Tag Archives: achondroplasia

Tinsley Update: Why You Will Not See Us This Christmas

 

The last few weeks have been chocked full of milestones and improvements in Tinsley’s overall health.  He continues to show terrific stability in his ability to maintain his breathing and oxygen saturation with only normal “room air.”  His head control continues to improve and all of his therapists through First Steps are regularly surprised at his progress week to week.

He only had one serious incident, which was last week.  Tinsley had a small skin irritation from one of his sensor stickers.  We loaded him up in the car and he did not look especially well once we got to the doctor’s office.  We put him on oxygen and he appeared to improve.  However, once we got him in the car again he had significantly decreased his respiratory rate and was foaming at the mouth.

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Tinsley Update: 11/26/2011

It has been a very long time since I last wrote an update on Tinsley.  Let’s just say that for the most part things have been going swimmingly.  Swimming being something that Tinsley cannot do until he no longer has a trach (although I am not sure how well he would do with that anyway).

Dr. Escobar, Tinsley’s developmental specialist, explained that it is as if he has been in a serious car accident and needs the extended period of time to recover.  Tinsley definitely has some physical delays, which are common with babies with achondroplasia, but with his added medical complications he has a few more.

However, his brain is very sharp! Everyone comments on how intelligent he obviously is and how amazingly social he is.  He is excelling beyond expectations in both of those areas.  Tinsley has an amazing attention span (the envy of his mother) and even without language he tells us how he is feeling.

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Tinsley Update 9/29/2011

Back in the hospital for the last few days.  Tinsley is doing better than ever and he was admitted just so Mom and Dad could learn about how to support him in his breathing.  He has been working so hard to breathe that he is probably using energy that he needs to grow.

He will be on a ventilator just for breathing support in a CPAP setting.  What that means is the machine will help to inflate his lungs, which should not only help making breathing a bit easier but also help move out the mucus and fluid that has been sitting in his lungs to give him even more lung capacity to use to breathe.

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Tinsley Tuesday: 9/13/2011

Admit it, the only reason you have bothered to read my Tuesday posts is to get an update on the kid.  Well, instead of continuing to play the game, I have changed from “Twitter Tuesday” to “Tinsley Tuesday” so you now can get what you want straight out.

Afterall, who am I but a proud father that enjoys shouting out about his son?

Tinsley has now been out of the hospital for 11 days and seems to be doing very well.  He has not required anything out of the ordinary (ordinary being breathing support with oxygen, trach, suction, and breathing treatments and feeding support with his g-tube and a continuous feed).  He has been more and more adept at using his hands to grasp things (as you can see in the above picture as he yanks on the elastic holding his trach collar on).  That head is moving more all the time as he build agility and freedom of movement.

Hidi painted is room a light green over the weekend and I am working on a mural design of a giraffe, hopefully to be completed by this time next week.  That means that the kid is living on the floor in the living room, something that comes as a thrill for him because he is now able to spent more time involved in family life.  The dogs enjoy “kissing” him, but have been great about leaving him alone.

All in all we expect him to continue to improve.  We continue to welcome your support through prayer and any other help you may be able and willing to offer.


Twitter Tuesday 8/23/2011

One again things have been quite here because Tinsley is again in the hospital.  Yesterday was the 4-month anniversary of his birth.  Circumstances are similar to his last hospital admission: breathing trouble and needing more oxygen.  We will be meeting with our team of doctors later this week to decide on what kind of surgery he needs to eliminate his reflux and aspiration that continue to threaten his airway.

In the meantime, here are some highlights from my Twitter feed including some pictures.  I have begun using instagram to post pictures, so if you are also a user feel free to connect with me that way as well.

  • Whether or not 1 believes in the doctrines of grace is, ultimately, a matter of submitting to the supreme lordship of Christ. -Steve Lawson
  • Regeneration is the act of God and of God alone. –John Murray
  • Can a child become unborn after he is born? Can a Christian be unborn again once he is born again?
  • The virgin birth was monergistic. Mary was passive. Joseph was passive. But the Holy Spirit was active. – Steve Lawson
  • One man cannot save the world… because one man already did.
  • Pray for Tinsley. Just turned up his o2 to the highest it has been since surgery; he is still having trouble keeping his blood o2 levels up. (8/18)
  • Every word of God proves true; he is a shield to those who take refuge in him. http://t.co/BX8EGug (tweeted from the ER)
  • I’m tired of “there;” I want to be “and back again.” (8/22)
  • I’m all attitude! http://t.co/udOCE1R (picture from 8/22)
  • My source for late night entertainment http://t.co/C1f1hVv (picture from 8/22)

Get regular updates by following @lunchboxsw on Twitter.

Feel free to leave a comment on this post, send me a note, or send me a reply on Twitter.