I hope everyone had a wonderful Thanksgiving and are still suffering the consequences of eating 3 pounds of dressing like I am. I’m not kidding. My mom made about 4 gallons of dressing, and it was gone by Friday afternoon. The turkey was superb this year. I ate the leftovers with guacamole on top. Oh, and Henry’s pecan pie was PERFECTION!!!!!!!!!! I was almost sad for Charlotte that she did not get to taste all the delicious foods but she is still preferring mother’s milk. Actually, she so prefers it that she refuses a bottle. I keep trying to tell her it’s the same thing, but she will have none of it. Weaning this child is going to be interesting.
Enough about food; I have to tell you all the best part of my trip. We arrived in Covington very late on Tuesday evening and Charlotte was a dream in the car. Ben and I couldn’t believe it. We quickly said hello to my parents and then made our way to bed. Wednesday, we finally got to meet LIA!!! I can’t tell you how great it was to see my precious niece. She is ADORABLE and she seems tiny compared to my Chunky Monkey. She has very dark hair and a cute chin dimple like Henry. What can I say??? She is an angel. She and Charlotte did very well Thanksgiving Day amidst much commotion, and they both have gotten their ears blown out during football games. Poor Lia has also been exposed to a fair amount of barking with Lilly around, but she handles it like a champ. Henry and Dana are already exceptional parents, and the all consuming love they have for her is evident. It has been a lot of fun seeing my brother becoming a father. I mean this is the same brother who used to squeeze my head, because Mom and Dad said he couldn’t hit me! But Henry is great with Lia, and she adores him as well.
Not nearly as wonderful as meeting Lia, but the other highlight of the weekend was watching the Iron Bowl. WOW! It was quite a game, and I’ll be surprised if Charlotte doesn’t have permanent ear damage after that one. It was especially great to see Charlotte decked out in her AU apparel on Will’s lap while he cheered. I would say last weekend was awesome for football. Auburn beat Alabama; Florida State whooped up on Florida; and Georgia took Georgia Tech. Now if only Auburn can win the SEC Championship and then the National Championship. Ben’s headed off to watch the SEC Championship this coming weekend, which is why I get to have another week in Covington.
It has been great being home. It’s amazing how much help I have. I don’t know how I’ll ever begin to thank my parents for all they do. They have watched Charlotte so I could run through the shower; held her so I could sit and eat; soothed her when I was worn out; walked with her, because we both needed fresh air; and so much more. They even babysat. Late Saturday afternoon they agreed to watch both Charlotte and Lia while Henry, Dana, Ben, and I went to see the new Harry Potter. The new movie was entertaining, but Dana and I both agreed that we missed our babies and movies just don’t seem quite as important now. My parent’s said both babies did great, so maybe date nights are in our future.
Really, Charlotte has done amazing this whole visit. I thought we would have much more crying bouts and hard nights but she has been so amenable to all the ruckus. She even slept through almost the entire church service before she woke and wanted a change of scenery. Last night has been her fussiest, and it was pretty mild. Unfortunately, when I went to feed her this morning her left eye was covered in goop, and I immediately thought pink eye. I checked with my mom and she said it could possibly be bacterial or viral, and we’d have to watch and see. I was upset to think that she might have a cold or a bacterial infection and immediately started praying. Well, she has had no puffiness in either eye, no runny nose, and no more goop. The only change has been she has slept nearly the entire day when she is typically very wakeful. I’m not sure if she is just sleeping through the sickness, just had an eye irritation, or what; but I’m thankful and praying she is back at it tomorrow.
Once again, I hope everyone had a joy filled Thanksgiving!
Tuesday, November 30, 2010
Monday, November 22, 2010
"I believe in everything, in everything I'm a believer...and I believe/ In the voices out here/ Tellling me to hold on/ But let go of my fear"
I have a moment’s break as Charlotte sleeps. What am I thinking??? Well, I am thinking how on earth is it almost Thanksgiving?!!! I have been trying to get organized and pack for a long week in Covington, and I can’t get over that it’s already the holiday season. I have packed Charlotte’s bag and have organized my clothes, but my plan to clean the bathroom before leaving is hanging over me like a lead weight. I have walked in our bathroom several times with the intention of starting, but then I get this childish thought: “but I don’t wanna” and the bathroom remains a wreck. It has to be done, so I’ve decided that I will force myself to get scrubbing after our afternoon walk.
That’s right, the girls (Charlotte and Lilly) and I are going for a stroll to soak up the beautiful weather while it lasts. It’s glorious outside. Plus, I’m trying to stick to my exercise regime. I started Tuesday. Mostly, I do videos in the morning, because that is when Charlotte is at her best and actually seems to like watching me do yoga. I had no idea how grossly out of shape I was until I started these videos. Every muscle has been sore this week…even my toe muscles. And I’m a little sad because I see no results; all that ab work and nada. Yes, I know; it has only been a week, and these things take time; especially when all your abdominal muscles have been sliced in half. I guess I’ll have to keep crunching and hope that it all pays off in the end.
As I read my bible this morning, I kept thinking of all that I have to be thankful for this season. I look back on this year and am in awe of God’s provision in my life. He has truly blessed me beyond measure. All too often I lose sight of all my heavenly Father has done. I get caught up in the day to day grind. I get bogged down by laundry and cleaning. I complain about sleep and lack of free time. I get short tempered and my patience is thin. I am ungrateful and short sighted. I prayed this morning that God would open my eyes to all He has done. I prayed I would better treasure the earthly gifts He has placed before me and that my heart would seek things of eternal nature. Yes, I still have to clean the bathroom, but I must be grateful that I have a bathroom, running water, and a place to feel clean. I have SO, SO much.
But I also know that joy is not based on circumstances. “Giving thanks is different from being thankful…When I give thanks to God for a trial or difficult circumstance, it is not a feeling of thankfulness but a decision of my will to choose to trust God and thank Him in spite of my feelings” (Dillow). Much too often I get wrapped up in how I feel. Our society places so much importance on feelings and tells us to act out our feelings. I have done this all too often and it always gets me nowhere. When has yelling or slamming doors done any good? No, I must look past my feelings which are often sinful and my worse enemy. I must look to a God who is bigger than my circumstances. I want to be able to say, “I have learned the secret of being content in any and every situation.” I want to be a woman whose heart is filled with joy in plenty and in want.
Charlotte started crying, so I had to feed her. Then we went on a walk/jog, and now I’m back to finish up my ramblings.
We head to Covington on Wednesday for the Holidays, and I am there for a week and a half! YIPEE!!! I am so excited about my extended visit because: I get to MEET LIA!!!! Hooray!! I’m sure I am going to get on Henry and Dana’s last nerves telling them how cute she is and snapping pictures of her and Charlotte together…I can’t wait for that first cousin picture! Charlotte and Lia have the same gown and I think it would be adorable to get a picture of them wearing it. I know it is going to be a wonderful time with my family fellowshipping and eating way too much dressing. Oh, how I love dressing. I’m going to try to only gorge myself on Thanksgiving day…but we’ll see if I actually live up to that statement. I’ll try to blog while I’m there to tell you all about the ruckus but my parents’ computer is slow as molasses so no promises. I pray that you all have a joyful Thanksgiving and are able to fully see the depth and breadth of God’s love for you!!!
…..did I mention the bathroom is still not clean : / …………
That’s right, the girls (Charlotte and Lilly) and I are going for a stroll to soak up the beautiful weather while it lasts. It’s glorious outside. Plus, I’m trying to stick to my exercise regime. I started Tuesday. Mostly, I do videos in the morning, because that is when Charlotte is at her best and actually seems to like watching me do yoga. I had no idea how grossly out of shape I was until I started these videos. Every muscle has been sore this week…even my toe muscles. And I’m a little sad because I see no results; all that ab work and nada. Yes, I know; it has only been a week, and these things take time; especially when all your abdominal muscles have been sliced in half. I guess I’ll have to keep crunching and hope that it all pays off in the end.
As I read my bible this morning, I kept thinking of all that I have to be thankful for this season. I look back on this year and am in awe of God’s provision in my life. He has truly blessed me beyond measure. All too often I lose sight of all my heavenly Father has done. I get caught up in the day to day grind. I get bogged down by laundry and cleaning. I complain about sleep and lack of free time. I get short tempered and my patience is thin. I am ungrateful and short sighted. I prayed this morning that God would open my eyes to all He has done. I prayed I would better treasure the earthly gifts He has placed before me and that my heart would seek things of eternal nature. Yes, I still have to clean the bathroom, but I must be grateful that I have a bathroom, running water, and a place to feel clean. I have SO, SO much.
But I also know that joy is not based on circumstances. “Giving thanks is different from being thankful…When I give thanks to God for a trial or difficult circumstance, it is not a feeling of thankfulness but a decision of my will to choose to trust God and thank Him in spite of my feelings” (Dillow). Much too often I get wrapped up in how I feel. Our society places so much importance on feelings and tells us to act out our feelings. I have done this all too often and it always gets me nowhere. When has yelling or slamming doors done any good? No, I must look past my feelings which are often sinful and my worse enemy. I must look to a God who is bigger than my circumstances. I want to be able to say, “I have learned the secret of being content in any and every situation.” I want to be a woman whose heart is filled with joy in plenty and in want.
Charlotte started crying, so I had to feed her. Then we went on a walk/jog, and now I’m back to finish up my ramblings.
We head to Covington on Wednesday for the Holidays, and I am there for a week and a half! YIPEE!!! I am so excited about my extended visit because: I get to MEET LIA!!!! Hooray!! I’m sure I am going to get on Henry and Dana’s last nerves telling them how cute she is and snapping pictures of her and Charlotte together…I can’t wait for that first cousin picture! Charlotte and Lia have the same gown and I think it would be adorable to get a picture of them wearing it. I know it is going to be a wonderful time with my family fellowshipping and eating way too much dressing. Oh, how I love dressing. I’m going to try to only gorge myself on Thanksgiving day…but we’ll see if I actually live up to that statement. I’ll try to blog while I’m there to tell you all about the ruckus but my parents’ computer is slow as molasses so no promises. I pray that you all have a joyful Thanksgiving and are able to fully see the depth and breadth of God’s love for you!!!
…..did I mention the bathroom is still not clean : / …………
Monday, November 15, 2010
"I dig it when your fancy dressed up in lace/ I dig it when you've got a smile on your face"
Saturday November 13
Well, Part TWO is coming much later than I anticipated. As you can surmise, the week has gotten away from me…as usual. Last blog I filled you in on Charlotte’s current medical prognosis. But for today I’d like to forget for a moment about Charlotte’s medical issues and discuss just normal life.
I know I mentioned that I was going to Covington for awhile, it ended up being for about a week. It was wonderful to be home, to laugh with my family, to let my dad hog Charlotte, to talk babies with my sister-in-law, to have SO MUCH help from my mom, and to be surrounded by an abundance of love and fellowship. The highlights of the trip were Saturday night football, delicious meals by my mom, and a delightful photo session with my friend Meghan. Meghan is an excellent photographer, and I had asked her if she wouldn’t mind doing some photos with Charlotte and me. It was so much fun. I actually took a shower AND dried my hair AND put on make-up…amazing I know. And I think I managed to find some clothes without spit-up or poop on them….for Charlotte and for me :) We had a ball hanging out and taking pictures. The first result is posted here: http://loquaciouslady.com/2010/11/08/have-i-told-you-lately-that-youre-barbie/\ on her blog. I love the picture but please ignore all her compliments about me.
It was hard to head home, but I was excited to get back to my husband. First we stopped in Birmingham for one last doctor’s appointment and to have an impromptu Seibels girls get together. I had SUCH a blast visiting with all my cousins. Margaret, I LOVED hearing the wedding details. You look stunning in the dress but of course you would look stunning in any dress. I just hope Barnes knows what a lucky man he is!!! I’ve counted, and we had a total of 14 girls in the house at one time. Did I mention that the Seibels can only produce girls…really great looking girls J It was so much fun. The next morning we headed to Children’s and then back to Scottsboro.
Charlotte was able to hang out with more family on Sunday. We took a day trip to Murfreesboro with Mike and Mary. First we had a delicious lunch with Mimi, Dada, and Aunt Susan. Charlotte really took a liking to Mimi, but who wouldn’t?! Next we headed to visit Freda which was great, but Becky and Carly were dearly missed. And finally we had a quick visit with KayKay, Bob, Donny and Shelia. Then we hit the road because Charlotte was getting pretty fussy. I feel extremely blessed that my sweet little girl is surrounded by a loving family.
Monday, Ben accompanied Charlotte and me to the Pediatrician for her first round of shots which she handled pretty well. Then we headed to Earth Fare. You know, things have changed when a grocery store gets you more excited than a mall! I love that store though. It makes me feel good. All the fresh, organic foods with nothing over processed or pumped with who knows what. They have so many delicious foods and options that I would NEVER find in Scottsboro. Let’s get real here; I can’t even get organic apples in Scottsboro much less quinoa or Turkish lentils. I stocked up on apples since my parents filled me in on the fact that they are one of the worst for pesticides. I also got organic eggs: say no to hormones. And I even found organic Beef and Turkey jerky which is not only delicious but a great source of the protein I dearly need. Our cart filled up rather quickly. I could have spent hours in there, but after being extremely good Charlotte began to fuss, so we decided to hit the road. I love Earth Fare till I get to the check out line and see the damage I have done to our bank account with my healthy fare. Why does healthy food have to cost an arm and a leg?!!! Here is the really crazy thing though: these days I’d rather buy organic chicken than new shoes!!!!! What is wrong with me….I guess I’m really a mom now. Anywho, it was a fun trip and I’m glad Charlotte’s first venture into a grocery store was one filled with healthy foods.
I’ve gotten all this healthy food but I know my body needs an all around healthy lifestyle, so it is my goal to start exercising again this coming Monday. I hate to begin exercising; there are so many ways to put it off. But I know if I just get off my duff and do it I will feel worlds better. Plus, my every waking (and some times sleeping) moment revolves around Charlotte. I am thinking it might be good to have 30 minutes that are spent on something else. So my plan is to feed Charlotte in the morning, hopefully around 6am or so, hand her off to Ben, and hit the treadmill and not look back until my 30-45min are done. I’ve also been thinking it might be nice to take the yoga class at Shacky’s once a week. Any encouragement or advice on working out while breastfeeding would be greatly appreciated.
Today, Ben is off to watch Auburn play Georgia and I’m here at the house with a baby who has FINALLY gone to sleep…hoping it will last longer than 30min. If she is doing OK we are going walk over to the Rhodes house to watch the game and hang out with Elizabeth, Ann, and the kids. I can’t wait. Being a mom can be very isolating and girl time seems like sheer bliss right now.
………….Geez, she just started crying again………………….
Monday November 15
Well I didn’t want to post the above without telling you the best news of the week and I haven’t had time to do it till now. My brother Henry and sister-in-law Dana gave birth to a beautiful baby girl name Amelia Estes Little. She is going to be called Lia which I think already fits her. She is absolutely beautiful and I cannot wait to meet her!! Really, I have debated driving down to Covington a few times already. Becoming an Aunt and a Mom all in one year is a pretty fabulous thing. We are headed down to Covington for Thanksgiving so I guess I’ll have to wait a bit longer before I get to meet wonderful Lia. I’m SO excited that Charlotte already has a friend. Lia is sure to be one special girl because she has two very special parents whom I love dearly. CONGRATULATIONS HENRY AND DANA!!!!!! GIVE LIA LOTS OF KISSES FROM HER FAMILY IN THE BORO!!!!!
Well, Part TWO is coming much later than I anticipated. As you can surmise, the week has gotten away from me…as usual. Last blog I filled you in on Charlotte’s current medical prognosis. But for today I’d like to forget for a moment about Charlotte’s medical issues and discuss just normal life.
I know I mentioned that I was going to Covington for awhile, it ended up being for about a week. It was wonderful to be home, to laugh with my family, to let my dad hog Charlotte, to talk babies with my sister-in-law, to have SO MUCH help from my mom, and to be surrounded by an abundance of love and fellowship. The highlights of the trip were Saturday night football, delicious meals by my mom, and a delightful photo session with my friend Meghan. Meghan is an excellent photographer, and I had asked her if she wouldn’t mind doing some photos with Charlotte and me. It was so much fun. I actually took a shower AND dried my hair AND put on make-up…amazing I know. And I think I managed to find some clothes without spit-up or poop on them….for Charlotte and for me :) We had a ball hanging out and taking pictures. The first result is posted here: http://loquaciouslady.com/2010/11/08/have-i-told-you-lately-that-youre-barbie/\ on her blog. I love the picture but please ignore all her compliments about me.
It was hard to head home, but I was excited to get back to my husband. First we stopped in Birmingham for one last doctor’s appointment and to have an impromptu Seibels girls get together. I had SUCH a blast visiting with all my cousins. Margaret, I LOVED hearing the wedding details. You look stunning in the dress but of course you would look stunning in any dress. I just hope Barnes knows what a lucky man he is!!! I’ve counted, and we had a total of 14 girls in the house at one time. Did I mention that the Seibels can only produce girls…really great looking girls J It was so much fun. The next morning we headed to Children’s and then back to Scottsboro.
Charlotte was able to hang out with more family on Sunday. We took a day trip to Murfreesboro with Mike and Mary. First we had a delicious lunch with Mimi, Dada, and Aunt Susan. Charlotte really took a liking to Mimi, but who wouldn’t?! Next we headed to visit Freda which was great, but Becky and Carly were dearly missed. And finally we had a quick visit with KayKay, Bob, Donny and Shelia. Then we hit the road because Charlotte was getting pretty fussy. I feel extremely blessed that my sweet little girl is surrounded by a loving family.
Monday, Ben accompanied Charlotte and me to the Pediatrician for her first round of shots which she handled pretty well. Then we headed to Earth Fare. You know, things have changed when a grocery store gets you more excited than a mall! I love that store though. It makes me feel good. All the fresh, organic foods with nothing over processed or pumped with who knows what. They have so many delicious foods and options that I would NEVER find in Scottsboro. Let’s get real here; I can’t even get organic apples in Scottsboro much less quinoa or Turkish lentils. I stocked up on apples since my parents filled me in on the fact that they are one of the worst for pesticides. I also got organic eggs: say no to hormones. And I even found organic Beef and Turkey jerky which is not only delicious but a great source of the protein I dearly need. Our cart filled up rather quickly. I could have spent hours in there, but after being extremely good Charlotte began to fuss, so we decided to hit the road. I love Earth Fare till I get to the check out line and see the damage I have done to our bank account with my healthy fare. Why does healthy food have to cost an arm and a leg?!!! Here is the really crazy thing though: these days I’d rather buy organic chicken than new shoes!!!!! What is wrong with me….I guess I’m really a mom now. Anywho, it was a fun trip and I’m glad Charlotte’s first venture into a grocery store was one filled with healthy foods.
I’ve gotten all this healthy food but I know my body needs an all around healthy lifestyle, so it is my goal to start exercising again this coming Monday. I hate to begin exercising; there are so many ways to put it off. But I know if I just get off my duff and do it I will feel worlds better. Plus, my every waking (and some times sleeping) moment revolves around Charlotte. I am thinking it might be good to have 30 minutes that are spent on something else. So my plan is to feed Charlotte in the morning, hopefully around 6am or so, hand her off to Ben, and hit the treadmill and not look back until my 30-45min are done. I’ve also been thinking it might be nice to take the yoga class at Shacky’s once a week. Any encouragement or advice on working out while breastfeeding would be greatly appreciated.
Today, Ben is off to watch Auburn play Georgia and I’m here at the house with a baby who has FINALLY gone to sleep…hoping it will last longer than 30min. If she is doing OK we are going walk over to the Rhodes house to watch the game and hang out with Elizabeth, Ann, and the kids. I can’t wait. Being a mom can be very isolating and girl time seems like sheer bliss right now.
………….Geez, she just started crying again………………….
Monday November 15
Well I didn’t want to post the above without telling you the best news of the week and I haven’t had time to do it till now. My brother Henry and sister-in-law Dana gave birth to a beautiful baby girl name Amelia Estes Little. She is going to be called Lia which I think already fits her. She is absolutely beautiful and I cannot wait to meet her!! Really, I have debated driving down to Covington a few times already. Becoming an Aunt and a Mom all in one year is a pretty fabulous thing. We are headed down to Covington for Thanksgiving so I guess I’ll have to wait a bit longer before I get to meet wonderful Lia. I’m SO excited that Charlotte already has a friend. Lia is sure to be one special girl because she has two very special parents whom I love dearly. CONGRATULATIONS HENRY AND DANA!!!!!! GIVE LIA LOTS OF KISSES FROM HER FAMILY IN THE BORO!!!!!
Friday, November 5, 2010
"Light up your face with gladness/ Hide every trace of sadness/ Although a tear may be ever so near/ That's the time you must keep on trying"
I have decided to write my next blog in two parts, because I doubt that Charlotte’s nap or my brain will last long enough to get all my thoughts into one blog.
PART ONE: more on Charlotte’s prognosis
I am not sure if I have told you all this or not…sorry if I am repeating myself. When we discovered that Charlotte had Spina Bifida, the ultra sound revealed a lesion that was thought to be 1cm by 1cm and in the sacral region. It was the most severe form of SB but in the “best” location. To repeat information that I mentioned in earlier blogs; the doctors told us that with a sacral lesion her bowel and bladder would be most affected and the feet would possibly be involved. After Charlotte’s birth, they discovered that the lesion was four times the size they had thought. It sounds a bit shocking, but we knew the ultrasounds were approximations, and many things would be unknown till she was born.
We had our first SB Clinic this past Wednesday. It was a multidisciplinary clinic, meaning we met with most all the doctors that will be involved in Charlotte’s care. Our first appointment was a hip ultrasound, because when Charlotte was discharged the orthopedic doctor saw slight dysplasia in the left hip. We met with the OP doctor who told us her hips looked great. I know I’ve mentioned earlier that she was keeping her feet flexed upward. I thought it was much like her thumbs in that she just had tight shin muscles that needed to be stretched out. This is not the case. The OP doctor explained that Charlotte’s lesion was actually lower lumbar; meaning the nerves that go to her calves are not functioning. He assured us that she would walk but that she would need braces on her shins to keep from rocking forward. He also said there seemed to be a lack of lower back muscle which means she may need canes that attach to the wrist to keep her steady. But how much back muscle she has is still hard to determine since she is so young. He wanted us to continue daily stretching out her ankles so that they do not get into a locked position. They do not like to brace the ankles until the child is starting to pull up because they feel that braces may impede with normal baby development. I want to clarify that these are life long needs. In other words, she will be wearing braces for the rest of her life because it is not that the muscles need strengthening but rather that the muscles are not functioning due to lack of nerve activity.
We also met with neurology who said she was doing very well. But they want us to keep a close watch, because shunt malfunction rate is over 50 percent in the first year. We also discovered that if the shunt malfunctions, it typically takes several replacement surgeries before a new shunt will function properly. Scary to hear but I continue to pray for strength and peace from all these fears. We meet with several other people and then last with the rehabilitation doctor. The rehab doctor agreed with the OP doctor that Charlotte should be able to walk with braces. He did warn us not to go by traditional child development. Charlotte would most likely take longer to walk than the average child (maybe around 2) and would do things at her own pace. It was a long day, and I’m glad that we get a break for 6 months till the next clinic.
Yesterday (Thursday) we went back to Children’s to meet with our Urology doctor and to test Charlotte’s hearing since she failed the first test when she was in the NICU. The Urology test was to assess bladder function and make sure she was not retaining urine, which can be detrimental to the kidneys. Basically, a catheter is inserted in both the anus and urethra. The bladder is then filled with a special liquid and x-rays are taken. The doctor told us that Charlotte can hold an appropriate amount of liquid, and she is not currently retaining. She actually leaks both urine and stool pretty constantly. With her, there is no such thing as a clean diaper but a less dirty diaper. This test is done yearly unless she starts to have urinary tract infections. I honestly thought the test would be miserable, but she handled it all great. In fact, she didn’t flinch. My dad and I have been wondering how much feeling she has at her rectal and urinary openings. Other factors and the test have made it evident that she does not have sensation in these areas, much like her feet. This means I must be vigilant about watching and assessing her because she will not be able to feel if she has issues in these areas. It is like her feet in that if her shoes are too small or she has a splinter she will not know it. After urology we had the hearing screen. It lasted almost two hours because Charlotte had to be totally still with things stuck all over her head and in her ears. She did not like it at all. It was a miserable process, but I’m happy to say that her hearing is just fine.
SB is a discovery. No doctor can tell you exactly how your child will function. We will have to wait to see, and waiting is hard and scary. When we were at the hospital, I saw a beautiful girl around five who had SB. The defect was most likely in a similar area as Charlotte’s, because she could walk but was wearing braces. It was a comfort and hard to see her all at one time. I saw some of my daughter’s possible future. I love Charlotte beyond measure and think she is perfect. I will love her no matter what. I am fully aware that she is blessed. She will walk, she currently does not have to have catheters, she has a huge support system, and she has a loving heavenly Father. But I grieve too. I can’t help but be a little sad that she won’t be able to take ballet, that at some point in her life some one ignorant will probably make fun of her braces, that she will have to work at things most children can do easily, that cartwheels will probably not be in her future. I try not to think about if she will be able to dance at her own wedding. I know that she will surprise me in so many ways. She already has. Her resilience and sweetness take my breath away. I know we will find other hobbies and she will excel in her own way. But for a moment I have to shed some tears.
I am fully aware that God works in miraculous ways. That any child is born is a miracle to me. I would be eternally grateful if God chose to fully heal Charlotte of all her issues. However, I think my role as her mother is to accept the things God has placed in my life. He has given me this wonderful, all together perfect angel baby to care for. My daily bread is Charlotte with Spina Bifida. I am asking Him for wisdom, patience and strength on raising her just as she is. The miracle that I am daily praying for is the battle that Charlotte will one day have. Charlotte probably will not notice that much is “wrong” with her for awhile. But one day she will have the knowledge that in the eyes of medicine she is not whole and perfect, in the eyes of the world she functions differently. She will have a choice to make. She can rail against this body God has given her and think He loves her less because of it. Or, she can choose to accept her body as is and realize that God created her just as He wanted her: “I will praise you for I am fearfully and wonderfully made.” It will not be an easy thing for a teenager in a world so bent on bodily perfection to do, but it is the miracle I pray for. I pray that her struggle will make her know Christ more fully, and that He will use her to advance His kingdom in mighty ways. Of course, I will be beyond ecstatic if I wake up tomorrow and Charlotte no longer has SB. But the miracle that I am seeking for my daughter is acceptance and heart that loves and seeks to glorify the King of kings.
PART ONE: more on Charlotte’s prognosis
I am not sure if I have told you all this or not…sorry if I am repeating myself. When we discovered that Charlotte had Spina Bifida, the ultra sound revealed a lesion that was thought to be 1cm by 1cm and in the sacral region. It was the most severe form of SB but in the “best” location. To repeat information that I mentioned in earlier blogs; the doctors told us that with a sacral lesion her bowel and bladder would be most affected and the feet would possibly be involved. After Charlotte’s birth, they discovered that the lesion was four times the size they had thought. It sounds a bit shocking, but we knew the ultrasounds were approximations, and many things would be unknown till she was born.
We had our first SB Clinic this past Wednesday. It was a multidisciplinary clinic, meaning we met with most all the doctors that will be involved in Charlotte’s care. Our first appointment was a hip ultrasound, because when Charlotte was discharged the orthopedic doctor saw slight dysplasia in the left hip. We met with the OP doctor who told us her hips looked great. I know I’ve mentioned earlier that she was keeping her feet flexed upward. I thought it was much like her thumbs in that she just had tight shin muscles that needed to be stretched out. This is not the case. The OP doctor explained that Charlotte’s lesion was actually lower lumbar; meaning the nerves that go to her calves are not functioning. He assured us that she would walk but that she would need braces on her shins to keep from rocking forward. He also said there seemed to be a lack of lower back muscle which means she may need canes that attach to the wrist to keep her steady. But how much back muscle she has is still hard to determine since she is so young. He wanted us to continue daily stretching out her ankles so that they do not get into a locked position. They do not like to brace the ankles until the child is starting to pull up because they feel that braces may impede with normal baby development. I want to clarify that these are life long needs. In other words, she will be wearing braces for the rest of her life because it is not that the muscles need strengthening but rather that the muscles are not functioning due to lack of nerve activity.
We also met with neurology who said she was doing very well. But they want us to keep a close watch, because shunt malfunction rate is over 50 percent in the first year. We also discovered that if the shunt malfunctions, it typically takes several replacement surgeries before a new shunt will function properly. Scary to hear but I continue to pray for strength and peace from all these fears. We meet with several other people and then last with the rehabilitation doctor. The rehab doctor agreed with the OP doctor that Charlotte should be able to walk with braces. He did warn us not to go by traditional child development. Charlotte would most likely take longer to walk than the average child (maybe around 2) and would do things at her own pace. It was a long day, and I’m glad that we get a break for 6 months till the next clinic.
Yesterday (Thursday) we went back to Children’s to meet with our Urology doctor and to test Charlotte’s hearing since she failed the first test when she was in the NICU. The Urology test was to assess bladder function and make sure she was not retaining urine, which can be detrimental to the kidneys. Basically, a catheter is inserted in both the anus and urethra. The bladder is then filled with a special liquid and x-rays are taken. The doctor told us that Charlotte can hold an appropriate amount of liquid, and she is not currently retaining. She actually leaks both urine and stool pretty constantly. With her, there is no such thing as a clean diaper but a less dirty diaper. This test is done yearly unless she starts to have urinary tract infections. I honestly thought the test would be miserable, but she handled it all great. In fact, she didn’t flinch. My dad and I have been wondering how much feeling she has at her rectal and urinary openings. Other factors and the test have made it evident that she does not have sensation in these areas, much like her feet. This means I must be vigilant about watching and assessing her because she will not be able to feel if she has issues in these areas. It is like her feet in that if her shoes are too small or she has a splinter she will not know it. After urology we had the hearing screen. It lasted almost two hours because Charlotte had to be totally still with things stuck all over her head and in her ears. She did not like it at all. It was a miserable process, but I’m happy to say that her hearing is just fine.
SB is a discovery. No doctor can tell you exactly how your child will function. We will have to wait to see, and waiting is hard and scary. When we were at the hospital, I saw a beautiful girl around five who had SB. The defect was most likely in a similar area as Charlotte’s, because she could walk but was wearing braces. It was a comfort and hard to see her all at one time. I saw some of my daughter’s possible future. I love Charlotte beyond measure and think she is perfect. I will love her no matter what. I am fully aware that she is blessed. She will walk, she currently does not have to have catheters, she has a huge support system, and she has a loving heavenly Father. But I grieve too. I can’t help but be a little sad that she won’t be able to take ballet, that at some point in her life some one ignorant will probably make fun of her braces, that she will have to work at things most children can do easily, that cartwheels will probably not be in her future. I try not to think about if she will be able to dance at her own wedding. I know that she will surprise me in so many ways. She already has. Her resilience and sweetness take my breath away. I know we will find other hobbies and she will excel in her own way. But for a moment I have to shed some tears.
I am fully aware that God works in miraculous ways. That any child is born is a miracle to me. I would be eternally grateful if God chose to fully heal Charlotte of all her issues. However, I think my role as her mother is to accept the things God has placed in my life. He has given me this wonderful, all together perfect angel baby to care for. My daily bread is Charlotte with Spina Bifida. I am asking Him for wisdom, patience and strength on raising her just as she is. The miracle that I am daily praying for is the battle that Charlotte will one day have. Charlotte probably will not notice that much is “wrong” with her for awhile. But one day she will have the knowledge that in the eyes of medicine she is not whole and perfect, in the eyes of the world she functions differently. She will have a choice to make. She can rail against this body God has given her and think He loves her less because of it. Or, she can choose to accept her body as is and realize that God created her just as He wanted her: “I will praise you for I am fearfully and wonderfully made.” It will not be an easy thing for a teenager in a world so bent on bodily perfection to do, but it is the miracle I pray for. I pray that her struggle will make her know Christ more fully, and that He will use her to advance His kingdom in mighty ways. Of course, I will be beyond ecstatic if I wake up tomorrow and Charlotte no longer has SB. But the miracle that I am seeking for my daughter is acceptance and heart that loves and seeks to glorify the King of kings.
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