Where are the Answers?

One day we were driving in the car together before Abigail was even a thought and Jordan played a little song for me by *NSYNC. Maybe you have heard it, “God must have spent a little more time on you.” The chorus goes a little something like this, “When I look into your eyes I know that it’s true, God must have spent A little more time On you.” It’s a classic love song, and I hated it. I felt like it was just saying you needed so much extra help that God had to take extra time fixing you to be right. I know that is not how you are supposed to take it, but that is what I heard. We still laugh when we hear that song and we will sarcastically say, “yep, God spent some extra time on you.” Then we had a lovely baby come along and I can definitely say that God put some work into making her!

We have been to about seven different specialists, not including her therapists and regular pediatrician. It goes without saying that every single doctor has been puzzled by Abigail. She is an odd bird to say the least. Her tests results never come out the way the doctor plans. Her results often do not match what she can do physically. We have done many tests and procedures in this short two years and every single one has come back normal with zero answers as to why Abigail is the way she is. She is a complete medical mystery so far.

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Our medical mystery…at least she is cute!

Just this week we received details about her genetic testing we have been waiting on for six months now. Six months is a long time to wait on a test that could literally change everything.  Everything is pending on this test. Answers as to why Abigail is the way she is, what our next steps will be, what her future will hold, and finding out about our next steps as a family. This was a BIG test! And in about five minutes of being on the phone all our hopes were shot. You say you will not get your hopes up. We knew this test could be as normal as the other test. We knew it might not give us the answers we were counting on, but you cannot help but to get your hopes up a little bit.

The nurse on the other end of the line said what we have always heard, “basically, the results show that all Abigail’s genes and chromosomes are normal. She does not have any misplaced or missing, so that’s unfortunately fortunate.” We have been fortunate that she has no major chromosomal abnormalities, but part of you wishes there was one thing wrong so you could have an answer. We are very unfortunately fortunate a lot. Part of us wants to cheer because our baby is healthy, and the other part of us wants to beat our heads against a wall because this constant testing process will never end. Between scheduling appointments that are months away because the doctors are so booked up, and tests that take months to complete we feel like we will never have the answers we seek.

What makes Abigail the way she is? No one can tell us. No one can say why she is so social and yet she cannot talk. No one can say why our two year old, who has been working on sitting for 18 months now still lacks the core strength to sit on her own. No one can tell us why her legs refuse to hold her up. No one has any answers and it is frustrating. But for now we are doing what we can. Even with a diagnoses we would do exactly what we are doing by going to therapy and receiving all the help we can for her. But it is that one question that plagues us – why? Why did God spend a little more time on Abigail, making her so complex? Why is it our child who will have to work harder in everything she does in life? Why?

I cannot answer these questions. I ponder them sometimes as I go throughout my day. When people ask us what is wrong with Abigail I try to explain to the best of my ability what I do know, but there is an awful lot I do not know. But I do know that God made her. He may have spent some time crafting her uniquely, but His thumbprints are all over her. And God made her with purpose. He made her in love. He made her with grace and mercy, and He loves Abigail more than I do plus a million times more. While I do not have all the answers, I know we are not alone as we journey through this. We have a Leader who guides us through. Yes, the way is often dark and very lonely but we are not alone. And for that I am thankful. I am thankful God spent a little more time on Abigail. She is perfect in every way and I would not trade her for the world. She may never talk or walk or even dress herself, but she is my sunshine and my little blessing. I only pray one day as I look back over our journey I will see the fingerprints of God in every step of this long path.

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Abigail’s Special Ability

We were sitting on our front porch and we watched three little girls ride by on their bikes. She watched them riding by, giggling as they went. As they disappeared around the curve she reached her little arm out and I explained they had already gone. She just kept reaching, processing everything that had just gone by her. My own eyes filled with tears as her eyes kept watching after those three girls. My baby girl cannot keep up with those girls. She might never ride a bike or run around the front yard. As she watched those girls go I wondered what she was thinking.

A questionnaire I was filling out at the doctor’s office asked if Abigail’s condition affected her relationship with others. I had never thought of it affecting her before. She is such a friendly, social little girl. But as I sat there pondering that question I thought of how much she is affected. She cannot explore her environment as a normal toddler would. She cannot socialize with other children her age because they are too fast for her, and they scare her. Yes, she is cute and a show stopper in so many ways. Yes, she can get all the attention in the room quickly. Yes, she is a social butterfly and does not mind getting attention from complete strangers. And yes, she loves all people. But how does her disability affect her socially?

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Would Abigail be who she is today if she was not developmentally behind? It is hard to think of Abigail as being ‘normal.’ I cannot imagine her running around, getting into everything and talking to me in her own toddler language. Would her personality be as glowing and sweet? Would she be a calm child or one who is into everything. Would she be adventurous or cautious? I would like to think that she would be the kid climbing the walls and coloring the walls. She would be strong-willed and stubborn. She would be independent. Maybe I am glad to have a toddler who cannot move. Just the other night she literally poured out an entire bag of cheerios on the floor in a matter of seconds. I had given her the sealed bag to play with while I talked to Jordan. Neither of us were paying her any attention, and then we heard the Cheerios spilling out. They were everywhere before we knew it. That little stinker managed to open the bag and spill them all without even leaving my lap. She is a mess and a half and she knows it too!

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As we watch Abigail grow day by day I realize how long she is getting. Her baby-ness is disappearing and she is turning into a little girl before our eyes. Yet, every time I talk about her for the first time I do not mention her progress or her abilities. I always tell people about her disability. I explain she cannot sit up or walk or talk. Her disability is apart of who she is. I do not do this because it defines her, but because people realize something is not quite right and it is easier to put them at ease then make them quietly question it in their minds. Yes, her disability is apart of who she is, but it is not all of who she is. Abigail is a smart, spunky, independent little bombshell. She is hilarious and the life of the party. But because she cannot do anything independently she quickly gets overshadowed by everything else going on around her.

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I want Abigail to always remember this. She has the ability to do so much, and I want her to never think because of her disability she is not enough or not worthy. Yes, she will struggle. Yes, she will do things differently than everyone else. Yes, she will have things to overcome. But this will only make her stronger. It will give her a story that can only be hers to tell. Oh may her ability to do what she sets her mind triumph her disability every day!

Our Journey with Food

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Last year I posted a blog about Abigail finishing a whole container of baby food. You can read that story here. It was an exciting day!! Our journey of food and eating has been quite an adventure. We are blessed that we never have had a feeding tube, or even a thought of needing one. But there was a time we were not sure how we were ever going to get Abigail to eat anything. Today she eats so well; even eating table foods.

Before we had Abigail I had already decided to breastfeed simply because it is more cost effective for us. Baby formula is expensive! I read everything I could about it,  attended classes and still decided I had no idea what I was in for. Thankfully Abigail knew what to do and she was amazing!! I’m a huge believer that fed is best for any baby. If you can breastfeed great, if not then formula is great too!! I am not a breastfeeding advocate. I was not a huge breastfeeding fan if I have to be honest, so I cannot write about how amazing it was and how it helped my baby. But it did keep her nourished for the first year of her life and for that I am thankful for my breastfeeding journey.

We tried introducing baby food at six months. It did not go over well. Abigail hated the texture. She hated the spoon. I tried making my own baby food. I tried all the flavors Gerber offers. She would eat about a fourth of the container all day long. This is when the food struggle began. I would cry because I knew she could not live off breastmilk forever, and I would not breastfeed forever. But we kept offering, kept trying every trick we could, and kept listening to what our therapists would tell us. The one thing Abigail did catch onto quickly was drinking from a straw. We could not get her to take a bottle to save her life, and she could not figure out sippy cups. I was at a loss how to get liquids into her mouth. But my mother-in-law suggested a straw and we have not looked back since. Abigail was drinking with a straw by nine months, and it is still the only thing she uses today.

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First time eating baby food. She did not eat any of it despite what the picture shows.

At a year we were still mainly breastfeeding and eating what little baby food we could get in her. Our pediatrician referred us to another doctor to get a swallow study done. They wanted to make sure nothing was obstructing her throat because she would also choke and gag a lot, even while drinking water. Around a year old we went to Athens Regional Hospital to do the swallow study. They put barium in her food and water and put her under X-rays to watch her food go down her throat. It was the weirdest thing to watch as a parent. But, as always, there was nothing wrong with her swallowing except for the fact that Abigail did not chew, she simply sucked on everything and then swallowed. So we still were not ready for solid foods.

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Trying sweet potatoes. She hated touching them, but at least eating them wasn’t too bad.

In just a year of working with our therapists, continuing to offer food even when Abigail refused or would choke on it, and simply allowing her to grow up a little more she has made huge improvements. She stopped breast feeding around 15 months!!! She began finishing whole containers of baby food, and she even started eating table food. Today she loves fruit and bread!! She takes after her mama there. She eats chicken, quesadillas, strawberries, Mac and cheese, and other things. Her diet is varied and she is not picky. No, she cannot keep up with a toddler her age but to see her eat table food now after where we were a year ago is so exciting. I would cry at night and throw pity parties about how I would always be a milk machine and nothing else. I was scared Abigail would be that kid who was still nursing at five years old. Jordan, as always, would tell me that is ridiculous and stop my pity parties with his indisputable reasoning. I needed him as I always will. But those fears were so silly, and I am thankful Abigail can eat real food now.

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We still have a ways to go. Abigail gets choked on water every other sip, she still refuses to feed herself, and she will not bite food to save her life. But these things can be helped and learned. To see her progress already encourages me that we can only get better from here. Our food journey has been a rollercoaster, but I am excited where we are today. And I am proud of my daughter!! And I am glad she likes food and has become a little piggy.

Our Journey

When we first find out we were pregnant I was very apprehensive. I was worried about being pregnant. I was very, very worried about labor and delivery. I do not handle pain very well. And I was worried about how to be a mom. I had never been around babies and toddlers, so I had no clue how to change a diaper or even give a baby a bottle.  However, I survived being pregnant even though by about week twelve I was ready for the Lord to take me. I was so weak from throwing up and not eating for about ten weeks, I figured I would die any day. But that blessed second trimester came and pregnancy became a blessing as we watched our little baby grow inside me. I somehow survived labor after pushing for three and a half hours and being one push away from a C-section. I was exhausted!! But thank you to modern medicine I experienced zero pain. Praise the Lord!!!

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Our little newborn.

Then I was holding a brand spanking new baby. I had no clue what to do, but I knew our lives had changed forever. I learned to breastfeed and change a diaper in the hospital. We had our first scare when Abigail was just hours old. The night nurse discovered sores all over her body. But no one could tell us what they were from. At a day old Abigail was already giving samples and blood for testing, but nothing came of it, and they actually trusted us to take this little one home. Since Jordan and I had no idea what newborns were like we just figured Abigail was normal. She was eating and gaining weight. She slept well and smiled around three days old at her daddy, of course. She even flipped herself over from her stomach to her back a couple times her first week home. We figured she would be a wonder baby. Abigail was a great baby and always has been. She ate and slept like a champ and rarely, if ever, cried. I still do not know what Abigail’s cry sounds like because we never hear it.

We went to her two-month check up and she was gaining weight perfectly. That is all I was concerned with since I was breastfeeding. The pediatrician did her check up and said she looked perfect except for her vision. We had not even noticed because we just figured all newborns had bad vision and weird focusing issues. Abigail looked up for her first 10-12 months of life. You could barely see her pupils she looked up so much. She never focused or tracked anything. This led us to Atlanta to an appointment with a pediatric ophthalmologist. The doctor told us that her eyes looked perfect but he was concerned that there was maybe an issue with her connection between her eyes and her brain, so he scheduled us to have an MRI when she was six months old. Jordan and I were new and naïve at this process at this point, so we were worried our little baby was blind. I even remember researching everything I could find about babies who were born blind. Best-case scenario we figured she would be that baby with little goggles, and those babies are adorable so we secretly were kind of excited about getting baby goggles.

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Looking back on her baby pictures I do not know how we did not see it. But this is her looking up, as she always did. This is what concerned the doctors.

However, in the meantime we went back for our four-month check up, and our pediatrician was again happy with her growth but there was another issue. She had very low muscle tone. At four months her head control was still similar to a newborn’s. Abigail did not gain full head control until recently. But she was diagnosed with hypertonia, or as they call it ‘floppy baby syndrome.’ So we found ourselves going to a neurologist to do more tests. The neurologist was puzzled by Abigail’s vision as well. But they wanted to do blood work to determine the cause of her hypertonia, called a hypertonia panel. We did multiple rounds of blood work to determine things like her vitamin levels. We did a few urine tests, and urine tests for a baby are no fun and gross! We also did an EEG to test for seizures. All these tests came out clear. Which is a praise, but we realized then that this might be a long journey. Our days of researching everything were done. I knew all we could do was wait for something to come through with an answer.

Thankfully, at this point of our journey we started occupational and physical therapy. Abigail was about five months old, and she could not do much of anything. She barely could sit up with support. She rarely played with toys or noticed anything in her environment. She could not focus or track anything with those crazy eyes. And she had zero protective instincts. If you went to ‘drop’ Abigail she never reacted or got scared. To remember all that, and then to see her today is truly a miracle. Therapy has been amazing for her!!

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Her first time in her Bumbo chair. She could barely sit in it for a minute or two without falling over to one side or another. Now we use this seat every day and her legs are so much longer!

The day for the MRI came, and we made our three hour trip to Children’s early in the morning. Abigail had to go on a fast and could not eat that morning. It was a long morning with a tired, hungry baby, but we made it. They took us into our room to put Abigail under so she could go do her test. It was hard for them to find her tiny vein to put her IV in, and I had to step out of the room. My baby who never cries was screaming and I could not handle it. Then they got her ready to be out under. They put the medicine in her IV and within a minute she was out. It was one of the hardest things we had to watch. They rolled her out and I remember Jordan and I crying in each others’ arms. It was a long day for us all but we all survived, and made it home safe and sound. Two days later they called with the results, saying nothing was wrong. This would become a normal for us.

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In her precious little hospital gown getting ready to go back for her MRI. December 2015, seven months old

Our one neurologist gave up on us saying they just were not sure what other tests to do for Abigail. They referred us to another neurologist at Children’s. So back to Children’s we went. The doctor at Children’s wanted us to do an EMG test to check her muscle function. It was the craziest test we have done. Jordan and I were in the room with the doctor, and Abigail was laying on the hospital bed. To do the test the doctor had to stick little needles in Abigail’s muscles and send shocks into her muscles to minister her reactions. The doctor was on one side placing the needles and turning on the machine. I was on the bed holding the probes in place and Jordan was on the other side trying to hold Abigail down. It was like playing twister with all three of our hands on every inch of Abigail, and if someone walked in it would have been a sight. But that test came back normal too. Her muscles worked perfectly!

We have gone to an orthopedic doctor recently and you can read our story about that appointment here. But again Abigail’s bone structure was great! The last test we are waiting for is her genetic test. We did her blood work for it back in November. They said the results could take up to six months to come in and it has been five, so maybe we will hear from them soon. We do not have our hopes hinging on this test though because the nature of genetics testing is that they don not always give any answers. It is only a 20% chance they will find anything, and if they do it will not really change anything that we are already doing.

It has been a long two-year journey for us, with lots of new experiences and lessons in patience and faith. We obviously have no answers as to why Abigail is the way she is. But we have lots of answers as to things she does not have. She is healthy and happy. She is a joy to be around and we are spoiled!! Everyone always asks us what is wrong with Abigail when we say she is behind or has special needs. We just do not have an answer, but even without a diagnoses that does not mean that we have no hope. A diagnoses will just put a name on what Abigail has, but it will not solve any thing. We will still continue to do all three therapies, and attend our doctor appointments. Yes, a diagnoses will help with getting grants and other help as time progresses, but Abigail is not defined by what is wrong with her. She is who she is because of what she can do, and her bubbly little personality God has given her.

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I miss her gummy smile!

I wrote a blog about being In the Midst of the Unknown, and we are still there today. The unknown is not a fun place to be. It feels as if we are walking a path to absolutely no where, but the view around us right now is good! While we do not know what tomorrow holds, we know that right now God has us here on this journey. It is tough in its own ways. We do not know what Abigail’s quality of life will be, or even what she is capable of. She has the potential to regress any day, and that scares me more than anything. She could be our child who never leaves home. She could be in a wheelchair in the next year or so. We simply do not know. It is the not knowing that is the hardest. I want to make plans. I want to grow our family. I want to know what the next ten years will look like, but we cannot even predict the next ten weeks.

This journey of the unknown has stretched my faith and my patience to the maximum. I never planned to have a special needs baby, no one does. But here we are diving into the special needs community headfirst. It is a life I never thought about. But it is a life that is so rewarding, and blesses me everyday. My daughter is a blessing, and she is perfect in every way. Yes, she is a little different and highly unusual in so many ways, but she is a joy and a treasure. A lot of times she will do something and we will be like, “oh, that is so Abigail.” Like she just learned to blow kisses, but she does it all her way and it is precious. I think that will be the way her life is, doing things in her own unique way. But I am so glad God gave Abigail to us to raise and love on. It is been a journey loving this girl, but I would not change a moment of it!!

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