Thank you to those of you who prayed for Ellie’s Minneapolis adventure at the Shriner’s Hospital.

Ellie’s parents were HUGELY impressed with the Shriner’s Hospital. They said absolutely every single person they came in contact with during their 7-hour day at the hospital was “fantastically helpful, friendly, and nice.” As you might know, that is not always the case!

They met first with the doctor who impressed them as very trustworthy. When asked about SDR for Ellie, she said it was her professional opinion that Ellie should be at least five years old before even contemplating that surgery. She has had extensive experience with SDR, so knows what she’s talking about. Some kids might benefit from an earlier SDR, but she didn’t feel it was right for Ellie.

When asked about Botox, the doctor thought it best to wait a bit on that too, at least until next summer.

As for the Baclofen pump, the doctor felt it might be a really good option for Ellie. However, because the pump is the size of a hockey puck and implanted under the skin, Ellie would have to be bigger before seriously considering one.

The doctor ordered x-rays of Ellie’s hips, then went through the x-ray evaluation with her parents, showing them why she was concerned about Ellie’s hips. Her right hip is nearly out of the socket, and the doctor was fairly certain that Ellie would need surgery sooner than later (probably within the next 18 months) to lengthen the tendon.

After that, the doctor and two therapists examined Ellie’s AFOs (leg braces). They all agreed that they were too bulky and need some “tweaking”. They have a state of the art on-site lab and make their own braces, so it didn’t take them long to fix them up.

Ellie isn’t too thrilled about wearing her AFOs since they inhibit her crawling and sitting sometimes, so it will be a challenge for Mom and Dad to get her to wear them. However, since the braces stretch out her tendons, which helps stave off surgeries, it’s a must!

The Shriner’s therapists figure Ellie will probably outgrow her current braces within six months, so her next pair they’ll make from scratch at no cost to her parents.

After a long day of being checked-out and playing, Ellie was pretty tired.

Ellie has a follow-up appointment in January for new x-rays of her hips to check on the bad socket, and she’ll probably get new AFOs made. All expenses, once again, will be paid.

They also invited Ellie to a one-week long Aquatic Therapy camp next summer, so Ellie and her parents may be seeing a lot of Minneapolis!

Shriner’s is such a blessing: more expert opinions and much better equipment, all at no cost.

Can’t get better than that.

First off, Ellie and her parents are in Minneapolis right now, going to appointments with several different medical personell at the Shriner’s Hospital there. Pray things go well!

Last week they had an appointment with Ellie’s orthopedic doctor, and were hoping to get a letter of recommendation from him to give Canadian insurance. This might have enabled them to get some help in paying for Ellie’s surgery.

It didn’t turn out as they expected or hoped, but that maybe a good thing.  Here’s what Ellie’s mom had to say, “Dr. M spent a long time talking to us in his office, and although he didn’t completely discourage the surgery, he was very cautious in recommending it. He said that he hadn’t seen “amazing” results post-SDR, and he wondered if perhaps pursuing a different avenue (specifically, a intrathecal baclofen pump) might be a better solution. He seemed to indicate that SDR wasn’t as popular as it used to be, because many CP specialists were questioning the risk versus gain.

That said, Dr. M admitted that he felt somewhat under qualified to advise us for or against SDR, so he referred us to a local neurosurgeon (who doesn’t perform SDR himself, but has many CP patients who have had it done. We should have an appointment with the neurosurgeon by the end of summer.”

By the time Ellie has been seen by all the people at the Shriner’s Hospital, and then sees this neurosurgeon later this summer, her parents will have more information, and hopefully a better idea of what exactly is the best course of action for Ellie’s treatment.

It may still be surgery, but then again, it may not.  Please pray for them to have wisdom in deciding, and peace about what is the best thing to do to help Ellie walk.