Jonny's Piano Recital

Look at my handsome boys! Growing up so fast.

Jonny with his buddies, Jacob & Josh.
(L to R Jacob, Jonny, Josh) It's fun to have twin friends.
They also take piano lessons from my sister-in-law, Dorinda.

Jonny had his end of the year piano recital last night. Sadly Isaac missed it due to being out of town working for a few days. I recorded Jonny playing so Isaac would still be able to see it. I am so proud of Jonny. He is such a wonderful, sweet boy and his piano skills have greatly increased. He went from never having played last summer to what you see in the video. He completed his first lesson book just a few weeks ago. Way to go, Jonny! I love you, sweet boy!

P.S. It's fun to be able to take piano lessons from your aunt!
P.P.S. You will need to pause the music on the blog before watching the video.

Good News

I went to visit my grandma today. Before I left Jason overheard me telling Isaac were I was going. He looked at me with a little grin and said "I would love to go visit Grandma with you because she likes me and it would make her happy to see me." How do my boys know just how to melt this mama's heart? :) I asked Jason if we should take Grandma a rose out of our rose garden and he though it was a great idea so he helped me choose which one (or ones - they were on the same stem). He carried it all the way from our house to her bed. He is one cute four-year-old. And Grandma loved seeing her great-grandson bring her roses. As we were getting in the car to leave I was scolding Jason for being shy with Grandma and he said to me "I haven't seen her a lot lately. That's WHY I was being shy with her, Mom."

Grandma looked great. She had the hip operated on this morning and it was a much smaller break than last time, so it should heal faster this time. Wonderful news. :)

Please pray...

...for my grandma. She and my grandpa lost everything when their home burned to the ground in the devastating Rice Fire during the San Diego Firestorm last October. Then in January she fell and broke her hip. She was finally starting to get around again (and even made it to church the last three Sundays). Today I got a call saying that she fell again and was in the ER. She has now broken her other hip. So, she will have surgery in the next few days. I worry about her. I love her very much and I know how hard it was for her to recover from the last hip break. Now she is weakened from just getting over that so I am fearful that at 85 she won't have the strength to recover. Please pray. The picture below is of her home that burned down. She told my mom after the fire that she felt like the fire had aged her ten years in just a couple very long weeks. At my grandparents age there is no such thing as rebuilding the lifetime they lost to the fire.

Joel's Developmental Evaluation

On Thursday Joel had the developmental evaluation that we've been waiting about nine months for. He did really well, even showing skills I didn't know he had. He impressed his mommy! It took about 3.5 hours and was totally exhausting. Both of us were exhausted.

The results: Joel was diagnosed with Developmental Delay. (We already knew that.) He was also diagnosed with a mild case of Pervasive Developmental Disorder, Not Otherwise Specified (PDDNOS). This is on the Autism spectrum but he barely qualified and I'm not concerned. He is still the exact same baby as before we got the diagnoses. Something to take into consideration is that a lot of behaviors that could look like Autism could be caused by his visual impairment. They have a lot of side effects that are the same. So I am not sure that he actually has PDDNOS, but it's okay that he was diagnosed with it because it may help him qualify for more services. It also could effect the way I teach him, so I'll have to do some research.

Here are his levels of development based on the Bayley Scales of Infant Development -III:
Cognitive - 18 months
Receptive Communication - 15 months
Expressive Communication - 14 months
Fine Motor - 15 months
Gross Motor - 18 months
Joel is 32 months old and if you take away the 15 months that he had non-stop seizures and wasn't learning it would leave 17 months that his brain has been able to process information. So I think he is doing wonderful and is an amazing little boy! Side note: It actually worked out really well that it took us so long to get the evaluation because he needed to test at the 18 month level in cognitive thinking for the Autism evaluation to be accurate. And he did! A month ago he wouldn't have. It was suggested that we continue all that we are currently doing as well as start speech therapy.

I love this picture taken on Mother's Day. It has nothing to do with this post, but I like to post pictures because I think it makes the blog more interesting.

Internet problems

Sorry I haven't been able to post in the last few days. I haven't had access to the internet. We've been having problems with our connection. I am going to post today if the internet continues to work. We had an interesting day yesterday and I want to tell you about it. Joel had his Developmental Evaluation for Autism. So I will work on this post and get it up as soon as possible.

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.

Indio Weekend: Part II ~ Slideshow

Where did I leave off?

Oh, yeah. It was just before our Indio trip. Sorry it's been so long...when we came back Jason was sick, then we had internet problems, and now I am sick. But I will attempt to catch you up anyway...

On Friday our trip to my parents Indio timeshare started with us meeting them, Jonny and Jason (they left with my parents on Thursday) at the Palm Springs Aerial Tramway. It was awesome! Makes your knees tremble a little, even for someone who's not afraid of heights, but my mom who is afraid of heights would be the first to tell you it was definitively worth it. The view is gorgeous during the ride and once you get up to the top it is a totally different world. We did some hiking on the trails at the top, took some pictures and throughly enjoyed being in back country without having to do the work (read: hiking) to get there. ;) It was beautiful. At the end the boys enjoyed some rock climbing...all three of them. :) To anyone visiting southern California, I would highly recommend visiting Palm Springs and taking the Aerial Tramway. Warning: Take warm clothes...you are visiting the top of a mountain, after all. It was 80 degrees at the bottom but 50 degrees when we reached the top. Now that's COLD for someone born and raised in so. Cal. LOL ;) Hope you enjoyed the slide show.

Beauty & Joy

I love this picture because all I see when I look at it are beauty and joy. Look at those eyelashes and cute baby teeth. I love when he smiles. Look at that gorgeous curly hair. I love his curly hair. I've never told you but one of his nicknames is "Curly". I love how he is being playful with Daddy in this picture. This picture was taken at the San Diego Zoo on Tuesday. It was a field trip/family day. God's timing is perfect, you see we decided a little over a month ago that Isaac would take the day off work to go with us. Jonny was going on a two hour behind the scenes tour and needed an adult to go with him. The little guys were too young to go on the tour and needed an adult with them. Since I can't be in two places we had decided Isaac would go. Guess what happened. Isaac had most of the week off due to lack of work. Not a great situation but couldn't have come in a better week since we had the zoo on Tuesday and today we are leaving for Indio. Actually, we are supposed to be leaving in an hour and I'm not packed yet...so I better go pack. I'll leave you with more pictures from the zoo. We had a great time! (And by the way, Jonny wants to run a zoo when he grows up...perfect field trip for him!)

Thank you to my wonderful husband who watched the little ones for two hours while I went on the behind the scenes tour with Jonny.

Mommy (me) & Jonny on the tour.

We got to pet the camel!

Why is it that the reptile house is always a favorite with little boys? Both of my boys want to work with reptiles when they grow up.

The hippo was awesome!