-still off O2 during the day (I count this among the biggest miracles of her life), not at night.
-no heart monitor or feeding pump. we monitor O2 sats as needed.
-no seizures since leaving the hospital last September. I am thankful for this everyday! Lots of kids with neurological impairments have uncontrolled seizures:(, but L's meds are very effective for her.
-she gets all nutrition via her G-tube and slow weight gain is still a huge issue for her. she gets "tastes" of crackers and baby foods, but can't have any liquids because she aspirates (gets it in her lungs). she gets 6 oz of high calorie formula 5x/day, plus oil for extra fat/calories. always wishing i could give her some of mine:)
-she now gets physical, speech, occupational, and play therapies once a week...praise the Lord, they come to us because of danger of illness.
-she has a progressive and "impressive" (this is doctor speak for 'bad') spinal curvature and "twist". we are waiting/watching, hoping to make it to 2 years before beginning the process of bracing, casting, and then rod placement. it sucks. i don't really like to think about it.
-her heart is doing great...functioning well with medication. still looking at closing one of the holes (ASD) around 2.
Some of my big concerns right now:
1. really low muscle tone. although we are seeing improvements, Lilah continues to have very limited head control. her weakness is every muscle throughout the whole body, and impacts everything from a health, social, and physical standpoint.
2. lots of mucous. i know, this is disgusting....but it gags her, makes her vomit, and seems to be causing constant ear infections. i'm sure tubes are in our future.
3. i feel like she is wanting to be engaged with toys and people at a level beyond her physical ability and this breaks my heart. we've ordered a special chair that is supposed to support her really well and hopefully make things a little easier.
Things we are so thankful for:
1. no daytime oxygen:)
2. better sleep
3. she is happy, happy, happy!
4. she can make choices between 2 toys, has begun to babble the tiniest bit, and has rolled over a few times.
5. she is so engaged socially and this is a great sign for her cognitive ability. she knows familiar faces, fears strangers, and prefers boys (particulary her daddy). she holds her arms up to be picked up and fusses when she's left alone. she has favorite toys, 'plays' with her brother, and gets her own paci if she can reach it. she likes her bath (which is good because she sweats a lot!) and loves to talk to herself in the mirror.
One of my biggest fears when we got her diagnosis was that she would lead a life of mere existence. While I morn her inability to have anything close to 'normal' 10 month old's life, I truly believe that she is enjoying her life. And for that, I am most thankful!
3 comments:
Gina, we are so thankful that Lilah is not merely existing and that she is off oxygen during the day. She is such a joy and her smile is infectious. :)
We are praying for a miracle with her spine and we continue to pray for a miracle with her overall health.
We love your sweet family. Thanks for the regular updates.
Gina it's so nice to hear how Lilah is doing and hear about all her achievements! I'm so happy that she (and you) are happy and have so many things to be thankful for when faced with such a challenging road.
Thanks for the update. XXX
Thanks so much for the update and praise be to our Lord for the miracles He continues to work in Lilah's life.
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