Jordan’s foot
29 Mar 2010 2 Comments
Ever wondered what a fallen arch looks like? Here’s what Jordan’s right foot looked like as of yesterday.
One view
And when he raises his toes. Nothing very normal about that.
First day of spring 2010
25 Mar 2010 Leave a Comment
in Family Outings, Health, Jordan
It’s warm! Gotta head outside. Once some household stuff was taken care of both in and out of the house we packed up and headed across the way to the Lake Sammamish area and Marymoor Off-Leash Dog Area – one of our favorite places.
And we're off!
Once the sun comes out, all Bekah can think about is water. March 21st and she's got on a swimsuit in Seattle!
She did confess that the water was cold.
Where Bekah thinks water, Jordan's thoughts immediately go to "'throwing rocks in the water', a favorite past time.
As we meandered down the trails, we eventually came to a bird sanctuary where dogs could go but had to be leashed. More water was located...
Ashley took hold of the camera and rock skipping began
It was so amazing to me that the trees could still be so bare and yet the temperatures be so comfortable.
The maiden, stripped to just her swimsuit
Down a great bridge trail with no idea where it went, just hoping we were actually on a 'loop'.
Aha! The Lake! Mom and Bekah at the end of the dock
Willie and Jordan reach the end of the dock
What was intended to be a family photo shoot - cut short by a wicked inch long splinter in Jordan's palm.
The girl with the camera! She did a great job. So many nature shots I could never post them all.
Quite a long walk. Jordan started complaining that his feet hurt. Should have paid a little more attention to that...
The good news: A gorgeous, 71 degree family day
The not so pleasant part was that even by the next morning, Jordan’s right instep looked horrendous. Puffy, purple, really scary. I thought he was going to end up with a serious pressure sore. The last few days have been spent purchasing new shoes he can wear without the splints (which he was rubbing on and caused the skin problem), adjusting the splints, back and forth conversations with physical therapist, and several calls to Children’s to set up appts. with orthopedists. It appears that Jordan’s instep has fallen more than 1/2″ in the last 4-6 weeks. He seems to be hitting a growth spurt that his foot and ankle ligaments just can’t support. Our goal at this point is to “save” the foot as much as possible until he is seen April 8th. Thanks for praying.
BAHA surgery went great!
03 Nov 2009 Leave a Comment
Wow – time flies!
Jordan’s Stage II surgery for the BAHA went great and the doctor was very pleased with how the posts had osseointegrated. The soft tissue work was done at this last surgery as well as adding the abutment. He’s had his post-operative appointment and is scheduled to receive his processor (hearing aid box) on MONDAY!
Here are a couple photos…
This is what Jordan's head looked like the day after surgery - 10/24. There is a disc covering the surgical site which is wrapped with a strip of Vaseline gauze.
This is what the site looked like the day after the post-op appointment when the disc was removed. (The disc snaps on and off, and stays in place except for times when we add ointment to the site.)
The site is healing very well. The biggest issue seems to be a disturbance to his balance for some reason. His aid at school, therapist at horse riding, and also a volunteer at riding therapy all noted some atypical instability in Jordan. Not sure what that’s all about. Appreciate your prayers.
BAHA surgery Phase II is here!
22 Oct 2009 Leave a Comment
Jordan’s check-in time at Children’s is at 8:45 Friday morning. Surgery will start about an hour and a half after that and will last about an hour fifteen minutes. Recovery will be 1-2 hours and then we head home. Jordan is very ready to have his BAHA! (We’re trying to help him understand that this process still isn’t over. He still has to heal for 2 weeks before the actual amplification box delivery appointment occurs.)
We much appreciate your prayers for Jordan’s safety, our peace, and the girls as they will be home (and are both fighting the flu).
Surgery that didn’t happen…
24 May 2009 Leave a Comment
Check-in: 8:30, but first: flu symptom check and identification badges.
Playing Hangman while we wait to register. Jordan had to have a mask because of his cough - no chance of spreading swine flu allowed!
Name badges, flu symptom check & registration all completed, now we wait to head back into the surgery center.
ID'd, gowned, waiting for the anesthesiologist so we can get this procedure going...
Once the anesthesiologist made it in to discuss the procedure, he took one listen to Jordan’s lungs and the wheels of the day came to a screeching halt. Jordan sounded wheezy and the doc was concerned that Jordan would end up in worse shape than he currently was if they continued with the plan for general anesthesia. Following more doctors, more listening, phone calls to the dentist & oral surgeon, the procedure was canceled.
Made it home 3-1/2 hours after we started out our day.
Still waiting to reschedule…
Jordan scheduled for surgery in the AM
18 May 2009 Leave a Comment
I’d like to request prayer for Jordan as he heads back to Children’s for his 2nd of 3 surgeries this year. This one is for all those baby teeth that just aren’t falling out on their own. For some of them, 7 in all, there are no teeth coming in behind them to push them out and for others the roots may be embedded in the bone. The teeth that are coming in are running into teeth that shouldn’t be there and are coming in where they shouldn’t.
Specifics:
Safety during the procedure: Jordan’s had a cold the last few days, but they’re going ahead with the anesthesia and procedure. Pray for his airway and respiratory status.
Anxiety level: Returning to the hospital less than a month after his last procedure could be a little nerve-wracking for the little boy.
Healing: The radiation he received way back when he was 1-1/2 can cause delayed healing of the sockets where the teeth will be removed.
Check-in will be at 8:30 AM, with surgery around 10 and lasting about an hour.
Thank you!
Jordan’s BAHA surgery
02 May 2009 1 Comment
No, Jordan didn’t go to Mexico (aka. Baja California) for a surgery, but rather had a Bone-anchored hearing aid Phase I procedure done. There are a couple other posts about Jordan’s BAHA journey which are found under the category of Jordan and subcategory “health”. How the BAHA works can be found here. The hearing aid is installed in two phases, both of which require surgery. Phase I consists of the implantation of 2 titanium posts into the mastoid bone behind the deaf ear. They are completely imbedded in the bone, and for the next 6 months the bone heals around them until they, somehow, become integrated into the bone.
Now, we wait for a post-op appointment in a month, then wait the 6 months until the 2nd phase can be done. This second phase is when the ‘abutment’ is attached to the titanium posts, meaning that the skin is opened back up, the little snap part is attached, and then the little hairs around the area are removed – permanently. They call this the ‘soft tissue’ work.
A couple weeks after that (November????), he we have an appointment with the hearing aid specialist who will fit him for the hearing aid, i.e. finally hand it over, snap it on, turn it on, and WOW! I get giddy just thinking about it.
How many people do you know that have a snap on their head?! I mean, really, it’s pretty amazing technology.
This aid will be able to be turned on and off, volume up and volume down, and even has a setting for noisy vs. quiet environments. And, he can take it off to sleep (can still lay on his good side and block out Bekah noises!), to swim, etc.
The basic question? Will his ear work now? No. All the hearing will be done with the right ear, but sounds from the deaf left side will be passed to the bone via the BAHA and conducted through the bone over to the hearing right ear.
Here are some pictures of our day at Children’s Friday, April 24th.
First things first - turnin' on the TV. This is the first time he's been old enough to work the remote reasonable well. It was awfully fun to push buttons when he was 4 though!
All gowned up! He cracked us up trying to put this thing on like a coat. He kept turning around to put the opposite arm in when I held it what seemed 'backwards' to him.
Talking with the anesthesiologist. Both this guy and Jordan's nurse cared for him way back in 1998, and both remembered him.
The Beavers - long time friends and current children's ministry leader at church - came to visit and pray with Jordan before surgery.
No scars yet! You can barely see where Dr. Sie marked his earlobe with a pen so she was sure to get the correct side.
It's just below the arm of his glasses that the incision is made
Jordan on calming medicine (versed). Is he talking to his dog?
Back from surgery. This purple headband had to stay on (applying pressure) until the next morning - what a pain, especially when you're loopy!
Surgery info for Jordan
23 Apr 2009 1 Comment
in Health
The first phase of Jordan’s hearing aid surgery is tomorrow, 4/24. I just got a call from Children’s Hospital with our directions: Check-in time is 12 NOON. I was really hoping it would be much earlier so we could get out shortly after noon and enjoy the rest of the day. That will put surgery at about 2:00 probably.
Thanks for your prayers!
BAHA on youtube.com
20 Mar 2009 Leave a Comment
in appointments, Health, Jordan
This three minute video is a neat overview of the BAHA. Warning: There is a tiny bit of an actual surgery at the end (2:45).
3/2 – A day at Children’s clinics
04 Mar 2009 Leave a Comment
in appointments, Health, Jordan
Here is the run-down of our day:
Taking a nap / hiding while waiting for the Doc
With Willie partaking in our day of doctors, it was filled with humor. Here, Jordan waits to meet the oral surgeon. Followed by a check throughout his mouth, Dr. Eggbert checked the chart and shared with us that the dentist who Jordan had seen a couple weeks ago was recommending not the removal of 2 teeth (B & I) as we were told before we left the last appointment, but SEVEN! It was recommended that all of Jordan’s remaining baby teeth be removed during a combo case with a cleaning and dental sealants. This has been set for May 19th and will be an outpatient surgery.
With this appointment finished we had about an hour and a half before the audiology appointment so we grabbed some lunch at our favorite U. Village terriyaki place: Nasai Terriyaki. (On the rare occasion, ten years ago, that we got to pick a place for dinner between the hospital and home, we would grab yummy terriyaki here and either take it home or to the hospital for dinner with Jordan.) Our next stop was Barnes and Noble for a little hang out time before heading back to the hospital.
Snapping the BAHA together
Arriving at Audiology, we were greeted by super-audiologist, Julie Kinsman. Julie is the hearing-aid specialist and provided us with great information on the aid she was recommending for Jordan, the BAHA. Short for ‘bone-anchored hearing aid’, the BAHA uses bone conduction to give the wearer the impression of hearing from both sides. As a trial a small external box, attached to a headband, was set over the mastoid bone behind Jordan’s deaf left ear. The true test was when we asked Jordan to plug his good ear and I said words out of his sight and into his ‘bad’ ear. He could repeat them and answer questions perfectly!! What a moment. We then turned the aid off and did the same thing: “Huh?” was the response this time. It was truly amazing and just what we needed to make a decision on this ‘elective’ surgery.
What this means: 1) Two surgeries. 2) Within a year, Jordan will be able to hear us no matter what side of him we are on. Because we typically hold Jordan’s neglected left hand when we walk with him, he is never able to hear us speak to him while we walk. This will be changing!
The surgeries involve the implantation of the “osteo-integrated post” (two actually, to make sure at least one of them takes) and then the “soft tissue work” in which the external abutment is placed along with the removal of the hair surrounding the post. Both are out-patient surgeries and although they can be done as one surgery, due to Jordan’s history of cranial radiation treatment his chances of delayed healing make it necessary to do the surgeries in separate stages.
In these pictures, he is snapping the abutment to the hearing aid box.
He got it!
Dr. Sie examines Jordan's left ear under the microscope
Next, we headed to otolaryngology. Dr. Sie is one of the head doctor’s of this clinic, and it is easy to see why. Very rarely do I leave a day of appointments with a smile on my face, but Dr. Sie just has that effect. She is so personable and someone I’d probably enjoy hanging out with outside of the hospital. Willie pointed out that she actually makes eye contact with both the parents and the child. She is a breath of fresh air. Now, we love Children’s Hospital, but still there are doctors of different calibre there.
These pictures show a couple procedures Jordan endured during our time with Dr. Sie. First, his ‘bad ear’ was looked at under the microscope just to see if there was anything glaring as irregular. He may have some fluid in the ear but she didn’t think that was the cause of his hearing loss (more for the resident’s benefit than ours). She recommended a CT scan be conducted prior to the surgery so she could get a good look at Jordan’s ear.
Flexible microscope up the nose...
Next, a new room where Jordan sat on my lap for an endoscopy. Luckily for Jordan, he has no sensation in his left nostril so this was much more pleasant for him than nearly all other kids who have it done! Dr. Sie wanted to take a look at both his airway and his vocal cords to see if there was anything glaring that could address his sleep issues (he still won’t sleep with the machine). His adenoids – taken out 10 years ago – were still small. His second set of tonsils (who knew?!) at the base of his tongue were large but she said removing these is extremely painful and she wouldn’t do that to her worst enemy. Vocal cords? Same report: the right moves briskly and the left is sluggish. We’ve heard that report since 2000. The only option to improve his airway? A trach. And in Dr. Sie’s words, “You guys have already been there”. We’ll live with what we’ve got and improve what is reasonable and acceptable while evaluating Jordan’s and our quality of life.
...and down into the throat to look at the vocal cords. Yep, that'd be the gag reflex.
A model patient, but he still has sensation in his throat!
We’re still waiting for the ENT surgeries to be scheduled, but will keep you updated! Thanks for your continued prayers.
