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. =)
Tuesday, April 26, 2011
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.
Monday, January 31, 2011
Complaint of the Day....
My months are always the same. I have to sort out what to pay first, what to pay late, and which medical bills to squeak in to make my month complete. The order changes month-to-month, but the end result is that everybody gets paid every month... I've been doing this for three years now.
Friday, I spent the entire night, as in up 'til 0500 hours, working on sorting out who to pay and when. Already a bit late, I opted to pay one of my smallest student loans.
Sunday, today, I receive a phone call.
Dude: This is so-and-so from Not-so-Nice-Student-Loan Land. I am calling because you are late on your January payment of 50.22. Although this advances your due date and adds January's installment onto February's installment, I would still like to have you make a payment of part (as in January) or all of your amount due (including what's due February).
Me: Yes, I realize your computer shows that I am late, but my husband was paid on Friday and I paid everything at some point through the night on Friday. I know, it's the weekend, and thus the system has probably not processed my payment, but it is in there.
Dude: Oh, great! And, where, miss, did you make this payment?
Me: Online, via my online account.
Dude: Excellent. The system does show that we have received a pending payment to your account posted on Friday. I just needed to confirm that the payment was done.
(My thought... Annnnd, you needed to call me with this knowledge why????)
Dude: For the record, so that I may make a notation, we would like to know exactly why you were late on this month's payment?
Me: Well, I could list several reasons, but I'll give you the main reason. I delivered my daughter extremely premature, and now we have a child whom the State considers disabled.
(Long pause... wonder if Dude has left... Still a long pause....)
Dude: Ummm, okay. Well, that is certainly understandable. I will make note of that in my computer. Now, I do need to ask as you have a payment coming up in February (at the END of February, mind you). Will you be able to make your February payment, or do you anticipate more hardship?
Me: Well, sir, in all honesty, I don't plan my life by looking ahead to the next month anymore. In my family's situation, we focus on getting by a single day at a time.
(Long awkward pause repeats itself).
Dude: Ummmm, well. Ummm, that is certainly understandable (heard that before). You are definitely in a situation that is difficult. I will just make a notation of this in my computer (yes, I know). Okay, miss, that is all I need for today. In the meantime, you may receive more phone calls from our representatives until the payment actually is completely processed.
Me: Yes, thank you. You have a great day.
Dude: Oh, yes. Thank you. [click]
*****************************************************************************
Today was just one of those days. Feeling emotional, drained... been in lots of thoughts. That phone call definitely did not accentuate the positives.
I know due dates exist for a purpose...including much more than due dates for bills. Geesh. Talk to Flara about due dates existing for a purpose. It just seems that sometimes the (unintentional) insensitivity of others really slaps the reality of a situation into my face. Perhaps it's because it followed a week that involved stitches, possible hearing loss, an upsurge in the thyroid issues, a baby so miserable because she cannot go potty, continued expression over concerns with her lack of vocabulary... Who knows. After a week of feeling surprisingly upbeat and positive about all of the newest developments, today was a major low. Dude's phone call surely did not help.
Thankfully, the day was/ still is beautiful. 72 degrees and sunny. It surely sparked life back into my doldrums. The girls and I headed out to play after Mike went to work. Although it was nap time and she was visibly distraught, I decided to keep the FlareBear up and get her out to get some God-designed Vitamin D therapy. Our outside time was spectacular. We ran countless times around the yard, pseudo-climbed trees, dug in dirt, ate dirt (okay, just Flara), played chase. Three hours passed by rather quickly.
In the midst of our play, complaint no. 2 filed.
My neighbors sat out a very nice metal swing set at the curb with a 'free' sign attached. With Mike working, I could not drag the thing across the road with two kids in tow, so I decided to walk over and ask the neighbors if they would hold onto it 'til Mike came home. I have the FlareBear in my arms, and a bouncy Noël at my side repeating, "wow wow swing, wow wow swing." She really wanted that swing.
I called Mike to double check that he was okay with the idea. He says yes, we walk across the road, two male teens whom I have never seen before walk up the road. The get to the swing about 10 steps ahead of us. They jump up onto the swing, jump down, shake it. Pick it up. Look at me. I know they hear little Noël still chanting her excitement at getting a swing. Pick up swing and drag it into the road. I groan. I ask, "are you guys really going to take that swing?" Teen One wheels around and says with attitude, "well, yes, ma'am." Noël loudly says, "no, swing, no swing. Wow wow swing."
Momma chokes back tears. I know they heard her. They were still within steps of us. We're still in the middle of the road. Noël looks up at me with her little face smooshed up like she could cry. I tell her I am so sorry, but the boys decided to take it. She tells me they are mean boys. Yes, momma agrees.
We talk to our neighbors a bit, then go home. She quietly tells me at home that she really wanted the swing. I tell her quietly that I know how disappointed she is and that momma's disappointed, too. I remind her that this is a good lesson that sometimes in life, we will be disappointed. I tell her, too, that God sees all that we say and think and do, as well as what others do. I tell her God knows how much she wanted that swing, and he knows the heart condition of the boys that caused them to take a swing from a sweet little girl. She looks down and tells me, "mean boys" again. I tell her they did not do something nice, but God is still in control of everything. I ask her if she knows that it might not seem fair now, but one day they will have to talk to God about why they made a selfish decision and broke the heart of something God cares a lot about. She says she knows. I then ask her what God wants us to do. Sadly, she tells me she does not know.
Pray for our enemies. She turns her little head. Momma tells little Noël that when somebody hurts us, we should pray for them. She agrees. We pray for the boys to be made aware of the ugly within their hearts that made them want to put themselves first. We pray that the boys would not continue on in a path that will likely lead to destruction. We ask that God gives comfort to Noël and helps her to understand everything that happened outside. We ask forgiveness that we were angry at the boys and pray that they could know the love of Jesus Christ.
When all was done, she really seemed okay. I honestly think this was the first major letdown that did not end in a flood of tears and unrecognizable words. I really was proud of how Noël handled such a major disappointment. I told her that maybe God's plan for her swing set is bigger than the one we could have had today, but it could be His plan that we just don't have one. She gave me a smiley, "yes."
That certainly turned the situation into a positive, and I was definitely thankful that God used that disappointment to teach Noël a lesson on how we should respond to others and letdowns in life. It also was a good reminder and lesson for momma on several levels.
The day has ended well.
God is good to us.
Friday, I spent the entire night, as in up 'til 0500 hours, working on sorting out who to pay and when. Already a bit late, I opted to pay one of my smallest student loans.
Sunday, today, I receive a phone call.
Dude: This is so-and-so from Not-so-Nice-Student-Loan Land. I am calling because you are late on your January payment of 50.22. Although this advances your due date and adds January's installment onto February's installment, I would still like to have you make a payment of part (as in January) or all of your amount due (including what's due February).
Me: Yes, I realize your computer shows that I am late, but my husband was paid on Friday and I paid everything at some point through the night on Friday. I know, it's the weekend, and thus the system has probably not processed my payment, but it is in there.
Dude: Oh, great! And, where, miss, did you make this payment?
Me: Online, via my online account.
Dude: Excellent. The system does show that we have received a pending payment to your account posted on Friday. I just needed to confirm that the payment was done.
(My thought... Annnnd, you needed to call me with this knowledge why????)
Dude: For the record, so that I may make a notation, we would like to know exactly why you were late on this month's payment?
Me: Well, I could list several reasons, but I'll give you the main reason. I delivered my daughter extremely premature, and now we have a child whom the State considers disabled.
(Long pause... wonder if Dude has left... Still a long pause....)
Dude: Ummm, okay. Well, that is certainly understandable. I will make note of that in my computer. Now, I do need to ask as you have a payment coming up in February (at the END of February, mind you). Will you be able to make your February payment, or do you anticipate more hardship?
Me: Well, sir, in all honesty, I don't plan my life by looking ahead to the next month anymore. In my family's situation, we focus on getting by a single day at a time.
(Long awkward pause repeats itself).
Dude: Ummmm, well. Ummm, that is certainly understandable (heard that before). You are definitely in a situation that is difficult. I will just make a notation of this in my computer (yes, I know). Okay, miss, that is all I need for today. In the meantime, you may receive more phone calls from our representatives until the payment actually is completely processed.
Me: Yes, thank you. You have a great day.
Dude: Oh, yes. Thank you. [click]
*****************************************************************************
Today was just one of those days. Feeling emotional, drained... been in lots of thoughts. That phone call definitely did not accentuate the positives.
I know due dates exist for a purpose...including much more than due dates for bills. Geesh. Talk to Flara about due dates existing for a purpose. It just seems that sometimes the (unintentional) insensitivity of others really slaps the reality of a situation into my face. Perhaps it's because it followed a week that involved stitches, possible hearing loss, an upsurge in the thyroid issues, a baby so miserable because she cannot go potty, continued expression over concerns with her lack of vocabulary... Who knows. After a week of feeling surprisingly upbeat and positive about all of the newest developments, today was a major low. Dude's phone call surely did not help.
Thankfully, the day was/ still is beautiful. 72 degrees and sunny. It surely sparked life back into my doldrums. The girls and I headed out to play after Mike went to work. Although it was nap time and she was visibly distraught, I decided to keep the FlareBear up and get her out to get some God-designed Vitamin D therapy. Our outside time was spectacular. We ran countless times around the yard, pseudo-climbed trees, dug in dirt, ate dirt (okay, just Flara), played chase. Three hours passed by rather quickly.
In the midst of our play, complaint no. 2 filed.
My neighbors sat out a very nice metal swing set at the curb with a 'free' sign attached. With Mike working, I could not drag the thing across the road with two kids in tow, so I decided to walk over and ask the neighbors if they would hold onto it 'til Mike came home. I have the FlareBear in my arms, and a bouncy Noël at my side repeating, "wow wow swing, wow wow swing." She really wanted that swing.
I called Mike to double check that he was okay with the idea. He says yes, we walk across the road, two male teens whom I have never seen before walk up the road. The get to the swing about 10 steps ahead of us. They jump up onto the swing, jump down, shake it. Pick it up. Look at me. I know they hear little Noël still chanting her excitement at getting a swing. Pick up swing and drag it into the road. I groan. I ask, "are you guys really going to take that swing?" Teen One wheels around and says with attitude, "well, yes, ma'am." Noël loudly says, "no, swing, no swing. Wow wow swing."
Momma chokes back tears. I know they heard her. They were still within steps of us. We're still in the middle of the road. Noël looks up at me with her little face smooshed up like she could cry. I tell her I am so sorry, but the boys decided to take it. She tells me they are mean boys. Yes, momma agrees.
We talk to our neighbors a bit, then go home. She quietly tells me at home that she really wanted the swing. I tell her quietly that I know how disappointed she is and that momma's disappointed, too. I remind her that this is a good lesson that sometimes in life, we will be disappointed. I tell her, too, that God sees all that we say and think and do, as well as what others do. I tell her God knows how much she wanted that swing, and he knows the heart condition of the boys that caused them to take a swing from a sweet little girl. She looks down and tells me, "mean boys" again. I tell her they did not do something nice, but God is still in control of everything. I ask her if she knows that it might not seem fair now, but one day they will have to talk to God about why they made a selfish decision and broke the heart of something God cares a lot about. She says she knows. I then ask her what God wants us to do. Sadly, she tells me she does not know.
Pray for our enemies. She turns her little head. Momma tells little Noël that when somebody hurts us, we should pray for them. She agrees. We pray for the boys to be made aware of the ugly within their hearts that made them want to put themselves first. We pray that the boys would not continue on in a path that will likely lead to destruction. We ask that God gives comfort to Noël and helps her to understand everything that happened outside. We ask forgiveness that we were angry at the boys and pray that they could know the love of Jesus Christ.
When all was done, she really seemed okay. I honestly think this was the first major letdown that did not end in a flood of tears and unrecognizable words. I really was proud of how Noël handled such a major disappointment. I told her that maybe God's plan for her swing set is bigger than the one we could have had today, but it could be His plan that we just don't have one. She gave me a smiley, "yes."
That certainly turned the situation into a positive, and I was definitely thankful that God used that disappointment to teach Noël a lesson on how we should respond to others and letdowns in life. It also was a good reminder and lesson for momma on several levels.
The day has ended well.
God is good to us.
Friday, January 7, 2011
New Design
I know I have not said anything on here for several months. I actually have a number of posts in the 'drafts' file, but never managed to actually post them. I am only posting now because I changed the background and design of my blog. I have been rereading my blog from the beginning of Flara's journey, and I found it quite straining on my eyes. Thus, the 'new and updated' version... hopefully, more eye friendly.
Wednesday, June 30, 2010
Nine-month check-up
Today was Flara's nine-month check-up, and we were quite pleased with the visit!
Best of all, she was up-to-date on shots and so did not have to have any! I was really feeling bad for the little girl.
Although Flara has been struggling to gain weight (usually an ounce or two a week... if even), she gained an amazing 8 ounces in the last 10 days! She tipped the scales at 13 pounds, 15 ounces. She also grew one-half inch so now measures 25.5 inches long. Of notable cause, she finally appeared on the real "big girl" growth chart! She's been charting on the preemie chart, but she transitioned over this time. Still adjusted for prematurity, she is about 35% for length (if a 6-month-old baby) and 12% for weight!
With this most recent growth spurt, she is literally eating straight out of our wallets. That's never an easy thing when you're on a super-tight budget! Thankfully, she was given the go-ahead to begin working on stage II foods, then progress to stage III foods within a few weeks. We get to switch off of the expensive preemie formula and start using "normal" formula, plus supplementing her with one bottle of Pediasure daily. Hopefully, this will result in better weight gain and save us a bit of money! =)
Her doc was pleased with the sound of her lungs, so we will not have to be referred to a lung specialist at this time (to follow up on the fast-breathing spells and blue hands and feet). Yay! Our pediatrician's best guess is that she is having some residual effects from scarring from being intubated.
She has been labeled 'delayed onset' in the matter of teething. I believe I've mentioned before that the roof of her mouth is considered 'high and arched,' which is a lovely result of being intubated as a newborn. If she doesn't have teeth erupt before her first birthday, then little Flara will be referred to a specialized pediatric dentist. A series of x-rays would be obtained to see how her little teeth are doing, and to further evaluate her palate, and ultimately, to determine if it's fully closed or would need some sort of medical intervention. Right now, it does not affect her ability to eat, so we can sit and wait.
If anything else happened at the visit, I cannot remember it right now. =)
We will follow up in about six weeks to check on her weight gain.
Best of all, she was up-to-date on shots and so did not have to have any! I was really feeling bad for the little girl.
Although Flara has been struggling to gain weight (usually an ounce or two a week... if even), she gained an amazing 8 ounces in the last 10 days! She tipped the scales at 13 pounds, 15 ounces. She also grew one-half inch so now measures 25.5 inches long. Of notable cause, she finally appeared on the real "big girl" growth chart! She's been charting on the preemie chart, but she transitioned over this time. Still adjusted for prematurity, she is about 35% for length (if a 6-month-old baby) and 12% for weight!
With this most recent growth spurt, she is literally eating straight out of our wallets. That's never an easy thing when you're on a super-tight budget! Thankfully, she was given the go-ahead to begin working on stage II foods, then progress to stage III foods within a few weeks. We get to switch off of the expensive preemie formula and start using "normal" formula, plus supplementing her with one bottle of Pediasure daily. Hopefully, this will result in better weight gain and save us a bit of money! =)
Her doc was pleased with the sound of her lungs, so we will not have to be referred to a lung specialist at this time (to follow up on the fast-breathing spells and blue hands and feet). Yay! Our pediatrician's best guess is that she is having some residual effects from scarring from being intubated.
She has been labeled 'delayed onset' in the matter of teething. I believe I've mentioned before that the roof of her mouth is considered 'high and arched,' which is a lovely result of being intubated as a newborn. If she doesn't have teeth erupt before her first birthday, then little Flara will be referred to a specialized pediatric dentist. A series of x-rays would be obtained to see how her little teeth are doing, and to further evaluate her palate, and ultimately, to determine if it's fully closed or would need some sort of medical intervention. Right now, it does not affect her ability to eat, so we can sit and wait.
If anything else happened at the visit, I cannot remember it right now. =)
We will follow up in about six weeks to check on her weight gain.
Sunday, June 20, 2010
The death of a soldier.
Mike's Grandpa Veitz died last Thursday evening following an attempt to cardiovert his heart. This is done when the heart is misfiring in a rhythm that won't sustain life, so the heart is stopped, then shocked with the hopes that in the restart, the heart will resume beating with a normal heart rhythm. Unfortunately, the cardioversion was not successful, and Grandpa Veitz's heart never resumed beating. Although he had been in failing health for some time, the news was still unexpected and very sad. Without hesitation, Mike and I packed our bags, loaded the girls, and headed to North Dakota.
I'm writing this story to tell the tale of our military and those who serve in it. Walter Henry Veitz, 82, had served during the Korean Conflict, and from what his brother tells, saw some horrific things. Through the years that I knew Grandpa Veitz, he never mentioned his time in the service. He was always a jokester, and a man I really loved and greatly appreciated for the glimmer he had in his eyes... a tell-tell sign that he was going to trick you at cards or tell some sort of joke. He was a leathermaker, too, of which I had found a kindred spirit having done leather work myself when I was little 4-H'er. =)
Grandpa Veitz was buried in the National Cemetery outside Bismarck, North Dakota. I have never been to Arlington, or any National Cemetery for that matter, so my only idea of what it would be like was from the images I had seen on TV or in the paper. I did know that we had to be prompt on our arrival time as burials are occurring every hour eight times a day. Exhausting. I wondered if the soldiers helping with the service would be walking through the ceremony without much thought as they performed it repeatedly throughout the work day.
The grounds were well-manicured with the rows of headstones. A large area of new gravesites with the metal markers gave indication where the newest were buried. I was a bit taken aback at the number there, realizing how quickly our Nation's veterans are dying. Further up the hill, a small building stood with a chapel. To the left and waiting for our arrival and the ceremony, was a group of retired veterans serving as the Honor Guard, displaying our country's flags. Their faces appeared somber and respectful, and I still wondered how they perceived the number of ceremonies in a day.
We walked into the small chapel with two rows of seats and Grandpa Veitz's coffin draped in the American Flag at the front. This was framed by a series of tall windows overlooking the grounds and was topped by stained glass at the front. No lights were turned on, so the sunlight was casting long shadows in the room, and in my opinion, really added to the effect. At four posts around the casket were three Army soldiers (young, and still active duty, I would guess) and one older gentleman, a retired soldier. Looking through the windows, the Honor Guard stood solemnly. As the pastor walked through the final stages of the ceremony (we had attended a church funeral service prior), I kept watching the faces of all of the soldiers. Inside and outside. Emotions were actually showing on their faces, and it was then that I realized that they do take this seriously and were not marching through another ceremony.
As the service concluded, the sound of Taps played from over our left shoulders, the flag was removed from the casket, the careful task of folding the flag was begun, final shots were fired, a final salute, and then the flag was presented to Grandma Veitz. The Army soldiers had folded the flag with precision, then handed it to the retired veteran, who walked it to Grandma Veitz. Kneeling down, he stated, "On behalf of the United States of America, and our local VFW post, we present this flag to you..." As he said those words, his voice broke and tears welled up in his eyes. He paused for a moment, finished his words, then handed the flag to Grandma Veitz.
It was a beautiful ceremony.
I had wanted to be photographing the whole thing because it was such a thing of beauty, but I didn't know how anyone would feel about someone snapping photos, so I stood behind the row of chairs and held Noël.
It made me think a lot about all of our veterans and our troops currently serving. I thought of my cousin Troy, who has gone overseas two or three times, and how this ceremony will await him one day. I thought of how many families, young and old, are sitting through this as our country moves through a period of war. I thought of all of the heck our military receives... sadly. Many people are willing to risk their safety, lives, and families for our benefit, and many of them end up sitting in a chapel, listening to taps, and watching in slow-motion as the flag that draped the casket is folded up and presented to the surviving spouse or children.
I was really moved by the sincerity and honor and respect shown to Grandpa Veitz's body, and I know it's being played out across the country.
My final thought as we drove away... "I really like the military." All of it.
I'm writing this story to tell the tale of our military and those who serve in it. Walter Henry Veitz, 82, had served during the Korean Conflict, and from what his brother tells, saw some horrific things. Through the years that I knew Grandpa Veitz, he never mentioned his time in the service. He was always a jokester, and a man I really loved and greatly appreciated for the glimmer he had in his eyes... a tell-tell sign that he was going to trick you at cards or tell some sort of joke. He was a leathermaker, too, of which I had found a kindred spirit having done leather work myself when I was little 4-H'er. =)
Grandpa Veitz was buried in the National Cemetery outside Bismarck, North Dakota. I have never been to Arlington, or any National Cemetery for that matter, so my only idea of what it would be like was from the images I had seen on TV or in the paper. I did know that we had to be prompt on our arrival time as burials are occurring every hour eight times a day. Exhausting. I wondered if the soldiers helping with the service would be walking through the ceremony without much thought as they performed it repeatedly throughout the work day.
The grounds were well-manicured with the rows of headstones. A large area of new gravesites with the metal markers gave indication where the newest were buried. I was a bit taken aback at the number there, realizing how quickly our Nation's veterans are dying. Further up the hill, a small building stood with a chapel. To the left and waiting for our arrival and the ceremony, was a group of retired veterans serving as the Honor Guard, displaying our country's flags. Their faces appeared somber and respectful, and I still wondered how they perceived the number of ceremonies in a day.
We walked into the small chapel with two rows of seats and Grandpa Veitz's coffin draped in the American Flag at the front. This was framed by a series of tall windows overlooking the grounds and was topped by stained glass at the front. No lights were turned on, so the sunlight was casting long shadows in the room, and in my opinion, really added to the effect. At four posts around the casket were three Army soldiers (young, and still active duty, I would guess) and one older gentleman, a retired soldier. Looking through the windows, the Honor Guard stood solemnly. As the pastor walked through the final stages of the ceremony (we had attended a church funeral service prior), I kept watching the faces of all of the soldiers. Inside and outside. Emotions were actually showing on their faces, and it was then that I realized that they do take this seriously and were not marching through another ceremony.
As the service concluded, the sound of Taps played from over our left shoulders, the flag was removed from the casket, the careful task of folding the flag was begun, final shots were fired, a final salute, and then the flag was presented to Grandma Veitz. The Army soldiers had folded the flag with precision, then handed it to the retired veteran, who walked it to Grandma Veitz. Kneeling down, he stated, "On behalf of the United States of America, and our local VFW post, we present this flag to you..." As he said those words, his voice broke and tears welled up in his eyes. He paused for a moment, finished his words, then handed the flag to Grandma Veitz.
It was a beautiful ceremony.
I had wanted to be photographing the whole thing because it was such a thing of beauty, but I didn't know how anyone would feel about someone snapping photos, so I stood behind the row of chairs and held Noël.
It made me think a lot about all of our veterans and our troops currently serving. I thought of my cousin Troy, who has gone overseas two or three times, and how this ceremony will await him one day. I thought of how many families, young and old, are sitting through this as our country moves through a period of war. I thought of all of the heck our military receives... sadly. Many people are willing to risk their safety, lives, and families for our benefit, and many of them end up sitting in a chapel, listening to taps, and watching in slow-motion as the flag that draped the casket is folded up and presented to the surviving spouse or children.
I was really moved by the sincerity and honor and respect shown to Grandpa Veitz's body, and I know it's being played out across the country.
My final thought as we drove away... "I really like the military." All of it.
A little scare.
Flara has been having a few problems lately... for the past couple of weeks, really. We had noticed that she had begun to breathe faster at spells, whether she was resting or playing. I kept a watchful eye on it, then began to notice that she was also using some extra muscles above her sternum and clavicles to breathe. To add to that, her hands and feet starting turning very blue and would go ice-cold. I asked the nurse practitioner about it the Wednesday we were in the office to have Noël checked out for a urinary tract infection, and she said we should call the cardiologist.
The very next day, Mike's Grandpa Veitz died, so we loaded into our truck and began the 26-hour long trek to North Dakota. During the week in Bismarck, we noticed she was having more blue spells, so we told ourselves that we would call as soon as we returned to Tennessee. We drove straight through on our return trip, so we basically slept the whole next day and forgot to call. We remembered the following day, so I called the cardiologist and told them what she was doing. Very concerned, I was told to come in for the very first visit of the day. Also, I was very seriously warned that if Flara did anything different or 'funny,' we were to go straight to the ER... no hesitating. A bit concerned, we tried to not get worked up until we saw the doctor, but we were mentally preparing for the possibility of heading to Nashville for Vanderbilt Hospital on a dime's notice.
Flara and I arrived at the cardiologist's at 0745, and were quickly taken back to her first test. She had a post-ductal blood pressure taken (left foot, after the blood has passed through the heart and lungs), and it was normal. Her EKG gave no indication of any additional stress on her heart, and her oxygen saturation was between 92 and 100. Next, we went in for her echo. The doctor immediately noticed that her ventricles were of normal size. Next, he looked at her pulmonary artery, and it was back to normal size from previously being enlarged. The extra fluid in her lungs was looking better, so he declared that her pulmonary hypertension was resolved. He looked at her PDA (that extra little blood vessel that helps the blood bypass the lungs in-utero that is still open in Flara), and it, too, was a teensy bit smaller. Last, he noted that although the hole between her atria was still of the same size, some fibrous bands were criss-crossing over the hole indicating that Flara's heart is attempting to repair itself!!!! He was really pleased with the results, and said that based on his findings and the overall appearance of her heart and lungs, he could officially say that she is no longer in heart failure! We are so, so, soooo thankful for that, and ultimately give all the thanks to God!
As far as the breathing issues and hands and feet, he said that it's not being caused by her heart. He said that she has sluggish circulation, and that's simply a problem of prematurity that will have to be outgrown... like all of those other difficulties. He said that her little lungs are still recovering from missing out on the entire third trimester to grow.
Next on our day was an already-scheduled follow-up appointment with Flara's brain and developmental specialist. I was a bit in odds about this as she is sometimes a bit scolding on needing to work harder. We went into this meeting with the whole crew, and the doc walked in looking very tired. She said she'd had a day of total screamers, and her nerves were certainly worn out. Yikes! But, she assessed Flara and was SUPER pleased with the progress our girl has made, so my new homework assignment turned out to be small. She showed us how to help Flara learn to sit up and how to really get up on her hands and knees for crawling, and then one last exercise to help her learn to move her legs forward to walk assisted. By pressing the one little sitting 'button' as she calls them, Flara sat for a whole 5 minutes! That was amazing! Then, as she showed me the crawling position, I realized that my homework from the last visit was being utilized with Flara just in a different position... simply building off the past. By the time we finished, the doctor was really praising both the girls for being "so lovely" and kept telling Mike and me how much she appreciated how the girls acted. =) Yippee! Both girls have been so tired from the North Dakota trip, I wasn't sure how the office visit would go.
In the end, Mike and I were super pleased with our day. What we were expecting to be a day of turmoil turned out to be a day of pleasantries and our thanking our wonderful Savior for all of the good news!
We are also thankful for everyone who called, texted, or Facebooked us, and the many prayers!
The very next day, Mike's Grandpa Veitz died, so we loaded into our truck and began the 26-hour long trek to North Dakota. During the week in Bismarck, we noticed she was having more blue spells, so we told ourselves that we would call as soon as we returned to Tennessee. We drove straight through on our return trip, so we basically slept the whole next day and forgot to call. We remembered the following day, so I called the cardiologist and told them what she was doing. Very concerned, I was told to come in for the very first visit of the day. Also, I was very seriously warned that if Flara did anything different or 'funny,' we were to go straight to the ER... no hesitating. A bit concerned, we tried to not get worked up until we saw the doctor, but we were mentally preparing for the possibility of heading to Nashville for Vanderbilt Hospital on a dime's notice.
Flara and I arrived at the cardiologist's at 0745, and were quickly taken back to her first test. She had a post-ductal blood pressure taken (left foot, after the blood has passed through the heart and lungs), and it was normal. Her EKG gave no indication of any additional stress on her heart, and her oxygen saturation was between 92 and 100. Next, we went in for her echo. The doctor immediately noticed that her ventricles were of normal size. Next, he looked at her pulmonary artery, and it was back to normal size from previously being enlarged. The extra fluid in her lungs was looking better, so he declared that her pulmonary hypertension was resolved. He looked at her PDA (that extra little blood vessel that helps the blood bypass the lungs in-utero that is still open in Flara), and it, too, was a teensy bit smaller. Last, he noted that although the hole between her atria was still of the same size, some fibrous bands were criss-crossing over the hole indicating that Flara's heart is attempting to repair itself!!!! He was really pleased with the results, and said that based on his findings and the overall appearance of her heart and lungs, he could officially say that she is no longer in heart failure! We are so, so, soooo thankful for that, and ultimately give all the thanks to God!
As far as the breathing issues and hands and feet, he said that it's not being caused by her heart. He said that she has sluggish circulation, and that's simply a problem of prematurity that will have to be outgrown... like all of those other difficulties. He said that her little lungs are still recovering from missing out on the entire third trimester to grow.
Next on our day was an already-scheduled follow-up appointment with Flara's brain and developmental specialist. I was a bit in odds about this as she is sometimes a bit scolding on needing to work harder. We went into this meeting with the whole crew, and the doc walked in looking very tired. She said she'd had a day of total screamers, and her nerves were certainly worn out. Yikes! But, she assessed Flara and was SUPER pleased with the progress our girl has made, so my new homework assignment turned out to be small. She showed us how to help Flara learn to sit up and how to really get up on her hands and knees for crawling, and then one last exercise to help her learn to move her legs forward to walk assisted. By pressing the one little sitting 'button' as she calls them, Flara sat for a whole 5 minutes! That was amazing! Then, as she showed me the crawling position, I realized that my homework from the last visit was being utilized with Flara just in a different position... simply building off the past. By the time we finished, the doctor was really praising both the girls for being "so lovely" and kept telling Mike and me how much she appreciated how the girls acted. =) Yippee! Both girls have been so tired from the North Dakota trip, I wasn't sure how the office visit would go.
In the end, Mike and I were super pleased with our day. What we were expecting to be a day of turmoil turned out to be a day of pleasantries and our thanking our wonderful Savior for all of the good news!
We are also thankful for everyone who called, texted, or Facebooked us, and the many prayers!
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