Wednesday, January 31, 2018

Bella, Post Adoption: Month 6

Our sweet Bella has now been with us for six months. HALF A YEAR! She has made so much progress since July 31, 2017, and we are so proud of her! She is fierce and strong and resilient and determined. She is snuggly and loving and affectionate and sweet. She is beautiful and amazing and smart and kind. We just love her so much! She had a very busy January but, as she does, took it all in stride. 

 

Here, an update on her progress now that we've had her for six whole months: 

Language. When we first met Bella, she could say two words: mama and dada. She said them inconsistently and not with any intention. She was very, very quiet. Her mouth muscles were very weak: she didn't know how to sip from a sippy cup nor straw correctly. She had never heard English a day in her life. 


Now? Bella says a whole slew of words! Some aren't the exact word but are good approximations (e.g., "boo" for /blue/) and have intention and meaning when she says them. Some of the words she's saying six months in? Bubble; baby; hello; good girl; hooray; RaRa (for Raleigh); bath; play; up; poo poo; mom; dada; please; blue; more; cracker; wawa (for water). She also knows several animal sounds and body parts now and uses several signs consistently to help communicate with us. 


One thing we are working on is trying to get her to initiate communication to express what she needs/wants. For example, instead of us asking her if she wants more, having HER tell US she wants more. She is becoming better and better at imitating sounds and attempting words, and we will continue to help her learn to communicate what she's thinking, through both words and signs and ongoing, weekly speech therapy. 


A lot has happened with Bella's hearing over the last month. Her hearing has perplexed us for awhile now, with inconsistent test results - some indicating impairment - with no cause able to be identified for her test findings. Prior to this month, she had undergone multiple hearing tests in a number of different ways under our stellar audiologist and had also seen two ENTs. Yet, still confusion. So, earlier this month, she was sedated and given a hearing test called an Auditory Brainstem Response (ABR). In layman's terms, it helps to estimate hearing sensitivity and to identify neurological abnormalities of the auditory nerve and the auditory pathway up through the brainstem. In addition to the ABR, Bella also had a CT scan of her temporal bone.


The results essentially indicated two issues we need to address to help her hearing. So, we have a new action plan in place! Step 1: Bella had tubes placed in her ears yesterday (yes, she had to be sedated again BUT at least this time it didn't require IV sedation - only gas sedation). The crazy thing is that not one of the many medical professionals who have examined her ears has ever been able to see nor detect any fluid in her ears. But results of the CT scan indicated otherwise (bilateral mastoid opacification, for anyone who's interested). We weren't sure what the ENT would find when placing the tubes but he did, in fact, find some fluid deep within both ears; so, tubes were placed. Our next step will be to repeat the hearing testing during our post-op visit to see if draining the fluid has resulted in improvements. If not, she will likely require a hearing aid due to the small cochlear aperture noted on her right sign during the CT scan, as this would suggest her cochlear (aka auditory) nerve is not functioning as it should. So, we are getting closer to answers, which is a blessing! The CT (which was a nightmare to get ordered/scheduled/covered by insurance but thank you Jesus for making it happen) also revealed one other defect we will be monitoring with our neurosurgeon by repeating the CT scan this summer to ensure it's nothing problematic, but we have faith all will be well. If nothing else, our girl is in GREAT hands with our medical team! And she has been making GREAT strides in speech. Go Bellaboo!


Motor. Six months ago, Bella could not stand independently. Her feet were extremely over-pronated and her legs excessively turned out. She was so, so weak. She couldn't crawl up a single stair, battled regular constipation requiring Miralax daily (due to muscle weakness), and would often be in physical pain due to what we now know was a tethered spinal cord. She slumped forward when sitting and could not hold herself up on her elbows while laying on her belly. 



Now? Thanks to a de-tethered spinal cord and weekly physical therapy, Bella continues to get stronger by the day! Constipation is no longer a problem at all (peace out, Miralax!). She can now climb on and off things by herself (e.g., our mini trampoline, the couch, etc.) that she wasn't able to last month! Her legs and feet have shown improvement in positioning and she no longer experiences pain from her spinal cord. She is much sturdier and more confident on her feet, standing independently all the time! She can crawl all the way up and down our (steep!) stairs unassisted and is started to attempt to walk up and down them (while holding our hands, of course). She STILL won't take an independent step. While we believe some of this is behavioral, as in she is fearful of doing it and also too stubborn to try ;), we also believe additional physical therapy may help - we need to continue focusing on strengthening her core to help her become more balanced. So, we have now upped her physical therapy to twice a week and continue to work with her daily on her physical therapy exercises. 

Bella's fine motor skills are also improving thanks to regular occupational therapy sessions. She is now able to use utensils to eat and is becoming more adept at using her pincer grasp. While there are certainly still fine motor weaknesses, we are working hard to help her get stronger. She is also able to use more adaptive functioning skills - such as helping to brush her teeth and hair, assisting in getting herself dressed, wiping her mouth when it's dirty, and blowing her nose! Go, Bella, go!


Cognition. Six months ago, Bella's play mainly consistently of banging toys together and mouthing everything in sight. But now? Now, we know that our littlest nugget is such a smarty pants. She learns so quickly and often only once after seeing something new. She also has a really good memory, retaining things she has seen months ago. She engages in some pretend play, too, including pretending to talk on the phone, stirring up food in her play kitchen, and hugging and kissing her baby dolls. 

 


We have a big, exciting meeting this Friday -- I'll be headed to the school district office with our early interventionist and the educational specialists to help get Bels placed in a special preschool next year! Originally, we had intended to just have her attend the same preschool that our older three kiddos have attended, holding her back a year given her level of developmental functioning. But her needs are greater than a typical preschool classroom can provide right now. So, our hope is that she will be able to attend the preschool within one of our local elementary schools where she will be able to receive her therapies as part of the curriculum (AND continue to get them at home, outside of the school environment). More on that in next month's post. I have a feeling she is going to LOVE school! 


Attaching. Just six months ago, we met our girl in a hotel conference room. She was so sad and so scared. So withdrawn and closed off. And then, once she finally realized that we are her people and would not be abandoning her, she was scared to be away from us (all typical reactions that we were expecting, but still heart-wrenching to see). 





Now? You would never know it if you met her today! Off all the domains she has been evaluated on, she soars when it comes to her social and emotional functioning. Bella is just JOY. She is happy and sweet, smiling at everyone she meets and blowing them kisses when saying goodbye. She ADORES her family (feeling's mutual) but also continues to do really well with separating from us. I started teaching in her church classroom every other week this month, and she has done well whether I am there or not! She just goes about her business, playing, coloring, and enjoying the snacks. :) She was also under my parents' care last weekend when my hub and I snuck away on a quick trip, and, again, she did great! AND I am now able to leave her in the childcare area of my barre studio without her having to have a sibling there to feel safe. She just plays with the childcare worker and then is happy to see me when I come out to get her an hour later. We are so proud of her!


Out and About/Playing. From six months ago until now, our Lu Crew has stayed (and will continue to stay) busy. With four kiddos and an active family, we are typically out and about and all over the place! From the beginning, Bella has just rolled with it. She is usually very laid back and that has continued to hold true over the last six months. 


Over the last month, we were out of town for a family reunion, and Bella did a great job of meeting so many new family members and just hanging out with everyone. She also had her first official Momma Date when she and I visited a Little Gym class, and she did so well. <3 She's been to basketball games and dance practices, my barre's childcare area and multiple doctor appointments, and just takes it all in stride. She LOVES to be outside; so, we take full advantage whenever we have nice weather. She loves music and loves bath and actually laughs with glee when she has to take medicine (which she had to do again this month after getting cellulitis in her fingers...again). She.is.awesome. 


Etc. Let's see. Another appointment Bella had this month was with a dermatologist, where we learned she has ichthyosis. This is a rare, genetic skin disorder characterized by thick, dry, scaly skin that she will very likely always have. Treatment is a prescription cream, which she now has and which we now use every day. Problem: identified. Treatment: identified. I like when things work out like that! 


Whew! How about that for a six-month update? Bella has changed so much (oh, and she now weighs almost 28 pounds - she has gained 1 pound a month since we brought her home!) and learned so much and worked so hard, and we can't wait to see what the next six months bring. 


Bella, you continue to amaze us and we are so thankful for you, beautiful girl. Even during the hard days, the frustrating days, the overwhelming days, the chaotic days, we wouldn't trade a second of our life without you in it! Whatever comes our way, we do it together, sweet girl. Six months ago you made our dreams come true and our family complete, and we love you with all our hearts. <3 Onward we march, together.

Friday, January 26, 2018

Cheers to the Weekend, Cuh-ra-zy Edition

Monday literally went like this: get the oldest two up, dressed, fed and on the bus by 6:50 am. Do morning reading, prayer, and quiet time. Throw in a load of laundry. Get the younger two up, fed, and ready. Leave for preschool drop-off by 8:40 am. Get home in time to throw in another load of laundry before a quick meeting about some interior design changes we are making. Immediately have a speech therapy session right after at 9:30 am and then an early intervention session after that at 10:30 am. Put Bels down for a short, early nap at 11:30 am and run out the door for preschool pick-up. Drop off Harrison’s sweet friend before dropping Harrison at home for lunch/nap (my hub was working from home, PTL). Wake Bella up from her nap at 12:30 pm and haul it to an ENT appointment at 1:00. Get home just in time to get organized for a second, grab a snack, attempt (and fail) to get Bella to nap again, and get Banks and Raleigh off the bus at 2:45. Get Harrison up. Give everyone a snack while working on homework, get Raleigh changed, get Bella up, and then head back out the door by 3:40 to take Raleigh to dance, with the other three in tow. Only there just so happens to be absolutely horrendous traffic (police officer's funeral procession). Move a few miles in 40 minutes and call an audible - no dance...we would get there by the time it was ending. So, turn around and go to the grocery store. With the whole mini circus in tow. Get home and get dinner on the table happily allow hub to get dinner on the table. Try to answer emails and texts and phone calls and throw in a couple more loads of laundry in between. No time for a workout that day. :( But did find time to breeeeeeeathe. And time to play with the kids, read a couple chapters of a book aloud, all together, before getting them off to bed. And time watch an episode of Stranger Things before falling asleep before 9:00 pm. #MondayMadness 


They love her so well. <3 And our Dennis the Menace searches for some mischief. 
 
S{quad} goals.

Please hear this: Every day is NOT that busy. Some are, some aren’t. Monday was a little nutso...as were several days this week, if I'm being honest. However, one of my pet peeves is when people think they are the busiest in all the land. They are not. I am not. And there is no prize for being busy. (On the contrary, I prefer a simpler, quieter day.) That being said, here's to making it through those days unscathed and looking forward to calmer ones ahead, amIright?!

Anywho. All that to say, only one blog post this week (talk about being long-winded!). This week, we're saying CHEERS to: 

Marching onward. Based on the results of Bella's CT scan and sedated hearing test, we have a new plan of action in place. I know I've said this a few times before, but I am so incredibly thankful for the medical professionals we are so lucky to work with to ensure our Bels is getting all she needs. One of whom is our ENT, who agreed with the results of the recent scan/testing and is totally on board with the new plan of action. First stop? Tubes will be placed on Tuesday morning. Yes, as in four days. We continue to work as hard and as quickly as we can to help our girl. <3 There will be a few more steps to tackle her hearing after we get the tubes placed, but that is Step 1 and that is what we are focused on for now. 

My littlest lady, all set for her ENT visit. Again. ;) 

We also saw our neurosurgeon earlier this week. I am so happy to report that she got a good report from him! There is something new we are monitoring and will repeat her CT scan in six months, and her MRI of her spine in about two years, but for now, she is recovering beautifully from her spinal surgery. Praise the Lord!

And rockin' it at the neurosurgeon's office. Check!

Husbands who work from home. Unless my husband has meetings, day trips, or overnight trips, he typically works from home. This wasn't the case a couple years ago, when it felt like he was traveling allllll the time. But he took a new job and now he often gets to work from home. One amazing benefit of this, that was especially helpful this week, is that I often don't have to drag all four kids out to appointments. So this week, when Bella had four different doctor appointments, I was able to take ONLY HER. This is huge and feels so much less overwhelming. I can actually focus on what the doctor is saying and I only have to bring snacks for one kiddo. ;) 
 
Turning the corner. Our own little Dennis the Menace had a rough couple months for awhile there. Whether it was adjusting to his new sibling, or just being a threenager, it was HARD. Harrison was an angel of a 2-year-old. Just a pure delight. He wasn't a "terrible two." He was a "terrific two." So, I guess it was time for him to hit a rough patch. But, I am so pleased to share, that he seems to have rounded the corner. Our sweet boy is back! Sure, he's still mischievous, and sure, he forgets to turn on his "listening ears" sometimes, but his sweet, happy-go-lucky, hilarious demeanor is back! Do you know what this boy tells me multiple times a day (always before nap and bed; often shouting it out of my friend's car window as they are pulling out of the driveway to go to preschool; and many times, just randomly)? "Mom, I love you and you look so pretty." And lately? "Mom, I love you with all my heart, and you look so pretty everyday." We have NO idea what prompted him to start saying this so many months ago, but it pretty much melts me every.single.time. (and let's be honest, can be a real pick-me-up when I'm looking and feeling exhausted, stressed, and raggedy as all get out - ha!). 


Accidental twinning. 

Self-care. More than ever, I know how important self-care is. I love the airplane analogy - you can't help your kiddos until you help yourself. I need to be a healthy momma, emotionally, spiritually, and physically; so, please know that amid all this craziness, I am taking care to take care of myself. It's date nights. It's dinners with girlfriends. It's reading a book...for fun! It's watching favorite shows. It's working out 5-6 days a week. It's sharing hundreds of texts with my sisters and best friends. It's allowing myself grace when I lose my patience (often) or have a breakdown. For those who have reached out, don't worry. I am making sure I am taking care of me, too. <3 

Bike riding. We had glorious weather this week, and we took full advantage of the 60s and sunshine! We were outside pretty much all weekend last weekend, and during that time, my hub taught Raleigh to ride her new two-wheeler! She is so determined and fierce and picked it up pretty quickly! We are so proud of her! Now, to conquer the brakes. :)


Go Rals!

Have a GREAT weekend, friends! And please say some prayers for our sweet Bella on Tuesday morning. It will be a quick (i.e., 15 minute) procedure and she won't require IV sedation this go-round, so she should hopefully do well and recover very quickly. Nonetheless, we covet your prayers - for answers, for relief, for significant improvement. Thank y'all! Be back soon!

Friday, January 19, 2018

Cheers to the Weekend: Oh Snowy Day! Edition

Shooooooey. The last week/end was a DOOZY. If I'm being honest, I had a breakdown at the start of the week, after spending countless hours, 20 phone calls, and a physical visit to our doctor's office to ensure a CT scan we believe Bella needed was, in fact, ordered and covered by insurance. Thanks to our audiologist, pediatrician, and nurse anesthetist angels, I am happy to report that it did, in fact, happen. And thank goodness it did!!! But more on that below. Here's what we're saying CHEERS to this week/end: 

Momma dates. One of my favorite things to do as a momma is to have individual Momma Dates with each of my kiddos, from time to time. Banks, Raleigh, and Harrison have had their fair share over the years, but Bella had never had one...in her entire life. She works SO hard every single week in all her therapies and is adjusting so well to her brand new life, that she was definitely overdue. So, last Friday, she and I went to Little Gym to try out a class. And we had so much fun!!! As she does, she first sat quietly and took it all in. Once she felt comfortable, there was no stopping her! I can't wait for our next Momma Date! :)



  
Family reunions. Last Saturday, we traveled to Irmo, South Carolina, for a family reunion. It was my father "in law's" "side" of the family, and I cannot begin to describe how special it was. Aunt Pam scheduled and organized the whole thing, and did an absolutely AMAZING job. She had games and prizes for the kids (and adults), breakfast and lunch arranged, and lots of fun activities in between. There was a photographer on hand to capture all the special, candid moments and a long table filled with the most amazing family heirlooms and photos. There was a slide show with all kinds of photos from back in the day ;), and it was so fun to see them all and hear all of the reminiscing and stories. I just can't say enough how much we enjoyed it - seeing so many different generations of family brought together for the day. If I know anything at all in this world, it's that family is EVERYTHING. I am so, so thankful for mine. <3

 The beautiful, 200+ year old family Bible my hub's aunt gifted us with <3










Surprises. Once we returned from the reunion, my hub and I headed out for the night for a surprise party for one of our closest friends. We had the best night enjoying tacos and tequila, followed by fun bowling shenanigans. Too.Much.Fun.! Happy Birthday, Britt. We love you! 






Reading (and TV) for fun. It has been AGES since I picked up a book and read it for fun. Last year, I started reading Pretty Little Lies and was really enjoying it. I was about 100 pages in before life got in the way and with it, the book. But, earlier this week, I picked it back up, started over, and am loving it! I'm excited to watch the miniseries of it, too, once I'm done. My hub and I also switched cable providers lately and now have access to Netflix again; so, we started watching Season 1 of "Stranger Things" and finished it yesterday #snowdays. It creeps me out every episode (as in, hands over the ears, curled up in a ball), but it was pretty good! Good enough to give Season 2 a try!

Church duty. After adopting Bella, I took a few months off from volunteering in the kids area at our church so that I could focus on getting her acclimated and comfortable in her new world. <3 About two months ago, we started putting Bella in her class during church, and she has been doing GREAT! So, finally, it was time for me to return to my church teaching duties. I asked to be put in Bella's class as one of her teachers, so that I can follow her and her friends throughout their years in our church. Sunday was my first day back, and I swear Jesus himself found the 12 sweetest angels in all the land and put them in that classroom. It was so fun to be back around such sweet innocence and so special to begin introducing them to all things Jesus. :) 


MLK Day. Our family spent the MLK holiday doing nothing special, which was just what we needed. We spent time together at home and both Raleigh and Banks shared all they had learned at school about Martin Luther King, Jr., his legacy, and the impact his life had on desegregation and our culture. <3

Answered prayers. We had some answered prayers this week, thanks be to God. On Wednesday morning, at the crack of dawn (we had to be there at 6:00 am), Bels and I headed to Levine Children's Hospital in Charlotte, where she was sedated for a specialized hearing test. This has been months in the making and, finally, the day had come. Immediately after the test was completed, she was whisked away for a CT scan of her temporal bone. I fought tooth and nail for this CT, spending hours trying to prove it was justified so insurance would approve it and then working with the best nurse anesthetist on the planet to finally get it on the schedule at the very.last.minute. Anywho, I'll share more about the results from the hearing test and CT scan in Bella's six month post-adoption post, but I can tell you that, had the CT not been done, her findings on the hearing test would still be perplexing and the answers unclear. Now, we have potential reasonS for her inconsistent, failed test results and are moving forward with a new plan of action. <3






Summer planning. Even though we are in the dead of winter, we have been busy making some fun summer plans! There are a couple new camps the kids are going to try, some beach trips, and even a little getaway for my hub and me in the works, and I can't wait!

Snow days. While I was sitting in the Family Waiting Area at the hospital, the snow began to fall and it did not stop until mid-afternoon. While it was a little scary terrifying making the drive home from the hospital, Bels and I made it safe and sound and just in time to play in the now accumulated snow! We got somewhere between 3 and 4 inches (much more than the 0.5-1 inch that was predicted!) and had so much fun! My hub took the big three out sledding earlier in the day, and then I got to spend time with all four kiddos in the snow that afternoon - sledding, snowball fights, snow angels, (attempting to build) a snowman - it was awesome! We were out of school again yesterday since the snow did not melt and the roads were a mess, which meant even MORE snowy fun! I am the momma who cheers when school is cancelled, so I didn't mind these extra days off one bit!









And that's all I've got, my friends. We have big plans of no plans for tonight, followed by an F3 race for my hub in the morning, a birthday brunch for one of my closest friends  (Happy Birthday, V!), a playdate, and a basketball game, all tomorrow. Whew! And then, my littlest sister turns the big 3-1 on Sunday (Happy Birthday, Whit!), and I'll be headed out for a special dinner for a special friend that night.

Have a lovely weekend, y'all! Adventure awaits!