Being sick really stinks!

I suppose that may be all I have to say when writing a post at 2:53 AM…

I’m so congested I can hardly breathe and my throat and lungs are on fire with any sort of cough. I dosed up on Sudafed, Ibuprofen, and stood over the hot sink with a towel on my head to try to open things up with steam.  My ‘best laid plans’ for Halloween tomorrow are looking iffy… But at least Bekah’s dress is done, now I have to see if I can actually get the bonnet finished tomorrow.

Happy Birthday, Brother!

My brother, Wes, makes me smile. He’s the baby of the family and rarely did wrong. His biggest problem was deciding where his allegiance would fall when his big sister and brother would get in fights!

He and Kara are so much fun and I wish we got to see this California couple more often. I love you, Wes!

Schertz Family Reunion

A few weeks ago my dad began planning a gathering in honor of his sister Linda who has been battling aggressive lung cancer for several years. He flew in from Raleigh, and he flew Linda and another sister, Donna, up from the Bakersfield, CA area. Today, following soccer, we headed to Renton and arrived just in time to begin stuffing our faces!

Cousin Jenny, Debbie, Cousin Monique, Cousin Sarah, Willie, and Keith (Monique’s hubbie)

It was so amazing to see my cousins and second cousins who I haven’t seen in as much as 20 years. And, it was kind of surreal to have all of our kids playing together. The generations have certainly progressed since the last time we were together and the tween and teeners were creating silly home videos titled “Good Morning, China?” amongst other things. This particular one was a talk show where one of the cousins was the talk show host and the rest of us dressed up and played the roles of various made-up guests. We also created knock-off commercials – real products with some sick twists on them, e.g. the Tylenol that killed her daughter (being prior to the Tylenol bottle poisonings, we thought this was hilarious, but I think you may have had to be there…) The reimniscing was good for many belly laughs. It’s amazing the way we could all recollect things as far back as 1984 and still hear ourselves and our siblings and cousins saying the impromptu lines.

Uncle Hermann, Cousin Chris, his daughter Tess, LJ, Katie, Jenny, & Dean

Bekah was still trying to process the fact that she was related to all those people and said she was going to invite all the cousins to her birthday party, and Jack, too, because he was so funny. Jack is my cousin’s main squeeze who is an overgrown kid. Not that I have anything to say about that, because Willie was out there giving the kids piggy back rides, chasing them, and at one point I even wondered if they were going to tie him up just for the fun of it. The ‘kids’ ranged in age from 3 to 10. Jack even pulled out some super huge sparklers and helped the kids with those. Bekah will certainly sleep hard tonight!

Willie and the kids – Monique asked if he did parties!

 

 

 

 

 

Grandpa’s visit

Grandpa, Ashley, Jordan and Bekah

Grandpa, Ashley, Jordan and Bekah

My dad came into town this weekend from Raleigh, NC. Grandma could not break away from school and was greatly missed, as always.

We shoved lots of activities into our short time together:

– Wii bowling

– Spaghetti Factory

– Card & board games

– A trip to Target for goodies for the kids

      Ashley picked out electronic Deal or No Deal. Bekah chose an Ariel doll (will this fascination ever end?!). And I chose a Ben Ten puzzle for Jordan since he wasn’t home from school yet.

– High School Musical 3 (Woohoo!)

– Soccer practice

– And the family reunion

Team uniforms!

They look super in their new jerseys

Jordan is really enjoying soccer through TOPSoccer. His skills have really improved. Currently we’re working on dribbling without stopping at each touch of the ball. We have been blessed with an amazing field that works so well for Jordan’s walker and the Lord has provided superb weather. Over the course of 7 weeks this fall we have not had rain a single day, and most have been beautifully sunny. Today, Grandpa was able to join us!

Jordan’s “Irons in the Fire”

Two weeks ago I was feeling so completely overwhelmed with all the details of Jordan’s care that I could hardly keep my head functioning right. I chose to write down the things that were swimming in my mind, and it’s no wonder I felt heavy-hearted! The list helped get it out of my brain though, so despite that the list looks long and overwhleming in and of itself, freeing up the brain space made it much more manageable!

Here are the pieces:

Feeding – consult coordinating Speech and OT (for g-tube) –  completed 10/19

                        DOES NERVE RE-INERVATION PLAY A ROLE IN HIS EATING?      

Jordan has been cleared for pureed foods and we are increasing those daily. The Speech and Language Pathologist will be finishing her report and sending it to school so they can feed him regular food at lunch. She is also checking with one of the ENT doctors about performing a vocal cord scope on Jordan to check the function there. Additionally, she will ask about cranial nerves and whether nerve surgeries would repair not only the 7th (facial) nerve but also the 6th which affects the swallow and vocal cords. If the sleep study comes out ok – showing no obstruction – it is also possible to inject collagen in the slow vocal cord to fatten it up a bit so the two meet better.

Nerve surgery – ENT and Duke Medical CenterWe are considering facial nerve surgery for Jordan. We have heard mixed reports, some kids have had fantastic results with the two-part surgery and others have had very little effect. We may contact one of the Nuerosurgery Residents (Dr. Grant) who helped with Jordan’s first surgery and now works back at Duke. He is a colleague of the best facial nerve surgeon in the country, Dr. Marcus. We would be able to do a consultation across the country through the sending of medical records and current video of Jordan’s facial movements.

Hearing – Audiology & ENT – deciding on surgery (BAHA), but need to know if he’s a candidate. Does the source of the loss matter? Audiology completed on 10/6. Ent scheduled for 11/17.

              – Audiologist recommended not only the classroom FM system but also the personal FM system (microphone on teacher goes through headphones to Jordan instead of just an amplification through classroom speakers). Questions remain as to whether the nerve that enervates the ear can be tested and if the loss is neural or cochlear in source. We have to wait until the ENT appointment to figure out his candidacy for certain.

Recurrent Strep – Sleep Disorders Clinic – Sleep consult was completed on 10/7 with Amber McAfee, ARNP (one of Jordan’s former floor nurses in 1998-99)

Sleep – Sleep Disorders Clinic, Pulmonary Clinic – The plan following the the sleep consult included the following: 1) Obatin sleep study (scheduled for 1/26, but due to urgency of Jordan’s case he was placed at the top of the cancellation list. The study was completed on 10/13.) 2) Follow-up after sleep study with results and recommendations will be done with Dr. Luke Hoffman (Currently on staff with Children’s Pulmonary Dept., he was a resident that worked with Jordan during his chemo days!).

An brief exercise tolerance test was conducted during this clinic appt. With mild exercise of walking the halls of the clinic, Jordan’s heart rate jumped all the way up to 144 BPM (target heart rate with exercise for his age is 131). We will be discussing this issue with Dr. Hoffman and possibly heading to cardiology…

Pulmonary – f/u on sleep study, and pulmonary work-up – We are working with Dr. Hoffman to get this scheduled. When I called the clinic they told me to call back in a few weeks because he was scheduling into next year and they didn’t have the next year’s calendar in their system yet…

School – hearing, vision, comprehension, time in Intensive support vs. general education room – Ongoing. The school is having discussion with Audiology about the personal FM system, silent reading time is being replaced with audio books/DVDs, and Jordan alternately likes or dislikes his mainstream teacher. Comprehension has become an issue in that he does short passages adequately but if he is given a chapter he has a much harder time summarizing at the end. His new IEP will be done in mid-Nov.

Vision corneal scar – Saw Opthamology 10/23. Dr. Caderra is pretty impressed with the healing that Jordan’s body does, and despite the fact that he currently has decreased sensation in his left eye (which makes healing slower) it is possible that in a couple years we could consider a corneal transplant or graft so he could see better from that eye. The doc could hardly believe that Jordan can now close his left eye at will and the corner of his mouth also pulls up slightly!

Physical therapy – exercise intolerance? addressed above, still in progress with Pulmonary. HippotherapyTherapeutic Riding. Jordan has been on the Little Bit Riding Center’s waiting list for 2-1/2 years. Vestibular therapyDid 6 sessions in the spring

Vision therapynot done, not covered

Neuropsychologist – Dr. Martin. Counseling, processing – Still considering this

Caregiver – Need to find one – Playing phone tag with an agency

DAFO ankle splints – in process – Been cast for new ankle braces with a little more support; awaiting delivery

Bless you if you made it all the way through this! It’s not very exciting to read, but it is our life!!

Phantom of the Opera

All dressed up with somewhere to go

For Ashley’s 13th birthday, Grandma and Grandpa did a very special “experience” gift. She got to take her mom and dad and go to Phantom of the Opera!! Ashley has recently been working on one of the Phantom songs (“Wish you were here”) in her voice lessons and when the advertisements came out that Phantom would be here, closing on her birthday, I knew we had to see if something was possible. Thanks to G’ma and G’pa, it was! Hooray!

Ashley borrowed one of my dresses and a pair of my shoes (yep, she’s a big girl), wore my mom’s mink coat, and once Grandma Yogi (Willie’s mom, who used to have a dog named Yogi and thus became the grandma with yogi or Grandma Yogi) arrived from Ferndale to watch the younger two we headed out the door. Quick bite of dinner – classy, Taco Bell drive thru – since it was already 5:20 and the show started at 6:30. But it was enough to tide us over through the fantastic show and then we walked over to Cheesecake Factory (Ashley’s choice). We had some appetizers and each of us ordered an amazing slice of cheesecake. What a very special and memorable day.

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