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| Pediatric Tracheostomies For parents and caregivers of children with tracheostomies. Please limit discussion to seeking and sharing of information pertaining to tracheostomy care, medical issues, special needs, disabilities, networking and moral support. |
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#1
07-12-2005, 11:27 PM
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I copied this from Zachary's website. Also, someone emailed me about the stem cells and I lost your email. My husband upgraded our computer and it lost all saved emails. Please email me again at princessnikki@mindspring.com.
Hey guys! I am so pleased to update everyone that as of yesterday morning, Zachary is off all supplemental oxygen. This is absolutely HUGE because he has never been able to do without the extra oxygen. His sats are excellent at 96 and above. His therapists have all seen improvements in his since the stem cell transplant. He is more alert, smiles all of the time, interacts more, his vision seems to be improving, he is moving his arms and legs more, wiggling and repositioning in his sleep more, his grasp is better, his trunk strength and head control are better, his appetite has increased greatly, and the best part...NO SEIZURES! He is like a different child now. He has 1 1/2 week left on the phenobarb and he will be off of that medication. Now for fundraisers, we are planning to sell raffle tickets for an emerald and diamond ring as well as 4 UT football tickets. We will also be having a benefit breakfast at Applebees in Kingsport in October. If anyone is interested in selling raffle tickets or tickets to the breakfast for us, please let me know! I can mail them out to you to sell in your area! Oh and we also have silicone bracelets made that say "Zachary's Fan Club" to sell for a fundraiser as well. They should be ready in 3 to 4 weeks. I will post a pic of them along with information if anyone is interested in those as well. THey are going to be so cute!! We are currently planning more oxygen treatments for October and another stem cell transplant in November. Zachary is showing so much improvement, we have to get the money together to go again!! I hope you guys can help us with our fundraisers! Thank you so much for the prayers and thoughts for Zachary. I am feeling so blessed!!!
__________________
Nikki Mom to Zachary, 5 years old - trach, vent dependant 24/7, hypoxic ischemic encephalopathy, diaphragmatic palsy, CVI, VP shunt due to hydrocephalus, Mommy's Pride and Joy! Baby Brother Christian 17 months www.zacharybeachley.com 
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#2
07-13-2005, 07:02 AM
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Praise Jesus!!!!!
I can't tell you how happy I am for you guys. That must feel so good to be on the path back home (so to speak). I pray Zacahary's recovery continues and that you will never have to worry about any of this ever again. God Bless  Andrew, Jessica, & Mary Elizabeth http://wwww.babyraia.com
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#3
07-13-2005, 08:03 AM
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That is fabulous news! You guys deserve some good news. Way to go, Zachary! Keep it up!
__________________
Mom to Breanna (15), David (12), Christopher and Brian (almost 5). Brian decanned in 2006 and had his g-tube removed in 2007.  B & C are surviving triplets. Brooke survived for 1 month.
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#4
07-13-2005, 08:27 AM
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That is absolutely wonderful news! I am so happy for you all.
__________________
Amanda,Mom to Jacob, greatest kid in the world. X-Linked Myotubular Myopathy, trach, vent, g-tube. 
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#5
07-13-2005, 09:13 AM
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Great news! So glad to hear it!
__________________
Laurie - Mom to Evan (the E-man), 27 week preemie, born 2-23-02, trached at 3 months for severe BPD. Vent dependent until 10 months, G-tube placed at 17 months, oxygen dependent until 2 years, 3 months, decannulated 6-27-04 at 2 years 4 months. The most enthusiastic, positive person I've met.
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#6
07-13-2005, 09:51 AM
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Such good news!! Wat to go Zachary!!
Annette
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Annette, mom to Ashley born May 13/03, pfeiffer syndrome type 2, cloverleaf skull, g-tube, fundo, shunt, dev. delay, seizures, untreatable central apnea. Decanned September 3/09!!! Also mom to Mitchell born Feb 27/08, perfectly healthy. They've made my life complete.   
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