A super quick rundown of the last few months in as few words as possible. I'll go by each person in the family.
Natalie is now a kindergartner đČI almost homeschooled, like came millimeters away from homeschooling and then, after some good guidance from respected teachers, decided to put her in school for another year. My heart is still to homeschool in the future but we'll take it year by year. Natalie's kindergarten class only has 11 kids in it so it should be a very good fit for her. She had a summer filled with playgrounds, playdates, summer camp, and a great rec program run in our neighborhood. A busy Natalie is a happy Natalie. She spent a week in Wisconsin with her cousins, a weekend helping make campfires in Lake Placid, and will now experience Washington D.C. for the first time as someone old enough to appreciate it, this weekend.She loves to swim, make up songs and stories, collect Shopkins, and build crazy things with legos. She says she wants to be a rockstar artist engineer when she grows up. đ Here she is!
Matt and I have had a crazy summer. We had 2 kid-free getaways!!! In June we went to a B&B for a weekend courtesy of David's Refuge, a non profit organization in the area that takes care of caregivers. We had a beautiful weekend in Cazenovia and didn't have to plan a thing. Dinner reservations were taken care of as were accommodations. This is huge for us because Matt spends all day everyday planning things at work and I spend all my time balancing our therapy/school schedule. When it comes to scheduling something for just us we are both exhausted. What a treat to go away with everything just taken care of. In July our friend Jacque got married and we got a weekend away at a ski lodge in Pennsylvania. We spent both mornings sleeping in and reading on our balcony. Heaven. Seriously. Heaven. Here's us in Caz!
Lastly, Amelia updates! Amelia has officially aged out of early intervention! It's been a bittersweet transition. We had some amazing therapists that not only worked well with Amelia but listened to me and encouraged me as I was going through the stages of grief and acceptance of having a child with a disability. We will greatly miss her therapists.The good news is we got Amelia into one of the best integrated preschools in the county! This fall Amelia will be attending a preschool called Jowonio School. She qualified for preschool special education services so the preschool will be fully paid by the district and she will receive a one to one aide, 3x a week physical, occupational, and speech therapy, and 1 x a week vision therapy. She will continue to have feeding therapy once a week at home, which will be done by the same therapist she's had (who we LOVE). We are extremely grateful that Amelia will be going to this school, I've yet to hear a negative thing about it. I'm super excited to see how much more progress she'll make there. Here's a sweet pic of her before I go into medical updates!
This pic is so sweet because she's wearing the same outfit Natalie wore in a photo shoot she had with her cousin Hadley 4 years ago!
Onto the medical updates. A week ago Amelia had an MRI, a brainstem auditory evoked response test (BAER), and got a picture taken of her optic nerve. This week I got results to 2 out of the 3 tests. Firstly, praise God, Amelia's MRI was normal again! This is huge. We are very, VERY grateful to hear that news. This means that there is no evidence of degeneration, myelination issues, or major structural issues to the brain. The neurologist believes whatever is going on must be deep within the brain where a picture can't be taken. However, while we rejoice about this, we are dealing now with the fact that we got our first ever abnormal medical results (surprising given her delays!) The BAER test showed some abnormalities with how her hearing is being conducted in the brainstem. The neurologist wasn't able to explain fully, we need to see an audiologist but based on what he and Amelia's developmental pediatrician said, it sounds like she has the auditory version of her vision impairment. Meaning her ears are taking in sound correctly but there's a disconnect when it comes to her brain processing the noise. Her developmental pediatrician said she'd need to look more closely at the report but she suspects Amelia may have something called Central Auditory Processing Disorder. I freaked out about this for about 18 hours and then I talked with her feeding therapist today who made me feel more comforted. She said this is often found in kiddos with syndromes or full systemic disabilities. It's a common cause for language delay. She said there are lots of things that can be done to help kids, including amplification devices and communication devices. Kids with CAPD have trouble blocking out extraneous sounds and figuring out what sounds should be processed. It connects a lot of dots for us as to why Amelia has such a hard time with auditory input and why she's struggling to talk and, possibly, balance/move. The main way kids learn to move is by responding to their senses. Not only does she have low tone but it seems now like she is probably confused by all of her sensory input. Also we know that balance is largely affected by the inner ear and vision. We are wondering if something might be going on with her inner ear. A question we will ask an audiologist. In terms of her language delay, we know that kids learn to talk by watching facial expressions/lip movements and by mimicking what they hear. Amelia is experiencing a receptive and expressive language delay because she can't make sense of the input coming in. Matt said the good thing about all of this is we have a lead! She's shown "normal" on all of her testing thus far. This is the first time something has come back indicating a problem. This means we have a lead to follow!
As a good friend of mine recently said, a lead is good but also causes a major emotional roller coaster. I've been a bit of a mess since the neurologist called me at 4:45 yesterday evening. But it also seems fitting that Natalie and I have been reading the story of the Israelite's being led out of Egypt in the book of Exodus. We watched Prince of Egypt a couple of nights ago when Matt worked late and what's been continually coming to my mind is how desperate the Israelite's felt when they were blockaded by the Red Sea on one side and the Egyptian army on the other. But God is so powerful and makes a way for His people. He sent a pillar of fire to block the view of the Israelite's from the Egyptians and then He parted the sea. The Israelite's walked through and were finally freed from their slavery. Talk about God doing the impossible! It feels impossible right now to think about Amelia learning how to walk and talk with these seemingly huge barriers. But I'm reminded that God does the impossible. And even if she doesn't ever walk or talk, she is such a blessing and a gift. This doesn't mean God has failed to do the impossible. He's doing the impossible in our lives everyday. Her whole life brings God glory and I know, even when I don't FEEL it, that all of this is for our good. God is working His purposes through her life. How thankful I am for that!
Please be praying for direction as to where we should go next with Amelia and that we would have a smooth transition into school for both girls. Thanks for following along and encouraging our family. As I've said before, I'm not always able to respond to everyone's comments but I appreciate each of you and re-read all of your comments even if I can't acknowledge them. Thank you from the bottom of our hearts for prayers and encouragement.
Here's a favorite pic of the 4 of us to end this post off right đ
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