T&Ps/Whatever you do please (BR) *Updated 9/28*

Re: T&Ps/Whatever you do please (BR) *Updated 9/28*

• Sookie Stackhouse

  September 2011

  I hope I'm not getting on anyone's nerves with the updates. Sorry if so! New update below:

  From the mom:

  Hey guys. Lots of info so I hope you have a minute. Neurosurgeon feels that the pressure and fluid is getting better, so no tap and no surgery right now. PTL. The Neurologist has determined that he has been completely seizure free since friday afternoon, so they removed the EEG nodes from all over his head. Yesterday Audrey wanted to know why all those colored strings were coming out of his head. I told her it was measuring his thinker. She was satisfied with that answer. It will be much easier to hold him again. His body is getting used to his anti seizure meds so he is beginning to open his eyes more often, but I can tell he still can't see me. They are changing the med to a kind that they put in his feeding tube rather than his IV so that he will be able to wake up a litle more, since it will be absorbed slower. That dark little complexion is non existent right now. He is very pale, but the doctors assured me that all levels of whatever are good, so it's ok. The occupational therapist has been here and will be alternating with the physical therapist every day to work with his body, keeping him from getting stiff and working on milestones that he has to relearn, like sucking on a pacifier.
  As for me and Chris: I do not care for the trash bag lady. She feels she needs to shake open every trashbag for every trash can 82 times at 7 am. I also do not care for fire drills at 4 am. Thankfully, there is an openning at the ronald mcdonald house starting tonight for us. Today is the first day I asked about it, so I was very surprised to hear that they had room for us as of 1 pm today. The hospital is having a spa day for PICU parents this afternoon, so chris and I will be getting haircuts and massages. This is a very ambitious group of massage therapists to take on such a stressed out group. I hope they lift weights. We are also being kicked out this evening for dinner. I am dreading both of those things just as much as I am excited about them. I have been very emotional today, fighting a dark mood. I think now that news is calmer, and things are slowing down, I am coming off of an adrenaline rush and things are sinking in. Please don't let good news slow your prayers, I am so so humbled and grateful to all of you and your posts on this page do get read and they help me get through each moment. Thank you so much.

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• Audette member

  September 2011

  Keep posting.  This is such a sad situation to hear about.  Hearing about the improvements gives hope that this family might see some relief.

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• ErikandAfton

  September 2011

  Audette:

  Keep posting.  This is such a sad situation to hear about.  Hearing about the improvements gives hope that this family might see some relief.

  I totally agree. Many many prayers for the family. And thank goodness for little bits of good news and hope. 
  

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• KCD053109

  September 2011

  Keep the updates coming; they are definitely in my T&Ps. I'm so very glad to hear of any and all happy news and will continue to put faith in prayer.
  

  

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• iluvmytxrgr mod

  

  September 2011

  Please keep the updates coming.  Many, many more prayers for them. 

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• marissa01

  September 2011

  I'm glad there are little improvements.  Many prayers for them still.

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• Sookie Stackhouse

  September 2011

  From the mom's fb:

  Hey guys! Sorry to wait so long for an update, it's been a busy day! I finally got some rest last night, the Ronald McDonald house is wonderful. When we got to the hospital AJ was completely off oxygen, and the neurosurgeon and trauma team released him to go to a regular room. They transported him in a wagon. Cutest thing ever! it's nice to be out of the intensity of the PICU. Our pastor David mcQ...ueen came by today and he helped us move. The nurses were laughing because we have a cooler that some of the church family brought. I told her we are texans. We have a cooler at all times. Lol. NS said no tap no surgery today, he still feels there is improvement. Now it's time to really start concentrating on occupational, physical, and speech (sucking, swallowing, etc) therapy. His cry is beginning to sound vaguely familiar. Please keep praying for his eyes. He doesn't track anything. But lots of family were able to hold him today, now that he is not hooked up to so much stuff. Audrey went to the aquarium with her aunt and uncle today, they took her clothes shopping too. Cooks has a ton for siblings to do once you're out of icu. And if you want to get out of the room, you can just ask for a wagon, load up the portable monitors and the baby and take them for a ride! We got to see some dear friends from Hawaii today, some family, and pastor David. It was a great day. Keep them coming father. God and AJ are showing the world what it's about!! Worship.

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• KCD053109

  September 2011

  My heart swells for them? T&P for continued good news.
  

  

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• Two*True member

  September 2011

  How heartbreaking.  :-(

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