Thank you to our Physical Therapist! I received a phone call today that little Flara gets to start her Speech Therapy next week! We have to go to Children's Hospital and get a swallow study done before her speech assessment. The last swallow study she had was shortly before leaving the NICU, which was 16 whole months ago! It's hard to believe that much time is actually behind us. Now onto improving her language (well, maybe starting)... she just started doing the "goo goo gooo" sounds, although she does still have "hiiiiii, mom mom, and dada." And, of course-- improved eating!
For a morning that started with such good news, the rest of the day has been yuck. We have been in the midst of tornadoes and bad weather since sometime past 4pm. It's 11pm now, and we still have at least another hour. Outdoors got to looking sooo scary, I finally took the girls and the Dogg into shelter in the girls' closet (our only interior space in the house!) just before 8pm. We watched Barbie movies for two hours and endured Dogg's breath (the room was getting stuffy) before finally tumbling out around 10:20pm. We just couldn't take it any longer! As I was putting the girls to bed, we were pummeled by hurricane-force winds and rain and baseball-sized hail!!!! I cannot even describe how loud that was! Dogg was running and ducking and dodging like he was being fired upon from all directions... poor boy. Flara was screaming. Noël went to the windows and was "catching" the storm in her hands to give to Momma to get rid of it. She would say, "Nornado, go AWAY." I put the girlies to bed and left their closet bunker intact, and I'm sitting out on the couch keeping watch on the news for more tornado activity. Blah. I'm so very thankful we're all okay... I am so terribly saddened to hear how many lives have already been lost in this tornado outbreak. Many prayers have been going out for the mid-South down to the deep-South.
Wednesday, April 27, 2011
Tuesday, April 26, 2011
Physical Therapy
Little Flara started at a new Physical Therapy locale last week. We were on a break from our previous place due to complete noncompliance from our little girlie. Mike and I figured Day One at the new place would be our "make-it-or-break-it" visit. I was a bit nervous in going... we had even rescheduled our first visit due to Flara being sick the day she was supposed to go and took her to our peds instead. Day One, to my utter surprise, went GREAT! Our therapist assessed Flara by talking me through everything, rather than by her touching Flara, with the hopes that Flara would warm up to her. It worked-- Flara seemed to just think Momma was playing with her, although in a new environment. I'm so thankful-- even as we waited in the waiting area, Flara stood big-eyed, wringing her little hands non-stop, and refused to move (until Big Sis went, took her shoulders, and guided her back to me). She's so pitiful. Flara's initial assessment placed her functionally/ developmentally as a 13-month-old, even though she is actually 19-months-old.
Daddy took Flara to therapy today while I was at my own doc's appointment. As I was waiting to be picked up, Mike texted me a picture of Flara and Noël-- Flara had walked over to another therapist working with a little boy with autism, and sat down and played with them! Noël went, too, and they all worked on puzzles together. Quite cute-- and, quite amazing! Mike said she really did well with our regular therapist, too. Such a relief!
Her therapist did express some concern over Flara's perception of touch-- she has diminished senses. We see this most prevalent during eating: Flara over-stuffs her mouth 'til she's full like a hamster. Then, she chokes... and, chokes... and, Momma and Daddy do very frequent finger sweeps to rescue her. Apparently, she is overstuffing because her little nerves aren't registering the feeling of food in her mouth, so it takes her a mouthful to get that feedback. She's fifth on a waiting list for speech therapy, but our therapist is trying to get her moved to the front of the line. Worried about her frequency of choking, she even suggested we might cut back on her solids. The girl loves her food sooooo much, though, I think I'm going to just feed her a single bite at a time, rather than giving her a plate of food.
We have also been encouraged to really start using signs with Flara to facilitate her language development. I'm using "Signing Smart with Babies and Toddlers" at the recommendation of our TEIS instructor. From what I've read, it seems like it will be a good system. I had only exposed Flara to the Baby Einstein videos for signing, but this system allows for more conversational signing. I'm actually pretty excited to be learning, and today marked my first "official" day of signing with Flara. She's been watching very earnestly, so I'm hoping she'll pick up on it all. =)
Daddy took Flara to therapy today while I was at my own doc's appointment. As I was waiting to be picked up, Mike texted me a picture of Flara and Noël-- Flara had walked over to another therapist working with a little boy with autism, and sat down and played with them! Noël went, too, and they all worked on puzzles together. Quite cute-- and, quite amazing! Mike said she really did well with our regular therapist, too. Such a relief!
Her therapist did express some concern over Flara's perception of touch-- she has diminished senses. We see this most prevalent during eating: Flara over-stuffs her mouth 'til she's full like a hamster. Then, she chokes... and, chokes... and, Momma and Daddy do very frequent finger sweeps to rescue her. Apparently, she is overstuffing because her little nerves aren't registering the feeling of food in her mouth, so it takes her a mouthful to get that feedback. She's fifth on a waiting list for speech therapy, but our therapist is trying to get her moved to the front of the line. Worried about her frequency of choking, she even suggested we might cut back on her solids. The girl loves her food sooooo much, though, I think I'm going to just feed her a single bite at a time, rather than giving her a plate of food.
We have also been encouraged to really start using signs with Flara to facilitate her language development. I'm using "Signing Smart with Babies and Toddlers" at the recommendation of our TEIS instructor. From what I've read, it seems like it will be a good system. I had only exposed Flara to the Baby Einstein videos for signing, but this system allows for more conversational signing. I'm actually pretty excited to be learning, and today marked my first "official" day of signing with Flara. She's been watching very earnestly, so I'm hoping she'll pick up on it all. =)
Sunday, April 17, 2011
Updates
Flara met with a new endocrinologist this week. We had been seeing a doctor in Chattanooga, but with her 'crisis' period over, we were able to switch to a doc in Knoxville... much more convenient.
Looking over her records, our new doc said that Flara had a much thicker file than most adults he has ever seen. We just wanted to make sure each family member stays consistent. ;) After reviewing many of the pages and quizzing me beyond my now-lagging memory, he concluded that he agreed that Flara appeared to be more 'impending' in her hypothyroid issues, but he had concern that she might have pituitary issues. His explanation was that, typically, if brain damage has occurred in one area, then the injury can reciprocate in another area, which often occurs in the pituitary... I think... I'm pretty sure that's how he explained it... Anyways, it was a combination of her history of a brain bleed, her not-fully-thickened corpus callosum, and her newly-discovered lagging cerebellum.
He sent me over to Children's for labs. He was checking her current thyroid hormone levels and functioning, as well as her water-retaining hormone, and her pituitary functions. He called me the next morning to tell me that her pituitary for now is operating normally, her water-retaining hormone was normal, but her thyroid levels were slightly down. So, he told me the changes in her Synthroid dose that he wanted implemented, and then to repeat levels in one month. And, at some point, he would like to have an MRI done of her brain, mainly to visualize her pituitary.
In a nut-shell, this all confirms the 'impending' state of her thyroid. When she was smaller, her thyroid was producing enough hormone to cover her body's needs. When we discovered the problem, her body was still able to keep up, but other hormonal levels were elevated as her body was compensating for the shortfalls. Now, even while receiving hormone replacement, her body size has finally outgrown her thyroid's abilities. Praise God it was all discovered before her brain was adversely affected.
We also had an update on her heart a couple weeks before. Our cardiologist opted out of doing an echo. She was too fidgety and fussy, and he felt good enough from what he 'saw' on her EKG, her blood pressures, oxygen saturations, and what he could hear... the murmurs were diminished. Plus, we were able to report that she has been without symptoms for the past several months. So, follow-up in a year!
We're on a waiting list for speech therapy. We're switching to a new location for physical therapy. This will start this upcoming Tuesday. We had taken about a two-month break from our prior PT locale-- Flara was having a terrible time and was uncooperative. Flara's physiatrist (the doc who evaluates her brain functioning and developmental state-of-being) thinks that Flara was pushed too early, and so she has formed negative associations that she has been unable to break.
She will turn an amazing 19 months in three days. She's now 23 pounds and measures 30.75 inches tall. Big girl!
Noël remains drama-free. =) She does have her fair share of ear infections, strep throat, and random pukings (as in, this week, everywhere... poor girl)... but, otherwise, nothing has happened that has raised concern for momma and daddy. Thank you, Lord! She keeps herself busy with her birds... we have three nests on our little quarter-acre plot, has been tending to her strawberries, and picks flowers from those she planted-- on the last day of winter!-- daily. Needless to say, but momma has stayed busy until this week fussing over the flowers to keep them alive during cold spells and frosts by covering them at night and strategically placing jugs of hot water to warm the air around them-- and, fussing over the birdies. Our bird house with our Eastern Bluebird babies keeps coming apart, and I have done countless repair jobs with duct tape (HUGE disappointment) to keep it all together. I thought duct tape was practically permanent? Not in these rains.... When we're not outside, Noël is busy with her cooking, dressing up as a princess, and dancing.
Flara, the wood sprite... That girl is so spirited. Our pediatrician even commented this week that, "well, Flara is... Flara... and, you have.... well, two extremes in personalities." She keeps us laughing. She always has a sparkle in her eyes to let us know she's up to something. She does things... to bait us... and, we fall for it. She loves it. She 'got' momma so good this week, that I screeched the SUV off the interstate, slammed it into park, threw off my seatbelt, and was diving into the back to rescue her... to discover her giving me a look like, "I sure got you this time, mom," then giggled at me. What did she do? Well, she feigned choking-- she went from flopping her head back-and-forth violently, quickly, then flopped her head down and let it bob with the bumps on the road. She did not respond to my voice. Yeah. All an act. Once back on the interstate, she tried her 'trick' again a few minutes later. Momma did not fall for it that time. She was always known as a opossum back in her NICU days. This took it to a whole new level!
And, Dogg remains Dogg. He had a rough week last week. We were preparing our hearts for his death. =( Whatever he got into, whatever had sickened him, seemed to pass after four rough days. During those days, I had to keep close watch over him because he was trying to leave. He constantly was asking to be let out, would walk down the stairs, stand on the sidewalk and lift his nose to the air, then try to go. Not cool. For the first time in his life, he refused to sleep in the bed at my side. He was guarded, wanted no one around. Normally a gentle dog, he bit me and bruised me on three separate occasions. The weekend was long and I was anxiously awaiting Monday to come so I could get him to the vet. But, he woke up Monday morning with a different look in his eyes and a slight pep back to his step. Huge sigh of relief. He's back to his normal antics, so all appears fine now. : /
March passed us by. Although known by practically no one, it brought about the one-year date of losing our third little Veitz baby. Sad times. We were nearly 11 weeks along when we learned that sweet baby's heart was no longer beating. I wrote a long, long post on it, when it happened, but saved it to draft and never published it. Perhaps, one day. The beauty of it all is the peace that God has given me in such a heart-wrenching loss... even from the day 'it' happened until now. God's ways are perfect, often not understood (for me, at least), but, constantly display how good He really is to me.
Looking over her records, our new doc said that Flara had a much thicker file than most adults he has ever seen. We just wanted to make sure each family member stays consistent. ;) After reviewing many of the pages and quizzing me beyond my now-lagging memory, he concluded that he agreed that Flara appeared to be more 'impending' in her hypothyroid issues, but he had concern that she might have pituitary issues. His explanation was that, typically, if brain damage has occurred in one area, then the injury can reciprocate in another area, which often occurs in the pituitary... I think... I'm pretty sure that's how he explained it... Anyways, it was a combination of her history of a brain bleed, her not-fully-thickened corpus callosum, and her newly-discovered lagging cerebellum.
He sent me over to Children's for labs. He was checking her current thyroid hormone levels and functioning, as well as her water-retaining hormone, and her pituitary functions. He called me the next morning to tell me that her pituitary for now is operating normally, her water-retaining hormone was normal, but her thyroid levels were slightly down. So, he told me the changes in her Synthroid dose that he wanted implemented, and then to repeat levels in one month. And, at some point, he would like to have an MRI done of her brain, mainly to visualize her pituitary.
In a nut-shell, this all confirms the 'impending' state of her thyroid. When she was smaller, her thyroid was producing enough hormone to cover her body's needs. When we discovered the problem, her body was still able to keep up, but other hormonal levels were elevated as her body was compensating for the shortfalls. Now, even while receiving hormone replacement, her body size has finally outgrown her thyroid's abilities. Praise God it was all discovered before her brain was adversely affected.
We also had an update on her heart a couple weeks before. Our cardiologist opted out of doing an echo. She was too fidgety and fussy, and he felt good enough from what he 'saw' on her EKG, her blood pressures, oxygen saturations, and what he could hear... the murmurs were diminished. Plus, we were able to report that she has been without symptoms for the past several months. So, follow-up in a year!
We're on a waiting list for speech therapy. We're switching to a new location for physical therapy. This will start this upcoming Tuesday. We had taken about a two-month break from our prior PT locale-- Flara was having a terrible time and was uncooperative. Flara's physiatrist (the doc who evaluates her brain functioning and developmental state-of-being) thinks that Flara was pushed too early, and so she has formed negative associations that she has been unable to break.
She will turn an amazing 19 months in three days. She's now 23 pounds and measures 30.75 inches tall. Big girl!
Noël remains drama-free. =) She does have her fair share of ear infections, strep throat, and random pukings (as in, this week, everywhere... poor girl)... but, otherwise, nothing has happened that has raised concern for momma and daddy. Thank you, Lord! She keeps herself busy with her birds... we have three nests on our little quarter-acre plot, has been tending to her strawberries, and picks flowers from those she planted-- on the last day of winter!-- daily. Needless to say, but momma has stayed busy until this week fussing over the flowers to keep them alive during cold spells and frosts by covering them at night and strategically placing jugs of hot water to warm the air around them-- and, fussing over the birdies. Our bird house with our Eastern Bluebird babies keeps coming apart, and I have done countless repair jobs with duct tape (HUGE disappointment) to keep it all together. I thought duct tape was practically permanent? Not in these rains.... When we're not outside, Noël is busy with her cooking, dressing up as a princess, and dancing.
Flara, the wood sprite... That girl is so spirited. Our pediatrician even commented this week that, "well, Flara is... Flara... and, you have.... well, two extremes in personalities." She keeps us laughing. She always has a sparkle in her eyes to let us know she's up to something. She does things... to bait us... and, we fall for it. She loves it. She 'got' momma so good this week, that I screeched the SUV off the interstate, slammed it into park, threw off my seatbelt, and was diving into the back to rescue her... to discover her giving me a look like, "I sure got you this time, mom," then giggled at me. What did she do? Well, she feigned choking-- she went from flopping her head back-and-forth violently, quickly, then flopped her head down and let it bob with the bumps on the road. She did not respond to my voice. Yeah. All an act. Once back on the interstate, she tried her 'trick' again a few minutes later. Momma did not fall for it that time. She was always known as a opossum back in her NICU days. This took it to a whole new level!
And, Dogg remains Dogg. He had a rough week last week. We were preparing our hearts for his death. =( Whatever he got into, whatever had sickened him, seemed to pass after four rough days. During those days, I had to keep close watch over him because he was trying to leave. He constantly was asking to be let out, would walk down the stairs, stand on the sidewalk and lift his nose to the air, then try to go. Not cool. For the first time in his life, he refused to sleep in the bed at my side. He was guarded, wanted no one around. Normally a gentle dog, he bit me and bruised me on three separate occasions. The weekend was long and I was anxiously awaiting Monday to come so I could get him to the vet. But, he woke up Monday morning with a different look in his eyes and a slight pep back to his step. Huge sigh of relief. He's back to his normal antics, so all appears fine now. : /
March passed us by. Although known by practically no one, it brought about the one-year date of losing our third little Veitz baby. Sad times. We were nearly 11 weeks along when we learned that sweet baby's heart was no longer beating. I wrote a long, long post on it, when it happened, but saved it to draft and never published it. Perhaps, one day. The beauty of it all is the peace that God has given me in such a heart-wrenching loss... even from the day 'it' happened until now. God's ways are perfect, often not understood (for me, at least), but, constantly display how good He really is to me.
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