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


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.

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!!

Goals for Abigail

I have mixed emotions about the new year. I love the excitement of beginning fresh and dreaming about what another year holds. But resolutions and goals stress me out. I’ve always preferred calling them things I want to do rather than goals. I know that’s silly and the same thing in reality but the word goal makes me shrink away. Because often I don’t meet these said goals I set for myself, and I hate failure. But every year I list some things I want to achieve in the different areas of my life – marriage, family, children, personal, ministry, relationships, etc. I’m pretty excited about my dreams this year and I am trying to make them more practical to do since I’m a busy mom. I’m not going to share with the world all my expectations for the year, but I thought I would share the ones I want specifically for Abigail.

I know these are lofty dreams, but if you don’t aim high then what do you have to work for? I am still developing plans on how these dreams will be achieved, but I am praying this is another year of big progress for us! Abigail has come so far and it only shows that she is capable of doing great things! I am still learning how to teach her and how she learns best, but we are learning together and that’s fun!! But here are the four goals I have for Abigail this year.


Us from a year ago. Just having a lazy day playing in our bed. Here’s to more family days together!

1.) Monthly Family Date
Of course, I want to date my husband more and we have plans in the works to make that happen, but I think it’s so important to spend time as a family too. I love dinners around the table when we are all home and adding in a monthly family date night will be so much fun!! With Abigail we can’t do as much as we could do with a normal toddler, but I still plan to make the monthly activities fun for us all. January’s family date includes making our on pizzas and decorating cookies. Nothing crazy but we never get to make a mess all together and then we get to pig out on delicious food after it’s all over! Pictures will be coming. This is one of my favorites goals!!

2.) Being more intentional with my time with her
A lot of times while we are playing I pull out my phone and check social media or I watch television while we pass toys back and forth. Even though I am physically present, often my mind is a million miles away. I want to be more intentional with our playtime. Play time is where children learn a lot and I want that time to be meaningful to her and to me. I want her to know she is more important than a mindless sitcom or what so and so just posted.


We love our therapists and we are excited to gain some new ones and find some new doctors!

3.) Find doctors and therapists that can help us
This one has been on my heart for awhile now. We are in a rut with our doctors and it’s time we change things up a bit. No one is helping us, and I believe they have no idea what is going on with Abigail so instead of saying that they are just dragging their feet. So it’s time to find a new neurologist who can give us some direction. And a lot of moms I have talked to have given me suggestions on other types of doctors who could help us too. So this year it’s my duty to research and find new doctors to try to get some answers for my little girl. Also, I want to try to get her into aquatic therapy! I think it would be fun and the benefits would be perfect for Abigail. We are also starting with a new occupational therapist this year and I am excited to see how that helps her too! Just a lot of needed changes happening in 2018.


Fun crafting from 2017. Looking forward to learning more fun things with her in 2018!

4.) Make weekly lesson plans and focus on key things I want her to learn
Abigail will be three in May, and she still has so much she needs to learn. We are so focused on getting her to sit and hold toys that she never hears colors or numbers or animal sounds like a typical toddler. I know it’s a long stretch for her to learn these things, but I want to start introducing them to her on a more regular basis so at least she will be familiar with them. This year I plan to make ‘lesson plans’ of sorts each week so I can focus on different things we want to learn for that week. Repetition is key! Again, I have no idea what I am doing, but I just want to have fun and spend that intentional time with Abigail as I try to prepare her for preschool and kindergarten. So here are some things I want her to learn this year or at least be familiar with.
– Animal sounds
– Identify colors
– learn to color
– Know her age(hold up fingers)
– Know 15 signs in sign language
– Know family names
– Say real first word
– Stack objects
– Sit for 5 minutes
– Bear weight in legs
– Feed herself with spoon
– Drink by herself

Her Stubbornness

Stubbornness runs in our family. My grandparents were and still are entrepreneurs, making glass wind chimes now for over 40 years. Jordan’s grandparents are still active and going and his grandfather still works 8-5 at his job at 72 years old. The stubbornness shows itself in our parents as well. And goodness does it show up in us! We can never decide on who is more stubborn between Jordan and me because we are too stubborn to admit who is more stubborn. We are a mess! So then you have two very stubborn people make a baby, and guess what? That baby is as stubborn as both parents put together.

Stubbornness is often seen as a bad thing, and often it is. It prevents you from seeing the other side of the argument.  It keeps you from listening to wise council. It stops you from enjoying things you could otherwise enjoy. But as stubborn as Abigail is, I am very thankful for that quality in her. Sure it is annoying when you try to tell her no and she just keeps doing what she was doing while laughing in your face. Sure I would like her to actually do what I say instead of what Abigail wants to do all the time. And sure we butt heads a lot and I get very annoyed with her. But that stubbornness in her is what makes her a little miracle child.

Let me explain. So our journey all began at Abigail’s two month check up. Everything was great and we had a perfectly healthy little baby in our arms, except the doctor told us he was very concerned with her vision. We knew she had wonky eyes, but we figured all newborns had poor vision, well apparently not this bad. Here are some pictures from Abigail’s first year. You can see how she constantly looked up.

We saw two eye doctors and one neurologist at this point and none of them could explain Abigail’s vision. But by 18 months her eyes had corrected themselves with no help from anyone. Her eyes simply came down by themselves. We worked on some tracking exercises and things like that with her OT, but that’s it. Her eyes still get cross eyed and a little shaky today so that is why Abigail wears her glasses, but compared to how they looked when she was 3 months old her eyes look perfect.

Her stubbornness is vital for Abigail because without her motivation to want to move and play and be little Miss Independent she would not be improving. Yes, her therapists are amazing and I am beyond grateful for each of them. Yes, working with her at home helps. But it is Abigail who wants to pull herself around. It is Abigail who wanted to start feeding herself. We tried for almost two years to make that kid feed herself and she never would hold a scrap of food, and then one day I just laid some goldfish on her tray to feed her and she picked them up and put them in her mouth like she was a feeding expert. Until Abigail wants to do something she does not do it. I know she can get herself around and I try to make her pull herself if I just go in to the next room. But she refuses to move until she wants to.

I truly believe if Abigail has a will she has a way. If she is willing to work and move and play then she does. She has shown that these last few months. Her awareness and wanting to move around has come out of no where and now she scoots and pulls and plays like never before. I still do not know where the motivation to move came from, but I wish I knew! But when the day comes for her to be ready to stand on those wobbly little legs of her I know she will be stubborn enough to figure out what she needs to. I always tell people that for being one of the most dependent toddlers in the world, Abigail is the most independent little thing you will ever meet. I know that spells trouble for Jordan and me as she gets older, but for now I love that she is a little stubborn, independent little blonde headed ball of motivation.


believe girl

Finding Our Voice

Last night we went out to dinner at a local Mexican restaurant (a family favorite around here). After Abigail finished eating, she played in her highchair and talked and talked. And boy, is that girl getting loud! At one point I went to the restroom which was in the back of the restaurant. I could still hear Abigail as I walked into the restroom, and she was in the very front of the room. I told my mom the other day that Abigail does not understand what an inside voice is. I think she has discovered she can make noises and she loves to hear herself. But we like it too! They are just baby babble noises, but they are cute and happy just like Abigail.

The funny thing about Abigail is that she rarely talks while we are out and about. Most people would think she was shy, but I think it is because it is such a big world out there. There are lots of people to take in and things to process, and her little eyes and brain love to observe and take everything in. There is no time for talking when you have so much to observe. But even though she does not let her little voice ring everywhere, she still flashes that cute little Abigail smile to all who talk to her. She’s got the head tilt/smile down pat!

As she gets comfortable around you Abigail will talk more and more. So I know she feels the safest at home. But the most amazing thing was that this week in Music Class she actually talked some. It was just one quick loud babble. I’m sure no other parent even heard her, but I did. She was down on the floor wiggling around and let out a cute little noise while we were all singing. It made me so happy because it means she is getting more comfortable there even among crazy little toddlers. That’s a BIG deal!! I’m excited to see if she will keep ‘singing’ and talking more as we continue to go every week.


Playing in Music Class.

Abigail is definitely the loudest at home. After dinner is her crazy time, and she loves to wiggle around and talk to us. I just cannot believe how loud she can be! She is truly finding her voice, and hopefully that voice will turn into sweet little words one day. I want to hear all she has to say and see what she is learning. I want to see her explore her world and watch her express her emotions (yes, even the bad ones). I want to know what she is talking about and what is going through her head. It is funny how what you say and what you talk about shows so much about your personality. I have had lots of time to observe a little girl who has no communication. I can tell you a lot about her and her little joyful personality, but I really don’t know how completely because I can only presume to know what she is thinking. There’s a 50/50 chance I am right or wrong. That’s a scary thing.

So far we don’t have any real words. There’s some ‘ma ma ma ma’s’ and some ‘da da da da’s’ mixed into the babble. Every once in awhile she will say bye at the appropriate time. That’s the cutest with her little backwards wave! But that’s it. But goodness the babble talk is exciting. She wants to talk so bad and she loves to hear herself. But while we wait for words to come we will enjoy the babble. Our speech therapist is helping us learn sign language and giving us ways to help with her speech. When they are this young with no sounds, speech therapy is a lot of simple play. I am so excited for Christmas this year and all the new toys we will get. I think she will love having new things to play with even though I’ll have to teach her how to play. But all these toys will help with her speech and that’s exciting. So here’s to learning new things every day and to trying to get this cutie to talk more and more!!