A snapshot of our week:
Home health care nurse visit
Neurology eval
Pediatrician followup
Infant toddler program visit
Occupational therapy
.... that was the first day...
Next day was ophthalmology followup (every two weeks) more OT
Norco medical supply delivery (twice because at 9 pm the oximeter went kaput and they did a night delivery)
And so on.
I am in a constant state of worry that I've forgotten some important appointment.
Ah the life of a "medically fragile/complex" family!
Loie is growing! She met her last weight goal, low side, but still met it! She's at 7 lbs 12 now! Struggling to increase her volume of intake cause she spits up a TON and gets refluxy.
She has started smiling at her jingly toys! She likes the sound I think :) this is a huge deal to us! Seeing her smile is another big milestone and we are grateful for each one! She also lifts her head really well during tummy time! No "cooing" yet, which is ok cause really she's kind of a newborn/ 1 month old more than a 4 month old. She is still very very quiet. She only cries if she has a bad gas bubble, or if we took wayyyy too long to make her bottle. Worries me because at night when she is hungry she doesn't cry. Just fusses about, grunting and kicking and smacking her lips. Good thing I'm a light sleeper! We know she CAN be loud because I've attended her eye exams.. terrifying. She has different cries, hunger, pain, etc. This is different, this is sheer panic. It is the worst sound... I hate those appointments so much... but anyway, her right eye is looking good, her left is still in at stage 1 of ROP. Not a big deal right now. Could be later, but we are keeping "an eye on it" ha! Bad joke..
Her Neuro appointment was okay, met the doctor and really liked her because she is open to the concept of neuroplasticity and not just, brain damage is what it is, there is no "Getting better "
We are on seizure watch for Loie, she is at high risk for seizures :( I asked for how long she is at risk- basically 10 years. Sigh. Also, sweet as the doctor was, she burst my bubble a little bit. She said the signs of cerebral palsy and muscle tightness/ impairment, don't start to show up until around 6 months of age typically, so it's "normal" that she shows no impairment right now. It's just hard to hear each time we are reminded how sick she is. We can only keep her in therapies and hope for the best! We haven't even had her cardiology appointment yet, another thing I often forget about in the hustle of our days, her congenital heart defect. That bridge will be crossed at 9 months of age, and I'm nervous what they will say.
I'm nervous all the time.
Lennon is learning to help put on/off his shoes and socks, and is starting to act like a 2 year old... yet overall, he is still our sweet, low maintenance tender hearted little boy :) he loves to hop, run, scribble, spin, climb, and make messes. Right now he is throwing his boots across the room. He has also developed a liking for my phone... he called the neurologists office! Awesome. And texted a random number the following:
"Stuart out nb Zhouyl ml sassŹ"
No joke... so weird! Anyway, I put a lock on my phone. He bypassed it somehow. ???
These kids... lol
Home health care nurse visit
Neurology eval
Pediatrician followup
Infant toddler program visit
Occupational therapy
.... that was the first day...
Next day was ophthalmology followup (every two weeks) more OT
Norco medical supply delivery (twice because at 9 pm the oximeter went kaput and they did a night delivery)
And so on.
I am in a constant state of worry that I've forgotten some important appointment.
Ah the life of a "medically fragile/complex" family!
Loie is growing! She met her last weight goal, low side, but still met it! She's at 7 lbs 12 now! Struggling to increase her volume of intake cause she spits up a TON and gets refluxy.
She has started smiling at her jingly toys! She likes the sound I think :) this is a huge deal to us! Seeing her smile is another big milestone and we are grateful for each one! She also lifts her head really well during tummy time! No "cooing" yet, which is ok cause really she's kind of a newborn/ 1 month old more than a 4 month old. She is still very very quiet. She only cries if she has a bad gas bubble, or if we took wayyyy too long to make her bottle. Worries me because at night when she is hungry she doesn't cry. Just fusses about, grunting and kicking and smacking her lips. Good thing I'm a light sleeper! We know she CAN be loud because I've attended her eye exams.. terrifying. She has different cries, hunger, pain, etc. This is different, this is sheer panic. It is the worst sound... I hate those appointments so much... but anyway, her right eye is looking good, her left is still in at stage 1 of ROP. Not a big deal right now. Could be later, but we are keeping "an eye on it" ha! Bad joke..
Her Neuro appointment was okay, met the doctor and really liked her because she is open to the concept of neuroplasticity and not just, brain damage is what it is, there is no "Getting better "
We are on seizure watch for Loie, she is at high risk for seizures :( I asked for how long she is at risk- basically 10 years. Sigh. Also, sweet as the doctor was, she burst my bubble a little bit. She said the signs of cerebral palsy and muscle tightness/ impairment, don't start to show up until around 6 months of age typically, so it's "normal" that she shows no impairment right now. It's just hard to hear each time we are reminded how sick she is. We can only keep her in therapies and hope for the best! We haven't even had her cardiology appointment yet, another thing I often forget about in the hustle of our days, her congenital heart defect. That bridge will be crossed at 9 months of age, and I'm nervous what they will say.
I'm nervous all the time.
Lennon is learning to help put on/off his shoes and socks, and is starting to act like a 2 year old... yet overall, he is still our sweet, low maintenance tender hearted little boy :) he loves to hop, run, scribble, spin, climb, and make messes. Right now he is throwing his boots across the room. He has also developed a liking for my phone... he called the neurologists office! Awesome. And texted a random number the following:
"Stuart out nb Zhouyl ml sassŹ"
No joke... so weird! Anyway, I put a lock on my phone. He bypassed it somehow. ???
These kids... lol
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