Others often have questions about our family, about our special needs child, and about how we make it all work. So this post is devoted to Micaela with a huge shout out to my unsung heroes: Micaela's big sister, Adela and Micaela's amazing father, who was working sunup to sundown this day. Micaela was born three months early and suffered grade IV bilateral cerebral hemorrhaging (the worst possible level of brain bleeding). This ended up killing off about half of her total brain mass. So, she has a lot to overcome. However, everyone around her is amazed at what she is learning. God sure has a way of making people pay attention to His work, doesn't He?
6:30am Micaela is the last one out of bed. She is secretly not a morning person. I get her out of her pajamas and do some sensory brushing and joint compressions. Then it is time for breakfast: Pediasure + water through the G-tube machine and some vanilla puffs to eat orally.
Whoa, whoa...I hear you. Some explanation is in order.
Micaela is a G-Tube fed toddler. She gets nearly all her nutrition via a G-tube (a hole in her stomach with an access point on the outside where I attach and detach a feeding tube.) Her doctors and therapists do not think it is permanent, it is only to get her through these early years because of an intense aversion she has to scents and flavors. She is stressed and intimidated by eating. Right now she will only eat things that are dry to touch that she can put in her mouth herself. She will also drink a little water but she wants to have control over this as well.
7am Micaela is out of her highchair and ready to play. Micaela likes to listen to books read, play with blocks, and try to imitate her cool older sister, Adela. Right now Micaela gets where she wants to go by rolling. She likes to grab toys off of shelves and generally make a big mess--just like a normal kid.
8:30am Therapy time! The low muscle tone and sensory issues she has are sometimes treated well with therapy. So, about every two hours I stop everything and brush her with a special scrubby pad and do joint compressions.
9:15am Eating again. We feed her five times a day: breakfast, snack, lunch, snack, dinner. It ends up being about every three hours. Each feed is Pediasure and water via the G-tube. Today she ate vanilla puffs, yogurt drops, cookies, crackers, and part of a chicken nugget by mouth. Excellent work Micaela!
9:45am Playtime. Micaela has a new game: Give Mama a Lego car and watch her roll it. So much fun! Then we do massaging and Physical therapy to keep her flexible and teach her how to move her body. Our goal right now is to learn how to crawl. We make progress every day.
12pm Lunch and naptime. Micaela sleeps in a sleep-sack. She is not quite ready for a real blanket. She feels cozy in this custom-made thermal sleep sack her Abuela (grandmother) gave her. And Adela takes a nap in our bed because they tend to play a lot if they are together. Micaela only sleeps 45 minutes today and then is up again.
3pm Snack followed by playtime outside. It is such a pretty day. Micaela can smell trees, touch rocks, and play with the dog. Today it was so warm I left her socks and shoes off and let her feel the gravel underneath her feet. So many new textures, sights, and smells for her to experience out here. It is also fun for Adela to show her litter sister new things.
When we got back inside, the girls got into a disagreement about who gets to play with a puzzle. It is such a relief to see Micaela express herself. She cannot talk yet. For some unknown reason, her cerebellum never developed completely. The cerebellum is in charge of speech and balance. That, on top of the damage from the hemorrhaging, Micaela is going to have a tough time making her thoughts and opinions known. She just recently started to throw little Micaela-style temper tantrums.
At the end of the day, the girls are back into their comfy pajamas. They watch a little TV and then we eat dinner before bedtime. Both girls are in bed and sleeping by 7pm.
So, that is a normal day for us. Some days are more hectic with therapists visiting or doctor appointments. She has Occupational Therapy, Vision Therapy, Physical Therapy, Speech Therapy, Feeding Therapy, and Mobility Therapy. Her health is very stable (thank You, God) but she has several specialists who monitor her since she is at high risk for various health conditions.
Someday I am going to read back over this and say "Whew! I'm glad that is over."
Or, I might say, "Wow, I miss those days." :)
Jesus said, "Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these." Matthew 19:14 NIV
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"...and God was already there with me."
The Beautiful Day Project
My name is Lora and a few years ago I tumbled into fear, believing that my world would never emerge from the nightmare of uncertainty. However, when I looked up I found beauty in all the little things. God was already there with me. The joy of having a beautiful day is not in luck, but in resting in my walk with Him.