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Meet my granddaughter Faith Marie


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As told by her mother Brandi... So many of you have been wondering how Faith is doing. Thank you all for your thoughts prayers and support through this journey. Faith had a rough start since bein

Today Faith Marie is 3 months old. She is 8# & wearing 0-3 mo clothing.

Yesterday was Faith Marie’s 8th month birthday. She is 13# & 24 1/2” long. She loves most baby foods, loves to “talk”, & knows who is talking to her. She has been learning so much stuff this p

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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.

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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.

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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.

 

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