My Three-year-old

Three years ago I was a nervous wreck. I was going in the for my scheduled induction. I was happy as a clam that there was no guess work about when Abigail may or may not come. But I had also no idea how inductions worked, so I googled them the night before. Bad plan. I think I read about 10 horror stories before bursting into tears in total fear. Jordan had to steal my phone from me and make me go to bed. Needless to say I didn’t get much sleep that night.

Abigail’s delivery was a lot like her actually. Steady but slow. The room was never chaotic. It was actually quite a boring process looking back. Then the moment came for her to enter the world. I was one push from having a c-section. The song from The LEGO Movie came on, “Everything is Awesome.” I made my own play list and it really is a fun, upbeat song and I love cheesy. I honestly wasn’t listening to anything at this point, but Jordan said that’s what was playing. It was an appropriate song for Abigail. And she entered the world with one tiny wail, and then she was here. All seven pounds of her tiny little self. The only thing I remember was those big blue eyes looking around intently. It’s funny because Abigail’s vision is what started our whole journey into he special needs world, but at that moment her eyes were perfect!

 

That day was three years ago now! May 8, 2015 at 6:19 PM this girl made her appearance. It’s been three years of having this girl in my life, and I had no idea I even needed her. I didn’t want to be a mom. I still struggle with that calling from day to day. I never dreamed of having babies. But God knew I needed this little girl. He made her perfectly, and blessed us to care for her. It’s been a crazy three years. We have moments of extreme joy and moments of great sadness. Abigail has changed me and my world. She has turned all my plans and dreams upside down. She continually challenges me and shows me my faults and failures. And I love her for it!

I love the way she randomly talks to you like she has so much on her little mind.

I love the way the wind blows her hair and she tries to get it out of her face.

I love the way she thinks she’s so independent and watching her figure things out.

I love that she loves to share and is so social.

I love it when she wraps her arms around my neck.

I love it when she gives her daddy love taps in the morning to wake him up.

I love watching her do new things and being amazed at her progress.

I love it that she loves books and wants to learn.

I love that she’s adorable and literally looks cute in everything.

I love being a girl mom, and staying home with my little one.

I love seeing the excitement in her face when she recognizes what you’re talking about.

I love that my baby is growing up. It breaks my heart, but I am thankful for the progress this year has held. A year ago Abigail couldn’t even move herself. She could barely roll over and had no mobility. She had no way of feeding herself, and she never really made any sounds. She had no preferences. Today she is like a new child. She is completely mobile by army crawling and is even taking steps. She is feeding herself and even learning how to use a fork. She ‘talks’ all the time, and is trying to form words. And that girl will tell you if she likes something or not. Her sassiness is coming out full swing! But that means she is developing normally!!!

Abigail is blasting through goals and expectations. Her therapists are always amazed at what she can do. She is moving mountains, and progressing so steadily. It’s amazing to be a part of her journey and see how far she has come. I made a little video on YouTube about her year this past year. On it, you can see how far she has come, and all the sweet memories from this year. It’s a little long, but if you’re interested in watching it here is the link.

Today starts our year of being three. This year has such great potential already. Maybe this will be the year of a diagnosis. Maybe Abigail will learn to swim in the pool this summer. Maybe she will take steps on her own. Maybe she will sit. Maybe she will form more words and put some together. But I know she will learn a lot. She will go to school. She will make new friends. She will achieve so much! I’m not sure what this year of three will bring, but I’m buckling up for this amazing ride!!!

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We had to start this year of three with some Icedream!

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The Story of our Life

“Well you may be a little disappointed today.” Those were the doctor’s words today after I told her we were anxious to have some answers. We went to our Neurologist today to check in about all Abigail’s tests last month. We were hoping between the MRI, EMG and the muscle biopsy that we wound have an answer and a diagnosis. Well as the doctor said we were a little disappointed, but we definitely were not surprised.

When we had the EMG test done the doctor was positive that Abigail had a genetic muscle condition of some kind. Hence, why the muscle biopsy was ordered. However, the biopsy all came out clear. They found no evidence of any muscle condition like muscular dystrophy. That is a great thing! Another thing ruled out for Abigail. However, she will always have a scar on her arm from where we have tried to discover what is going on with her.

So now we are on to more tests and praying for some kind of answer for Abigail. It really is not for our sake. We do not need a diagnosis. We are getting Abigail the best help we can and are doing everything we can do. Even if she had a diagnosis it would not change a thing that we are doing. However, without a diagnosis you cannot get services and help you need. It will especially affect Abigail as she begins school. Without a diagnosis a lot of her therapies will be no longer available and services will not be offered. Everyone requires a diagnosis before you can receive what you need. It’s awful, but it is how the system works.

The next step in Abigail’s journey is more DNA testing. Now they are leaning toward her having a mitochondrial disease. This is a brief explanation from the United Mitochondrial Disease Foundation, “Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support organ function. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole organ systems begin to fail. The parts of the body, such as the heart, brain, muscles and lungs, requiring the greatest amounts of energy are the most affected.  Mitochondrial disease is difficult to diagnose, because it affects each individual differently. Symptoms can include seizures, strokes, severe developmental delays, inability to walk, talk, see, and digest food combined with a host of other complications.” This is as far as I have looked into it. I have learned not to research too much until we have an answer. If I researched everything they have guessed that Abigail had I would be a worried mess!

So here we are again with zero answers and a hazy direction to head. That’s the story of our life. Abigail has always been a puzzle. From the beginning the doctors had no idea what to do with her, so they have been blindly guessing what to do. Nothing much has changed. We know she has severe developmental delay. We know she has hypotonia (low muscle tone), nystagmus (shaking of the eyes), and now her MRI does show her cerebellum has atrophied a little from her last MRI when she was just 7 months old. It’s nothing too major since she is progressing, but it just gives the doctors another clue to follow in their long search of answers. But for now we will keep doing what we are doing, and prayfully Abigail continues to progress steadily. Progress is what we want! Regression has been a threat from the beginning (it always is in special needs children), but so far we haven’t seen any!! So keep praying the doctors have wisdom of what we should do. Pray these genetic tests maybe show something to help us. We go back in August for more answers (hopefully). And pray that Abigail continues to progress day after day. Living in the unknown has been our life and continues to be, but we have faith in our little girl. A diagnoses won’t define her. A doctor’s prognosis won’t hold her back. She is defying the odds and is a fighter. She is making this her story and I am just blessed to be able to share it!

Dirty Soles and Knee Holes

I think we have official hit toddler-hood around here. We have had hints of it here and there, but I can officially say we are there. Abigail will be three in about two weeks, and she is going to be a full-fledged toddler. Usually toddler refers to babies who are toddling around and learning to walk. Toddler hood can mean some fun adventures as children get more and more curious. It can come with some defiance as the child is learning independence. It can be a hard time for the parent as they enter into a new, challenging time. But it is also so fun to see your child learning and growing into a little person with their own likes and dislikes and attitudes and personalities.

Well we have hit toddler hood head on! We have a little girl (my baby girl) who is taking steps and trying to be Miss Independent. She is learning to say ‘no’ and is pushing our buttons. She gets into things she shouldn’t and squeals at us if we aren’t doing things her way. She loves trying new things and being asked questions. She is learning she cannot do everything she wants. She can’t pull our hair or rip our glasses off our face – two things we are trying to get her to stop!

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She loves to push this bus around the house – this is her helping me “cook” in the kitchen…really just getting under my feet so I sent her under the table to play

It’s such a fun stage, but it is all new for us. We have to actually parent. I know that sounds awful, but Abigail has always been so easy and has never gotten into anything so we had an easy job of just taking care of her. Now we have to step up our parenting game and teach her right and wrong. She hates being told ‘no’, so we are working on finding ways to redirect her. We are working on how to discipline. But I don’t want to make it sound like she is awful. She really is as sweet and joyful as ever! She is just a toddler – into everything and learning her boundaries.

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That precious smile and dirty pink shoes!

But what I am most excited about in this stage is dirty soles and knee holes. Abigail’s shoes are dirty! Her pants have wear and tear on them!! We don’t wear shoes a lot around here. It’s not uncommon for Abigail to go barefoot to restaurants and stores. I never see the need to wear shoes on a child who will never touch the ground. Shoes are more for warmth than for actual purpose. So her shoes look brand new! Her pants and clothes look brand new too because she never sat and crawled and got dirty. Until now. Her little tennis shoes that go with her braces are dirty! We have been doing a lot of walking in our neighborhood and her shoes show her hard work. Her pants are getting worn where she has been crawling around so much. She has boo boos all over her. Bruises and cuts from crawling around. We had to put on our first band-aid yesterday. It lasted about a minute, but it was our first real boo boo.

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Looking at her boo boo

My almost three-year old is an official toddler! I have no idea how to parent a toddler. I have no idea how long we will be in toddler hood. But I plan to savor every day of this new chapter. My baby girl is growing up. I am excited what her chapter of toddler hood will bring. What mess she will get into or what she will get in trouble for. What her little mind will think of and how fast she will learn new things. I am excited to she her grow stronger and walk more and more. My back is giving out before her legs do now, and that’s scary! I want to keep up with her, but she is literally lapping me. This new chapter will be amazing to watch unfold, and I am thankful for those dirty soles and knee holes!!!

Motivated Progress

I’m putting together a vision board of sorts for Abigail. We go to her first IEP meeting next month as she gets ready to begin preschool in the Fall. I want to begin Abigail’s education right and let the teachers know what she is capable of and my hopes and dreams for this girl. She has such potential and I want to give her a strong foundation. Just because she can’t speak and doesn’t know her colors or her ABC’s yet doesn’t mean she doesn’t deserve the best education! She deserves to be fought for and have some goals to reach as she matures and grows.

I want a lot of things for Abigail just like every loving parent has dreams for their child too. Abigail has such a sweet little personality that is blooming every day. I want to build up her strengths and fortify her weaknesses. She is stubborn and she thinks she is very independent. But I love that about her. I love that she has no idea that she is unlike any other (almost) three-year old. I like that she is running her own race and is blowing the socks off the competition! Abigail loves to try new things and to be challenged. It helps her grow.

That’s why I love coming up with new ideas to do with her, or making lists of new things for her to learn or new skills to achieve. Right now a big thing I’m just starting with her is how to operate an iPad. She is beginning to love phones and playing with them so we think she is ready to start learning how to use it. Let’s face it in this world she will have to know how to use technology or she will be even further behind. If she ever receives a communication device it will most likely be an iPad that she uses. So we are going to start teaching her how to play games and how to scroll and point and press the buttons correctly. I know these are such simple things, but with Abigail you have to teach and show her every little step. Before she can play games and learn on the apps she first has to learn how to manipulate a screen.

Every new skill for Abigail is a process. A long, long process. So many of you have seen the pictures lately of Abigail taking steps and standing. But you don’t know the work that goes into getting her to do that. Abigail has very little core muscle strength. She still cannot sit on her own or stand on her own. She has to be supported in all she does. For her to take steps or stand you have to hold her core for her or she leans against something. When you are holding her to take a step you can feel her entire body tensing up to prepare to take one step. It takes all of her to think about what she has to do and after about 20 steps she’s done. These tiny little steps are just part one to a very long process of Abigail ever walking by herself.

It’s so fun teaching Abigail new things! It’s fun to see her catch on. Some things she picks up on after seeing someone do it once or twice. Like a new sign in sign language or snoring. Other things she just cannot get to save her life. Pushing a ball for instance. Her OT has been working on it, and we have been trying to show her for months. She just does not get it. She likes to just pick the ball up and bring it over to you herself. It’s just one thing we keep working.

Abigail is great at letting you know when she is ready for something new. We never rush her into anything. And I try my best not to put too much on her or introduce a new skill she isn’t ready for. Her PT said it best that if Abigail wants to do something it will be so much easier for her to pick it up than us forcing her to do it. Hence why we got the leg braces because she wanted to stand and pull up so bad, and now she has a way to. But I have a list of things in the back of my mind always that I want to work on and her therapists have their goals they want to reach. I am excited that when she starts preschool in the Fall that she will have more new things to work on.  We love progress around here! We love new challenges. We like to see this little girl work so hard and yet smile and have so much fun doing it. She is what keeps us going. She keeps us on our toes because if we stop then so does she. I want her to fight and grow and learn everyday. Abigail has the potential to amaze us and make miracles happen. She just needs help to do it. Because while she could never be walking on her own, with lots of support she is moving forward inch by inch! I love being her support, and we are blessed to have so many hands supporting us as we travel this road all together.

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Thank you for loving us and encouraging this little precious one every step of the way! We could never express what having each of you in our lives means to us!

Inch by Inch

Most babies achieve milestones from early on – smiles, gaining head control, eating baby food. Then you move onto the gross motor skills from sitting, rolling, standing and walking. These are all huge victories that should be celebrated. Your child is growing up and developing, and it’s exciting to see them catch on to new skills so quickly as their little bodies and minds learn.

Milestones and us do not get along very well in this family. Abigail has not hit very many. By about a year into our journey I quit waiting for milestones. I learned not to be hurt at doctors’ offices when the paperwork asked when my child had first sat up, walked, etc. and I had to leave it all blank for my almost two-year old. Miles are too big a measure for us, but if you could measure Abigail in inches then you could see the huge, massive amounts of progress she has made. Abigail may not be able to walk miles, but goodness knows she has crawled and fought and inched through some achievements of her own.

But today all those inches she has come are paying off big time. All those moments of tiny victory inches are growing into feet and miles of hard work. Abigail began by pulling herself along on a rolling board last summer, today she is taking her first ‘steps.’ Her leg braces allow her to stand and with help she can take steps. She has no idea how to walk or what that motion consists of, so we have a lot more inches to go before she is standing and walking alone. But we have STEPS!! Every single one of those awkward, stiff steps is beautiful.

Abigail has made leaps and bounds in other areas too. Feeding, talking, and cognitively she has improved greatly. Her tiny inches are catching up. I love that she takes tiny inches to get to the end goal. It helps me savor every second and every tiny victory. But these steps are sweet icing on the cake of achievements.

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Just like this tiny inchworm inches his way slowly down my hand, so Abigail will slowly inch wherever she needs to go. Abigail may not be the fastest, but she is a determined little soul who is so eager to learn and try new things. I am so thankful she is willing to be stretched and challenged. My determined little inch worm is going to do some BIG things! So keep watching her and keep cheering for her!

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.

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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!

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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!