Off to the Races

Well folks we are off to the races! Our lives just got very exciting and action packed after a very long time of waiting. Of course we don’t know anything officially about Abigail’s diagnoses, but chances are looking better than ever before that we will know something soon. I can’t give a lot of detail simply because I don’t have a lot of details to give. The doctors want to run a muscle biopsy on Abigail before they give us any official diagnosis or answers. They are hoping the biopsy will reveal the answers they need to complete the puzzle of sorts, which would also be known as my daughter.

We had a whole exome study done of Abigail’s genes last year. Out of every single gene there was one that was mutated, as they call it. That one mutated gene is the gene that affects muscles, and would explain a lot of why Abigail is the way she is. However, since all her other tests have been normal they would not give us a diagnosis or put a name on anything for us. However, we completed an ultrasound and another EMG last week (it’s a test where they stick little needles in Abigail’s muscles and test how they respond to stimuli – it sounds a lot worse than it is), and the doctor said he definitely saw effects of that mutated gene. Hence why we are going for the muscle biopsy to prove what he saw was right. If the muscle biopsy agrees with all these findings we may just get a diagnosis three years later!

Of course this diagnosis won’t change anything for Abigail. Especially since it seems to be genetic there’s no fixing it. Therapy and working with her will be her best forms of medicine, and she’s already improving so much we aren’t too worried about her. Of course she will have to fight to do everything. Things won’t come naturally like they do for most children because her muscles are essential diseased. But if anyone can overcome the odds then Abigail can. I know we will have lots of information to take in and questions for the doctors when a diagnosis does come, but even if their prognosis is that Abigail won’t be able to walk I don’t think I will be able to believe them. In just two days of having leg braces, she is already standing better! I think that girl can do anything if she wanted to.

Of course we realize that this muscle biopsy won’t be easy. They will be removing a piece of Abigail’s left bicep, and we have yet to hear all the details. And we also understand that the biopsy could come back clear and we would be back to square one with Abigail just being a puzzle to figure out. But we are praying for some answers. We are praying she continues to grow strong and improve. We are praying for wisdom for our doctors. And we are praying that Abigail will fight hard, and show people that she can overcome any obstacle!

We are so proud of her and her determination! She is such a trooper through all this. Poor thing has been dragged around from doctor to doctor. She has undergone a lot of scary looking tests. She has been fitted for equipment. And there has been a few tears along the way, but mostly just a lot of smiles. I love her happy little personality and I am glad she can smile through it all. She helps us feel better about all this because we know she is strong and it takes a lot more than some scary diagnosis to get her down! So we are off to the races to fight, to get some answers, and to show a little joy in this world.

move mtns


Our Amazing Wonder

I forget how tall Abigail is. I know that is weird, but I just always forget that she would already come up to my waist if she could stand next to me. She is pushing three feet tall now, but I forget that. When I help her stand using the couch it hits me every time that she is tall. It is such a simple thing, but it always amazes me because I never get to see her stand up. That is how Abigail is though – just little things she does catches you off guard and amazes you.

Abigail never stops to amaze me in what she can do and what she tries to do. Just this week she has been wanting to hold her own cup and drink herself. She has learned to take sips from a glass. She pushes herself up completely with her arms so she’s almost in a sitting position. She is wanting to sit up and stand all the time. She is trying to tuck her legs underneath her to get on all fours. Her signing abilities have improved. She now signs without being prompted, or if she overhears a word she knows while people are talking she will sign it. It is like one thing after another. We missed therapy this week, so when we see our therapists Monday they will be so proud!


Our big girl enjoying her juice at Chick-fil-a!

It is usually simple things that amaze us, but sometimes it is the simple things that matter most in life. Because Abigail is so far behind developmentally, it is easy to presume she does not understand a lot of things. I am even impressed what all Abigail understands. But just because she cannot communicate does not mean she does not understand. She knows exactly when people are talking to her and when they are not, and she does not liked to be ignored. It is not rare at the dinner table for Jordan to be telling me about his day and Abigail will start screaming at the top of her lungs. Not a scary ‘I’m hurt’ scream, but a ‘look at me I’m cute and you’re not talking to me’ scream. We have tried to ignore her, but usually if you ask her if she has anything else to say she is happy you paid her attention and will allow you to continue your conversation again. And it is not just in person. Abigail loves talking on the phone. I will put the phone on speaker and lock it and hand it to her and she knows to put the phone to her ear and talk. Her and Daddy often talk on the phone and she does the screaming war then too until he talks to her and not Mommie. She is a mess!

Abigail only knows the word yes because we have not taught her no yet. She can sign yes (it’s one of her favorites) and sometimes she will vocally say a little, ‘yay.’ But we realized we had to start teaching her no because she says yes to everything. She knows when you ask a question and she will respond yes. So since she cannot do the real sign for no in sign language her therapist told me to just have her point her finger and turn her wrist back and forth. But Abigail cannot point and wave at the same time yet. So right now if you ask her to say no she simply points at you. It is still cute! But she catches on so quickly! I try to introduce new signs every week, and she always picks them up and uses them. I love being able to communicate better with her, and I think she loves her signs too. When she signs something and you respond to her, Abigail gets the biggest grin on her face – it’s like she is saying, ‘hey you heard what I said!’

And then we come to those legs. When Abigail was about 15 months I got her to stand and my mom snapped a picture. IMG_3679After that I could never get her to do it again. Plus, she was not ready or willing to do it. Now she is! Oh she wants to stand and pull up so bad. Her legs want to work, but they have no idea how to work. Abigail often stands on the side of her feet and her toes remain curled under. But I cannot even change her now without her turning to squirm away or trying to sit up. It amazes me how much she wants this. She is such a little fighter. Her body is literally incapable of sitting or standing, but that does not stop her. She groans and grunts and struggles to do it. Her arms have to be the most toned arms of any two-year-old. But she never gives up. She never stops wanting to try. She never quits. Everyday she learns something new. Everyday she amazes me. Everyday she fights. And that is amazing to me!


Bloom Where you are Planted

I love spring time. I love the newness of everything. How everything is turning green and flowers are beginning to bloom. How winter’s slumber is being shaken off, and life is awakening. Springtime just brings a pep in your step and a song in your heart. At least it does me. And goodness knows getting outside helps all those winter blues fade away. The weather was gorgeous today and I could not help thinking that springtime is coming!

I bought this cute springy shirt for Abigail a few months ago and it was perfect for today! Bright yellow with a huge flower on it! It instantly made me think of the saying, “Bloom where you are planted.” I’ve never thought much about it before, but that saying applies so much to Abigail. So today she wore her yellow shirt proudly, because Abigail is most definitely blooming where she is planted!

I was told my baby’s eyes were not normal at two months old. We instantly thought blindness, but today her vision is perfect! Yes, she wears glasses to help her eyes stay focused, but her vision is perfect. Abigail is known for those cute pink glasses, and countless strangers brag abt them. Even in the face of bad eyesight, Abigail is blooming!

First day in those pink glasses!

At four months we were told that Abigail had low muscle tone – hypotonia (they call it floppy baby syndrome). She has met zero milestones. She cannot hold herself up. Carrying her is like carrying a bag of potatoes. She is so heavy and does not help at all! She stays under the ten percentile because she has no muscles and muscles weigh more than fat. But despite all this Abigail is crawling! She has mobility. She is pushing up and she wants to stand so bad. She can sit with minimal assistance. She is doing things that amaze everyone. In spite of her diagnoses, Abigail is blooming!

Abigail cannot keep up with other children. They move too fast for her. Children her age are too advanced for her and run away before she can play. And children younger than her just want her glasses or her hair which scares her. But she is getting so much better around children. She has been crawling around with her nephews and they pass toys to her. In music class she is brave enough to get down on the floor and crawl around now. She is talking and laughing in class which means she is getting more comfortable around other toddlers. Even with her fears, Abigail is blooming!

In every area I feel like Abigail is blooming. She is becoming stronger, more social, and she is growing every day! Abigail has no idea that she is developmentally behind. She has no idea she is unique. She has no idea that she lives a very weird life compared to a normal three year old. She is one of the happiest children you will ever meet. She is smart. She is kind. And she is going to do BIG things!

I just feel like if this little girl who has so much against her can bloom where she is planted then we all can. I would never wish this life on any child. But I am a proud mama because even in the worst of situations and what life has to throw at her my daughter is blooming. She is a determined little fighter. She is fiercely independent and a little rebel at heart. All this makes her a force to be reckoned with. She is going to knock down barriers and is going to make miracles. Abigail will be able to bloom wherever she is planted!

Growing Up Slowly

When you have a child time seems to speed up somehow. In just a few short months Abigail will be three years old. Where has three years gone? I still remember being pregnant with her. I had horrible night sickness (my morning sickness always hit around 3 and stayed all evening). And around week 12 I remember having multiple thoughts that I was going to die at any point, but the only thing that kept me going was that I was growing another life, and her life mattered too much to give up. But here we are almost three years later and I am glad I kept shoving food down my throat after all because having Abigail was worth all those weeks of sickness.

I have no idea how parents of typical children do it though. I mean an average child is sitting by six months and is walking by a year. They start talking and being independent. They get sassy and push the limits and they know where every button of yours is. Your baby grows up in a blink of an eye! You might get a few cuddles here are there but after they are mobile they don’t sit still for long. Again I just don’t know how you do it!

We have been so blessed in a weird way that Abigail has grown up so slowly. I’ve never thought about that before, but it hit me the other day we are getting a small blessing in disguise. Don’t get me wrong I wish everyday my little girl could walk and run and play like every other 2 year old. I cry that she cannot communicate the way she wants to. But even in the bad things and the things that don’t make sense I truly believe you receive little blessings in disguise. Sometimes you don’t see those blessings while you are in the middle of the storm, but they are there. Abigail herself is my blessing. She is an amazing little lady! But the fact that, as a mother, I get to soak in every stage a little longer is amazing!!!

We had a newborn basically for about 10-12 months. For Abigail’s first year of life she really wasn’t aware of her environment. She just loved watching people’s faces. She had barely any head control and her muscle tone was basically none existent. She was exclusively breast fed, which was not my choice but she wouldn’t eat baby food very well so we did what we had to do. That first year was hard!! Abigail did not show a lot of progress. We had no idea what was going on. We had no clue how to take care of a baby, much less a baby that doctor’s kept telling us ‘wasn’t normal.’ The doctors kept telling us things that we didn’t understand or that we didn’t like. We loved our baby and she was the happiest, easiest newborn ever so it was hard for us to see anything ‘wrong’ with her. Around a year old she was still around 5-6 months developmentally, so I got to savor those newborn moments for longer.


Abigail around 7 months – she was still the sweetest thing you ever saw! But she had no interest in those toys you see. We always tried new things though.

Then her second year of life came and things started to progress. She became more aware of her environment, she started to like food, and she showed true potential physically. We began to learn we didn’t have to listen to everything the doctors said. We began to learn the system and find things that were helpful for us. We had amazing therapists that encouraged me and worked with Abigail diligently. But I was still able to savor those baby moments longer because she was around a 6-9 month old developmentally.


This picture means the world to me! Abigail was around 15 months in this picture. I left her on the couch to go get ready (crazy huh? but she never moved so it worked for us), and I returned to a smiley baby and an overturned bucket of toys! I snapped a quick picture because I was so excited! This was the first time Abigail had ‘played’ on her own!!!

Today, we have hope like we have never had before. Abigail is doing the best she has ever done. She is eating (and a lot of times helping herself) normal table food, she is moving, she is learning to play in new ways, and she is trying to communicate like never before. We are in such an exciting time! I feel so much more confident in what I am doing. Medically Abigail is healthy and at this point her doctor is simply trying to find the cause of why she is the way she is. But if they never give us an answer I will be okay because she is progressing forward every day.

Abigail is still only around a year old developmentally maybe 18 months in some areas cognitively. But if course she cannot sit or stand yet. But for almost three years I have gotten to savor what most parents only have 1 year to experience. It is like time has slowed in our house. This means we get to see the tiny little steps of progress and we celebrate the tiny victories. This means that sometimes the days are long! I get tired of having to lug her everywhere, because goodness she is getting heavy!! Sometimes it would be so convenient if she could sit because we could do so many more things. Sometimes I have to be creative while we are out, and about, and going to a bathroom with her in a public restroom when I forget the stroller is a trip. But I am savoring!

We may be in the toddler stage for a long time. Honestly, she may never leave it. We have no idea what Abigail’s future holds. I tell people all the time. Abigail has the potential to be a 100% normal 5th grader who you wouldn’t even know went through all this when she was 2. On the other hand she could be living with us forever because she never leaves childhood mentally. We have no idea what her future holds. But right now I know we are hitting the toddler stage hard, and after 2 years of being in baby stage that is tough on this mama. I’m watching Abigail grow and mature everyday. I see my baby growing into a little girl. She is beautiful in every way!! And while she might not be growing up like every other toddler, I appreciate that she is growing slowly. It gives my mama heart time to soak in every moment, every change, and every day with my little sunshine. While I wouldn’t have chosen this life for us, I am blessed to have a little one who is growing up slowly.

Our Little Puzzle

We went back to the geneticist today. We haven’t seen her since last year when we received the results of Abigail’s genetic test. After a whole year you would think the doctor would have a lot to talk about and questions to ask, but she did not. Last night before we left, I told Jordan either they would want us to do more tests or they would send us home with no more answers for us, and that’s actually what happened. Basically the doctor told us that there is nothing else she can do for us. Abigail’s genetic test came back with two abnormal genes. Out of those two genes one would affect Abigail’s muscles, however since her muscle tests and reflexes are all completely normal nothing matches us. The doctor even said today that she does not understand how the tests are saying two different things. If this gene is the reason Abigail is developmentally behind she should be failing her tests, but since she is passing everything they cannot explain why this gene is abnormal. It is all a puzzling mess.

This is not the first time a doctor has been confounded by Abigail. We have seen a lot of doctors and many of them scratch their heads at her. She is so far behind in so many areas, but her progress is steady and she is so social and medically great so they cannot pinpoint what is causing her delay. We have another MRI scheduled next week and another EMG to test her nervous muscular system the week after. Our neurologist is retaking some tests we have already done so she can have data to compare and make sure Abigail is developing and is structurally fine.

We are so used to doctors not being able to help us, and not giving us any answers that we no longer worry about it. When we first began this journey I would research for hours and cry when the doctors could not help us. We had a doctor tell us once that Abigail would never develop or outgrow her delay, and that was heart breaking as young parents who were lost in this process. But now I know that doctors do not have all the answers, and that they are not always the best in their field. I take what they say and do what is best for Abigail.

I have learned to trust my gut, and not let disappoint and worry overtake me. I try not to think about planning every detail of Abigail’s future and I am learning to take things in stride. When we found out Abigail would need glasses I was okay with that, but then two months later when the eye doctor then said we would have to patch her eyes too I almost started bawling in the office. How much can one little girl go through? How many tests will she have to endure before the doctors find the answers they need?

I dread going to doctors’ appointments now, and hearing they cannot help us. I dread hearing she is going to go under another test that will just come back normal. I dread Abigail’s future that the medical field will just want to treat her as a guinea pig because she is medical odd, and they love that. But I am so proud of Abigail and no matter what some doctor may say, or what some piece of paper may read, she is conquering things everyday! Yes, on a piece of paper Abigail looks like she cannot do much, but if you saw her every day you could see her progressing.


Getting casted for her leg braces. She hated every second, but we are excited to get her braces soon!!!

She is amazing how she is so determined. Her physical therapist and me always talk about how she wants to do more and how she wants to move and play and grow but her poor little muscles just do not quite know how to work. She is being fitted for leg braces to give her some support through her legs and ankles, and her stander is on the way. With all this support we are hoping we can at least get her up, and if we can get her up we are hoping she will love it and want to do more. It is one baby step at a time, and I love it. I love watching the tiny little victories happen everyday. I love watching her learn what she is capable of, and I love seeing my baby turn into a little girl.

Yes, I do worry about her, but not as much as I used to. Every parent worries about their child. But I know this little girl can do anything she sets her mind to. Will she ever walk? I am not sure, but if she does then we will cry buckets when we see that first step and if she does not ever walk then we will conquer other mountains that come our way. This is how I have begun to think. We have a mindset of what is normal. Babies should hit milestones at certain ages, children should be able to jump and run, and they should be about to talk and express themselves. But Abigail has taught me that if the normal does not happen then you can still survive.


Helping me in the kitchen tonight. She somehow got powdered sugar on her nose and it made me laugh!

Tonight I wanted to bake cookies for Daddy and for our therapists tomorrow for Valentine’s Day. I have always wanted my child to cook with me. I was so excited to have a little girl to play dress up with and cook. But Abigail can’t stand at the counter and help me stir the batter. She can’t sit at the table and place sprinkles on cookies and make a huge mess. But tonight she helped me in her own way. And she made a nice big mess for me! So no while she may never be my sous chef, she is still my kitchen buddy and I love it! She may be a puzzle, but God made a hole in my heart where Abigail fits perfectly!!!

Progress in Therapy

Abigail has been doing some exciting things in therapy these last few weeks and I wanted to share with the readers what was going on. We have been blessed to have some amazing therapists in our lives. Since we still do not have a diagnoses, I rely a lot on our therapists to help me know what I should be working on with Abigail at home. We started therapy when Abigail was just five months old, and I am so glad we started early! A lot of Abigail’s progress is due to her weekly therapy sessions. Right now we do two hours of physical therapy and an hour each of occupational and speech therapy each week. It seems like a lot, but it helps her and she really does enjoy it so I do not mind at all. We will most likely be adding more to her schedule soon too.

In speech therapy we are working a lot on pretend play, like ‘feeding’ stuffed animals and talking on play phones. Abigail is getting so much better at pretend play. She loves to pick up any toy and hold it to her ear to talk to it. Right now speech is simply a lot of playing with toys and different textures. As you play you just make lots of noises and play sounds. We are just trying to get her to make new sounds. She has the ‘b’ sound down pat and can also say ‘m’, ‘d’, ‘y’, and sometimes ‘p’ sounds. It is exciting to see her progressing in her talking every day. Most of the time Abigail just likes to hear her own voice, but it is still fun to hear her making sounds. Unless she is happily screaming away in the cart at Walmart and all the older people are looking at you. Thankfully she is cute so they all just laugh at her.

In physical therapy we have a lot of things going on. Ms. Hallie has been working with Abigail for about a year now, and to see where she was when we first started is crazy! We are working on getting Abigail up on all fours so she can crawl properly instead of army crawling everywhere. Would you know that Abigail actually gets up on her knees for Ms. Hallie! She never does that for me. That’s another reason I love therapy. Abigail works hard for her therapists when she doesn’t always do things for me. Hallie is also helping us get some equipment for Abigail. We are working on getting a wheelchair Abigail can manipulate herself and a stander to help strengthen her legs. It is exciting to know that she could be getting around on her own by the end of the year in one way or another!

Lastly, is occupational therapy. This is the first therapy we started and it is a really fun one! While PT focuses on gross motor skills like sitting, standing, walking etc., occupational therapy focuses on fine motor skills like hand grasp, writing, eating and so, so much more! They prepare children for life skills they will need. We just began therapy with a new therapist. We felt like the change would be the best for Abigail, and I am so glad we did. I was hesitant at first because the new therapist is a young guy, but goodness they work so well together. I have already had multiple other therapists tell me how well Abigail works with Kyle and how much he loves her. He is working with Abigail on her hand control and trying to get her little fingers to work independently and giving them more control. I am excited to see what Abigail and Kyle do as they keep working together. I am hoping she can learn how to feed herself with a spoon.

I am so thankful to have some amazing therapists who love Abigail and who Abigail loves too. When I say their names Abigail smiles form ear to ear, so she definitely knows who they are. I am not sure how much work they really get done with her because a lot of times they talk about laughing a lot or having dance parties, but it is good they have fun with her too. They help her and me so much, and they are truly apart of our family and definitely apart of our story now, as every therapists before them has been! The next few months has the potential to be huge for us! And when Abigail goes to preschool in the Fall she will get double the therapy there, so that’s even more potential for her to improve. I cannot talk enough about how much I love therapy! I know Abigail enjoys it too even though it is tough, she works so hard every session and I am so proud of her.





Our Tummy Time Adventures

Oh tummy time! I am not here today to write about the benefits of tummy time, or put my two sense into the debate. I know doctors and therapists will say some things and moms will say others. Today is just our story with tummy time, and the progress Abigail has made in her two and a half years of life. I personally have a love/hate relationship with tummy time. It was a lot more hate in the beginning, but that was because Abigail hated it. But today she rocks tummy time like a champ. Actually, I don’t know if you can consider it tummy time anymore for her. It is more like her way of life now. So funny how time changes things!

Abigail has never been a cuddly baby. Even as a newborn we would put her on her little play mat on her back and leave her in the living room while we went to fix lunch or dinner for ourselves. She was just content to lie there and stare at her toys, so that’s what we did. But around a month old she flipped over from her back to her stomach on her own. She only did it a handful of times for that week, but we were so excited for her! Thankfully we have a video of it because no one would believe that knowing  Abigail’s journey now. But she did not start rolling and flipping over again until she was about 9 months old and even then it was sporadic at best. This past summer is when the rolling and flipping became a permanent part of our lives (Abigail had just turned two in May), and bedtime became a thing of the past.


Abigail, 8 months – tummy time was quite a struggle even with our fancy equipment.

We began therapy with Abigail at five months. Of course, her therapists loved and encouraged tummy time. But at this point of Abigail’s life she had zero head control, so tummy time was a struggle. Abigail’s head would just bob uncontrollably until she just could not take it anymore and start crying. Tummy time might have lasted 2 minutes at a time. It was a rough time for poor Abigail. She hated it! She would much rather prefer being on her back or sitting on the couch. We tried everything from boppy pillows, tummy time pillows, toys to try to encourage her on her tummy, but she just was not having it. At this point Abigail was not interested in any toys or her environment really. She has always loved people, so we could make her laugh and giggle and that’s about all she liked to play with was other people.


Abigail, 15 months – tummy time was not as much of a struggle but she still couldn’t lift her head up fully.

Finally, around a year old she had pretty stable head control so tummy time became a little better, but it still was not great. But she could more easily play with toys and tummy time became a little better. It was not until she learned she could have some mobility this past year thought that tummy time became Abigail’s favorite position! It all started with learning she could push on her scooter board.


Do you think she liked her scooter??

Then she learned to push herself backwards, and it was only a matter of time that the army crawl was founded. Today, she practically lives on her tummy. After she eats breakfast until the time she goes to bed, she is on her tummy all day playing, moving, and exploring. It is the best way for her to play for now since she cannot sit up, and the only way she can get around. She loves being on her tummy. You would have no idea that two years ago tummy time was a taboo word in our house – that this little girl you see could not even keep her big ole’ noggin off the ground for more than two minutes.

I know that crawling around on the ground is not the end goal. I know that constantly being on her tummy is not good for Abigail’s digestive system. I know that it would be so much better if Abigail could sit and play. But to see her progress these last two years is amazing. If you had told me that Abigail would one day love being on her tummy I would have laughed at you two years ago. Yes, we have a long ways to go, and we will keep pushing Abigail. We struggled with tummy time for so long, but the therapists kept saying it would help her strengthen her neck and core, and would you know that it took months and months of tears and struggles but her neck and core are so much stronger now. Hard work is hard, but goodness that little girl is a fighter and I am so proud of her. I am proud of her struggles and her triumphs. I am proud that she does not give up. I am proud of her stubbornness and determination. I know we have a lot more to achieve, but it is nice to be able to say that Abigail now rocks tummy time! If she can conquer this than what else is she capable of???


Today, you can barely get Abigail off the floor while on her tummy. She loves tummy time, playing, and having mobility!!