Nothing wrong? Really? Those were my thoughts and words at Madison's 1 year check-up at Spina Bifida Clinic at Vanderbilt on Monday, 7/25. Other than our post entitled "Our Miracle has Arrived," the post from the day Madison was born, I don't think we've had a better title than the one for this post! We often don't hear that Madison is doing just fine and that there's nothing to be concerned about. Typically her reports are negative in nature, gloom and doom, you know. So, to get that response from all of her doctors almost made me skip while I pushed Madison's stroller out of the hospital to the car that day. Here's what made me think we were going to get bad news at Clinic...
As you might have read from my last post, Madison has had some weight gain issues lately. Her appetite has decreased significantly and her little body isn't growing like it should. Her pediatrician has been concerned and has attributed the weight loss to a persistent urinary tract infection (UTI) that didn't get fully treated. Since her June 27th check-up with the pediatrician, Madison has had 3 urine cultures done, all which indicated high levels of bacteria present in her urine. Pretty gross, I know, but Dustin and I have continue to be mystified as to how Madison could keep functioning so well, acting so happy, if she has a UTI. Now, is when I tell you that Madison doesn't have a UTI and urologically speaking, there is nothing wrong with her. Madison's urologists said that her cultures reveal that bacteria in Madison's body has colonized, which simply means, excess bacteria has formed a little gang in her urinary tract; that's why her urine cultures continue to show high levels, consistent with infection. It is likely that the in/out cathing we had to do on Madison when she was a newborn is what introduced an excess amount of bacteria that multiplied and grew. However, since Madison has not had any symptoms of infection, she does not have a UTI; she just has higher than normal amounts of bacteria in her system. She will always have the bacteria present but it does not pose a threat to her bladder or kidneys. In fact, her urologist said after looking at Madison's bladder/kidney ultrasound on Monday, that Madison has the bladder and kidneys of a baby without Spina Bifida! How amazing is that?!?!? So, to re-iterate...there is NOTHING WRONG with our sweet girl's urological system! God has removed this obstacle for Madison and restored her health!
Now, that still leaves the appetite and weight gain issue. At Clinic, they managed to work in a consultation with the dietitian, who is wonderful and gave us news we weren't expecting to hear about Madison...there is NOTHING WRONG! I sat there for a few minutes trying to reason through that because all I could think of was how Madison wouldn't eat, isn't gaining weight, and how that doesn't sound like there's nothing wrong. After answering a billion questions and telling the dietitian about Madison's eating habits, she explained to me what IS going on and her answer made me laugh. What it all boils down to is Madison is a control freak when it comes to meal time. You probably chuckled a little too just then because you know that this would be just one more trait in a long list of how Madison is a carbon copy of her mommy. But basically, Madison does not like it when we shove a spoon of food in her mouth, that's why she was holding it in her mouth, refusing to swallow, and then we'd have to dig it out and usually get bitten in the process. The dietitian said Madison wants to be able to decide for herself IF she wants to eat the food and WHEN she eats it. This is why she has developed a super close relationship with her sippy cup; she can control when she puts it in her mouth and how much she drinks. Plus, milk is a consistent taste as opposed to all the flavors of big people food we were exposing her to and she can still keep her eye on her surroundings when she drinks. Eating involves her using her taste buds and having to focus which doesn't appeal to her highness. There is nothing wrong with Madison physically that is preventing her from eating or growing, she just is super particular on how she goes about feeding herself. The dietitian recommended we try putting blobs of food on Madison's high chair try, no matter how messy, and just leave them there for her to experiment with and get familiar with. When, and only when SHE'S ready, she'll pick them up and feed herself and if she continues to do so, that's our cue she likes it and will be receptive to us feeding her. And...it has worked like a charm. We've done exactly what the dietitian suggested and Madison has eaten better in the last week than she has in the last month. She has even gone so far as to try and grab the spoon out of my hand to try and feed herself with it. We have been decreasing the amount of liquids we give Madison because she developed a preference to drink rather than eat her calories and that isn't healthy for her. So, we're gonna continue to work on her with this and even though I'm gonna have to go back to making Madison's food, per the dietitian's recommendation, we will do whatever is necessary to help Miss Priss get adjusted to meal time and start gaining weight again. But let's be real...the moral of the story here is that we have one headstrong little girl on our hands who is gonna keep us on our toes.
It is so wonderful to be able to report that Madison is doing so well and that her doctors truly have no concerns for her at this time. Her therapist continues to marvel over Madison's progress and her neurologist remarked that her head circumference is perfect, indicating her shunt is functioning EXACTLY as it should be. Madison, in all her funny, quirky, prissy, sweet, and precious ways continues to be a living picture of God's grace and miraculous power. Not everyone can boast they've witnessed a miracle but we can. Our miracle sleeps in the back bedroom at our house, loves sweet potatoes, and wears the most beautiful smile. She has a mommy and daddy that think she hung the moon and a Heavenly Father that loves her even more.
I never forget that so many of you who read our blog pray for Madison, and will keep praying for her for a long time to come. I just hope what you hear and see that happens in Madison's life, every victory she has over her Spina Bifida, every stride she makes in her development, encourages you that your prayers are heard and that we serve a Living God that answers our prayers and works miracles. The Lord has known all along there's nothing wrong with Madison; it just takes us a little bit longer to understand.
Thanks for reading! We just wanna keep sharing about God's blessings in the life of our family.
Be blessed,
~Mandy
Saturday, July 30, 2011
Wednesday, July 6, 2011
Madison's Therapeutic Devices
Just thought I'd post a few pics of Madison doing some of her therapy. She has an excellent physical therapit, Christine Taylor of Theraplay, who works hard to help whip Madison into shape.
This is Madison in her walker. She took her first assisted steps on June 22, 2011. One has been ordered for Madison for us to have for home use. I better start padding the furniture. I think she'll be a wild driver like her Daddy!
Madison also has a stander. This is to help her learn what it's like to put weight on her feet. She has to stand it 2 times a day for an hour each time. It has wheels so we can push around the house, which she loves, and has a nice play area for toys on top.
This is a great pic of how the stander works. You can see that she gets strapped in at two points and you can also see that Madison got tired of standing and decided to nap standing up.
I hate that the rest of Madison's life will likely involve some sort of contraption or device. But I'm so glad equipment like this exists to help her. And I'm so blessed that we have a therapist like Christine that recognizes how truly special our girl is and works so hard to make her the best Madison she can be. She is going to do amazing things, people. I just know it!
Ironically, it's time to get Madison out of her stander for the night. Gotta go!
~Mandy
This is Madison in her walker. She took her first assisted steps on June 22, 2011. One has been ordered for Madison for us to have for home use. I better start padding the furniture. I think she'll be a wild driver like her Daddy! 
Madison also has a stander. This is to help her learn what it's like to put weight on her feet. She has to stand it 2 times a day for an hour each time. It has wheels so we can push around the house, which she loves, and has a nice play area for toys on top.
This is a great pic of how the stander works. You can see that she gets strapped in at two points and you can also see that Madison got tired of standing and decided to nap standing up.I hate that the rest of Madison's life will likely involve some sort of contraption or device. But I'm so glad equipment like this exists to help her. And I'm so blessed that we have a therapist like Christine that recognizes how truly special our girl is and works so hard to make her the best Madison she can be. She is going to do amazing things, people. I just know it!
Ironically, it's time to get Madison out of her stander for the night. Gotta go!
~Mandy
Wednesday, June 29, 2011
Her Health in Question- Now We Have an Answer
This post is meant to serve as an update on Madison from recent events at her 1 year check-up with her Pediatrician.
Madison's 1 year check-up was on Monday, 6/27 and I'll confess that I just knew in my heart I was gonna get bad news about Madison's weight at that visit. Call it my mother's intuition or my ESP, but I had a feeling her weight was not going to be satisfactory. For about a month now Madison's appetite has slowly diminished and she has been very cranky at meal time. I was not bothered by this at first because she had two teeth come in within a week of each other so I figured the slowdown in appetite was because of that. But lately she's grown increasingly finicky over food and really doesn't eat much at all. But she loves her sippy cup with some milk or juice in it. Back to the doctor's visit. To my shock and horror, when I put Madison on the scale on Monday she weighed only 20 pounds and 6 ounces- that was 3 ounces less than she weighed 3 MONTHS AGO at her 9 month check-up. She had not gained a SINGLE ounce in a 3 month time period and had lost a few ounces at that. The pediatrician's growth charts indicate Madison should weigh upwards of 25 pounds by this point and be closer to 31 inches long- she measured 29 inches. So, yet again Madison has a deficit: 5 pounds and 3 inches.
As I suspected, the pediatrician was a little freaked out by the lack of growth and blurted out words I was not expecting to hear about Madison. She said, "This is a case of failure to thrive in childhood." Now, I fully embrace that I tend to be over-reactive and admit that every little thing freaks me out about Madison's health but give me a break!!!! She just said my child wasn't thriving!!!! I temporarily froze in my chair when I heard those words. Because I am not a medical professional and really had no idea what that meant my mind began racing with horrible thoughts. It was not a pretty picture of what was gonna happen to my poor little girl if she didn't grow. But the doctor quickly moved on and I struggled to snap out of my panicked mental state to listen to the rest of her report. She suspected Madison might have another urinary tract infection which would result in a decreased appetite and before I knew it she was giving me instructions to report to the hospital for bloodwork. Before we could go, the doctor wanted me to cath Madison for a urine sample they could test in house. Insert funny story #1 here: as previously mentioned I had to put Madison on the scale to weigh her at the beginning of our visit. What I didn't mention was that when it was time to weigh Madison, she took THE world's largest pee-pee while I was trying to take her diaper off and get her naked self on the scale. Pee was everywhere followed by a poop. The nurse stood there for 5 minutes waiting on Madison to finish her business so we could weigh her- seemed like an eternity. Because Madison had so thoroughly emptied her bladder during the weigh-in incident, I retrieved virtually nothing for a urine sample when I cathed her.
At this point it is important for me to insert that Madison developed a horrible urinary tract infection in April this year after a battle with a very nasty gastrointestinal bug. She quit eating all together, ran a fever, turned white as a ghost, had constant vomiting and diarhhea, and was lethargic for days. Scared us to death. As a result, we took a lovely trip (insert sarcastic tone here) to the ER for bloodwork and IV antibiotics. But the infection cleared and Madison became Madison again.
Back to the doctor's visit. After the doctor's check-up and diagnoses, the nurse returned with our hospital orders and the vile of urine for me to take to the hospital for testing. She said that because there was so little urine, they couldn't do a dip-stick test in-house and that the hospital would have to do lab work on it.
On my quick drive to the hospital I called Da-Da to inform him of our trip to CRMC and of course, began having flashbacks to our visit in April and how sick Madison got from that UTI. We arrived and went to the lab with our orders and they began working on Madison. I was asked for the urine sample and now I insert funny story #2: upon handing over the bag with Madison's urine sample the lab tech exclaimed, "There's nothing in here!" To which I thought, of course there is, they gave it to me at the pediatrician's office and put it in this special bag for me to carry over here- why would they send it with me if there wasn't anything in there? But she kept on commenting on the empty nature of the vile. So, I go look at it while she's holding it and sure enough- there's no urine sample in there. I immediately started feeling through Madison's diaper bag to see if the sample had spilled inside or if there was a hole in the transport bag that allowed it to leak out. But alas, there was no explanation for the non-existence of the pee pee. I'm sure to the lab techs it seemed odd because I was perplexed myself and began trying to offer explanations for why there was no sample. The more I tried to explain to the lab techs the more curious they got. I thought to myself- do they think I stole my daughter's pee? What would I have done with it? Do they think I dumped it out? Do they think I would knowingly bring an empty vile here for testing? I don't know what they were thinking but I knew the pee pee was gone and there was none for testing. What a mystery.
Anyways, Dustin and I suggested we cath her again to see if we could get another sample if they could provide us with a cath kit. Thankfully, I had filled up Madison's sippy with juice before we left that morning and had been giving her some throughout the morning to combat her boredom and fussiness during the doctor's visit and immunizations. That was the smartest thing I did all day because Madison was full to the brim and her second cath of the day was much more successful in producing a sample, so much so we almost had another incident like the one I mentioned earlier. After the cath and drawing Madison's blood we were dismissed and sent home to wait for two days on results.
That brings us to today, 6/29. The pediatrician's office called me this morning and reported that all bloodwork was normal (praise the Lord!) but that Madison does indeed have another urinary tract infection. Which is shocking to me because for the past two months since her last one, Madison has been the happiest, funniest, most care-free baby ever, a stark contrast to her behavior when she got her first UTI in April. She's had NO signs of illness: no fever, no vomitting/diarhhea, no lethargy, no paleness- none of the symptom that accompanied the UTI before. The decrease in appetite is the only thing we've noticed. But her doctor believes the previous UTI may not have totally cleared and has been continually aggravating Madison's little body to the point it has suppressed her appetite, thus resulting in the lack of weight gain. And let me go back to that "failure to thrive" dianosis for a minute. If you've never heard of it, like I hadn't, it's a term given to children who cease to gain weight or grow in length for a period of 3 consecutive months or drop 2-3% below the healthy growth curve, both of which Madison has done. It can be serious if left untreated, affecting physical, cognitive, and social development but the doctor believes this persistent UTI is the only thing affecting Madison and that once finally treated, she'll be able to pack on the pounds and leave that awful diagnosis behind.
Within an hour of receiving word from the pediatrician about test results, Madison's urologist from Vanderbilt called me at home. They had already received word of the urine culture/results and were calling to check on her (gosh, I love that place) and say they would do some follow-up testing when we go to Spina Bifida clinic in July.
So, what have I learned from this latest scare with Madison:
1. Pee happens. Just be prepared with lots of wet wipes and disposable pads.
2. Juice in the sippy can be a life-saver- I'll never leave home without some from now on.
3. It's never gonna get easier to see my precious girl get poked and prodded by medical professionals. I wanted to tear her away from them while they were drawing her blood. She cried as if they were literaly drawing the life out of her.
4. Pharmaceutical companies are making serious bank off the Rawls family. Madison's got a new antibotic for the UTI and I'm sure she'll get a new prescription regimen from her urologist when we visit Vanderbilt next month.
5. Don't jump to conclusions about medical diagnoses when you hear them. Let the doctor explain them in detail, ask questions if you don't understand, and stay off the internet unless reading from a medical facility's site such as Vanderbilt, John Hopkins, etc.
6. UTIs are probably going to plague Madison for the rest of her life due to the Spina Bifida and its affect on her bladder, kidneys, and bowels. We likely will make many more trips to the hospital for instances like this. Therefore, please continue to pray for her daily healing and growth.
We are hopeful this infection will be cleared quickly and Madison can begin to put on weight and grow like she's supposed to. We have a couple of follow-up appointments scheduled over the next month so I'll be sure to update the blog with her progress in this situation.
As always, thank you for the prayers you say for our family and our sweet Madison. We are continually encouraged by them and praise the Lord for you for offering them- Phil. 1:3.
Love,
~Mandy
Madison's 1 year check-up was on Monday, 6/27 and I'll confess that I just knew in my heart I was gonna get bad news about Madison's weight at that visit. Call it my mother's intuition or my ESP, but I had a feeling her weight was not going to be satisfactory. For about a month now Madison's appetite has slowly diminished and she has been very cranky at meal time. I was not bothered by this at first because she had two teeth come in within a week of each other so I figured the slowdown in appetite was because of that. But lately she's grown increasingly finicky over food and really doesn't eat much at all. But she loves her sippy cup with some milk or juice in it. Back to the doctor's visit. To my shock and horror, when I put Madison on the scale on Monday she weighed only 20 pounds and 6 ounces- that was 3 ounces less than she weighed 3 MONTHS AGO at her 9 month check-up. She had not gained a SINGLE ounce in a 3 month time period and had lost a few ounces at that. The pediatrician's growth charts indicate Madison should weigh upwards of 25 pounds by this point and be closer to 31 inches long- she measured 29 inches. So, yet again Madison has a deficit: 5 pounds and 3 inches.
As I suspected, the pediatrician was a little freaked out by the lack of growth and blurted out words I was not expecting to hear about Madison. She said, "This is a case of failure to thrive in childhood." Now, I fully embrace that I tend to be over-reactive and admit that every little thing freaks me out about Madison's health but give me a break!!!! She just said my child wasn't thriving!!!! I temporarily froze in my chair when I heard those words. Because I am not a medical professional and really had no idea what that meant my mind began racing with horrible thoughts. It was not a pretty picture of what was gonna happen to my poor little girl if she didn't grow. But the doctor quickly moved on and I struggled to snap out of my panicked mental state to listen to the rest of her report. She suspected Madison might have another urinary tract infection which would result in a decreased appetite and before I knew it she was giving me instructions to report to the hospital for bloodwork. Before we could go, the doctor wanted me to cath Madison for a urine sample they could test in house. Insert funny story #1 here: as previously mentioned I had to put Madison on the scale to weigh her at the beginning of our visit. What I didn't mention was that when it was time to weigh Madison, she took THE world's largest pee-pee while I was trying to take her diaper off and get her naked self on the scale. Pee was everywhere followed by a poop. The nurse stood there for 5 minutes waiting on Madison to finish her business so we could weigh her- seemed like an eternity. Because Madison had so thoroughly emptied her bladder during the weigh-in incident, I retrieved virtually nothing for a urine sample when I cathed her.
At this point it is important for me to insert that Madison developed a horrible urinary tract infection in April this year after a battle with a very nasty gastrointestinal bug. She quit eating all together, ran a fever, turned white as a ghost, had constant vomiting and diarhhea, and was lethargic for days. Scared us to death. As a result, we took a lovely trip (insert sarcastic tone here) to the ER for bloodwork and IV antibiotics. But the infection cleared and Madison became Madison again.
Back to the doctor's visit. After the doctor's check-up and diagnoses, the nurse returned with our hospital orders and the vile of urine for me to take to the hospital for testing. She said that because there was so little urine, they couldn't do a dip-stick test in-house and that the hospital would have to do lab work on it.
On my quick drive to the hospital I called Da-Da to inform him of our trip to CRMC and of course, began having flashbacks to our visit in April and how sick Madison got from that UTI. We arrived and went to the lab with our orders and they began working on Madison. I was asked for the urine sample and now I insert funny story #2: upon handing over the bag with Madison's urine sample the lab tech exclaimed, "There's nothing in here!" To which I thought, of course there is, they gave it to me at the pediatrician's office and put it in this special bag for me to carry over here- why would they send it with me if there wasn't anything in there? But she kept on commenting on the empty nature of the vile. So, I go look at it while she's holding it and sure enough- there's no urine sample in there. I immediately started feeling through Madison's diaper bag to see if the sample had spilled inside or if there was a hole in the transport bag that allowed it to leak out. But alas, there was no explanation for the non-existence of the pee pee. I'm sure to the lab techs it seemed odd because I was perplexed myself and began trying to offer explanations for why there was no sample. The more I tried to explain to the lab techs the more curious they got. I thought to myself- do they think I stole my daughter's pee? What would I have done with it? Do they think I dumped it out? Do they think I would knowingly bring an empty vile here for testing? I don't know what they were thinking but I knew the pee pee was gone and there was none for testing. What a mystery.
Anyways, Dustin and I suggested we cath her again to see if we could get another sample if they could provide us with a cath kit. Thankfully, I had filled up Madison's sippy with juice before we left that morning and had been giving her some throughout the morning to combat her boredom and fussiness during the doctor's visit and immunizations. That was the smartest thing I did all day because Madison was full to the brim and her second cath of the day was much more successful in producing a sample, so much so we almost had another incident like the one I mentioned earlier. After the cath and drawing Madison's blood we were dismissed and sent home to wait for two days on results.
That brings us to today, 6/29. The pediatrician's office called me this morning and reported that all bloodwork was normal (praise the Lord!) but that Madison does indeed have another urinary tract infection. Which is shocking to me because for the past two months since her last one, Madison has been the happiest, funniest, most care-free baby ever, a stark contrast to her behavior when she got her first UTI in April. She's had NO signs of illness: no fever, no vomitting/diarhhea, no lethargy, no paleness- none of the symptom that accompanied the UTI before. The decrease in appetite is the only thing we've noticed. But her doctor believes the previous UTI may not have totally cleared and has been continually aggravating Madison's little body to the point it has suppressed her appetite, thus resulting in the lack of weight gain. And let me go back to that "failure to thrive" dianosis for a minute. If you've never heard of it, like I hadn't, it's a term given to children who cease to gain weight or grow in length for a period of 3 consecutive months or drop 2-3% below the healthy growth curve, both of which Madison has done. It can be serious if left untreated, affecting physical, cognitive, and social development but the doctor believes this persistent UTI is the only thing affecting Madison and that once finally treated, she'll be able to pack on the pounds and leave that awful diagnosis behind.
Within an hour of receiving word from the pediatrician about test results, Madison's urologist from Vanderbilt called me at home. They had already received word of the urine culture/results and were calling to check on her (gosh, I love that place) and say they would do some follow-up testing when we go to Spina Bifida clinic in July.
So, what have I learned from this latest scare with Madison:
1. Pee happens. Just be prepared with lots of wet wipes and disposable pads.
2. Juice in the sippy can be a life-saver- I'll never leave home without some from now on.
3. It's never gonna get easier to see my precious girl get poked and prodded by medical professionals. I wanted to tear her away from them while they were drawing her blood. She cried as if they were literaly drawing the life out of her.
4. Pharmaceutical companies are making serious bank off the Rawls family. Madison's got a new antibotic for the UTI and I'm sure she'll get a new prescription regimen from her urologist when we visit Vanderbilt next month.
5. Don't jump to conclusions about medical diagnoses when you hear them. Let the doctor explain them in detail, ask questions if you don't understand, and stay off the internet unless reading from a medical facility's site such as Vanderbilt, John Hopkins, etc.
6. UTIs are probably going to plague Madison for the rest of her life due to the Spina Bifida and its affect on her bladder, kidneys, and bowels. We likely will make many more trips to the hospital for instances like this. Therefore, please continue to pray for her daily healing and growth.
We are hopeful this infection will be cleared quickly and Madison can begin to put on weight and grow like she's supposed to. We have a couple of follow-up appointments scheduled over the next month so I'll be sure to update the blog with her progress in this situation.
As always, thank you for the prayers you say for our family and our sweet Madison. We are continually encouraged by them and praise the Lord for you for offering them- Phil. 1:3.
Love,
~Mandy
Wednesday, June 8, 2011
She's One
Well, today is the day. Madison Grace is one year old today. And to say that time has flown by this past year would be a huge understatement. As a fair warning to you the reader, I must declare my intent to vent in today’s entry. I have many thoughts, reflections, feelings, and emotions surrounding this day and the past year. Some things I say may shock you, break your heart, or make you smile. I don’t know how you will respond to my entry but I must express all these emotions I have. As with other posts of mine, it’s lengthy. Get settled. Here goes…
It is so cliché to say that it seems just like yesterday we were driving to the hospital to have Madison but that’s exactly what it seems like. In looking back on June 8, 2010, I remember such an overwhelming sense of excitement as we anticipated Madison’s arrival. Somehow I managed to push all my worries and anxiety over Madison’s Spina Bifida to the back of my mind that day. I was just too excited to be giving birth and meeting for the first time the person who was going to change my life. The countless doctors’ appointments, diagnostic tests, ultrasounds, and discussions we had endured in the nearly 7 months prior to Madison’s birth had escaped my mind that day, at least for a little while. Amazing how something we had been so fixated on and had so much anxiety over could disappear so quickly. But I woke up that morning and prepared myself to welcome our first child into the world just like any parent would, with no regard for what would happen after Madison arrived. In retrospect, I consider that a gift from God that He would allow me to experience Madison’s birth the way I did and clear my mind long enough for me to enjoy that time and have such joy and peace in my heart.
In the past twelve months since Madison’s birth, I certainly have never lost my joy over Madison or what a gift she is, but I am human and I have struggled, wrestled, and fought to overcome the intense waves of emotion I have experienced as a mother of a child with special needs. Most of my days as Madison’s mommy are great days- days when I enjoy every minute with her, go through our daily routines, and say my prayer of thanksgiving for her each night as we lay her down to sleep. Those are great days. But there are days, dark days, when I feel defeated and frustrated that we are living this life with a child the world will always label as different, disabled, special. I am ashamed to admit these days still creep up on me but I am just being honest. I will forever in my heart grieve over the challenges she will face and hardships she will have to endure. Unless you are a parent of a child with any kind of exceptional need, you will never know what it is like to spend countless hours trying to teach your child to do the simplest of tasks that everyone else’s children can do without any effort. Nor will you feel the anguish I have felt when I watch opportunities and experiences pass my child by because she cannot participate. Madison has the most beautiful smile and sweetest spirit that some will never take the time to see because they won’t see past her disability. Already in her first year, I am physically and emotionally exhausted from all the doctors’ visits, therapy sessions, and workouts I’ve had to take Madison to and put her through. I just wanted to have a child, be a mommy and that be that. But instead I’ve watched my baby endure two huge surgeries, hospitalizations, struggle to achieve the most basic of physical functions, and miss most of her developmental milestones. Madison still cannot sit without assistance nor can she crawl, pull up, or stand. What is probably more frustrating about this is that I simply have to accept it as part of her disability when I know that if it weren’t for her Spina Bifida she could do all of these things and more. It’s enough to drive me crazy if I let it. Ultimately, one of the biggest things I’m struggling with today, on Madison’s 1st birthday, is that the challenges have not diminished- they’ve just changed. I couldn’t help but notice that at 10:22 a.m. on June 8th last year, Madison was entering the world and a year later on June 8th at 10:22 a.m. she was at physical therapy strapped into a contraption designed to help her stand. I so desperately desire for Madison to make improvements and just once for her to be right on track, not behind. Just once to be challenge-free, just for a while to not have special needs. This is of course, selfish talk, but I can’t help it. Over a year after her diagnosis I’m still trying to cope with it all. Sometimes I just cry out, “Lord, why won’t you give my baby the strength to stand?!?!? Why must she be behind?!?!?” After all of these thoughts I instantly feel ashamed for complaining and guilty for not treasuring all the wonderful qualities Madison does possess. I also am immediately reminded of the verse from Jeremiah 29:11 that I know well, “For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.” God has a perfect plan for why I have endured and will continue to experience all these emotions surrounding Madison’s special needs but this verse also appeals to my motherhood. This verse also tells me that my child is so important to her Creator that He has already made plans for her special life, and that she has a future full of hope in those plans. That is so comforting to me and helps me reign in my emotions when I am tempted to wallow in the pit of despair I often create for myself.
Though I struggle to live out these plans God has set before me and my daughter, there is one thing I will never doubt nor ever forget about Madison Grace- she is a miracle. Someone once heard me refer to Madison as a miracle baby and asked me why she was. See if this qualifies as miraculous to you. Spina Bifida lesions that develop on the spine typically affect the area at the lesion and below it, usually resulting in paralysis from there down. Madison’s lesion was at the L5/S1 area of her spine, the lowest part. We were told to expect no leg movement, coordination, or feeling in Madison’s legs. Minutes after she was born and was being wheeled to the NICU, Madison’s isolette made a stop in the waiting room for family and friends to see her for the first time. They cried as they saw the blanket move when Madison kicked her little legs for the first time as if she was demonstrating that she was ok- she had overcome the doctors’ prognosis- she was not paralyzed. She also has been given a clean bill of health from her urologist who said she has the kidneys and bladder of a normal baby, unlike many children with Spina Bifida who have issues well into adulthood. For now, Madison requires no catheterization and appears to have no incontinence issues. At therapy three weeks ago, Madison pushed herself up onto her knees from a seated position, a skill which her therapist said means she has high level muscle function that is not typical of a child with Spina Bifida. All of those things combined with the fact that Madison is a sharp, extremely social, doesn’t miss a thing kind of girl demonstrates to me that God performed a miracle in Madison. She shouldn’t be able to move like she does. She’s not supposed to be off a cath schedule. She’s not supposed to be communicating and playing like she does. Spina Bifida should have created physical and cognitive challenges that Madison could not overcome. But she has. This picture below is one of my favorites we have ever taken of Madison.
It paraphrases Psalm 77:14- which is in small print under the text-which says, “You are the God who works wonders; You have made known Your strength among the peoples.” Is Madison not the epitome of this verse?!?!? Dustin and I, nor the many doctors, therapists, or special equipment are responsible for Madison’s miraculous outcomes. “Praise be to the LORD God, the God of Israel, who alone does marvelous deeds” Psalm 72:18. So, even though I struggle as I described earlier, I never forget that Madison has made tremendous progress and that God is still working on her.
Having said all of that, I must move on to what you were probably expecting to read in this birthday post- the good, fun, happy things. Side note- I am going to post her 1st birthday party pics separately from this entry. Some of you that read this blog have never met Madison and may never meet her. The rest of you know Madison but don’t get to interact with her like Mommy and Daddy do and therefore do not fully know the extent of her preciousness. The first year of Madison’s life has been nothing short of life-changing for us. We fell in love with her instantly upon meeting her and that love grows stronger every day. Her smiles at first were involuntary. Now, she beams at the sight of Mommy and Daddy and I swear there is no greater feeling than knowing I make my daughter happy. She reaches out for me and is calmed by my singing, my touch, and my embrace. She loves it when I flip my head up while drying my hair upside down so much that she squeals with delight. Madison, unfortunately, loves it when anyone drops anything or gets hurt. She laughs at the mention of the words “uh-oh” and she chuckles when she burps or toots (which she gets from her Daddy for sure!). Madison loves music and loves to be sung to which I am most happy to do for her. I’ve watched her develop quite the little personality over the past year which is partly mischievous, perfectly adorable, and particularly funny. She loves to be the center of attention, she NEVER misses a thing, and she is always on her best behavior, no kidding. The title of world’s best snuggler no longer belongs to Dustin as Madison has taken over in that area. She yanks her bows out of her hair now and her feet touch the back seat when she rides in the car- both signs that my baby is turning into a big girl. The things I love most about Madison being 1 are:
1. She can hold her own sippy cup and feed herself with it.
2. Laughter is contagious for Madison- she laughs in response to our laughter.
3. She understands the tone of my voice, whether it be stern or playful.
4. I no longer have to take her car seat into restaurants. She’s a big girl who can sit in her hook-on high chair.
5. She finds enjoyment in toys and books and it’s precious to watch.
6. Table food and whole milk have replaced homemade baby food and horribly expensive formula. AND
7. Madison loves to gab and makes all kinds of noises. I love a girl who loves to be social!
The things I love about Madison that have not changed over her first year are:
1. She wakes up happy every morning.
2. Tummy time is still Madison’s #1 enemy. It’s almost funny to watch her face turn angry when she realizes she’s being put on her tummy time mat.
3. Madison is all about routine- whether it be feeding, bathing, bedtime, etc. She has a schedule and she sticks to it like no other. She is definitely my child.
4. She still has lots of hair. Except now it’s getting curly in the back and on the sides. Dustin gets credit for the curls.
5. My heart flutters every time she smiles.
Madison has given me joy that I did not know existed until she came into my life. I don’t know how I lived without her all the years before she was born. Daily she teaches me great lessons in patience and love. In my first year as Madison’s mommy I have learned that God is in control, not me; my circumstances are of God’s design (Ephesians 1:11-12). All of these trials associated with Madison and her seemingly imperfect body serve a purpose. I have learned that being Madison’s mommy is the greatest job and most awesome task God has ever set before me- it is what I was born to do. I simply cannot imagine what God has in store for Madison as she embarks on her second year. I pray it brings strength, and growth, and breakthroughs for her. I pray God continues to break down my stubbornness and desire to control the circumstances that are truly beyond my control. Most of all I pray that her life bring glory to the One who created her. I can’t wait to see how the Lord will continue to grow Madison into the most amazing little girl He has planned for her to be. I’m just so blessed to be a part of her life and His plan for her.
I’ll end with some credits, so-to-speak, people and things Dustin and I are most thankful for over this past year of Madison’s life. These were part of the video tribute Dustin and I made for Madison recapping her first year.
Special Thanks To:
-Dr. Paige Gernt
-Vanderbilt University Medical Center
-Junior League Center for Advanced Maternal Fetal Medicine
-modern medical technology
-Dr. Bennett
-Dr. Tulipan
-health insurance (although we still owe a ton)
-Goodyear tires and Stella (our Toyota Camry)- for safely getting us to and from Nashville for our many trips to Vanderbilt
-the manufacturers of headbands and hair bows
-our trusty food processor- for holding up through all the baby food-making
-the people who read and/or stalked our blog
-the many people who prayed for our family
-our church family and our CIC lifegroup family of Stevens Street Baptist Church
-our family and friends
-our parents who always loved, encouraged, and supported us whenever we needed it over the past year and a half
-God- His grace and mercy never ceases to amaze us- Madison is a good and perfect gift from Him- Thank you, Lord for Madison Grace
Til next time,
~Mandy, Mommy of a 1-year old
It is so cliché to say that it seems just like yesterday we were driving to the hospital to have Madison but that’s exactly what it seems like. In looking back on June 8, 2010, I remember such an overwhelming sense of excitement as we anticipated Madison’s arrival. Somehow I managed to push all my worries and anxiety over Madison’s Spina Bifida to the back of my mind that day. I was just too excited to be giving birth and meeting for the first time the person who was going to change my life. The countless doctors’ appointments, diagnostic tests, ultrasounds, and discussions we had endured in the nearly 7 months prior to Madison’s birth had escaped my mind that day, at least for a little while. Amazing how something we had been so fixated on and had so much anxiety over could disappear so quickly. But I woke up that morning and prepared myself to welcome our first child into the world just like any parent would, with no regard for what would happen after Madison arrived. In retrospect, I consider that a gift from God that He would allow me to experience Madison’s birth the way I did and clear my mind long enough for me to enjoy that time and have such joy and peace in my heart.
In the past twelve months since Madison’s birth, I certainly have never lost my joy over Madison or what a gift she is, but I am human and I have struggled, wrestled, and fought to overcome the intense waves of emotion I have experienced as a mother of a child with special needs. Most of my days as Madison’s mommy are great days- days when I enjoy every minute with her, go through our daily routines, and say my prayer of thanksgiving for her each night as we lay her down to sleep. Those are great days. But there are days, dark days, when I feel defeated and frustrated that we are living this life with a child the world will always label as different, disabled, special. I am ashamed to admit these days still creep up on me but I am just being honest. I will forever in my heart grieve over the challenges she will face and hardships she will have to endure. Unless you are a parent of a child with any kind of exceptional need, you will never know what it is like to spend countless hours trying to teach your child to do the simplest of tasks that everyone else’s children can do without any effort. Nor will you feel the anguish I have felt when I watch opportunities and experiences pass my child by because she cannot participate. Madison has the most beautiful smile and sweetest spirit that some will never take the time to see because they won’t see past her disability. Already in her first year, I am physically and emotionally exhausted from all the doctors’ visits, therapy sessions, and workouts I’ve had to take Madison to and put her through. I just wanted to have a child, be a mommy and that be that. But instead I’ve watched my baby endure two huge surgeries, hospitalizations, struggle to achieve the most basic of physical functions, and miss most of her developmental milestones. Madison still cannot sit without assistance nor can she crawl, pull up, or stand. What is probably more frustrating about this is that I simply have to accept it as part of her disability when I know that if it weren’t for her Spina Bifida she could do all of these things and more. It’s enough to drive me crazy if I let it. Ultimately, one of the biggest things I’m struggling with today, on Madison’s 1st birthday, is that the challenges have not diminished- they’ve just changed. I couldn’t help but notice that at 10:22 a.m. on June 8th last year, Madison was entering the world and a year later on June 8th at 10:22 a.m. she was at physical therapy strapped into a contraption designed to help her stand. I so desperately desire for Madison to make improvements and just once for her to be right on track, not behind. Just once to be challenge-free, just for a while to not have special needs. This is of course, selfish talk, but I can’t help it. Over a year after her diagnosis I’m still trying to cope with it all. Sometimes I just cry out, “Lord, why won’t you give my baby the strength to stand?!?!? Why must she be behind?!?!?” After all of these thoughts I instantly feel ashamed for complaining and guilty for not treasuring all the wonderful qualities Madison does possess. I also am immediately reminded of the verse from Jeremiah 29:11 that I know well, “For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.” God has a perfect plan for why I have endured and will continue to experience all these emotions surrounding Madison’s special needs but this verse also appeals to my motherhood. This verse also tells me that my child is so important to her Creator that He has already made plans for her special life, and that she has a future full of hope in those plans. That is so comforting to me and helps me reign in my emotions when I am tempted to wallow in the pit of despair I often create for myself.
Though I struggle to live out these plans God has set before me and my daughter, there is one thing I will never doubt nor ever forget about Madison Grace- she is a miracle. Someone once heard me refer to Madison as a miracle baby and asked me why she was. See if this qualifies as miraculous to you. Spina Bifida lesions that develop on the spine typically affect the area at the lesion and below it, usually resulting in paralysis from there down. Madison’s lesion was at the L5/S1 area of her spine, the lowest part. We were told to expect no leg movement, coordination, or feeling in Madison’s legs. Minutes after she was born and was being wheeled to the NICU, Madison’s isolette made a stop in the waiting room for family and friends to see her for the first time. They cried as they saw the blanket move when Madison kicked her little legs for the first time as if she was demonstrating that she was ok- she had overcome the doctors’ prognosis- she was not paralyzed. She also has been given a clean bill of health from her urologist who said she has the kidneys and bladder of a normal baby, unlike many children with Spina Bifida who have issues well into adulthood. For now, Madison requires no catheterization and appears to have no incontinence issues. At therapy three weeks ago, Madison pushed herself up onto her knees from a seated position, a skill which her therapist said means she has high level muscle function that is not typical of a child with Spina Bifida. All of those things combined with the fact that Madison is a sharp, extremely social, doesn’t miss a thing kind of girl demonstrates to me that God performed a miracle in Madison. She shouldn’t be able to move like she does. She’s not supposed to be off a cath schedule. She’s not supposed to be communicating and playing like she does. Spina Bifida should have created physical and cognitive challenges that Madison could not overcome. But she has. This picture below is one of my favorites we have ever taken of Madison.
It paraphrases Psalm 77:14- which is in small print under the text-which says, “You are the God who works wonders; You have made known Your strength among the peoples.” Is Madison not the epitome of this verse?!?!? Dustin and I, nor the many doctors, therapists, or special equipment are responsible for Madison’s miraculous outcomes. “Praise be to the LORD God, the God of Israel, who alone does marvelous deeds” Psalm 72:18. So, even though I struggle as I described earlier, I never forget that Madison has made tremendous progress and that God is still working on her.
Having said all of that, I must move on to what you were probably expecting to read in this birthday post- the good, fun, happy things. Side note- I am going to post her 1st birthday party pics separately from this entry. Some of you that read this blog have never met Madison and may never meet her. The rest of you know Madison but don’t get to interact with her like Mommy and Daddy do and therefore do not fully know the extent of her preciousness. The first year of Madison’s life has been nothing short of life-changing for us. We fell in love with her instantly upon meeting her and that love grows stronger every day. Her smiles at first were involuntary. Now, she beams at the sight of Mommy and Daddy and I swear there is no greater feeling than knowing I make my daughter happy. She reaches out for me and is calmed by my singing, my touch, and my embrace. She loves it when I flip my head up while drying my hair upside down so much that she squeals with delight. Madison, unfortunately, loves it when anyone drops anything or gets hurt. She laughs at the mention of the words “uh-oh” and she chuckles when she burps or toots (which she gets from her Daddy for sure!). Madison loves music and loves to be sung to which I am most happy to do for her. I’ve watched her develop quite the little personality over the past year which is partly mischievous, perfectly adorable, and particularly funny. She loves to be the center of attention, she NEVER misses a thing, and she is always on her best behavior, no kidding. The title of world’s best snuggler no longer belongs to Dustin as Madison has taken over in that area. She yanks her bows out of her hair now and her feet touch the back seat when she rides in the car- both signs that my baby is turning into a big girl. The things I love most about Madison being 1 are:
1. She can hold her own sippy cup and feed herself with it.
2. Laughter is contagious for Madison- she laughs in response to our laughter.
3. She understands the tone of my voice, whether it be stern or playful.
4. I no longer have to take her car seat into restaurants. She’s a big girl who can sit in her hook-on high chair.
5. She finds enjoyment in toys and books and it’s precious to watch.
6. Table food and whole milk have replaced homemade baby food and horribly expensive formula. AND
7. Madison loves to gab and makes all kinds of noises. I love a girl who loves to be social!
The things I love about Madison that have not changed over her first year are:
1. She wakes up happy every morning.
2. Tummy time is still Madison’s #1 enemy. It’s almost funny to watch her face turn angry when she realizes she’s being put on her tummy time mat.
3. Madison is all about routine- whether it be feeding, bathing, bedtime, etc. She has a schedule and she sticks to it like no other. She is definitely my child.
4. She still has lots of hair. Except now it’s getting curly in the back and on the sides. Dustin gets credit for the curls.
5. My heart flutters every time she smiles.
Madison has given me joy that I did not know existed until she came into my life. I don’t know how I lived without her all the years before she was born. Daily she teaches me great lessons in patience and love. In my first year as Madison’s mommy I have learned that God is in control, not me; my circumstances are of God’s design (Ephesians 1:11-12). All of these trials associated with Madison and her seemingly imperfect body serve a purpose. I have learned that being Madison’s mommy is the greatest job and most awesome task God has ever set before me- it is what I was born to do. I simply cannot imagine what God has in store for Madison as she embarks on her second year. I pray it brings strength, and growth, and breakthroughs for her. I pray God continues to break down my stubbornness and desire to control the circumstances that are truly beyond my control. Most of all I pray that her life bring glory to the One who created her. I can’t wait to see how the Lord will continue to grow Madison into the most amazing little girl He has planned for her to be. I’m just so blessed to be a part of her life and His plan for her.
I’ll end with some credits, so-to-speak, people and things Dustin and I are most thankful for over this past year of Madison’s life. These were part of the video tribute Dustin and I made for Madison recapping her first year.
Special Thanks To:
-Dr. Paige Gernt
-Vanderbilt University Medical Center
-Junior League Center for Advanced Maternal Fetal Medicine
-modern medical technology
-Dr. Bennett
-Dr. Tulipan
-health insurance (although we still owe a ton)
-Goodyear tires and Stella (our Toyota Camry)- for safely getting us to and from Nashville for our many trips to Vanderbilt
-the manufacturers of headbands and hair bows
-our trusty food processor- for holding up through all the baby food-making
-the people who read and/or stalked our blog
-the many people who prayed for our family
-our church family and our CIC lifegroup family of Stevens Street Baptist Church
-our family and friends
-our parents who always loved, encouraged, and supported us whenever we needed it over the past year and a half
-God- His grace and mercy never ceases to amaze us- Madison is a good and perfect gift from Him- Thank you, Lord for Madison Grace
Til next time,
~Mandy, Mommy of a 1-year old
Sunday, May 8, 2011
A Master's Degree and Mother's Day
So, today was the day. My first Mother's Day. Always wondered what this day would feel like and though it was pretty uneventful, it has been an awesome day. Last year at this time I was exactly 30 days away from giving birth to the little miracle that would make me a mommy and allow me to experience Mother's Day from a mother's perspective this year. Altogether the weekend has been spectacular as yesterday I got to take my daughter to TN Tech for her to watch mommy walk across the stage and earn her Masters Degree. I just kept thinking the whole time we were taking pictures afterwards...I can't wait to show Madison these pictures one day of me holding her in my cap and gown and explain to her what that day meant. My story (many years in the future) will go something like this...
Madison...Mommy and Daddy feel very strongly that education is important to the success of an individual. For that reason and because God gave us the desire to learn, we both went to college to get our undergraduate degrees. And while Mommy always wanted to get her Master's, things just never worked out for me to go back to school. We had moved twice, gotten new jobs, bought a house, and had many many back surgeries in between. But Mommy never quit wanting to go back to school. Daddy, on the other hand was able to earn two more degrees because God provided opportunities for him to go back to school for free at two universities. Well, all in the Lord's timing circumstances made it so that Mommy could start her Masters program at TTU. In August of 2009 I enrolled and began my first set of classes. And I LOVED it! Loved the reading and writing, studying, everything. I was just so glad to be able to be a student again. And then everything changed. Two months after starting graduate school I found out we were expecting you. And while this would have been no biggie for most, as you know, my pregnancy with you was anything but normal. The stress of grad school paired with the anxiety over my precious girl's condition, mixed with the responsibilities of full-time teaching was just too much for me to handle. My doctor made me withdraw from grad school immediately to focus on your health and mine. Funny how something you can be so excited about one minute can be the very thing you dread the next. Grad school became nothing but a big dark cloud hanging over my head that imposed deadline after deadline and no longer did I have that sense of excitement about completing my degree. But graciousness after graciousness was extended to me by each of my 4 professors at that time, who all agreed to let me finish my 4 classes in the fall semester after you were born. Well, that was great except that Mommy had to go back to work in the fall while trying to juggle those 4 classes plus 3 new ones I had to take. Fall of 2010 was THE worst semester of my life. My stress was at a whole new level and I resented ever going back to school because all the work, and all the assignments I had to complete were keeping me away from the only person I wanted to spend time with...YOU! By the grace of God, though, the semester ended and I moved on to the next one where I had just one more class to finish. Just days before graduation I received word that my amazing professor who had helped me and encouraged me through all of the trials of grad shcool, had finished editing my final paper and it was DONE! I was going to graduate. So, the day before Mother's Day in 2011 I dressed you up in your finest purple attire and took you to TTU to watch me get my Master's Degree. My cap and gown in the picture is the outward symbol that I succeeded...I perserved...I didn't quit...I earned something that I valued greatly- more education. When I started the Fall of 2009 I was simply a wife and teacher. In May of 2011 I walked across the stage still a wife and teacher but added the title of graduate and most importantly "mother" to my accomplishments. Amazing what the Lord can do in such a short amount of time. The End.
Although I am proud of myself for making it through an incredibly difficult year and a half of grad school, my degree pales in comparison to the joy and pride I feel in my role as Madison's mommy. Her "come get me" arms that stretch out to welcome me each time I come close to her and her beautiful eyes that speak to me and say, "I love you to pieces, Mommy" have made Mother's Day and every day ones I'll always treasure. That magical cuddle spot that only I can give her when I tuck her in my arms and close to my heart confirms every time that I am the mommy God chose for Madison and she is the precious gift God created just for me.
Thank goodness Madison's love for me will not end tomorrow when this Mother's Day is over. Thank God He knew exactly when and how He would allow me to enter into motherhood and equip me with the love and strength and abilities to parent Madison. Thank God He entrusted her to me. He knew that my "won't quit" attitude that got me through graduate school would be the very kind of perserverance Madison would need to overcome her challenges as she grows older.
For all you moms who have read this, hope you had a wonderful Mother's Day. Thank you for all the kind Mother's Day wishes I received from many of you who realize just how special my Madison is and that she made today a most wonderful one for me.
Blessings to you all,
~Mandy
Monday, April 4, 2011
9 Month Pics of Madison
I'm posting the link to the site that Madison's 9 month pics are on. To view our photos you have to enter Madison Rawls as the name to find photos then view the 9 months album. The pics are awesome and so perfectly captured Madison's sweet and funny little personality.
www.ogilvyimages.photoreflect.com
Enjoy! I am mesmorized by her true beauty when I look at them. And then I say to myself, "I am so blessed to be part of this precious little girl's life!"
~Mandy
www.ogilvyimages.photoreflect.com
Enjoy! I am mesmorized by her true beauty when I look at them. And then I say to myself, "I am so blessed to be part of this precious little girl's life!"
~Mandy
Monday, February 21, 2011
Madison Growing Up Right Before Our Eyes!
Madison looking angelic the morning we gave our testimony before our church congregation.
Aunt Amanda let Madison borrow her shades- very chic I think.
Would you believe this is a sick baby? Taken the day after we found out she had an upper respiratory virus and the croop.
Cereal goat and proud of it.
Love is in the air- Valentine's Day weekend.
Lovin' this baby on Valentine's Day- ready for nursery school in her hearts.
Mommy's baby!
Daddy's little girl!
Am I sweet, or what?!?!?
Friday, January 21, 2011
Long Overdue Updates: Physical Progress
Recently I've posted a few updates about Madison and what she's been doing but I've not updated anyone on her physical progress. This past week has been full of therapy appointments and evaluations so I thought it would be a good time to share what we've been learning about Madison and her progress as of late.
Now that Madison has passed her 6 month mark, (she's currently 7 1/2 months old) her evaluations and consultations have picked up considerably. That's because she's reached the age where clear developmental milestones could be observed, both cognitively and physically, and where progress or the lack thereof is easily detected. While we have certainly appreciated the expertise of the doctors and program coordinators that have been intensely evaluating Madison over the past month, we have grown very weary of the negative reports we've received on how Madison is doing. She has gotten less than glowing reports on more than one occasion for not doing the things she's supposed to that we see her do all the time at home. But all it takes is one missed action, one unobserved criterion and she is scored down and we are bombarded with all the deficits in her development. Bottom line here is, I'm so tired of everyone focusing on what Madison CAN'T do rather than what she HAS been able to accomplish. Here are some of the milestones Madison is struggling with:
1. Sitting up- she will only do it for brief periods of time and not consistently. It is clear that she still lacks the trunk/core strength she needs in order to hold herself up like she should.
2. Holding objects- Madison can hold objects but apparently for not long enough and she doesn't know how to transfer from one hand to the other. She rarely plays or uses both hands simultaneously to play.
3. Feeding herself- at this point Madison should be able to hold her own bottle and feed herself with it. But since the holding is an issue, she's not able to do this one.
4. Bearing weight- Madison's physical therapist has confirmed for us that Madison does not feel anything from her knee caps down. While this will not impede her ability to walk in the future, it does make it more challenging for her to bear weight on feet she doesn't know she has down there. A scary aspect of this is Madison's circulation- which is poor. We constantly have to check her little feet to see if there's proper blood flow. Certain positions we have to put her in to play cause her feet to turn blue, and I mean blueberry colored blue. It doesn't bother Madison but it's unsettling to see. Massage is really the only way we can help her with this issue.
5. Indwelling thumbs- Madison tucks her thumbs inside her clinched fists all the time. Obviously, this makes it impossible for her to play and hold things. The therapist says she may be required to start sleeping in thumb splints- a cast-like glove that will extend Madison's thumb to the point she can't tuck it in her fist.
6. Tendon shortening in the arms- unrelated to Madison's Spina Bifida- this is pretty noticeable when we watch Madison play. It's as if her wrists can't extend and her arms are always flexed because they've just run out of tendon to stretch with. Therapy will help with this as she gets bigger.
7. Rolling over- this was something Madison did several times when she was about 4 months old but has quit doing now. She only did a tummy to back roll, never a back to tummy roll. Hopefully as she strengthens those little tummy muscles, she'll start rolling more.
As you can see, there's a lot of things Madison needs help with. But praise the Lord, Dustin and I have learned about a million and one things to do with Madison to help her catch up with her physical development. I feel like I could start a second career as a physical therapist- ha ha. We will do whatever is necessary to assist Madison and provide her with the opportunities she needs to grow strong and tackle these physical obstacles.
Now...on to the list of what Madison is doing wonderfully...
1. Head control- surprisingly, Madison has developed great head control which is odd because typically in order to have good head control, babies must develop good trunk control. Madison is lacking good trunk control but can hold that little head up just fine.
2. Social development- evidenced by her precious smile and positive response to all those who talk and play with her. She's got the sweetest, funnest little personality and she is a true joy to spend time with. I can't wait to see what kind of little girl she'll become. She's so into everything that happens around her and doesn't want to be left out. Perhaps we have a social butterfly on our hands.
3. Cognitive development- Madison tracks objects well, responds to sounds and commands, and understands what's going on around her. She without a doubt knows who Momma and Da-Da are and it thrills me to catch her looking around for me or see her light up when I come in the room.
4. Feeding- Madison aka Chunky Monkey has an awesome appetite for foods that Dustin and I would never touch. We have purposely tried to introduce her to healthy foods that we never gained an appreciation for in hopes that she will continue to enjoy them as she gets older. At her 6 month check-up, Madison was in the 92nd percentile for weight. That means 92% of babies weigh less than Madison. Great news considering we were scared to death she would be underweight at birth and then struggle to maintain weight early on.
5. Leg strength and movement- If you've seen Madison, you have noticed her legs which are ginormous! Thunder thighs would be an understatement for how large they are but they are so stinkin strong! She gets all excited when she gets laid down for a diaper change and those little legs just go to town. I can think of two different occasions where I was not able to bend her legs to put her pants on because she had them flexed and wouldn't let me- I guess she was showing me who was boss. I feel in my heart that Madison will do better than is expected with walking because of the strong legs she's been blessed with.
So, while we have a lot to work on with Madison, we have much to be thankful for in regards to Madison's progress. It is overwhelming, the tasks of providing Madison with the help and care she needs, but I would go to the ends of the earth, empty our bank account, exhaust myself, and forgo any desires of my own to see her succeed and grow into the strong and precious girl God has planned for her to become.
I would simply ask that you continue to remember Madison in your prayers. We desire that she continue to glorify our Father through her development and show the many doctors and medical professionals that are watching and waiting for her to fall behind, that she can do all things through Christ who strengthens her. Philippians 4:13
Til next time,
~Mandy
Now that Madison has passed her 6 month mark, (she's currently 7 1/2 months old) her evaluations and consultations have picked up considerably. That's because she's reached the age where clear developmental milestones could be observed, both cognitively and physically, and where progress or the lack thereof is easily detected. While we have certainly appreciated the expertise of the doctors and program coordinators that have been intensely evaluating Madison over the past month, we have grown very weary of the negative reports we've received on how Madison is doing. She has gotten less than glowing reports on more than one occasion for not doing the things she's supposed to that we see her do all the time at home. But all it takes is one missed action, one unobserved criterion and she is scored down and we are bombarded with all the deficits in her development. Bottom line here is, I'm so tired of everyone focusing on what Madison CAN'T do rather than what she HAS been able to accomplish. Here are some of the milestones Madison is struggling with:
1. Sitting up- she will only do it for brief periods of time and not consistently. It is clear that she still lacks the trunk/core strength she needs in order to hold herself up like she should.
2. Holding objects- Madison can hold objects but apparently for not long enough and she doesn't know how to transfer from one hand to the other. She rarely plays or uses both hands simultaneously to play.
3. Feeding herself- at this point Madison should be able to hold her own bottle and feed herself with it. But since the holding is an issue, she's not able to do this one.
4. Bearing weight- Madison's physical therapist has confirmed for us that Madison does not feel anything from her knee caps down. While this will not impede her ability to walk in the future, it does make it more challenging for her to bear weight on feet she doesn't know she has down there. A scary aspect of this is Madison's circulation- which is poor. We constantly have to check her little feet to see if there's proper blood flow. Certain positions we have to put her in to play cause her feet to turn blue, and I mean blueberry colored blue. It doesn't bother Madison but it's unsettling to see. Massage is really the only way we can help her with this issue.
5. Indwelling thumbs- Madison tucks her thumbs inside her clinched fists all the time. Obviously, this makes it impossible for her to play and hold things. The therapist says she may be required to start sleeping in thumb splints- a cast-like glove that will extend Madison's thumb to the point she can't tuck it in her fist.
6. Tendon shortening in the arms- unrelated to Madison's Spina Bifida- this is pretty noticeable when we watch Madison play. It's as if her wrists can't extend and her arms are always flexed because they've just run out of tendon to stretch with. Therapy will help with this as she gets bigger.
7. Rolling over- this was something Madison did several times when she was about 4 months old but has quit doing now. She only did a tummy to back roll, never a back to tummy roll. Hopefully as she strengthens those little tummy muscles, she'll start rolling more.
As you can see, there's a lot of things Madison needs help with. But praise the Lord, Dustin and I have learned about a million and one things to do with Madison to help her catch up with her physical development. I feel like I could start a second career as a physical therapist- ha ha. We will do whatever is necessary to assist Madison and provide her with the opportunities she needs to grow strong and tackle these physical obstacles.
Now...on to the list of what Madison is doing wonderfully...
1. Head control- surprisingly, Madison has developed great head control which is odd because typically in order to have good head control, babies must develop good trunk control. Madison is lacking good trunk control but can hold that little head up just fine.
2. Social development- evidenced by her precious smile and positive response to all those who talk and play with her. She's got the sweetest, funnest little personality and she is a true joy to spend time with. I can't wait to see what kind of little girl she'll become. She's so into everything that happens around her and doesn't want to be left out. Perhaps we have a social butterfly on our hands.
3. Cognitive development- Madison tracks objects well, responds to sounds and commands, and understands what's going on around her. She without a doubt knows who Momma and Da-Da are and it thrills me to catch her looking around for me or see her light up when I come in the room.
4. Feeding- Madison aka Chunky Monkey has an awesome appetite for foods that Dustin and I would never touch. We have purposely tried to introduce her to healthy foods that we never gained an appreciation for in hopes that she will continue to enjoy them as she gets older. At her 6 month check-up, Madison was in the 92nd percentile for weight. That means 92% of babies weigh less than Madison. Great news considering we were scared to death she would be underweight at birth and then struggle to maintain weight early on.
5. Leg strength and movement- If you've seen Madison, you have noticed her legs which are ginormous! Thunder thighs would be an understatement for how large they are but they are so stinkin strong! She gets all excited when she gets laid down for a diaper change and those little legs just go to town. I can think of two different occasions where I was not able to bend her legs to put her pants on because she had them flexed and wouldn't let me- I guess she was showing me who was boss. I feel in my heart that Madison will do better than is expected with walking because of the strong legs she's been blessed with.
So, while we have a lot to work on with Madison, we have much to be thankful for in regards to Madison's progress. It is overwhelming, the tasks of providing Madison with the help and care she needs, but I would go to the ends of the earth, empty our bank account, exhaust myself, and forgo any desires of my own to see her succeed and grow into the strong and precious girl God has planned for her to become.
I would simply ask that you continue to remember Madison in your prayers. We desire that she continue to glorify our Father through her development and show the many doctors and medical professionals that are watching and waiting for her to fall behind, that she can do all things through Christ who strengthens her. Philippians 4:13
Til next time,
~Mandy
Monday, January 17, 2011
Madison's First Christmas
The six months between Madison's birth and her first Christmas passed so quickly and we were so excited to be celebrating this holiday with our sweet girl.
Madison had her own Christmas tree in her room. It truly brought my heart joy to watch her as she saw it for the first time- her little eyes got so big- it was as if she was thinking, "What is this amazing, shiny thing in my room?" Nana (Linda, Dustin's mom) bought her two Baby's 1st Christmas ornaments to hang on her tree. The rest of the ornaments were decorative balls and ornaments I made from paper and ribbon. Grammy (my mom) and I, two of the most sewing-challenged people to ever live, somehow managed to cut and sew a tree skirt with fabric left over from Madison's bedding that was made. We were so proud, and though Madison didn't care about it, I will be sure to let her know one day that we lovingly put that tree skirt together so her little tree would look pretty in her room.
Up until Madison arrived, Christmas holidays have always been divided between my family and Dustin's family in Chattanooga and Brentwood, respectively. We decided this would be the last year to travel to each family for Christmas since we'll be having Christmas at our house with Madison next year. Before Christmas we spent time with Dustin's family and officially kicked-off Madison's holiday season with a trip to Cool Springs Mall to have her picture made with Santa. We were in line for 50 minutes waiting to get to the see the Big Guy. While waiting, Dustin and I were discussing how he must have the most miserable job in the world. Santa's cheeks were rosy but I'm pretty sure it's because he was about to melt in the hot, velvet suit he was wearing. But he was a pretty Santa, nonetheless. Madison woke up just minutes before we put her in Santa's lap so she had a pretty zoned out expression on her face. But I thought it turned out to be a precious picture and I cried when I saw it for the first time.
Some of Dustin's family came over to his parent's house on Christmas Eve for dinner and a mini-Christmas. Madison was showered with gifts and it was fun for a while but she wore herself out and zonked out in Aunt Diane's lap from all the excitement.
To our surprise, we woke up on Christmas morning to find a white Christmas outside the windows. I could not have been more thrilled that Madison's first Christmas was a white one.
We bundled up Peanut and headed over to Uncle Stacy and Aunt Marilyn's house for Christmas morning festivities. Madison got some super cute clothes and awesome toys from the family and we all enjoyed a wonderful Christmas morning breakfast.
On Christmas afternoon we drove to Chattanooga to spend the next few days with my family. Madison had fun spending time with all her cousins and she got some more cool gifts. A couple of my favorite things she got was a voice-recorded storybook of The Night Before Christmas that Madison's great-grandmother recorded for her. She also got a very cool kick and play piano that attaches to the foot of Madison's crib for her to kick at and work her legs.
All in all, Madison's first Christmas was wonderful- we just felt exhausted though from the traveling. No longer can Dustin and I just pack up and go out of town with one overnight bag. The amount of stuff we had to pack to be gone for 10 days was unreal and we were pooped after loading it, unloading, and reloading it over and over. She needs her own set of luggage!
We are blessed with wonderful, loving families who took the time to make Madison's first Christmas a special one. Since we will be in our own home next year, we look forward to beginning new family traditions with Madison that will help her to learn the true meaning of Christmas and celebrate the birth of Jesus Christ. Madison will be 1 1/2 yrs old next Christmas so I can't wait to watch her experience Christmas in a whole new way.
As of today's blog date...only 348 days til Christmas 2011!
Be blessed!
~Mandy
Madison had her own Christmas tree in her room. It truly brought my heart joy to watch her as she saw it for the first time- her little eyes got so big- it was as if she was thinking, "What is this amazing, shiny thing in my room?" Nana (Linda, Dustin's mom) bought her two Baby's 1st Christmas ornaments to hang on her tree. The rest of the ornaments were decorative balls and ornaments I made from paper and ribbon. Grammy (my mom) and I, two of the most sewing-challenged people to ever live, somehow managed to cut and sew a tree skirt with fabric left over from Madison's bedding that was made. We were so proud, and though Madison didn't care about it, I will be sure to let her know one day that we lovingly put that tree skirt together so her little tree would look pretty in her room.
Up until Madison arrived, Christmas holidays have always been divided between my family and Dustin's family in Chattanooga and Brentwood, respectively. We decided this would be the last year to travel to each family for Christmas since we'll be having Christmas at our house with Madison next year. Before Christmas we spent time with Dustin's family and officially kicked-off Madison's holiday season with a trip to Cool Springs Mall to have her picture made with Santa. We were in line for 50 minutes waiting to get to the see the Big Guy. While waiting, Dustin and I were discussing how he must have the most miserable job in the world. Santa's cheeks were rosy but I'm pretty sure it's because he was about to melt in the hot, velvet suit he was wearing. But he was a pretty Santa, nonetheless. Madison woke up just minutes before we put her in Santa's lap so she had a pretty zoned out expression on her face. But I thought it turned out to be a precious picture and I cried when I saw it for the first time.
Some of Dustin's family came over to his parent's house on Christmas Eve for dinner and a mini-Christmas. Madison was showered with gifts and it was fun for a while but she wore herself out and zonked out in Aunt Diane's lap from all the excitement.
To our surprise, we woke up on Christmas morning to find a white Christmas outside the windows. I could not have been more thrilled that Madison's first Christmas was a white one.
We bundled up Peanut and headed over to Uncle Stacy and Aunt Marilyn's house for Christmas morning festivities. Madison got some super cute clothes and awesome toys from the family and we all enjoyed a wonderful Christmas morning breakfast.
On Christmas afternoon we drove to Chattanooga to spend the next few days with my family. Madison had fun spending time with all her cousins and she got some more cool gifts. A couple of my favorite things she got was a voice-recorded storybook of The Night Before Christmas that Madison's great-grandmother recorded for her. She also got a very cool kick and play piano that attaches to the foot of Madison's crib for her to kick at and work her legs.
All in all, Madison's first Christmas was wonderful- we just felt exhausted though from the traveling. No longer can Dustin and I just pack up and go out of town with one overnight bag. The amount of stuff we had to pack to be gone for 10 days was unreal and we were pooped after loading it, unloading, and reloading it over and over. She needs her own set of luggage!
We are blessed with wonderful, loving families who took the time to make Madison's first Christmas a special one. Since we will be in our own home next year, we look forward to beginning new family traditions with Madison that will help her to learn the true meaning of Christmas and celebrate the birth of Jesus Christ. Madison will be 1 1/2 yrs old next Christmas so I can't wait to watch her experience Christmas in a whole new way.
As of today's blog date...only 348 days til Christmas 2011!
Be blessed!
~Mandy
Thursday, January 13, 2011
Long Overdue Update: First Foods
So, it's been about 4 months since I last posted and while I hate it's been so long, you have to forgive me considering the circumstances that have kept me away. Life just got too hectic and there was no spare time to do anything extra- like blogging. Between Dustin's back surgery, my return to work, my overwhelming graduate school load, and parenting, time just got away. But, the holidays and snow days have allowed me to recharge my battery and now I'm ready to deliver Madison updates on a more regular basis.
In early December, right as Madison turned 6 months old, we introduced her to her first taste of "real" food. I decided a long time ago that I wanted to make Madison's food in order to give her a most healthy start to mealtime. I'll give you a run down of what I've made and her response to each.
Green beans were first...she hated them. Gagged herself and threw up (not spit-up) everywhere. Now she's used to them and doesn't mind eating them.
Then, peas...she wasn't too keen on them at first but they grew on her.
Next came sweet potatoes...YUMMY in Madison's tummy! I thought they were her favorite until...
Butternut squash...she loves it! Too bad it stains her bibs like no other.
Tried chickpeas next, you know, to give her some good protein...she refuses to eat them.
Lima beans have been the most recent addition to the menu...she tolerates them but they're no butternut squash.
Madison's reaction to her first bite of green beans.
I wanted to be sure she was good and used to the veggies before I introduced the fruits- they (meaning drs. and baby know-it-alls) say some babies refuse to eat veggies once they've had a taste of those sweet fruits. Didn't want that happening to Madison so after three weeks of veggies, we decided it was time to give her her first fruits.
Peaches were first...took some getting used to but ultimately I think she likes them.
Applesauce was next. I was so impressed that I made applesauce that looked just like the stuff you'd buy in the jar. Madison was not impressed. She gags and refuses to swallow it- she just holds it on her tongue. I think it's the texture that bothers her.
Then, we gave her mango...I would deem this her favorite fruit so far. Not sure what fruit we'll give her next.
All in all I am very happy about our decision to make Madison's baby food. It is time consuming and sometimes messy, but well worth it to know she's eating healthy and we're saving money.
It has amazed me that without having ever eaten "real" food before, she knows what she likes and doesn't like. God gave her those little tastebuds to discern her pleasing vs. unpleasing flavors. I am amazed at how her little body works and discovers things at her young age. Wish I could say I'm off to the kitchen to whip up some more yummy baby food but I'm pooped...I'm going to bed.
More updates to come...
~Mandy
In early December, right as Madison turned 6 months old, we introduced her to her first taste of "real" food. I decided a long time ago that I wanted to make Madison's food in order to give her a most healthy start to mealtime. I'll give you a run down of what I've made and her response to each.
Green beans were first...she hated them. Gagged herself and threw up (not spit-up) everywhere. Now she's used to them and doesn't mind eating them.
Then, peas...she wasn't too keen on them at first but they grew on her.
Next came sweet potatoes...YUMMY in Madison's tummy! I thought they were her favorite until...
Butternut squash...she loves it! Too bad it stains her bibs like no other.
Tried chickpeas next, you know, to give her some good protein...she refuses to eat them.
Lima beans have been the most recent addition to the menu...she tolerates them but they're no butternut squash.
Madison's reaction to her first bite of green beans.I wanted to be sure she was good and used to the veggies before I introduced the fruits- they (meaning drs. and baby know-it-alls) say some babies refuse to eat veggies once they've had a taste of those sweet fruits. Didn't want that happening to Madison so after three weeks of veggies, we decided it was time to give her her first fruits.
Peaches were first...took some getting used to but ultimately I think she likes them.
Applesauce was next. I was so impressed that I made applesauce that looked just like the stuff you'd buy in the jar. Madison was not impressed. She gags and refuses to swallow it- she just holds it on her tongue. I think it's the texture that bothers her.
Then, we gave her mango...I would deem this her favorite fruit so far. Not sure what fruit we'll give her next.
All in all I am very happy about our decision to make Madison's baby food. It is time consuming and sometimes messy, but well worth it to know she's eating healthy and we're saving money.
It has amazed me that without having ever eaten "real" food before, she knows what she likes and doesn't like. God gave her those little tastebuds to discern her pleasing vs. unpleasing flavors. I am amazed at how her little body works and discovers things at her young age. Wish I could say I'm off to the kitchen to whip up some more yummy baby food but I'm pooped...I'm going to bed.
More updates to come...
~Mandy
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