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.
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.
