Spring! A Time of Renewal

Serenaded by a motley choir of Spring birds, Riley and I walk what we affectionately call "the loop"; a familiar set of neighborhood blocks that encircle our home. These walks have become a nightly ritual for us and a blessing! Once "the loop" was an arduous hike for his small child's legs; host to his scooter, rollerblades, training wheels, and skateboard; and finally adorned with homemade jumps for his mountain bike. Today feels like we've gone back in time...the short walk has once again become an adventure for a set of 19 year-old legs rebuilding from Lyme.

Since returning from further medical appointments in both California and the Hansa Clinic in Kansas, Riley has worked courageously and painstakingly to maintain his daily physiotherapy, and to nourish his body with the first solid food in two years! His emaciated frame, now just a memory, is concealed by an additional 30 pounds of muscle tone and vitality! We talk expectantly about the day to come, when he will once again cycle, skate, ski, and golf!In my work as a psychologist, I have been privileged to witness acts of profound transformation. When it comes to Riley's phenomenal progress, however, I am still a bit stupefied! I still feel startled when he walks into the room and begins a conversation with me..."Is this my son who for two years could neither walk nor talk!"

It has been through the reactions of others that I've begun to shake off my stupor. On our daily walks, neighbors and friends who catch a glimpse of Riley, race from their homes to greet us with disbelief and in sock-feet! They burst into tears, hold his face tenderly in both hands, and hug him like Lazarus raised from the dead.

Some other signs of physical and cognitive renewal include:   

At the Calgary Auto Show

- going to Evan's recent plays and Kiwanis Festival performances
- attending a Flame's game with friends
- perusing McLaren sports cars at the recent Calgary Auto Show
- dining out with his Grandma in Canmore- first time at a restaurant in 3 years
- taking back some daily routines such as showering – without assistance
- Moving back into his basement bedroom in our own home
- Visiting  with family and friends
- Seeing "Skyfall" in the theatre

And- just this past week- disposing of the commode (bedside toilet), walker, and bath bench!

Although we rejoice in this miraculous rebirth for Riley, we are still working tirelessly to tackle the remaining symptoms that hold him back from an unhindered life. He is still plagued by circulatory issues including a hot, burning and swollen face that continues to be excruciatingly painful when he tries to smile, laugh or yawn. As a result Riley takes a portable fan everywhere he goes, and we travel even on the coldest days with the car’s air-conditioner on full blast.
 

So there will be more trips to Kansas in the next weeks and months, to safeguard Riley's recovery and further interventions to address his circulatory issues.

 Let us not lose sight, however, of the miracle that is taking place, and of the fact that Riley's care in the U.S.A. has been life-saving, prayers have been answered, and renewal is occurring! Soon, too, the recent snowfall will melt and all that has lain dormant in winter's icy grip, will sing itself to the surface and unfurl its’ vibrant colors.

With gratitude and thanksgiving to all of you who continue to walk so faithfully beside us on this   journey.

Terry

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Little medical update from Christine:



Post-Op-trying to stay cool with fan. Tired Momma.

Two weeks ago, Riley had the IV Port-o-Catheter surgically removed from his chest. For over 2 years he has been receiving IV medications through that port. It became infected and needed to be removed on an emergency basis, but he was ready for it to come out, so we are glad to have that over with! When we arrived at ER to address the infection, the triage nurse was certain we must be there for his burning, red face. She thought at first he must have had an allergic reaction to something. We assured her that his face was “normal” (ha ha) and that wasn’t the reason we had come. The team of interns, residents, ER docs, had a few hair-raising comments about his diagnosis of Lyme disease, but we were prepared for that, and managed to successfully dodge the bullets.

As many of you know, Riley and I travelled to a clinic in California in February. We were there for a week of extensive testing (specialized MRIs, CT scans, etc) to determine the condition of the veins in his brain, neck and chest area. With some Lyme patients, the veins become compromised and constrict blood and oxygen flow (among other things).This can lead to autonomic nervous system issues-thermal irregularities, including cold extremities/ heat intolerance, fatigue, sleep disturbances,  as well as neurological issues, all of which Riley has struggled with these past 3 years.

The testing did confirm issues, and so while we were there Riley underwent a surgical procedure to address this constriction. He has noticed a dramatic increase in blood flow to his hands and feet, increased mental clarity, better sleep, improved eye strength and also increased muscle strength. The facial issues (what we were really hoping would change) have improved minimally. CT scans have shown there is still a problem in the upper jugular vein at the side of his skull, near his jaw bone.

So –more tests, more appointments, more decisions to make as to how best tackle this very debilitating symptom that remains so stubborn- and of course, with no medical specialists here who even believe he has Lyme disease, and how that has impacted his health in so many areas. We are thankful for the couple of private doctors here who work closely with his team in the USA, but in terms of specialists and recognition of the care he needs- that is still non-existent.

Our days are very full with the business of rehabilitation. It is a long way up from Ground Zero.
Riley got sick a day before his 16th birthday, and he is now almost 20. That is a huge passage of time, and the rehabilitation of body,  mind and spirit- is really time consuming and delicate.
As our doctor in Kansas has said, we need to pay attentiion to the trauma of this experience and walk gently and patiently with all aspects of healing.  We are all learning how to pace our days, how much is "too much", and when and how to help Riley reconnect with the world around him.

He is very busy with physiotherapy, occupational therapy, massage, doctor appointments, and other therapies deemed appropriate.
We are inpatient at times for "all things Lyme" to be a distant and faint memory.
We are thankful for each step forward.

Warmly and with appreciation for all of you
Christine