amount through the tube quickly and contributing to the problem.

Because Lisa tends to get nauseous whenever she’s moved, having her stomach empty has been really helpful during the day. Lisa is turned from side to side throughout the night, again to protect against bedsores and pneumonia, but her night staff takes care to avoid problems.
To add another level of protection Lisa’s trach was switched to one that has an expandable cuff to protect against stuff going down the wrong way. The cuff is deflated to let Lisa vocalize as she is able. The result of all this work is that as Lisa and her team finish off this infection, we’ll have in place a new comprehensive plan to prevent another.

Two-weeks ago during Collin and Suzanne’s visit from Norman, Oklahoma, Lisa was getting a scan done to determine if she might benefit from relieving pressure caused by a suspected build up of fluid in her brain. The scan revealed a couple of things. First, that this cerebral spinal fluid (CSF) is not entering the ventricles in her brain, a good thing. Second, the rate at which the CSF is being absorbed back into the body is slower than normal and this is causing an excess of fluid and some pressure. To understand the significance of this, let me flash back.

Some readers have been confused about when and why Lisa’s progress was stopped and her condition worsened. We knew some of this and may now know more. Beginning in the end of April and during May Lisa’s spasticity began to stiffen her limbs and joints. Serial casting was applied by her therapists up at Select Specialty Hospital to try and hold her ankles and feet in a neutral position. Lisa’s doctors suggested an implanted pump to put Baclofin into her CSF was necessary to protect her from the increase in muscle tone blocking her further recovery.
Lisa’s mother and step-father were with me as we witnessed the effect that the rising tone was having on Lisa. It was then we all learned the doctor’s recommendations to implant a pump to administer Baclofen into her spinal fluid. Lisa’s mother and step-father were present with me when the pump was implanted on May 26th. Everyone had the greatest hope that her worsening condition would be relieved so that Lisa could rehabilitate enough to benefit from a move down to the Barrow Neurological rehabilitation unit. Unfortunately, Lisa’s rigidity continued to increase through the first week of June despite a visit from her Uncle Rex and even after the pump’s medicine level was steadily increased.

Lisa did of course move to Barrow’s (BNI) on Father’s day, June, 23rd, but as I settled Lisa into her room that weekend we knew her move wasn’t to begin rehab. The move was to protect her ability to rehab from the spasticity. The Spasticity continued to increase since before that day Lisa’s mother, step-father and I gathered, while her pump was implanted. Only much later the advance of her spasticity was stopped (not relieved, mind you) only by adding clonodin to the Baclofin in her pump in just the last few weeks.

Along with the increase in Lisa’s muscle tone came a decrease in her ability to respond to questions with nods and eye blinks. The decrease hasn’t been relieved by the clonodin and appears to be independent of Lisa’s spasticity. This troubling development means that unlike back in May, we don’t know at what level Lisa’s now functioning. Her recent ability to respond to requests to kick her legs offers the first evidence of responsiveness at any level since the beginning of July.

So with this background, back to the cerebral spinal fluid (CSF) pressure build up in Lisa’s brain. This pressure may be a contributor to Lisa’s diminished and delayed responsiveness. Medical studies and the experience of Lisa’s doctors suggests a pressure sensitive valve implanted in Lisa’s head and draining thru a tiny flexible tube in her abdomen can safely relieve this pressure and perhaps help regain some of her function.

We’ve been waiting the return of Lisa’s neurosurgeon, Dr. Theodore and his analysis of the scan results to learn his thoughts on the situation. If he recommends relieving the pressure, a “shunt” can be implanted and hopefully, enabling Lisa to move forward within a week or so.

One way or the other, once this is resolved, Lisa’s pump will regain center stage as the mix of baclofin and clonodin will continue to be adjusted to see if we can not only stop the increase in Lisa’s muscle tone, but roll it back. In her present condition, Lisa’s ankles in particular remain at serious risk and her overall rigidity will prevent her from making significant improvement.
Other treatments are still available and we’re awaiting final approval for Lisa to receive hyperbaric treatment here at St. Joseph Medical Center sometime in November to December.

Some family and friends have felt that their inability to be with Lisa for a variety of reasons might have been responsible for the setback in her recovery. Nothing could be further from the truth. Lisa’s downturn began when she was surrounded by family; mother, step-father, uncle, nephew, father-in-law, mother-in-law as well as her son and husband.

Of course, the absence of all of these folks and other family and friends at one time or another has no more worsened Lisa’s condition than their presence was the cause for the downturn starting or their absence was the cause for her recent improvement.

The fact is that Lisa has suffered a very serious injury and its impact, assessment and treatment require medical interventions like adding clonodin to her pump. Family and friends can strengthen these interventions through prayers and support for those providing the care and my efforts to make the right decisions, not distress (or worse) over their own absence.
Well, it’s now Sunday evening. Lisa, Michael and I spent most of the day outside in the lovely courtyard here in neuro rehab enjoying the marvelous weather. Michael can now stand on his own holding himself up with only one hand leaving the other free to grab and destroy anything in reach. The staff, other patients and their families are quite taken with his ability to speak his mind. He frustrated my “cry and we leave” policy in Mass last night by just amiably “chatting” but never crying during most of the service. Our friends and Lisa’s Rangers Bruce and Laura were ready to safeguard Lisa during the Mass but their ever ready service wasn’t required..

Father Milt is more than understanding. Earlier, when Lisa and I were working out all this, she’d been willing to have the policy of “cry and we leave church” as long as we followed her policy of “we go to church”. When Lisa and I started dating she was attending the Crossings in Oklahoma City, long since having abandoned the church of her youth.

We both want to raise out child in a religious home. We’d run out of time for the classes to have the Catholic wedding we had originally planned. We’d bought all the books; it was my fault I didn’t get with a priest in time. But Lisa wasn’t letting me off so easy with our son. We’d asked our friends Jack and Napua Davis to be Godparents and we’re expecting Michael to be baptized here in St. Joe’s in November. Lisa will be pleased, I’ve kept my word.

Wednesday, October 04, 2006

Lisa today, October 4, 2006

Neuro rehab, barrow neurological institute, st. joseph's hospital and medical center, phoenix, az

I'm happy to report that Lisa's had the best few days in therapy she's had in months. For the first time since Lisa's spasticity got out of hand in mid-may requiring the implantation of her baclofin pump, Lisa was able to initiate slight but oh, so encouraging, volitional movement in her legs on Friday and again today. Also, Lisa's new physical therapist Rosemary and I both felt and observed Lisa respond to a request to turn her head to her right (against the pull of her spasticity) with a slight but perceptible turn. While Lisa's still not able to again consistently blink or nod yes/no answers yet, and she is still far stiffer than she was before her spastic quadriplegia struck, these are very promising gains.

I'm like you; I've gotten spoiled by my dad's postings. Even when I've written the update, I've forwarded it to him, he purtys it up and posts it so that I can send it while still in Lisa's room in at bni. Since he won't be back till the end of the week I've had to wait till I'm back in Tucson and on his computer to post the good news from the last week.

Several factors have contributed to this small but significant upturn.

First and foremost, Dr. Kwasnica's groundbreaking strategy of adding clonodin (I'd originally understood it was clonopin) to Lisa's baclofin pump has begun to help her more than the baclofin alone. Dr. Kwasnica ordered Lisa's pump meds increased another 10% on Friday. This is consistent with Dr. Kwasnica's strategy to "find the ceiling" where Lisa will hopefully get relief from her spastic quadriplegia through these meds.

Lisa's muscle tone has risen and fallen based on whether she's sick or uncomfortable. So, it was also important that last week Lisa completed the course of antibiotics to clear the most recent infection in her lungs. This permitted the removal of the pic line (the souped up IV line dad's previously described).

While Lisa is breathing room air on her own, the mini-trach inserted several weeks ago is now available to help protect against further infections. More than just another "hole" in Lisa, this critical device is currently capped, and doesn't prevent Lisa from speaking when her condition will permit. In fact, no longer "stuck" in silence, Lisa has been vocalizing more in recent days, mostly when startled and when stimulated but still using her vocal cords again.

Contributing to Lisa's comfort and rehab, she also had the most recent serial casts removed from her feet and ankles last week. Reece the Zen serial caster had once again done his magic and gotten Lisa's feet and ankles close enough to a neutral position for her to use the standing frame in her tennis shoes again. New splints are being custom made for Lisa by Sam, the Reece of spring loaded splints (called AFOs, I know it's adjustable something orthotics, I keep forgetting the "f"). Sam made the splints Lisa has been using, but as her feet now turn in as well as down, the original AFOs put too much pressure on the thin skin on Lisa's feet (who knew Lisa had anything but thick skin?). With an extra hinge or spring, the new splints should offer forgiving resistance against the spastic pull. Before leaving though, Reece did put a new serial cast on Lisa's left wrist to prevent it from developing crippling contractures. Based on how well she slept over the weekend, this cast was much more comfortable for Lisa than the wrist and arm splints it replaced.

So what was the result of these positive developments? First, Trent, Lisa's caring and steadfast occupational therapist, reported Lisa had been initiating volitional movements in one of her arms for him. Trent wants to see more before he calls it a trend, but it's a good sign.

Next, in Lisa's physical therapy with Rosemary, Lisa's new and enthusiastic physical therapist, big little things happened. Rosemary's hair is red like Lisa's and her flattening vowels like pancakes reveals her to be a Chicago native before you ask. Rosemary scored points immediately by talking with Lisa's therapy crew from up at select to see what Lisa doing before the spasticity kicked in. Based on input from our friend Marty, Rosemary sought to get Lisa in a gravity neutral position to see what she could do. Adding a new trick to Lisa's therapy, Rosemary placed Lisa on her side and lifted her leg in a sling thus freeing her from limitations imposed by gravity and her muscle tone. Rosemary than asked Lisa to kick forward and she did. Several times. To make certain this was intentional effort, Rosemary asked Lisa to kick backwards and she did. Several times. Today, Rosemary told me Lisa was able to kick more times at her request. Increasing stamina is another good sign.

Rosemary also got Lisa back into the standing frame dad's described in earlier updates. This thing raises Lisa up from a sitting to a standing position permitting her to bear weight on her legs, feet and ankles the way God intended. Wonderful stuff for fighting spasticity and contractures. Lisa's heart rate was steady, she was alert and it was while I was standing behind her holding her head upright she turned her head right at Rosemary's request. I felt it, but didn't say anything so I wouldn't be accused of crazy husband stuff when Rosemary said, "I'd swear Lisa turned her head!" I know frequent readers remember this is how Lisa was communicating with us before the spasticity got out of control, so again, a good sign.

Our friend Yolanda stopped by on Friday as she does through the week and helped Lisa with her range of motion exercises. She feels the tightness but also feels the improvement. Yolanda's a pretty special person, we met her while she was a rehab tech up at select, and after she left up there I asked she continue to work with Lisa. Despite having recently diagnosed serious illness in her household, her love for Lisa has led her to become an important member of our family. Her efforts along with Lisa's Rangers have kept Lisa limber enough to participate in Rosemary and Trent's therapy. I hope you'll keep her and her family in your prayers.

On other fronts, we're still waiting for the internal review board to consider Lisa's doctor's requests to use st. joe's hyperbaric chamber to treat Lisa. Before we re-name them the eternal review board, I remind you we're not ready for Lisa to get hyperbaric until we see where the new pump mix gets us.

Lisa will receive a pretty sophisticated test today-Wednesday-to determine if in fact she has excess fluid exerting pressure on her brain. I mentioned in my last update that relief of pressure, if it's there, can produce some improvement in some patients. As promised, Dr. Theodore stopped by and visited with me about the procedure and the unique limitations he and his colleagues are working with because of Lisa's defibrillator and the level of baclofin Lisa's receiving in her cerebral spinal fluid. This test they've settled on will tell Lisa's doc's what they need to know safely and soon. I'll keep you posted.

I must say though that Dr. Theodore is something else. He's a brain surgeon who looks like he could have played linebacker in college. But, contrary to what I expected, he's soft-spoken, incredibly patient and thorough with his explanations and makes it clear he has spent some real time thinking about Lisa as a person, not just a patient. There are many blessings we've had along with the bad stuff but certainly, starting with Dr. Kwasnica, who got us here in the first place, the humanity in addition to the competence of Lisa's doctors, therapists, nurses and aides continues to gladden and humble me.

And just to round out the good news, Maggie the wonder dog has bounced back from her first round of chemo for her lymphoma and is doing great. Our great neighbors, Jim and Ann, nursed Maggie while I was with Lisa and fed her meds in braunshwieger (sherry's disgusting but effective suggestion) and they are going to bring Maggie up for a visit this weekend.

The remission of Maggie's cancer is just in time, Lisa's favorite nephew; Colin and her sister-in-law Suzanne are coming for a visit for Colin's birthday and our wedding anniversary this weekend. Dad and Sherry will be back with Michael from wrapping up their affairs in Illinois to officially start their new lives with us in Tucson, so after a strenuous week in therapy Lisa will be able to spend time with kids, kin and canine, a combination that's hard to beat. r