How Abigail Learns

We began occupational and physical therapy when Abigail was just 5 months old. At that point we had no idea what we were in for. We had no idea how our journey would proceed. We simply knew we had a little baby girl who the doctors were telling us was way behind in muscle tone. Abigail was our normal and still is. We had no idea a five month old shouldn’t be doing these things. Thankfully we had some great therapists who helped us learn what we should be doing with Abigail to help strengthen her little muscles.

Abigail has always been progressing forward but at the slowest rate you could ever imagine. The last time we went to see our neurologist she asked how Abigail had been doing. I was so excited to tell her about all of Abigail’s progress in the months we hadn’t seen her. But putting it in words seemed so dismal. “Well she can kinda roll over now and she is making more noises.” It just didn’t sound that impressive, but if she could just live with Abigail for a few days you can see her huge strides of improvement. But to strangers Abigail is still a two year old who can’t sit, stand, walk or talk.

So how does Abigail learn? How does she get stronger? Repetition. Repetition. Repetition. We have been doing the same things with her from the beginning it feels like. Sometimes things click right away. It only took her a couple of times to learn how to fist bump and wave bye-bye. Teaching her a new sign for sign language usually only takes a few times as well. Now she does not correlate that the eat sign means she is hungry, but if you ask her if she wants to eat she does the right sign so we are getting there. But feeding herself has taken 18 months. We have tried everything, and then one day out of the blue last week she just picked up her goldfish and ate it perfectly by herself. I am not sure why she catches on to some things instantly and other things she still does not get even though we have been working with her for months.

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Either way, we have to be intentional with Abigail. And slow. You cannot ask Abigail to do something and then walk away because she did not do it. Chances are she will do it as you turn your back. Her processing time is slow. So it takes her a minute to wave bye when you tell her to. You just have to give her a chance to listen and process what you said. I like this about Abigail because it has taught me slow down. I am a rush, rush, rush kind of person. Having Abigail has taught me to pause now and then.

Abigail is a smart cookie. I think my husband put it best. Abigail is more and less than meets the eye. Let me explain. When a stranger first looks at Abigail he or she probably thinks she is a normal child. Then I tell them that she has special needs and cannot sit, walk, talk, etc. So then Abigail becomes a special needs child who cannot do anything in their minds. But she is so much more than her disabilities. Sure she cannot sit up on her own, but if you ask her to dance, point, find her belly, or laugh she can follow your instructions perfectly. She understands what people around her are saying, and I swear she can sense people’s emotions. She definitely knows when Mama is leaving and her physical therapists has told me multiple times what an amazing little sense of humor she has. Abigail is pretty fun to get to know and everyone who has spent more than 10 minutes with her just loves her!

Abigail’s processing time may be slower than others, she may not be able to physically compete with another toddler her age, and she cannot communicate with words, but everyday she is learning and growing in her own way. At five months old Abigail barely even cared about the environment around her. She could care less about toys or food or anything really. But to see where she is today, even from where she was a year ago is amazing. She loves her toys and gets so excited when her therapists brings out her big bag of them now. She is ‘talking’ up a storm and is wiggling everywhere. Her head circumference is in the 94 percent tile (her weight is only in the 10th) and we always joke about her huge head. But maybe it is just holding all those smart brains up there. I love watching her learn and I cannot wait to teach her more!

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We are on a Move

Well folks she is off! Well kind of. Abigail will not be winning any races soon, but she is moving. It is exciting to say the least. She can flip herself over, and she loves tummy time now. That in itself is a huge deal. Tummy time has been a struggle for us from the beginning, but lately she will stay on her tummy for an hour at a time. She can pivot around any direction she chooses. And she can push herself backwards like a champ. We are even starting to see her wanting to come forward. Her little legs are trying their hardest to get under her, but they just do not quite know what to do yet. Abigail has never used her legs a day in her life, so the fact that her legs even are attempting to do something is a miracle. I know this does not sound that impressive on paper. I mean we have a two year old who still cannot sit, stand, walk or talk on her own. But if you could have seen her even 6 months ago, the fact that she has this much mobility is amazing.

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Our little leap frog, learning to push herself forward!

To say we are excited would be an understatement. We have been waiting for some mobility for, well two years now. And Abigail loves it! She rolls and scoots and pivots everywhere now. I love just setting her down with her toys and watching her play. Every parent loves when their child reaches milestones. You smile the first time they sit, and cheer when they take their first step. A sense of pride just wells up in your heart. But imagine that your baby never sits on their own even when they are 9 months old. Imagine seeing other babies your child’s age crawling and walking while you are still trying to just get your child to play with a toy for a minute. It is very discouraging. We have waited for this for so long, and to see her with this limited mobility is huge. It is even more rewarding when you have to wait for things to come.

And while we are excited about her moving and growing in strength, we are trying to teach her there is a time to play and a time to sleep. Abigail believes sleep time is play time. She wants to wiggle and roll and play when we lay her in bed. It is cute but when it’s midnight and she is still rolling around it becomes not too cute. I am exhausted. She is exhausted. These late nights are wearing on both of us. We have taken her mattress out of her crib and lay beside her now and literally hold her down to keep her from wiggling. We are trying to teach her that bedtime is bedtime. Last night it worked. She was asleep within 30 minutes as opposed to the 2-3 hours it takes usually. Now we just need to get a bigger mattress and I think she may just learn to put herself to sleep.

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How I found her one morning this week. She was dead asleep, but had managed to turn herself around and still perfectly land on the pillow. How?

If you would have told me six months ago that this girl would be keeping me up until all hours of the night because she would not stop moving I would have just rolled my eyes at your positive craziness. But that craziness is coming true! Just today I was talking with Jordan, and he said, “Maybe this girl will learn to walk after all.” Just maybe we will have a child who will be mobile. We still have a looong ways to go. Right now a snail could beat Abigail in a race, but the fact that she is so motivated and excited to move means she will keep trying. Abigail will keep learning. She will only continue to get stronger, and maybe just maybe we might have a little crawler in our hands.

Now here’s to baby proofing our house. Yikes!

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Baby Steps of Intentionality

Be intentional!

It has been one of my life mottos for awhile now. I think I picked it up while working on camp staff at summer camp for a couple of years. It applies to a lot in life. Be intentional with your relationships, your work ethic, your faith, your self-care. The list is endless. So often I tend to get into my routines and I begin to just float through life. But by reminding myself to be intentional with every moment, I am reminded that I need to be fully present and aware in everything I do. Floating through life without being intentional with your thoughts and actions quickly leads you to places you never thought you would be. It can lead to discouragement, defeat, purposelessness, doubt, and fear. A little intentionality every day can make your whole outlook on life so different!

If anyone has taught me to be intentional it is my daughter. From day one we could lay Abigail down on her play mat and just leave her. She was not a cuddly baby. She is still the same way today. Even as I type this she is laying beside me just playing with her toys as content as could be. If we are not intentional about playing with her and doing her exercises she would be fine just laying on the ground all day. We have to intentionally take time to do all the things our therapists want us to do and still have fun too. Of course, these things are not a burden and we love playing with Abigail and taking her places, but she is not the one begging to go or running around like a mad woman driving us crazy.

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Abigail pushing herself under the table. She is a mess!

We also have to intentionally teach Abigail everything! Most typical children do not have to be taught how to feed themselves or sit or move. They just somehow magical pick it up and before you know it they are off and into everything. It happens so fast that as a parent you can barely keep up with them. But with Abigail, and many other special needs children, this is not the case. We have to intentionally teach her how to sit. How to hold a spoon correctly. How to get hair out of her own mouth. How to play with certain toys. And most of these things we have been teaching her for over 18 months now and she still cannot do them, much less mastered them.

Just this week our therapist wanted us to start putting toys just barely out of Abigail’s reach so she could start learning to come forward instead of always pushing herself backwards. So I sat down with her and put a toy just out of reach while she was on tummy time. Most children would learn to push forward and grab the toy easily. But Abigail just cannot figure out forward motion. She always pushes backward. So I had to get behind her and tuck her stubborn legs underneath of her and make her propel her body weight forward. She got the toy! So we did the whole process again. The third time I let her try on her own again. Well, she knew what she needed to do, but those pesky legs just do not work the way she wants them to. I shared a video of her on my Facebook wall. Those legs will always be an issue for us! After you have not used a body part for over two years I guess it takes awhile to figure out how to work it again, but maybe one day she will get those legs working.

But for today we are intentionally learning how to crawl. We are learning in baby steps. First strengthening our core, then working on our arms, and then one day we can get those legs fully under us and everything will click. Baby steps are slow. Baby steps are clumsy. Baby steps are unsure. But baby steps do eventually get you where you need to go, and we are making intentional baby steps of progress. I am a proud mama of a little girl who helps me be truly intentional every single day!

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Our Journey with Food

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

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

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

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

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

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

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

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

My Little Tortoise

I love recording memories during this time. Especially when Abigail is changing almost overnight! I have photo albums, an app, journals, and baby books (and this blog of course) that I use to record this time in our lives. It might seem like overkill, and I know if a second child comes along all that might not be possible to keep up with. Hopefully my poor second child will not be forgotten and left out of baby memories, at least I am going to try to do my best when the time comes. It is wonderful to go back and look at what was happening a year or two ago, and see where we are today. This time two years ago I was about 38 weeks pregnant, and ready to meet our little girl. How time flies!!

But as I sat filling out Abigail’s baby book last night in preparation for her second birthday, I came across blanks everywhere in the ‘Firsts’ section of the book. When was the first time your baby sat up? When was the first time your baby crawled? When did your baby take their first steps? When did your baby first hold their sippy cup? All blank. But, oddly it brought a smile to my face. I just wanted to ditch the baby book and create a whole new baby book unique for Abigail. The questions would read more like, ‘What brings a smile to your face when you see Abigail? What is she good at? What are some of Abigail’s skills?’

Abigail has the ability to do so much more now than she ever could! In just the last few weeks our little girl has learned so many new things. She is responding to commands. She can now lift her leg, blow kisses, clap, and lift her head when you ask her. It is exciting to be able to communicate with Abigail and know she is understanding what you are saying. She is also blowing tummy time out of the water! This baby used to hate, and I mean cry when ever you even attempted to place her on her tummy, tummy time. She could tolerate about three minutes and then she was done. She would lay her head down in defeat because she just did not have the strength to do it any longer. Today, she laughs and smiles and plays while on her tummy, and she never complains or lays her head down even after 10 or 15 minutes!!! Her physical therapist is even trying to teach her how to army crawl in hopes of giving her some mobility soon! It gives me hope for her future.

I believe Abigail will be able to talk, roll around and sit some day. It might be tomorrow or it might be 4 years from now but she shows she has the potential to do these things. Her trunk and arms are getting stronger each and every day. She is getting louder as she babbles to us. In the car I feel like sometimes I need earplugs with her constant squealing. She is rolling from side to side and flipping over from her back to her stomach and visa versa when she decides she wants to. I know we have the potential to have a roller soon and that excites me!!! My baby could be independently mobile!! Honestly, I would just love for her to be able to sit on her own. Then she could play so much easier and we could do so much more with her. We just have to get Abigail some abs!

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It is a s-l-o-w process. We have been working on tummy time since day 1. We have been working on prop sitting for almost 18 months. And we have been working on talking and babbling for about a year now. It has been a long two years of waiting to see what exactly this little girl is capable of, and it is amazing to know we still do not know. She has so much potential in her tiny little body. But that is what keeps me going – the potential for change, for improvement, for independence. To imagine Abigail one day being able to communicate with us or being able to move herself around brings tears to my eyes. I know this day might still be a long ways coming. I mean she has been able to prop sit for over a year now and not once shown any desire to even attempt to sit on her own. Did I mention she is also a little stubborn and independent? If anyone asks, she got it from her daddy. Unless Abigail wants to do something, she will not do it. Trying to get that child into her positions to exercise her is a trip. For a baby who seems to have no muscle tone, she is STRONG, and she will fight you with all she has to not be put into a certain position. But this is also good because at least she has muscles to fight with!

Abigail reminds me of the tortoise in the “Tortoise and the Hare” story. All the other toddlers her age are running laps around her right now, literally. But Abigail is not concerned with them. She is marching steadily on in her very, very slow speed. Still gaining ground everyday, but you wonder if she will ever get to the finish line. Right now it does not look like it most days. But I just think of the end of the story. It is the tortoise that wins the race. I do not say that to say that all the hares will lose, but maybe the tortoise had something going for him. He enjoyed every leg of the journey. He was not rushed or hindered by anyone else. He did not try to keep up with his neighbor. He was on his own journey, loving every minute of it and honestly he probably did not think he would even win himself. Maybe, as always, my little tortoise will teach me something yet. This life is not about how fast you get to the end. We will all get there one way or the other. But life is the journey. Am I enjoying each day? Am I living each day to the fullest? Am I doing my best in everything God has called me to? Abigail may be my little tortoise, but maybe that tortoise will be a winner yet!!!

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