Gettin’ Around

Well, here we are…another month has been torn off the calendar and we’re halfway through February already!  Since our last post, we’ve had a couple of phone conversations with Drs. Tirakitsoontorn and Shapiro and a new, revised “trach plan” is in place.  As it stands now, Rudy is scheduled for an overnight at UCLA on February 22nd.  Dr. Shapiro will downsize Rudy to a 3.0 Shiley PED trach and keep him overnight for observation – making sure he tolerates the downsize okay.  Once he safely adjusts, then we’ll schedule the repeat sleep study.  Both Dr. T and Dr. S agree that the downsize will increase Rudy’s chances of passing the sleep study.  We’ll see…

Rudy’s monthly cardiology appt was on Monday and nothing has changed.  Dr. Harake predicts that we’ll spend the bulk of this year in “conservative follow-up”…there is no plan for a heart cath or any intervention at this point.  He feels we should use this time to focus on decannulation (trach wean) and affirms our current plan with the docs at UCLA.  So, unless something significant happens with his heart, no action will be taken.

Eventhough the logistics of Rudy’s direct medical care seem to be slowing down to a standstill, the “behind the scenes” details never lull.  After getting denied a couple of times already, Rolf is working hard to get Rudy into the  CCS (California Children’s Services) system.  Because Rudy’s current therapy and nursing services through Regional Center will end when he turns 3 yrs old, we pray the resources of CCS will be available to him by then (October 1, 2011).   Another big piece of the Rudy puzzle has to do with our most recent major family purchase…with Rudy now weighing in at over 33 pounds and still not close to walking, it became more apparent to us last fall that it was time to look into getting a medical-modified van – one that would accommodate his wheelchair.  A church contact led us to a van in San Diego that seems to meet our need specifically.  Since the medical modifications alone on these vans cost between $30,000-$50,000, we feel blessed  to have found this van for $23,500.

We share the specifics because many of you have inquired how you can help us and, although we are reluctant to put it out there, helping us purchase this van is one very practical way.  For those of you who might feel so led, our church has offered to receive gifts on our behalf  to put toward the purchase of the van.

On our way to this month's blood draw...in style.
All done...heading home.

Those who would like to gift our family can send a check made out to:

“Coast Community Church” at 4973 Via Los Santos Road, Santa Barbara, CA 93111 Attn: Geyling Family Van

Rudy got a special Valentine this morning from Gwendolyn.  Gwendolyn is a local girl battling SMA and we have been sharing in each other’s journey on our blogs (www.gwendolynstrong.com).  We also share a night nurse and Nurse Evelyn delivered Gwendolyn’s sweet Valentine last night…precious!  Thank you Gwendolyn…we think you’re pretty darn cute too!!!

Thank you Gwendolyn!

7 thoughts on “Gettin’ Around

  1. HI Guys,
    We are excited about the next step downsizing to a size 3.0 trach – we will be praying that Rudy will handle the transition like a champ, and it will move him one step closer towards de-cannulation.
    And what a blessing about the van! We have started to look into one as well because it has become a lot to load Moriah in the wheelchair, then unload her in the car with vent, oxygen, and pulseox, and then load it all back up again on the wheelchair. Im exhausted just writing it out! =)
    Anyway, if you hear of anything, let us know, and in the meantime, we will be praying that the Lord provides for the cost of your van.
    Sending lots of love and continued prayers,
    the Nelsons

  2. Rudy boy…you are so very cute and I am glad Gwendolyn thinks so, too. So many folks here continue to ask about you and I assure them that you are in God’s hands and we don’t know His plan but we do trust it. Just keep growing and giving those lungs time to strengthen.

  3. Rudy looks like such a happy big boy in the new van! I think it’s great that your doctors are working together for the best of you boy! We love you and pray for provision of continual grace and funds!!!

  4. So glad to see the new van was found, and making your lives much easier for transporting your growing family! Kids only get biggger, and need more room for stuff in transit from home, school, events! The van looks in great condition!!

    Hugs and love to you all

    Kendy

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