And Just Like That...

Somehow it's been months since I last posted an update. It feels like I blinked and we went from the summer to February. On the one hand, no update is good because it means there hasn't been any major news, but then again, Amelia is always progressing and I haven't shared it! 

Today I will take advantage of the fact that I was sick in bed with a stomach bug all day yesterday and slept about 7 hours during the day and another 9 last night.Usually I nap during Amelia's nap but today I feel better enough to not sleep but not well enough to actually be up and working around the house. Perfect timing to write a blog post!! 🤷 As a mom you take what you can get, right??

This post I'll update by season.

Fall: Natalie started kindergarten in the fall at Faith Heritage School! She has been really enjoying spending time with friends, learning how to read, and is growing in how to be respectful and kind to all around her. She's also made huge progress in transitioning from one activity to the next and is learning how to turn a bad situation into a better one. She is very honest with me and admits any time she's gotten in trouble at school which gives me the opportunity to work with her and help her. I'm very thankful for this rare truthfulness and praying it keeps up for awhile!! 

Amelia started a 3 year old program at a special integrated preschool and she has blossomed over this year. She has amazing teachers, aides, and therapists. I can't begin to explain all the progress she's made. I'll post pictures and go in depth at the end of this post. 

We did as many of the fun fall activities as we could - apple picking, leaf piling, leaf jumping, leaf throwing, all the leaves?? Natalie made a fall bucket list and we checked off as many things as we could including drinking hot cider, getting donuts, LEAVES, and carving pumpkins. In November we celebrated Amelia's 3rd birthday! We had some friends over for dinner and sang happy birthday to a very excited little lady. She loved watching all the kids play and Natalie was able to be an awesome big sister helper.

To end our fall season, I went and got myself  appendicitis... just to jazz things up apparently. The Sunday after Thanksgiving I was up all night with searing abdominal pain. It somewhat subsided partway through the day Monday so I figured I had a weird stomach bug. After being nauseous and unable to eat all week I went to the doctor on Friday and she sent me for a CT scan. I had an appendix double the diameter it should be!! Went into the ER but the odd thing was my bloodwork was all normal and I wasn't in excruciating pain, just slightly nauseous. The surgeon said I would be a good candidate for antibiotic therapy and they admitted me on IV antibiotics to wait and see how I did through the weekend. Matt joked that it was an all expenses paid mom vacation getting to spend the weekend in a hospital... however having an  IV in the crook of my arm so I couldn't bend it to hold a phone, text, play games, etc. coupled with a roomate who was also on round the clock antibiotics (that IV machine is super loud when it's letting you know it's done with a treatment!).. made it so there was very little sleep and ability to laze away on my phone. By Sunday I still wasn't able to eat without stomach pain so I asked the surgeon if he could just take the darn thing out. He agreed and I went into surgery later that afternoon. Monday I was finally sent home with instructions to rest up and not lift anything bigger than 10 lbs for 3 weeks. Amelia is 25 lbs. Yup, this was going to be fun. Thankfully we have a wonderful support system, our framily (friends+family = framily) the McBride's took our kids throughout the weekend I was in the hospital, my mom flew up from VA to help for the week and my cousin Jess picked Amelia up from school everyday and put her down for a nap. Matt was able to take some Family Medical Leave time to cart kids around for school. It all worked out. Phew! Glad that's done and over with! And, I found out at my post op that it's good I got my appendix out because I had chronic appendicitis and even if the antibiotics had worked, it would've come back anyway!!

Here are some pics of the girls at the Mcbride's. They had a blast while mommy was gone. 

Winter: 

For Christmas this year we went to stay with my parents in Virginia where my dad was doing an interim rector position at an Anglican church in Woodbridge. We were able to explore DC a couple of the days, see the capitol Christmas tree, and have a nice chill time with family. This Christmas, being in a small apartment, transplanted away from all of our normal Christmas things, was helpful for all of us to remember that the joy of Christmas does not rely on our traditions and decorations. It's about family being together and most importantly God fulfilling His promise of salvation by sending Jesus as a baby. 

The rest of this winter we've been doing everything we can to stay warm. Which means I'm usually under a blanket with a cat on my lap anytime I possibly can be. 

That comic pretty much sums up my winter existence. Natalie has been reading everything she can, making art at her new art desk, and is always asking questions trying to learn new things. I really enjoy spending time reading with her, playing games, and that when I snuggle up with a blanket on the couch, she's guaranteed to join me. 

Now, onto Amelia updates. Amelia is now sitting independently for up to 5-10 minutes. Guys, this is HUGE. The fact that she has reached this milestone is amazing. I'm so thankful for the connections God is creating in her little brain and for helping us to rejoice over these kinds of milestones. 

She is babbling constantly. When she sees or hears Matt she says, "dada!!" or " dadadadada" and gets all excited! She says, "hiiii!" occasionally when she sees someone new walk into a room, and I'm pretty sure she says "babababa" when she's hungry and wants her bottle. Again, this is so exciting for us because it's showing progression towards speech!! 

She is starting to push up on her feet in a standing position. The school that she attends has a harness system that helps kids learn what it feels like to be upright and bounce or walk depending on their developmental level. Right now we are just getting her used to standing and bouncing. But I notice her push to a stand when I'm just holding her now. Something she never used to do. 

She is also becoming much more aware of what's going on around her. She notices the cats more often. Especially because they've learned that it's advantageous to them to sit next to her during mealtimes since she drops lots of good food. One of Amelia's favorite foods to finger pick is lunch meats and soft pulled chicken. A cat's dream!

Her OT at school programmed her button to talk about her cat Isaac and she had conversations with her classmates about Isaac using her button. Again, this school is just so amazing, I'm beyond impressed and so excited to see what more she learns over the next couple of years!

That's about it for updates. As always we are trusting in the Lord for our daily sustenance and perseverance. We recognize how much good He is bringing through this little lady's life. The changes He's creating in myself, Matt, and Natalie are amazing. We've been learning in church this month about how God is creating us to be more like Christ. Many times this is done through suffering. We see the fruit of the Spirit (love, joy, peace, patience, kindness, gentleness, goodness, faithfulness and self control) being created in us through the suffering of processing having a child with a disability, in the midst of questions that don't have answers, in the beauty and compassion of loving those with differences, and rejoicing in what matters most - God's salvation. 

A song that's been on repeat in our house that I've been telling everybody I know about is Lord From Sorrows Deep I Call by Matt Boswell. We sing this song at our church and it's beautiful to be on worship team and to look out and see our congregation, our church family, singing this song at the top of their lungs. Especially knowing that most are going through some kind of suffering. I hope it blesses you like it blesses us. In fact, the whole album is amazing. I definitely recommend taking a listen. 

Thanks for following along! Hopefully I'll update sooner than later!!

Results and Emotional Rollercoasters

It's been a very long time since I've updated everyone through this blog! Somehow time just always gets away from me. And when I have a moment to sit down and type out a post, I'm too exhausted to think through one. This time, however, I feel the best way to write an update is to write a blog post.

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 😲I 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. 😜 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 😁

Closed Doors and Perfect Timing

I apologize to all teachers in advance, (and I really totally understand why you need it so please don't be upset with me) but....

I sometimes wonder if the only people benefiting from school breaks are those lucky folks who get to go south for a week without denying their children major information that will definitely "be on the test later" and teachers. It's Friday and I feel like I've just exited a war zone. I've cleaned more puke this week then I've ever done in my entire life. I've heard more screaming then even on the worst newborn days (okay so maybe let's not count Amelia's colic....). And I've listened to and had to discipline enough whining/sass/squealing that I'm seriously wondering how we'll make it out alive from the teenage years. 😂

Needless to say, over here at the Unright household, we are all ready for break to be over. I was about to type "It was a great first few days of spending time at home together!" But then I remembered, "Oh wait, Natalie spent the first 2 days throwing up and Amelia spent the next 3-4 throwing up. Oh and my husband was out of town. And Amelia's body also thought it was the perfect time to cut a molar. And Natalie is a cat and can't handle routine changes so she fell apart..." 

I would go into all of the craziness of the week but it would take longer than the hard seltzer in my glass and I really just don't want to relive it! I'll sum it up with a few words: puke, husband travel, broken cars, stranded home, puke, colds, temper tantrums. But before I start being all, "woe is me it was all bad," I could also add words in like, snuggles, reading books, conversations, new skills, smiles, and helpfulness. Because it wasn't all bad. The bad is what I remember because this afternoon was just rough. This afternoon was like:

👆 Me (from my dark bedroom upstairs) to my cousin Jess who lives with us and was cleaning up Amelia's spit up for me (THANK YOU JESS)

The other thing this afternoon brought was a closed door that hit me on the butt pretty hard. The Undiagnosed Diseases Network got back to me today saying that they have decided not to take Amelia's case. It's been almost a year of working on this application so it hits hard that we've been denied. When I first got the phone call I was okay with it. I reminded myself that we don't need to know a diagnosis to love on Amelia, her cortical visual impairment diagnosis will be a ticket to many of the services she needs, we'll just treat the symptoms not a label anyway, etc. But it still really stinks!! This would've gotten us a step closer to having answers. Or so I think. I also remember that there are 4 scenarios that could've come out of her involvement in the study. 

1 (ideal scenario). We find out the genetic mutation causing her symptoms, we get an idea of a prognosis for her, we are able to find a support network of other people familiar with the diagnosis.

2. We find out a genetic mutation but no clinical significance is known so, while we know the gene possibly causing her symptoms, we aren't closer to finding out a prognosis or a support network.

3. We find out she has something degenerative and are given a not so happy prognosis.

4. We find out nothing.

I do understand that being able to mentally prepare for regression is important, however, I'm not sure I would've appreciated the 3rd scenario. I want to love on my girl without having questions and fears about when her condition will worsen, etc. I know that many people live with that fear and God can take care of that fear, but I'll be thankful for ignorance if that's what God is calling me to instead of be angry that I don't know. What if God's plan is that I not know so I'm not anxious everyday of my daughter's life? I already battle anxiety on a daily basis! But, of course, we have been reassured that most likely it's not degenerative so I won't even go down that path except to say, "Thank you God for taking care of my girl and knowing what's best for all of us."

And, looking at the other scenarios, in the end, we aren't losing out on much. Yes, number 1 would have been AMAZING but I'm not convinced that would have been the likely scenario anyway. I think it would be a toss up between 2 and 4. Again, I go back to knowing that we treat the symptoms, not a label. She's getting all the therapy she needs and we just thank God with every tiny step forward she makes.

The blow is also made much lighter in the event of a new development that happened this week: while we were denied from the UDN we were accepted into the Rare Genome Project!! This means that a whole genome sequencing will be done on our whole family for free! It'll take longer for results (6-12 months), it's not clinical so no one will be looking at her, they'll just be looking at her genes but we could potentially find out information from this as well. This is a major praise and God provided it right when we needed it. We had the interview yesterday securing everything for the project and then today I received the denial to the UDN. Again I say, God's timing is perfect. 

We are still taking comfort that God knows what our little lady has. He knows what she needs and we trust He'll reveal that to us when we need to know it. Sometimes I wonder why He can't fully equip me now with everything I need and then am reminded that the beauty of God's grace is that His timing is perfect and we can trust He'll supply us with every need when the need arises, He knows our needs better than us! 

I'll continue to update as we learn more. Right now this mommy brain is fried and needs a Friday night off! Praying you all have a blessed weekend and thanks, as always, for following along.

The Waiting Game and New Adventures!

Waiting is not my strong suit. 

Looking back over the course of my life I see that patience has never been something I've "mastered". When I was in college a friend of mine put me in "patience bootcamp". He told me that he was praying daily that I would gain patience, no matter what trials I would face in order to do so. It was the only time in the 4 years I commuted to and from Albany to Rochester that I had issues driving on the thruway! Something so small but so extremely frustrating for me. One commute took me 2 hours longer than the normal 4 because of a fluke traffic jam (the cause of the jam? A tractor trailer in each lane deciding to hang out and never really pass the other. I've never seen anything like it since.) Another trial sent me through Syracuse in a major snowstorm, during which time my car ran out of windshield wiper fluid and I had to stop at a rest stop and figure out how to fill it back up! These are small examples but that whole time was riddled with really strange trials that required patience. I think I gained a little more patience during my "bootcamp" experience but really the trial of having a child with special needs has dramatically increased how patient I am. The reality of a child with no diagnosis, no way to know what is going on under the surface, constantly waiting for results, doctor appts, phone calls.... These things have increased my patience. Because I have absolutely no choice but to wait.

Right now, I'm waiting for results from the Undiagnosed Diseases Network about whether or not Amelia is accepted into the program. I've been checking the mail religiously since the beginning of January. They gave me an estimated time of mid-January to receive a letter telling us whether she's accepted or denied. Still haven't received anything. We started this process last April! It's taken 10 months to get to this point.... sometimes I just get so frustrated I don't even know what to do. Do I call every minute until someone answers? Or just be patient as I wait for someone to return my voicemail? Probably the latter... but I don't want to wait! *insert foot stomp here*

The month of January was also the month of waiting to decide whether to call the doctor about various symptoms my daughters' were showing. This was agonizing for me because I was putting my children's well-being completely on myself. (Can we talk about unnecessary anxiety??) Whether I called or didn't call the doctor would affect my children's outcomes which would then reflect back on me as a parent deciding whether or not to call. Do I call for something silly and incur a $75 bill for nothing? Or do I not call and miss something huge?? With Amelia, the unknowns are scary! She spent all last week excessively rubbing her eyes. Eye rubbing shouldn't be a concern. But in a child with an unspecified vision impairment and developmental delays?? Is it still not a concern? So I called the pediatrician last week who said to call the ophthalmologist. Who didn't get back to me for a whole day....when anxious thoughts are saying things like, "there's probably pressure building in her eyes...she's going to lose what little sight she has left because you didn't act quick enough," a whole day is agony. I called the next day and they told me her ophthalmologist was out of town. "Try warm compresses and call back next week when he has returned," is what they said. Hmph. Then her vision teacher suggested I get her in to see an ophthalmologist in the Syracuse area (Amelia's is in Rochester). So on Friday I called and was told I needed a referral from the pediatrician's office. I called the pediatrician who said they'd get a referral packet faxed over and they'd contact me when an appointment was made. More waiting! A full weekend of waiting, praying off anxious thoughts, and trying to keep her from rubbing her eyes. Side note: we noticed she didn't rub her eyes with her glasses on! Interesting! So I kept her glasses on constantly. Monday: no word from doc. Tuesday: nothing. Wednesday: I called the new ophthalmologist office and explained the situation. They got me in same day! (Becoming a special needs mama has also made me a major advocate and someone who doesn't care as much about "annoying" people by calling "too much".) I brought her to see the doc... who said she probably has the start of allergies. No pressure build up, no infection, nothing new. Phew! So I probably just incurred the most expensive peace of mind possible by bringing her to a specialist visit for "nothing". But peace of mind is not "nothing" and many times is worth it.

Now onto some of the deeper stuff. Amelia's doctor's appointments are not easy. Physically she's pretty good, she hangs out in her stroller, yells at the doctor, this particular appointment she blew out of her diaper all over me, y'know, the Amelia norm 😆. Emotionally, however, they are rough. "Any underlying diagnoses?" asked the nurse. "Ummm... what kind are you looking for?" I respond. "Anything she's been diagnosed with." "Well, okay, unspecified vision impairment, cortical visual impairment, hypotonia, global development delay..." I trail off as the nurse furiously scribbles on Amelia's chart. I look down at my toddler who looks like a 6 month old and think, "She's 2... non-mobile, non-verbal, cognitive skills unknown..."  I have to stop myself in my tracks. That's what these appointments do to me. They remind me of what I already know: my child is not at an age appropriate level. And I'm okay with that, most of the time. I've accepted it and I love her either way. But that doesn't keep fear from creeping in; or questions from hounding my brain... "how am I going to change her diaper when she's too big for the changing tables?" "how am I going to carry her up the stairs when she's 10 lbs heavier?" "will she always be so floppy?" "what does our future with Amelia look like?" These are questions I have to remind myself don't need answers now. And we've come full circle back to waiting! These questions will be answered in time. And they will be answered when I need them answered. God's grace is available at the time we need it, not in advance. I know that He walks me through these things - I've seen it through this whole journey - so I don't need to doubt that He'll answer my questions when it's time. 

I always like to include a song in my blog posts that has been encouraging to me and that God has been using to bring peace to my soul and remind me of who He is. The song Yet Not I But Through Christ in Me by City Alight has been played on repeat since Matt introduced me to it a few months ago. It is such an encouraging song! A reminder of who holds my life: Christ. Who life is really all about, not me or my kids but Christ!

The second verse says, 

"The night is dark but I am not forsaken, 

for by my side the Savior He will stay, 

I labor on in weakness and rejoicing, 

for in my need His power is displayed. 

To this I hold, my Shepherd will defend me, 

through the deepest valley He will lead! 

Oh the night has been won and I shall overcome 

Yet not I but through Christ in me." 

What a verse! "For in my need His power is displayed." I can really beat myself up sometimes as a mom. And as a mom with special needs it's even worse then it was before I had Amelia. Last night I was plagued with the thought that I somehow had contributed to Amelia's slow development because I didn't work with her enough. "I was battling depression and anxiety through her first 18 months and she's been negatively affected as a result." I know that's a lie. That is false. I know that I will fail as a mom. But I know that God will use it for His glory. And that He shows His strength when I'm weak and falling apart! How beautiful to have a God that is near to us when we call to Him. Today's bible verse on my bible app was so encouraging to me: Deuteronomy 4:7 "What other nation is so great as to have their gods near them the way the Lord our God is near us whenever we pray to him?" God is near to us when we pray! He will lead us and defend us through the deepest valleys.

The last verse of this song is also something I meditate on often. It says,

"With every breath I long to follow Jesus, 

for He has said that He will bring me home. 

And day by day I know He will renew me 

until I stand with joy before the throne. 

To this I hold, my hope is only Jesus. 

All the glory evermore to Him! 

When the race is complete, still my lips shall repeat: 

Yet not I but through Christ in me." 

The third verse about how our sins have been forgiven through Christ leads into this verse about the end of life. Someday we will stand before the throne of God. And those who love Jesus will be Home. Eternally at peace. Done with the race. Joyfully praising Jesus for His grace.  "All the glory evermore to Him" We were created to bring glory and to have hope in something as human beings, sometimes we bring glory or place our hope in our families, our houses, our successes. But the only hope that will ever fulfill and the only thing worthy of our glory is Christ. And when we realize this we can have ultimate peace and comfort. We will know that these things (houses, cars, kids, success) are only temporary but the hope of Christ is eternal. Last year, Matt and I lost a dear, dear friend of ours. He was only 27 and he suddenly died of a heart condition that still hasn't been determined. His wife and very young kids are still like family to us and I have seen how the hope of eternal life in Christ can sustain those left behind on earth. Sometimes the only thing keeping my friend going is knowing that her husband is with Christ where he is whole, complete, and has finished the race. She knows she'll see him again. In her 3 year old daughter's words, "Daddy is in heaven and now Jesus has a friend." *Cue major sobs here*  For Matt and I, the hope of eternal life also brings a strong desire to see Amelia whole and not limited by her earthly disability. I am so comforted to know that when she gets to heaven she will be whole again. I know this is the hope and prayer of many parents whose kids have a disability of some kind. But what a relief it is to know that all the struggles we face on earth will fade away and we will have forever peace with Christ when the race is complete. Praise to Him for His sacrifice on the cross.

Lastly, NEW ADVENTURES!! See these 2 faces?

These beautiful little girls are named Lillie and Josie. They are who I get to spend the better part of 7 weeks hanging out with! Their mama, my very good friend Katie, is going to be with Amelia at her school doing physical therapy work during a maternity leave while I'm hanging out with her 2 girlies! Let's talk about another change God has worked in my life through Amelia: before Amelia I would have NEVER considered doing childcare. EVER. Admittedly I was way too selfish with my time. Didn't want to deal with screaming kids. Didn't want to deal with behavior management. All the things that come with watching other children I wanted no part of. Well, I have now been mothering a perpetual almost newborn for 2 years so it's just kind of something I do. Plus, God has really worked through a lot of my selfishness (believe me, the struggle is still REAL but He's really changed my heart in huge ways). So when Katie asked if I would watch the girls for her, I considered it for 5 minutes and decided I was super excited about it! I know it's not going to be easy. Tuesdays and Thursday I'll have Natalie, Amelia, Lillie, and Josie all to myself. 😨 (Let's give mama some wine on those nights!) But I know it'll be full of joy regardless and I love that God has put me in a position where I can serve a family who has given so much to ours and I can contribute to our household income which is something I've been praying about for quite awhile. It's also temporary which brings comfort to Katie as she will really miss being home with her kiddos and to myself as I figure out how special needs parenting and childcare work together. So prayers for all of us as we work out the details and embark on this new adventure!

As always, I thank all of you for following along, for your encouragement and comments. I apologize I don't always answer comments or messages in a timely fashion. I'm trying to get better at it! I pray you're all blessed and have a beautiful, WARM weekend. God's peace to you all.

5 Lessons Learned This Autumn Season

We've had a bit of an eventful fall over here in the Unright household. Matt went away on a business trip for a few days at the beginning of October, got home on a delayed flight at 3:30am 😴.... and then left on another business trip for 2 weeks the next day! Phew! It was a long haul for us filled with doctor appts, illnesses, and new experiences. However, as with all struggles, lessons were learned and sleep was caught up on....eventually.



Lesson 1. I am more resilient then I give myself credit for. Or, to be quite honest about my limitations, God enables me to be more resilient then I ever trust Him to do. I was not dreading this trip of Matt's as much as I have in the past but there were many times during the 2 weeks where I threw my hands up in the air and said, "that's it! I got nothing left! We're just going to watch TV for dayssssssss"  The thought of having to feed  (and fight?😑 can I get an AMEN to the fight of feeding a 4.5 year old????) one more dinner or do one more bedtime by myself was daunting. But we made it through with God's grace and the help of many good family and friends.

This is Natalie as we were packing up the car to move into our good friend's Katie and Nate's house for a couple of days.The sass on that face was the attitude of the first week Matt was gone. I kept telling people that Natalie is like a cat, change one thing in her environment and the world is turned upside down. 😆

In other resiliency news, today I managed to bring both kids to Amelia's gastroenterology appointment in Rochester by myself! Me vs 2 kids and it actually went as well as I could have expected. There was one block tower kicked over in the waiting room when Amelia was called back but I call it a win that this was the only display of disobedience. Natalie doesn't tend to enjoy when Amelia gets all of the attention, and let's be honest, doctors are very curious about Amelia and the appointments are all about her so....Natalie tends to act out. But today she did great! Even though, naturally, I totally forgot Natalie's tablet. Instead, while I was talking with the NP, Natalie took the book we brought and pretended she was creating and performing on a podcast 😅 Love her imagination.

Lesson 2.  Amelia is a champion eater. Her new favorite food is strawberries! She loves them, I bet she'd eat them for hours if I kept putting them in front of her. She has been trying everything we give her and loving most of it. This is a huge blessing because many kids with the types of delays Amelia has are not great at eating. One thing we have going for us is Amelia's appetite, her quick learning when it comes to oral motor skills, and her openness to new foods.

Lesson 3. Sending Amelia to program was one of the best decisions we have made for her. Many of you know that I was very apprehensive about sending Amelia to "school" this young. Not even 2 yet, I was very unsure what benefit school would give her especially since it meant all of her therapy would move to a group setting and not be based out of our house anymore. Well, this child is a completely different kiddo now! She doesn't fuss in large noisy crowds anymore, she goes in the nursery at church on Sundays without her headphones, she plays with Natalie instead of cries at her volume level (😆)  She has been thriving since she started in September. She's a rolling fiend, she can get pretty much anywhere now by rolling. She pushes up on her arms while on her belly (huge deal because that moves us closer to crawling!) and she sees toys far enough away that she wants to move towards them.

She had a developmental pediatrician appointment in October that was actually very encouraging when I got over the fact that we were told she has a moderate to severe motor delay (my 2 year old can't sit.... I probably knew it was severe already but still hard to hear). She told us that Amelia's tone isn't actually that low and the fact that she's been consistently progressing suggests she'll most likely continue to progress. Still unsure of a diagnosis but encouraging and hopeful nonetheless. She couldn't answer the big "Will she ever walk?" question but I'm understanding that no answer is better than someone giving us a hard "no she won't" because we'll be working her to that end either way. Kids defy expectations all the time. God can do the impossible. We have many ways to help her start bearing weight on her feet and move towards standing/walking. Including her little ankle-foot-orthotic shoes and her stander!

At the beginning of November Amelia had a neurology appointment. Dr. Stone looked at her tone and told us the same thing as the developmental pediatrician - she has low tone but it's really not that low! She definitely has some strength so we should keep working her muscles! Amelia is a wiggly little kiddo so he took a video of her movements and sent them to the movement specialists. They'll decide whether they think it's worth it for Amelia to get some bloodwork done to test for a condition called chorea. Chorea is a type of movement disorder associated with other conditions. He doesn't think its likely she has chorea because she can control the movements but it's another step towards diagnosis, even if just ruling something out. We'll find out about whether she needs the bloodwork at the end of November. Also for the sake of rule out, Amelia will be getting an EEG done at the end of November. With her wiggly eyes and body it's a good idea to formally rule out any seizure activity. The doc doesn't think it's likely she's having seizures since I probably would've noticed occasional unresponsiveness and/or other seizure characteristics by now but it's a good thing to check given her other symptoms. So please be in prayer for that in a couple of weeks!

Today, Amelia had an appointment at the gastroenterologist (we have had a busy fall with appointments!) and she's doing excellent now with her digestive tract! She's so much happier now that she's on a healthy dose of Miralax everyday. The NP was very pleased with how soft her belly is and that she's slowly starting to dial back how much she spits up. She suspects that the reflux she has left is due to low tone. As we continue to clear Amelia out we will see if the reflux reduces even more.

Besides a couple of dentist appointments (including Amelia's first cleaning and 2 filling appts for Natalie 😳) I think that's been it in the world of doctor appointments for now. We are just thankful that most things have been good news.

Lesson 4. It is ridiculous to get medical records sent anywhere in a timely manner. Another big prayer request for us is Amelia's application to the National Institute of Health's Undiagnosed Diseases program. We applied for Amelia to be a part of a research study through the NIH and I was given the task of collecting all of Amelia's records from any doctor EVER and have them sent to Boston Children's Hospital. If Amelia were to get accepted we would have an all expenses paid trip to Boston for Amelia to get seen by some of the top doctors in the country with the hope and goal of getting us closer to a diagnosis for Amelia. We are praying that if it's God's will then she will be accepted into this program! But the process of getting records sent is a PAIN! I thought I was finally done as of last week, I had faxed 10 requests of information to 10 different doctors offices, called all to follow up, and finally (after a month and a half) found out that all had been sent to the right place. Then yesterday I got a call saying that the review committee would like all of the images of all of the testing Amelia has had (I thought those would have been sent per the ROIs I had filled out but apparently no images were sent at all!). So today I've had to fill out more paperwork to get both of Amelia's MRI images, a copy of her Whole Exome Sequencing extended results, and her metabolic workup. One MRI was done in Syracuse, the other in Rochester so I have to contact 2 radiology departments. It's a full time job being a mama who has to get records for her kiddo!! Hopefully within the next couple of weeks this will be resolved and everything will be sent on to Boston! We should find out if she's accepted into the program around Christmas as long as there are no delays in getting the images.

Lesson 5. In terms of a diagnosis we are surprisingly at peace with not knowing what Amelia has. We are pretty sure it's genetic which puts future family planning on hold but Matt and I are at peace with the unknown. Which can only be God working in my life because I don't like the unknown. The unknown is not my comfort zone. It's, in fact, my anti comfort zone. But I trust in the Lord. A song that I've been listening to on repeat since the summer is Lauren Daigle's Trust in You. The bridge and chorus are as follows (I highly suggest clicking here and listening to the whole song):

You are my strength and comfort

You are my steady hand

You are my firm foundation

The rock on which I stand

Your ways are always higher

Your plans are always good

There's not a place where I'll go

You've not already stood

When you don't move the mountains

I'm needing you to move

When you don't part the waters

I wish I could walk through

When you don't give the answers

As I cry out to you

I will trust in You.

I take comfort in knowing that if God isn't moving the mountain (Amelia's disability) then there's a reason why. I trust with 100% assurance that God could heal Amelia in a second if He wanted. But I know His ways are higher and His plans are good so if He's not healing Amelia right now then there's a reason. I trust in His grace and sufficiency to bring us through it. And not only just to survive but to embrace and enjoy the path He's put us on. Amelia is an amazing little child and I honestly can't say if her personality would be the same if she were a typical child. Would I want her healed? Absolutely. But do I appreciate her little personality the way she is? Undoubtedly. Also, I like the person I am today much better than the person I was before Amelia was born. I can already see how God's been using this little girl to change people. He's changed me for the better through her! Praise God for his mysterious but good ways. And I'm encouraged by what's He's been doing in Natalie's little heart. A few weeks ago Natalie and I were driving home from school and Natalie told me, "Mommy, someday Amelia might be in a wheelchair. And that's okay. You know why?? She can drive me around on her wheelchair! And we can buy a house that has no stairs! Wouldn't that be fun mommy?" Heart filled. What a beautiful sentiment to come from the big sister. We pray daily that God would use this to shape Natalie into a compassionate, understanding little lady. 

Thank you for your prayers and for following along our Amelia story. Hopefully it won't be another 2 months before I write my next update 😏

Just One Of Those Days

Yesterday was one of those days. An ugly cry day. I don't get them as often anymore but every so often they sneak up on me. They're the days where I wonder how in the world did I get here?? Teaching a 21 month old how to make consonants. Feeding her formula in bottles still. Watching intently for where her eyes are moving so I can report to her ophthalmologist which eye is wandering more than the other. Questioning whether she'll ever be potty trained, walk, talk, move to a big girl bed. What will her IQ be? Will she ever be able to play with her sister? Will she ever say "mama" or "I love you"? The intellectual side of my brain tells me, "life will be different, yes, but oh so beautiful". The emotional side of my brain starts screaming.

This was all sparked by a much awaited visit with someone from a Medicaid waiver office. We have been paying quite a bit in Amelia's medical bills ever since she was born and, until now because of her having no clear diagnosis, we have not gotten her Medicaid. Being someone who is globally developmentally delayed, has many specialists following her, and receives services in all areas she is actually a good candidate for Medicaid. I've been banging my head against a wall trying to navigate the system, figure out which waivers she qualifies for and the right people to talk to. FINALLY, I got in touch with someone helpful! She told me that Amelia MIGHT qualify for one waiver but if not, she will probably qualify for another. Both will significantly help with her medical bills, travel expenses to Rochester where most of her appts are, maybe help with adaptive equipment (special needs stroller), etc. But the process of filling out her application, being asked these questions about Amelia's abilities, it was emotionally taxing. And when trying to get services for anybody the focus is on what they CAN'T do instead of what they CAN. So it was 2 hours focusing on all the ways Amelia's disability makes it difficult for us to manage her care. The care manager was so sweet and she would say things like, "great! So glad!" when we told her "no" to questions like, "Is she on multiple medications?" or "Has she been hospitalized in the last 12 months?" but one thing she said will not leave my brain. She told us she was surprised Amelia already qualified for eligibility through the Office of People With Developmental Disabilities (OPWDD) and then she said, "provisional eligibility means she'll need to be re-evaluated at age 7, but if she qualified this early I don't see it being any trouble getting her re-qualified then."  She meant it to be encouraging. Eligibility for OPWDD is necessary for coverage for all the things needed to raise a child with special needs. If you lose OPWDD eligibility, you're kind of up the river without a paddle. I was told recently by someone that Amelia's eligibility letter is GOLD, it will get us far. I was encouraged by this and then I thought, "oh wait, to be qualified at age 7 you have to have an IQ lower than 70...." A whole other wave of grief crashed over me. "So if she'll probably have no trouble getting qualified at age 7 because she was granted eligibility this early, does that mean her state right now indicates she'll probably have a significant intellectual disability????" It's been going through my head unceasingly ever since. Matt assured me that we don't know what Amelia is going to do. We don't know what God has planned for her and us. He also said, "Did you miss her say the good thing about these waivers is we can change which one she's on at any time because kids always change? She said that people are always changing. They're eligible for some things at one time and suddenly not eligible a year later. There is no way we can take one thing she said and assume Amelia will have an intellectual disability." I keep trying to remember his words. And remember the promise that God will take care of us and lead us through all of this no matter how far Amelia progresses, I take comfort in that more than in anything else.

So right now, I will let myself grieve. It's healthy to grieve. There's a quote by John Piper that says, "Occasionally, weep deeply over the life that you hoped would be. Grieve the losses. Feel the pain. Then wash your face, trust God, and embrace the life that he’s given you." And then I will look at the face of this sweet sweet little girl who I get to snuggle and rejoice over the smallest milestones with. I mean look at this:

How can I grieve when I am holding that face?? She's a precious gift. And I am so so thankful.

All the Fuss

So this photo is seriously one of my favorites. 

I mean, what a better way to capture exactly what a trip to Disney World means with 2 kids. 😂This was taken back in January but I figured I would post it now as that Amelia face has been a frequent sight these past few days. Natalie has spent 3 weeks at a day camp from 8:45-3:30 5 days a week. She LOVED it. She was swimming, bouncing in a bounce house, playing in a sandbox the size of my living room, and riding horses everyday. What more could a 4 year old want? But of course, when you put 15 petri dishes together the snot inevitably flies and we were landed with a summer cold. At the same time as Amelia's mouth decided it was a great time to cut four canines. Yup, that's right FOUR. This kid is the epitome of go big or go home when it comes to teeth. A few months ago she decided to cut 3 molars at the same time, too. Why???? Anyway, so far this week (it's really only Tuesday??) I've been wiping the snot off Amelia and figuring out what to do with the immense energy permeating off my 4.5 year old who clearly is missing the energy expenditure of last week. I've been doing a little homeschool preschool curriculum with Natalie and we are having so much fun with it. This week we started our new unit on the 5 Senses. We learned how to explore a lemon using all 5 senses and Natalie actually loved the taste of it. Good for you, girlfriend, it's all yours 😝 One of our activities was to taste some mystery substances in a muffin tin and describe how they taste using some new vocabulary words - bitter, sour, sweet, salty. Natalie was hilarious trying all the flavors. Her favorites were sugar (big surprise there from my little sweet tooth), honey, and... wait for it... SOY SAUCE! Ha! You can tell this kid was raised on Asian food, it's one of our favorite cuisines. Here's a fun pic of her with her activity, she's got such a beautiful smile!

The last couple of weeks have also brought some great updates on Amelia! She will be attending a toddler program in the fall where all of her services will be given over a 3 day/2.5 hour school week. This includes physical therapy, occupational therapy, feeding therapy, speech/communication therapy, vision therapy, and special instruction. We had a few concerns about the transition from home therapy to school therapy and this last week we got everything ironed out. We have an amazing service coordinator who made a good case for Amelia's needs and we were able to customize everything to the best possible scenario for Amelia. And I'm beyond gracious to God for orchestrating this through everyone who helped. Also, despite her cold, she's still babbling up a storm and we are almost certain we heard her say the word "more" today when she was in her high chair. My mom and I looked at each other in shock! She might have just thrust her lips together and breathed out since she can't breathe through her nose and it just sounded like "more".... but this is one of those times that I have a  mommy celebration and do a little dance.

This month has also been teaching me a lot about what it really means to have a child with special needs. Not that I haven't been learning it for the past 21 months but with Amelia being fussier than usual it has been more apparent. Since starting the crazy laxative treatment (as discussed in my previous post) Amelia's sensory tank, as her outpatient PT clinic calls it, has been filling that much quicker. She doesn't handle sensory stimulation nearly as well as she used to. Noises that we had worked out to not bother her started upsetting her again and I stopped being able to put her in the baby carrier/sling when out and about. This probably has to do with the fact that the Miralax is making her super uncomfortable so she's already got loads of sensory stimulation happening inside her own body! When the average person doesn't feel great, they have a diminished ability to handle their outside world. Now imagine it's a tiny little person who can't see well or move her body the way she wants. Poor baby! So we've had to accommodate and try to live life as normal as possible but doing the dance of what's pushing Amelia just the right amount and what's pushing her too much. We do not want to put her in a bubble and make sure she never gets upset or cries because that's not real life. She has to grow up and learn how to handle her environment but chucking her into a crowd full of people with a mouth full of swollen gums, a snotty nose, and an upset stomach isn't going to do anyone any good! So we are figuring out how to balance it all... and boy is it exhausting! I found myself thinking the other day, "this stinking Miralax! I can't even take her to our best friend's house anymore without her flipping out. Something is wrong with this. We need to fix it." And then I realized, "Oh wait, this is having a child with special needs. I don't need to FIX this. I need to pray for strength and wisdom, and help Amelia through this. It's not about me."

Which brings me to my next point:

I've also been learning a lot about the grace and goodness of God. I tend to try to make everything about myself. I would never call myself entitled but I totally am. I look at my relationships and try to figure out how my needs can be met through these relationships - not consciously but when I really look deep I see it. Especially my marriage. Matt and I have had some ups and downs typical for a couple going through a very stressful time in life. But I've realized a lot of it stems from me not feeling like my needs are met. The start of our average "discussion" (ahem FIGHT) usually start with me saying, "I just feel like you haven't been doing enough for our relationship" or "I feel like you don't love me because you don't plan date nights", etc. I've been feeling justified in these thoughts and feelings until this week when I listened to a podcast from Revive Our Hearts and the speaker discussed unfulfilled longings and desires. It has caused me to pray a lot and repent and change the way I think and pray.  I'll post the link to the podcast on the Resources page of my blog but I'll give a summary of what I've learned. The speaker (Janet Aucoin) spoke about how we will always have unfulfilled longings on earth. We were designed to only have 100% fulfillment with God but when sin entered the world through Adam and Eve we were separated from God. God sent his son Jesus to take on the punishment for our sin, die for us, and raised Him from the dead so that we can now be reconciled to God. This is a done deal for those who believe in Jesus. But we still have to live our lives here on earth. And it will be marked with unfulfilled longings. This sounds sad and depressing but really what this does is puts our focus on what we really need - Jesus. And, if we've placed our hope in Christ we will someday be reunited with God. We already have everything we need. We don't need anything else. God has already done it. Our unfulfilled longings on this earth point to the fact that something so much better is coming next. Our longings will be 110% fulfilled someday when we are united with God in heaven. Romans 8:18 says  For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us. God blesses us with more than we could ever need to serve him on earth. And he gives us glimpses here on earth of what it will be like in heaven. Anytime we experience someone serving us or seeing something beautiful we can say, "Thank you God, for that glimpse of heaven" and it frees us from a life of looking around and noticing all the things that are wrong and all the ways we aren't being treated the way we deserve. Amen to that!

I totally didn't intend to go into my spiritual walk on this blog post, I originally intended for a fun update but this is a real blog with a real human being going through some real struggles so I figured I would share what I'm learning. And really, I want to be clear about who we are relying on as a family to get us through the ups and downs of special needs parenting. Our faith in who Christ is and what He has done is the only thing getting us through. Even when we fail all over the place. I'm learning and it's hard and it sucks and I'm terrible at it more than I'm good. But Jesus is full of grace and forgives me when I fail and still teaches me more about himself and how to live on this earth.

Now the note on which to end this post:

This was taken at Disney World during the same trip as the beginning of my post. In truth, the first pic of her screaming with Goofy was actually the rarity of that trip. The girls did so well given they spent 4 crazy days at Disney World. What a beautiful smile this sweet girl has also. As always, thanks for prayers, encouragements, and keeping up with us.