JOEL CAN COUNT TO TEN!

I will let the video speak for itself...

(make sure your volume is turned up!)

I am so full of joy!  I feel like I am walking on air.  :)  For those of you who know Joel or read my post "When Your Child Can't Talk", you know what a surprise this was and how much it means to us.

The amazing woman you hear in the video is one of Joel's ABA therapists (the one I call "K").  We have been working on teaching Joel to talk in ABA, with excellent progress, but he is still needing a lot of prompting.  We had not been trying to teach him to count.  That still seemed a ways off.  We have, however, used counting to ten several times in the last few weeks for taking a "break" when Joel has not cooperated with what he was told to do, or told not to do.  He occasionally repeated the numbers with slight interest, so you can imagine how shocked we were today when he took the lead in counting!  Our jaws were hanging on the ground!  I had tears in my eyes as I listened to him count over and over, every time he ran off the playground into the planter.  I am so thankful that K suggested to take video so Joel's other therapists would believe us.  I was able to show the video to Isaac (Joel's daddy) when he got home from work and my heart swelled as I  watched him get tears in his eyes.  I love that I will be able to watch it over and over, but even better, I love that I can walk into the back yard right now and sit Joel down and count with him.  :)  I can't stop grinning from ear to ear.  Tonight it's time to celebrate!

My Miracle Boy

Yes, I know his face is messy.
It was the first time he fed himself with a spoon!
But look at that JOY.

This is his playful, silly face. A face that I want to cover in kisses. My little goober was in a great mood that morning (he does like oatmeal)!

Miracles can happen to those who love the Lord.
Blessed are they that believe in Him, His kingdom shall be yours.
(Miracles Can Happen by Sandi Patty)

This part of this song floats around in my head often. My favorite part: miracles CAN happen. Now, I'm not saying miracles WILL happen to those who love the Lord. I am saying they CAN happen. I have been blessed by seeing multiple miracles happen. Most have been through Joel. It is not easy to be a parent of a child with special needs. But it definitively has its rewarding moments and God has given us many of these.

There are too many to list, but I will highlight a few. It's a miracle...

...removing almost a quarter of Joel's brain stopped the seizures. He had constant underlying seizures with various other seizures approximately 4-30+ times every day from 6 weeks old until December 14, 2006 when he had the surgery that God had led us to. (That's a whole post of it's own!)

...removing so much of his brain didn't impair him further. A test before the surgery revealed that part of his brain wasn't working. When they removed the large tuber the surgeon said it was calcified and the brain tissue surrounding it was irritated. This explained why he had almost no control over his right hand and why he used to stare at it for hours...it probably had a funny feeling in it. The fine motor strip (area in the brain that controls fine motor skills) was irritated. Gradually after the surgery as the irritation went away he regained use of his right hand and stopped holding it up and staring at it. He still prefers his left hand, though.

...Joel can walk and run. The first fifteen months of his life we didn't know if he would ever do these. All he would do is lay there like a lump. Sometimes he would play with a rattle or small toy for over an hour (which concerned us about Autism). He didn't sit up until fifteen months old (a week before his surgery) which scared us. It's a miracle that Joel crawled two months after surgery and walked four months after that (six months post-surgery).

...Joel can see. Pre-surgery we didn't know what Joel could see. We knew that he could see light but we didn't know if he could see anything more. He never focused on faces or much of anything. He didn't interact with us at all. We didn't know if it was because of the seizures or very poor eyesight. Since the surgery we know for sure that he doesn't have any eyesight in the right side of both eyes, this is because the part of the brain that controls that was removed during the surgery. But we also now know (the Dr. said he believes) that the eyesight that Joel does have is good. :) Some days it is better than others. If he is tired, not feeling well or over-stimulated his eyesight will become worse and he gives a lot of blank stares, but when he is feeling good we know he can see. His eyesight is a bit slow and it is hard for him to follow with it, but it improves every month. I get tears of joy every time he looks deeply and lovingly into my eyes and gives me his sweet little dimpled "I love you, Mama!" grin.

...Joel smiles! A smile was very rare pre-surgery but now is a regular occurrence. I sure LOVE that dimpled grin!!! He is one little boy who now enjoys life and knows what joy feels like!

...he likes to play. Joel has made a connection to his family members. He likes to play with his brothers and he even gets jealous of Jason. This may not sound so great to you...but it is. It means his thinking is complicated enough to have that emotion and have the spunk to do something about it (like get Mommy or Daddy's attention). Through a special type of therapy called Floor Time he has made a special bond with me. Floor Time teaches my how to play with him where we can connect and interact. It helps increase his communication. And boy has it helped. When we started it (about 6 months ago?) he was not connected to me emotionally. We had both been through a lot in his little life and that special bond had simply never formed. I was his caregiver but he thought he didn't need me for anything else. Thus, he didn't communicate with me, he didn't like to play with me (or anyone else), he would only play with a toy if I put it in the middle of the floor and left the room so he was alone. Now it's a whole different story. He LOVES playing with me and doesn't want to play by himself. He makes eye contact, he grins at me, he even laughs at me. He gives me kisses while I play with him. The teachers who are teaching us Floor Time even commented today how much they saw the connection between us and how sweet the loving looks he gives me are. That in itself is a huge miracle.

...Joel is doing so well with Gross motor skills that he graduated from physical therapy last November. A mere 11 months after surgery. Not only can he walk and run, he is now an expert climber, he loves to throw balls and he has just started kicking them.

...he is doing excellent (for him) in occupational therapy. We worked for about a year on getting him to drop a toy into something, anything. I started to feel like he never would. The goal was a shape sorter. Well he now can do a shape sorter with two shapes and he is great at (and loves) dropping things into other things. :) He has also conquered many difficult cause and effect toys. Even though he is still really behind his age group, his fine motor skills are starting to catch up. Miracle!

...it is looking more and more like he isn't Autistic. The Autistic features he has had his whole life are slowly disappearing. What's more, I have discovered through an excellent Vision Consultant who God placed in our lives that most of the concerning behaviors can be explained by his visual impairment. That other children with visual impairment have the exact same difficulties. 1 in 3 people who have Tuberous Sclerosis also have Autism. Those are high odds and along with behaviors we were seeing we were concerned. But amazingly (God IS amazing!) those behaviors no longer concern us.

...Joel is starting to talk. This miracle is the most recent and I am still walking on cloud nine. Again, this is a result of Floor Time. We were really starting to feel like we would never hear his sweet little voice forming words. As he is approaching three years old it really concerned us that he didn't have any words (other than an occasional "bye-bye", which became rare). In the last month he has gone from pretty much no words to a small (very cute) vocabulary. I would say he now has about 20 words including animal sounds. And sometimes he imitates words we say really well. Even if we don't hear them again he is learning.

There are so many more but this post is already way to long. I would like to tell you one last thing about what God has done in our lives: he sends along just the right person at the right time. He has granted us with wonderful doctors and especially wonderful therapists. He has given us a wonderful support system (our family, church, friends, and even the Tuberous Sclerosis Alliance in Southern California). He has guided us to exactly the thing Joel needs at the time, whether it be surgery or a certain type of therapy. He has guided our footsteps and been with us every step of the way. THAT is truly a miracle.

P.S. One last miracle. Joel is feeding himself with a spoon now. Started doing this about three weeks ago. Messy but wonderful.

Strength

In honor of Joel's birthday, here is the second post. Joel has been through so much in his little life. He is one of the strongest babies I know to have made it through the past two years. He has a very strong personality that draws you in and makes you want to squeeze him with love and kiss his chubby cheeks. I want to share with you a sampling of what he has been through in the last year. In December 2006 Joel had about a quarter of his brain removed at UCLA Children's Hospital to try to stop seizures that no amount of meds (even mixed together) could stop. So far they have not returned as far as we know. (Warning: the following pictures are difficult to look at.)

11/06 Joel was bundled like a mummy for his MEG test in San Francisco. I was feeding him in an attempt to put him to sleep.

The MEG test. He had to hold completely still without crying for 30 minutes. You know how hard that is for a 14-month-old baby.

12/06 Joel has been poked and prodded way too much in his short life.

12/14/06 This picture was taken the morning of his surgery. My sweet baby had no idea what was coming, he just knew he didn't like hospitals.

Waiting for Joel's surgery was agony. I felt like I NEVER wanted to let go of him. Part of the agony: knowing that he would return to me without a quarter of his brain. The other part: not knowing what the future would hold for him.

Finally out of surgery, my baby was swollen and attached to all sorts of wires and tubes. One of the tubes was draining excess fluid out of his brain. I was not prepared for that particular tube, so you can imagine how shocking that was.

The day after surgery was difficult as his eye was swollen shut and he was aware of it as well as being in a lot of pain.

Four days after surgery I was finally able to hold him when the tube to his brain was able to be clamped. Before then his head had to be at a certain elevation due to the tube. It felt sooo good to have him back in my arms but was a little scary at the same time.

When the head wrap finally came off we discovered he had 43 staples.

I had to include this picture just because he is so cute sleeping with his teddy bears.

My little "tough guy" with daddy just before we went home the first time. You can see how swollen his head had become pushing his ear down near his neck.

This was just before we left for home the first time. I didn't think we were ready to go home but they insisted he was ready.

Our one good day at home in between hospital stays. Only one week after surgery he sat up,which he had only done a few times before.

After being home 3 days we ended up in the ER at San Diego Children's Hospital on Christmas Eve and he was life flighted back to UCLA on Christmas morning. (Needless to say, our last Christmas was not what I had hoped it would be.) After a lot of testing and waiting they decided he had Chemical Meningitis (which was his brain having a chemical reaction to the surgery.) It was extremely painful with high fevers. Very difficult for us to watch him go through. I would have given anything to take the pain from him.

Joel was in isolation most of his 2nd hospital stay because they didn't know yet what type of meningitis he had.

20 days after surgery we were back at home with a PIC Line for his meds. Being back together as a family in our home was just the medicine he needed to put a smile on his face.