Hearing Aids Oh Hearing Aids

It has been 5 years since I wrote the blog post I titled Ringing on this blog that I started in order to talk about the great miracle known as my son Teak.  It was a vent post due to the fact that my strong willed red-headed baby boy never kept his hearing aids in his ears.  When he was angry, he would throw them.  Then it was always fun getting on hands and knees trying to find them.  He would just plainly take them out of his ears and put them on the floor, etc.  You see, it wasn't just the frustrations of trying to keep them in his ears but when we were told that he had Spina Bifida, we had several months to get used to the fact.  And the fact that he heard things enough that he didn't realize that he needed them.  When we were told about his ears, it was very sudden and we were still working on figuring out how SB had effected his life so it was hard to accept at first.
He finally started wearing them non-stop when he turned 3 years old.  It just clicked and now he even asks for them.  He has some speech delays that may or may not have been because he didn't wear the hearing aids "at all waking hours."  The other reason could have be developmental because the speech therapists have stated his speech doesn't coincide with the delays.  Who knows...what we do know is that he has improved so much over the last couple years.  He is now thriving in a general ed kindergarten class.  And because of his hearing aids, he went to a specialized preschool with a small class before he was 2 years old and until he moved on to kindergarten.
All in all, Teak is full of character and spirit.  He has an open heart and doesn't judge.  I want him to show others that we are all different and being different is what makes this world great. 

Two Years Feel Like Yesterday

It feels like just yesterday that Chad and I were in a life's daze.  Our hearts and minds filling up with doubt, anxiety, worry, helplessness.  The words rambling from our mouths were just words.  Our bodies felt weak. 



My Love!



Two years ago today we found out our child had Spina Bifida Myelomenigocele.  A long and confusing word that was unpronounceable would one day just role off the tongue.  Understanding the meaning of this disability would come months later. 

It was our 20 week ultrasound.  Everyone knew we were heading to it that afternoon.  The most important part of our pregnancy at the time.  Finding out the sex of our child.  Oh, the calls and texts that were coming in from our friends and family were being ignored as we waited in my OB's office and then later by our cars. 
Back at our house, we just sat on the couch...staring, talking, crying.  Our lives were turned upside down and inside out. 

Prayers, prayers and more prayers started flowing from our hearts and our minds as well as everyone we knew and loved including people we didn't know!  My office actually raised funds for our little one because we didn't have insurance.  Our very dark hole was getting a little lighter as the days went by.

Little did we know that two years later, our son would be walking, running and talking.  He has surpassed all the expectations that doctors had for him. 

They said he would most likely need a shunt...to this day he does not have one.

They said he would most likely use a wheelchair or walker...he started walking 2 weeks before he turned 1.

They said our child had Spina Bifida and he only has his warrior wound (surgery/closure scar) to show for it.
We love you Teak - you continue to show us the joys of life!

Jeremiah 30:17

Our first Easter egg hunt

Walking around B's house in our Easter Sunday best!

Mimi aka great grandma and Teak!



Are you kidding me?  Could I be any cuter?



Daddy and Teak asleep on the couch!

Walking through the park after CityWide!

 We understand that not all SB children may not "turn out" as Teak did but each and every one is wonderful and each and every parent of a child with a disability is miraculous!

We also have the hearing aids we are dealing with still!  Ugh. But he is talking like a champ!

Happy 1st Birthday - 10/28/11

Wow, what a year and how fast it has flown by! Teak turned a year old last Friday, Oct 28th. Can't believe that he is such a big boy now...we are entering into toddler years and we are feeling it. He has been walking for a couple weeks now and everyday he gets better. A year ago, we had no idea what the Lord had planned but He is good and we are so blessed yet so undeserving!



Smiling away, playing in his Original 1st Birthday shirt!

It was a beautiful fall day, perfect for a birthday party in the park.  We had Thundercloud subs, fruit and cupcakes along with great family and friends. Our neighborhood, Brentwood, has a great park with a shaded playground area.  We found a nice shaded picnic area to set up and still have a view of the ongoings.

Our son, with Spina Bifida Myelomeningocele does not have a shunt, doesn't need to be cathed and is walking! He, like every other SB kid out there, is going to do great things in this world. The people of the SB world are so giving and caring. They really want to share their experiences and hear your own experiences.

We are so excited for the next year of Teak's life and getting to know our beautiful blessing even better.

Picture of friends hanging out under the Happy Birthday sign I made for my little boy!

Teak walking, walking, walking!



Teak hanging out on the ground with one of his future girlfriends, Georgia Ramsey



Teak hanging out with his cousins, Eva and Simone

Step By Step - Oct 16th

Teak has started WALKING! He started walking while holding our hands and also while pushing a push walker toy when he was around 10 months, maybe a little before. He always loved standing, I have said that time and again. Then he started traveling a little after crawling. But the issue was that we were told time and again by our personal PT (physical therapist) as well as the PT at the SB clinic that we shouldn't encourage standing because we wanted to encourage crawling. Well, this was in the back of our heads all the time so once he started crawling then we were still hesitant to "allow" him to stand...I know sounds silly but when you have a SB kid who seems to not really have any residual effects of the fact that his spinal chord and nerves were once outside of his body in a lesion then you get a little weirded out in the fact that your child is progressing "normally" in his physical development.

I know, I know...we should just shut up and let the good Lord show his ways in our son and we are very positive people, well, at least when it comes to our son from day one of finding out about his SB but it is just hard to face reality rather good or bad sometimes.
With that being said, he just loved to push that push toy around our little 800 sqft house. One day our PT was here and showed him how to walk backward, backing the toy up out of a corner in order to keep going and then the next day he was doing it all by himself! We have friends that said their kids didn't learn how to do that backing up with a push toy until they were way over 2 and already walking on their own.

So, the time goes by and it is about 3 weeks before he is going to turn 1 and Chad just got home from work and I am sitting on the floor with Teak, where I usually am all day, and Teak is standing at our little round table, holding on when I coax him to walk toward me. Chad turns around and voila, Teak took 3 independent steps then fell into my arms. It was so amazing! I started crying just out of pure joy, Chad saw it and came running over as we all embraced. It was a great family moment for the movies! Poor Teak got a little scared though because he didn't want to do it again. I think he thought it was bad because I was crying!

Then about 2 weeks before he turned 1, we were at our friend's house, the Welches, and we kept pushing him to walk on his own...he took a few more independent steps maybe 5 or so together then fell or grabbed onto something. Then we went to our friends, the Ramseys, the next day and Chad became a soccer dad...he was just pushing Teak outside in their lush green lawn to walk from him to me constantly. Teak was getting up to about 19 steps from start to finish. It was pretty exciting. After that it was just encouraging walking where ever we were. There was still a lot of crawling going which is great because that is sooooo good for development, physically and mentally, so that was all good.

Our PT said that she didn't see anything abnormal with his walking. He definitely started out walking like a German soldier but that went down after time. He doesn't seem to drag either leg even though his right leg is still a bit stiffer then the left. Time will only tell but we will continue to do stretch out those muscles and encourage walking.

Now, we are working on kicking and running...the next obstacles.

Traveling and Talking

Teak started pulling up and traveling along furniture not long after he started crawling! He has always loved to stand up so once he knew how to do this then he was all over the place. It is so neat to see how he is progressing along the lines of an average baby not that my little man is anything close to average.
He just impresses us everyday and we are so grateful for all that God has given us and blessed us with. Teak is so strong and very heavy tempered which I think is what has gotten him far in his development. He growls when he can't pull himself up but just keeps trying. He is starting to push a walking toy. We would get mad when he couldn't move it out from a corner or the wall then we showed him how to back up and push it another way...well, he got it immediately. He started to walk backwards and pull the push toy towards him then kept moving forward. He will walk by our large mirror in the bedroom and watch himself walking. It is so cute. You have to walk in front of him, backwards, or he will just stop if you are behind him.
He is amazing!

So now for the talking. As you know, he wears hearing aides. Or actually is supposed to wear hearing aides. He constantly takes them out. It has not gotten much better then when we started. He wears them about half the time...well, some days it is even less than that. Now, he pulls them out and throws them at me. Some days, he will wear them without touching them for hours! I have had to learn when and wear are the places that he can or can't wear them. For example, the park, not a good place because even though I am following him, watching him closely, I am afraid he will take them out and bury them in the gravel. Hopefully, one day soon, he will be able to wear them at the park no problem.
One a partial side note, he is already talking. His first word was BALL and then CAT then WHOA. He is talking a lot now, babbling to his toys and as he sits in his car seat. It is pretty amazing for a my little boy with a minor hearing loss. It doesn't seem to be stopping him from talking at all. We are just very aware that he needs to be able to hear things clearly so that his speech is developed correctly. His hearing teacher tells us how incredibly bright that he is and that he will most likely not be delayed but we want him to be ahead of others so he is never behind. Sounds good to me...I will continue to read to him everyday and work on his words.
Keep it up my smart boy!

Crawling!!

Oh yes, that is right, Teak Joseph is crawling and it happened before he was even 9 months old. Take that Spina Bifida!!! He is still pretty cautious but working his way into full blown. He knows hot to do it and does it beautifully on all fours. I was so excited to show his physical therapist, she was excited to see it.
He started off doing these bounces around the floor. He would keep both knees in or one knee in and one leg out and then bounce or actually hop around the room with his arms flailing through the air. It was quite funny to watch especially when he was after a dog or a the cat.
Goodness, people were right about them getting into everything, but again, I am so thankful that we have this problem. This is not a bad problem to have when your little one has SB.
Teak loves to chase the cat. I want to get him on video going after Stella. It is hilarious. He smiles at her and talks to her and then starts after her. She is scared of him for the most part. She only lets him get to a certain closeness then she is done and gets the heck out of dodge.
He first started out towards the dog's water bowl. He had already poured it on himself a couple times so he knew the fun times it brought and the amount of crazy it did to his mother. This child is very motivated by everything that he isn't supposed to have. All of a sudden the toys that he was playing with were so juvenile to him...at least that is how his face looked when I offered them to him to coax him away from the water bowl or dad's playstation or our cell phone charger cords.
In any sense, he is crawling. Check out the video, it took us pulling along a charger cord for him to move but hey it worked. No judgments please. It wasn't plugged in and he only played with it for a bit then it was politely taken away.

Be Aware

It is weird talking to other moms, young and old, who don't have a child with Spina Bifida. When you talk about not being able to wait for your child to crawl and move around they are fast to warn you that is not something you are looking forward to because they are into everything. Well, for us who have children with SB, you can't wait for them to be mobile. That is a big deal when they move on their own, crawl to get a toy or in Teak's case, anything that he is not supposed to be getting into. We want this normality to occur. Why is that we seem to knock down a development of a human child? What is so "uh-oh" about these milestones that we tell parents to beware and not wish and want?
Teak became pretty mobile once he turned 8 months. He had started to move around more rather than just sit stiffly on a mat to play. He began reaching for toys more and working on moving his body to reach for toys. He understood that you could pull the toy basket closer to him to get what he wanted. (Sigh, it is crazy to watch a human being grow...think about it...crazy!)
Back when Teak was only 2 months old we started getting physical therapy through Easter Seals which is a division of ECI (Early Childhood Intervention). You have to make a 6 month goal with them so we made our goal to be rolling from back to belly and belly to back. Well, my child didn't like rolling. He was pretty sure that he didn't want to roll ever. He very well knew that we could get him the toy we just placed out of his reach and darnit he was going to fuss until we gave it back to him. Rolling didn't seem to be an option for him. Well, then we realized that he hated to be on his belly which a lot of babies do and so he would have such a fit and arch his little back to the point where he would make himself roll to his back. After a while he definitely got that one down and as soon as you would place him on his belly he would reach his arm up and roll to his back and then he was fine. He would completely shut off the tears and be happy again.
As the months went on we would work with the physical therapist ,and work by ourselves when she wasn't there, on rolling back to belly. He just wasn't having it. Then around 4.5 months, I realized that he had enough back strength to sit up on his own. Now, he would start to fall over sideways after a minute or so but then around 5 months he could sit pretty well unassisted. He had such a belly on him by now that that helped to keep him up right plus he kept his legs out so straight. I would work on bending them constantly and making him side sit and he would just plop those legs back to straight ahead and he liked them nice and stiff.
Back to the rolling, well, we finally got it down when he was about 8.5 months. He would fuss and throw a fit then finally flip from back to belly. Only after he had figured out how to push up from belly to sitting was motivated to roll from back to belly because the end result would be is favorite position of sitting. Except now that he was moving around he would actually go directly to a side sit or with bent knees! Thank God, literally, I was afraid that would never happen! Just shows you not to have fear, things happen in their own time.