Bon Posted January 6, 2020 Author Share Posted January 6, 2020 4 hours ago, Petee said: Hot Dog! Or should I say Weiner Dog! Midgy Widgy!! mr.d 1 Link to comment Share on other sites More sharing options...
Bon Posted January 6, 2020 Author Share Posted January 6, 2020 Faiths oxygen was an avg of 95% last night. She had it up to 98% which is great. Still congested this morning. She was fussy and gassy yesterday. Still has a lot of junk in her nose and throat but hopefully it’ll get better today 🙏 she’s been cranky with her bottle but I think she had sinus pressure and maybe a headache yesterday too. So hoping for a better day today. We are restarting therapy this week with strict rules of if anyone is in contact with someone who is sick to just reschedule. But we’ve got to get her back on track again. pwacm, mr.d, Sanibel and 3 others 6 Link to comment Share on other sites More sharing options...
Jay Posted January 7, 2020 Share Posted January 7, 2020 She is a lucky little girl to have such a loving family who takes such good care of her. mr.d and Bon 1 1 Link to comment Share on other sites More sharing options...
Petee Posted January 7, 2020 Share Posted January 7, 2020 Her beautiful little smiles and development are a blessing to us all! Thank you Bon for sharing her. mr.d and Bon 1 1 Link to comment Share on other sites More sharing options...
Bon Posted January 15, 2020 Author Share Posted January 15, 2020 Happy 1st birthday Faith Marie!! sapphire, etsaunt, pwacm and 6 others 9 Link to comment Share on other sites More sharing options...
sapphire Posted January 15, 2020 Share Posted January 15, 2020 19 minutes ago, Bon said: Happy 1st birthday Faith Marie!! Wishing you health and happiness today and always! Happy 1st Birthday Baby Faith! 🎂🎈 mr.d and Bon 1 1 Link to comment Share on other sites More sharing options...
Sanibel Posted January 15, 2020 Share Posted January 15, 2020 Happy Birthday Sweet Pea! Bon and mr.d 1 1 Link to comment Share on other sites More sharing options...
Bon Posted January 15, 2020 Author Share Posted January 15, 2020 The shirt says - For This Little Girl We Have Prayed sapphire, mr.d, tatty and 2 others 5 Link to comment Share on other sites More sharing options...
Nannymimi Posted January 15, 2020 Share Posted January 15, 2020 What a gorgeous little girl....Happy Birthday Faith Marie! Bon 1 Link to comment Share on other sites More sharing options...
fadedgenes Posted January 15, 2020 Share Posted January 15, 2020 Happy Birthday sweetie! Bon 1 Link to comment Share on other sites More sharing options...
bvillewolf Posted January 15, 2020 Share Posted January 15, 2020 Happy Birthday little one Bon 1 Link to comment Share on other sites More sharing options...
Bon Posted January 16, 2020 Author Share Posted January 16, 2020 I hope you all saw her pic on POTD!! fadedgenes, Sanibel, sapphire and 1 other 3 1 Link to comment Share on other sites More sharing options...
WMJ77 Posted January 16, 2020 Share Posted January 16, 2020 HAPPY BIRTHDAY Faith Marie Bon 1 Link to comment Share on other sites More sharing options...
Petee Posted January 16, 2020 Share Posted January 16, 2020 She is living on pure love! Jay, Bon and mr.d 3 Link to comment Share on other sites More sharing options...
sapphire Posted January 16, 2020 Share Posted January 16, 2020 15 hours ago, Bon said: That smile!! 🥰 🤗 Bon and mr.d 2 Link to comment Share on other sites More sharing options...
Jay Posted January 16, 2020 Share Posted January 16, 2020 She is adorable and looks so happy. mr.d, Bon and BART 2 1 Link to comment Share on other sites More sharing options...
Popular Post Bon Posted January 16, 2020 Author Popular Post Share Posted January 16, 2020 Thank you, to everyone who has followed along with Faith Marie’s journey to reach a year old!! The majority of us learned what Trisomy 18 is. We also learned that “Trisomy 18 is a Diagnosis, Not a Prognosis.” We have no idea what the future holds, we will go day by day. Everything is in God’s Hands, His plans & His time. 🙏🏻💜🙏🏻 LFG, WMJ77, mr.d and 8 others 11 Link to comment Share on other sites More sharing options...
Petee Posted March 14, 2020 Share Posted March 14, 2020 How is your little Pumpkin doing? We haven't seen anything for quite a while and I'm sure we all miss her! mr.d and WMJ77 1 1 Link to comment Share on other sites More sharing options...
Bon Posted March 14, 2020 Author Share Posted March 14, 2020 She is doing ok. Getting teeth in 1 or 2 at a time makes an unhappy Faith & mommy, but mommy puts real vanilla on her gums & makes a happy kid!! She is still having 3 therapist come to the house a week to work with her speech, muscles, & sitting/rolling/standing. All 3 ladies are wonderful with Faith, Brandi, Deryk, & the Midget. They all spend a few moments playing with big sister Midgy & her ball, lol. With this Coronavirus, they are going to be as vigilant as they were when Faith came home. This virus can easily kill Faith because of her weakened immune system. sapphire, mr.d, tatty and 2 others 4 1 Link to comment Share on other sites More sharing options...
Bon Posted March 14, 2020 Author Share Posted March 14, 2020 sapphire, Jay and mr.d 3 Link to comment Share on other sites More sharing options...
WMJ77 Posted March 14, 2020 Share Posted March 14, 2020 what a cutie....keep her safe mr.d and Bon 1 1 Link to comment Share on other sites More sharing options...
Bon Posted March 14, 2020 Author Share Posted March 14, 2020 One bad thing Faith Marie does that drives us all batty is... she grinds her top teeth & bottom teeth together!!! 😤 hate that sound!! We hurry & put a teether in her mouth. She can grind away all she wants on that. mr.d, WMJ77 and sapphire 3 Link to comment Share on other sites More sharing options...
sapphire Posted March 15, 2020 Share Posted March 15, 2020 Love this! The look on her face says it all! 🥰 Bon, etsaunt and mr.d 2 1 Link to comment Share on other sites More sharing options...
Dilligaf Posted May 6, 2020 Share Posted May 6, 2020 On 3/15/2020 at 12:25 PM, sapphire said: Love this! The look on her face says it all! 🥰 This tiny angel puts a smile on my face,thank God she is blessed with a beautiful loving family. mr.d and Bon 1 1 Link to comment Share on other sites More sharing options...
Bon Posted May 16, 2020 Author Share Posted May 16, 2020 Update on Faith Marie, she had an appt at CHP today. Turned into a full day for them, but we all have answers now! This is what Brandi told us...... Eye check up at 9 am. It was decided at this appt that Faith needed to see the eye dr due to “pulling” in her right and left eye, significant pulling in the right. Eye dr appt was scheduled for same day at 1230. She was diagnosed with strabismus, esotopia. Glasses will not help the situation, she needs surgery in both eyes, scheduled in September pending, must discuss with heart dr first. She was scheduled for hearing check up at 11 am She failed initial hearing test and was rescheduled for same day Natural ABR. She slept on me with the leads on her head and an ear piece in her ear that sent sounds in her ear to monitor how her brain responded. She was found to have normal hearing in certain tones but has moderate hearing loss in others. She has hearing loss due to small ear canals but also hearing loss was noted at the auditory nerve. Due to small ear canals and her auditory nerve showing hearing loss, a regular hearing aide is not effective. She was signed up for BAHA hearing aide. My initial reaction was no no no to surgery lol, but after the dr explained to me that without the surgery she has no depth perception, no balance, so she won’t be able to walk or stand well or sit well or reach for things. This is why she reaches out with her hand the way she does, like she is searching with her hand instead of her eyes. When her left eye is turned in she can’t see out of it, only can see out of her right eye and vice versa. So basically the inner muscles of her eyes are too tight and pulling her eyes inwards, not at the same time though, so they have to fix it so she can see and she has moderate hearing loss, she can hear, just not well. mr.d and Sanibel 1 1 Link to comment Share on other sites More sharing options...
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