Let’s Take a Step Back

We have been with Abigail’s physical therapist, Hallie, for over 18 months now. She loves Abigail and we love her! But last week she said something profound that made me take a step back. Abigail has gotten her ‘yeah’s and ‘nah’s down very well! Today, Hallie was working with her and everything was ‘yeah’ until Hallie asked Abigail to do some hard work. Then Abigail responded with a clear ‘nah.’ She can be a bit sassy at times. Hallie still tried to make her walk with her walker, but Abigail just wanted to pick it up and play with it. Hallie was thinking about how to get Abigail to stop and focus on working when she took a step back.

She told me, “Look how much we have put this girl through these last three months. In just a few short weeks Abigail has received leg braces, a stander, and a wheelchair. She has started horse therapy. She started taking steps. She is communicating more than ever. And that doesn’t even include all the work she is doing for occupational therapy. We are all so excited about her progress that we keep pushing her to do more and more. But Hallie asked, “why don’t we take a step back and let her soak in all she has learned instead of pushing her to do even more?”

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We love seeing Abigail doing new things. We love challenging her and teaching her new tricks. We love stretching her to see what all she is capable of, but Abigail is not capable of saying ‘stop’. She cannot tell us to slow down. So we decided as a team to let Abigail have this month of July to breathe a little. Instead of introducing anything new we will simply work on the skills we are already working on. We want to give Abigail a firm foundation before we continually place new challenges and goals on her. In all our excitement for new and getting to the next step, we forget to slow down and let her catch up.

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She pushes Pink Streak all over the house now. My mom got her the cutest, tiniest gloves ever to use with her chair so here we are practicing with them!

I am so glad Abigail’s therapists can come to me and we can work through these things as a team. I love having a team! Without Hallie’s step back, we would all have missed an important piece of the puzzle. The enjoyment stage. Taking the time to enjoy all the accomplishments and victories Abigail has won these last few weeks. We all forgot for a little bit that it is okay to sit back and rest. It is okay to sit back and take in all that has happened. It is okay to build a strong foundation. It is okay to enjoy the journey. And I am thankful I get to enjoy my daughter’s journey, for it is quite amazing to see where she has come lately!

We got braces simply for her to bear weight through her legs and hips. Next things we knew Abigail is up and taking steps. We got a wheelchair for her to go to school. Little did we know that she would be learning to push it herself the day after we got it. Abigail’s legs and arms are getting so much stronger! She is trying so hard to get on all fours and crawl. She is communicating so much better, and picks up on things instantly. She is so smart, and completely understands what you are saying even if she cannot fully respond. She is sassy, and ‘runs’ away from you now. She thinks she is hilarious and will joke with you. She cries when she does not get her way, and she loves to be the center of attention. In so many ways she is a typical toddler, and I am so glad!

I am excited to build all these skills Abigail has this month. I am excited to have fun with her and just spend time with her. I am ready to enjoy watching my child learn and develop. This is my last month with her before she starts preschool in August. She starts August 1 at a special needs preschool in our local elementary school. She will go every morning and get extra therapy there. I am so excited for her, but so nervous too! So this month we are just going to have fun and enjoy our last month of summer. I cannot wait to see what Abigail is capable of, but I am thankful for times to step back and enjoy the journey!

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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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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.

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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.

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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.