CategoryFrom Diagnosis Onward

Summer 2016

It’s been a busy and challenging summer, though thankfully Heidi has been healthy for most of it. She continues to grow stronger (and heavier!). She turned three at the end of June and had a wonderful birthday, complete with her siblings, a movie and picking out her own present at the mall. Heidi continues to make progress and gain strength. The company that developed Nusinersen announced on August 1st that it will file for FDA approval and implement an Expanded Access Program for the drug prior to approval. Rick and I spoke to Heidi’s doctor in Orlando about the implementation of the EAP. The issues are complex and I pray that careful consideration of them will result in as fair of an implementation of the program as possible. SMA can’t wait any longer.

Heidi received a dose of Nusinersen on the Tuesday after Labor Day in Orlando, where we enjoyed a brief vacation. She came home with a cold, but her cough seems stronger and more productive. It’s been an exhausting few nights of CoughAssisting her throughout the night, then dragging through the following day at work. I think she has turned the corner for the better, though, and I look forward to more restful nights.

At the beginning of the summer I began working on litigation support projects outside the home and deeply miss the time I had at home with Heidi, as well as extra time I had in managing her care, her appointments and interacting with her therapists. Rick began working at Lowe’s until he gets another job in his field and his hours are unpredictable. My opportunities to get to church with Cassie have decreased due to the unpredictability of our schedules and I’ve missed the church community. I have been able to attend a couple of evening meetings with a support group that helps me deal with challenges related to Heidi’s condition and otherwise. Writing’s still the best therapy, though, and I’ve begun working on another book.

Time for promoting my book, Juncture at the Still Point, has been affected by events of the past few months, but sales are steadily increasing. I’ve learned that “key words” on Amazon are indeed key to sales and plan to publish a couple of novels I had written pre-Heidi, as well as the nonfiction book I’m working on now, under pseudonyms. It will be an interesting experiment.

Garyn turns 24 at the end of this week. We will be celebrate her birthday on Friday. With the holiday season soon coming, I’m so looking forward to Heidi enjoying Halloween and Christmas! This is the first year Heidi will really be able to understand what’s going on with the holidays. She’s already gearing up for Halloween, binge watching episodes of Casper and practicing her “spooky” noises. I hope it’s going to be a real treat for all of us.

Wishes to family and friends for a wonderful fall season and thanks to everyone who has kept Heidi in their thoughts and prayers.

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Spring 2016

It was a rough spring, no way around it. After Rick getting laid off, a couple of terrible colds were brought into the house. Heidi received her first infusion of a bone strengthening drug at the beginning of April, which required hospitalization for that initial dosing. Shortly afterward, Heidi got the most severe cold she’s had in a year and a half; we feared she was going to end up with pneumonia. She recovered, however, and we were able to reschedule her clinical trial infusion a few days later. Another cold hit our home in May, but fortunately Heidi handled that one better than the rest of us!

I published my book Juncture at the Still Point on Amazon in March, but have had little opportunity to promote it yet. With a fairly rough spring behind us, we are recommitted to keeping colds out of the house and getting some income coming back into it!

Despite the colds, we managed to have some good times; Heidi continues to gain strength, even after those colds!

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Pics from Winter 2016

It’s mid March and winter’s over in North Carolina this year. I’m afraid we’re in for a terribly hot summer with mosquitoes the size of bumble bees. It was a nice winter though, mostly warm and short. Heidi used the Bumbo wheelchair Rick made her until we got her Panthera Micro last week (definitely the most excitement we’ve had in the blessedly uneventful past few weeks!) This first pic shows Heidi in the Bumbo wheelchair and the last one shows her in the Panthera. She was so happy to roll up to the keyboard and start banging on the keys like any normal kid! As we try to settle back into life after Heidi’s diagnosis, we’ve enrolled Cassie back in soccer and are looking for things to keep her busy when school’s out.

It looks Juncture at the Still Point will be published next week. Some reviews have come in and more should come in over the next several weeks. I was going to hold off on publishing until more reviews came in, but a couple of the reviewers have posted their reviews. I don’t want someone to read a review and then not be able to buy the book. It will be available in hard copy and on Kindle; please buy a copy at Amazon.com! We are making efforts to rebound from the past couple of years’ financial consequences. I’m hoping the book might be picked up by a certain editor at Penguin Random House, but whatever happens I’ll never regret having written it. The process was essential in my acceptance of Heidi’s condition and the changes to our lives.

With the warm weather here and Easter coming, we are looking forward to getting Heidi out in the Panthera and enjoying the outdoors before it’s too humid and stifling to move out there. Happy spring to everyone!

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Christmas 2015

Well, we made it through the holidays, though fatigue from the trip to Orlando between Christmas and New Year’s did take a toll! We had a Christmas Eve dinner with Garyn, Adrie and Cohen and were able to visit with Rick’s family on Christmas night. These were nice times with family. We were unfortunately unable to visit my family as we mourned our first holidays without my brother. May peace be with Tina and their family. We all miss Chris deeply. The holidays will never be the same without him with us.

We are waiting to hear from insurance and Wheelschairs4Kids about prospects for assistance in getting Heidi’s Panthera wheelchair. In the meantime Rick has made her a makeshift wheelchair with her Bumbo. He also completed a rolling table for her that has a shelf underneath for medical equipment and other supplies! Heidi is a lucky girl to have Rick as her father. I appreciate all he does for her!

We are settling into our new year with Heidi’s wonderful new nurse, Rose. I hope to get some paying jobs over the next few months as I await book reviews and feedback for my recently completed book about Heidi, Juncture at the Still Point.

In the meantime, Never Give Up!

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Fall 2015

It’s been an odd autumn of heavy rains, some days of sun, extremes of cold and heat, but mostly a wonderful one for Heidi!

In October, Heidi and our family went to Florida for her clinical trial evaluation. Also at this visit Nemours Children’s Hospital had arranged for the clinical trial families to meet together at Give Kids the World and SeaWorld theme parks! It was a wonderful, wonderful weekend… Heidi loved all of it, but the most exciting part of that weekend turned out to have nothing to do with the theme parks.

On Saturday morning at Give Kids the World, our group was given breakfast to start off the day as one of the organizers announced the weekend agenda. We ate in a large conference-type room where there was plenty of room for all the large strollers loaded down with medical equipment. One of the other child trial participants can use a lightweight wheelchair. He had been an unusually strong Type 1, really a borderline Type 2, before entering into the study. At the 2014 Families of SMA Conference, his parents had placed him into a vendor’s Panthera wheelchair and he had taken off. At that time Heidi couldn’t sit up at all and I didn’t even entertain the thought that she too might ever be able to move such a chair.

But here at this breakfast on the morning of October 17th, 2015, the boy’s family allowed us to put Heidi in his wheelchair. Heidi placed her tiny hands on its wheels and, as if by instinct, began to push it forward! I cried with joy, unable to believe what I was seeing. She moved herself around the room, elated, for a long time, supporting her upper body and head, increasing in her confidence and steadiness. So now we are in the process of trying to get our insurance to pay for one of these chairs and making alternative plans to rob a bank if they don’t! (That’s a joke… sort of…)

The girls had a nice Halloween and the following week we finally got Heidi’s Softub therapy pool up and running!… Thank you Shane Burcaw and LAMN foundation! Pic below!

I took Heidi to an appointment at Duke Assistive Technologies Clinic. The Speech Pathologist there introduced us to a device she feels will augment Heidi’s communication abilities, in conjunction with continued speech therapy and some basic sign language. She looks at Heidi as an individual and acknowledges her likely future need for a hybrid communication system. I was quite relieved after meeting the Speech Pathologist… none of the previous specialists identified Heidi’s needs in this same way that I see them and it was a huge relief to hear a professional validate my opinions without even having described to her what they were.

Finally, there was a nice Thanksgiving with family. Now we are looking forward to Christmas!

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July-August 2015

Another exciting and busy summer! Since the SMA conference and trip to Florida in June, we spent a wonderful week in the mountains at Camp New Hope and returned to Florida again in August for Heidi to get the ISIS trial drug. Maybe we did just a bit too much… we have vowed that next summer won’t be so hectic. Heidi continues to respond to the trial drug. She does not require ventilation. She moves more, manages her secretions, has good head control and can sit with support. Though generally happy, she is definitely in her Terrible Twos! Like any two-year-old she fusses when she is frustrated in her communications or doesn’t get her way. But she has it pretty good and, for the most part, she knows it!

Cassie has started back to school and things are settling down. I’ve completed my book about Heidi and the year following her diagnosis, Juncture at the Still Point. It is being reviewed and the plan is for it to be published in early 2016.

Now we head into the autumn and look forward to cooler weather! Here are some pics of good times over the last couple of months:

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June-July 4th, 2015

What a whirlwind beginning to the summer! Heidi began to meet amazing and unexpected new milestones at the end of the spring and continues to progress. In June we travelled to visit our wonderful, extended SMA family at the annual SMA conference in Kansas City, then went straight to Orlando for an assessment at Nemours Children’s Hospital. Heidi is shocking the clinical trial staff with her improvement! On Saturday, June 27th (her birthday is actually on the 26th), we celebrated Heidi’s very special 2nd birthday with a party/fundraiser for a therapy tub for her water therapy. We met our goal for the pool and Heidi will have a therapy tub installed on our patio by the end of the summer when the neighborhood pool closes! We celebrated the 4th of July with our neighbors in a very fun block party. Here follows some pictures of these events:

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Heidi’s super exciting progress in physical therapy! June 2nd, 2015.

Spring 2015.

Spring 2015

We had a nice spring with Heidi, though she did pick up a couple of colds. In May, we went met family in the cemetery where my grandparents are buried to bury Chris’s ashes at the base of a dogwood tree planted in his memory. It was a beautiful day and a lovely ceremony, but how we all miss him, especially his wife Tina.

On Mother’s Day we ventured to Rick’s mother’s horse farm where Heidi got to see real horses (miniature horses) for the first time. Over Memorial Day weekend we had a an enjoyable time at Wrightsville Beach.

I have completed my memoir about the year following Heidi’s diagnosis, Juncture at the Still Point. An editor an Penguin Random House has offered to guide its publication upon signing with a literary agent. I’ve just begun sending out queries to that end.

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