Why is Joel in the Hospital?

I believe I need to clarify why Joel is here at Mattel Children's Hospital UCLA. Several people have asked. After being seizure free (as far as we know) for two-and-a-half years after his surgery, he started having seizures again about a year ago. At first it was one or two a month, then gradually they increased until now. Now he has anywhere from five to fifteen each week. That is what has brought us here. We avoided it as long as possible to give him more time to hopefully understand more and therefore not be as scared, but we couldn't wait any longer. Raising his anti-seizure meds didn't help decrease the seizures. So we are admitted for pre-surgery testing, evaluating what his options are, hoping that another surgery is not in his future, but not ruling it out either. They are trying to catch seizures on the video EEG, did a PET scan to see what parts of his brain are functioning, and they will do a MRI to see what his brain looks like now.

Gray and dreary...

...describes my soul as well as the weather. (The weather isn't helping.) I am exhausted, the last several months have finally caught up with me. Isaac is still out of work and we've all been sick a lot. Joel has been difficult. I have been HOPING that what I have been seeing is not seizures...but when Joel's therapists started noticing, I knew that it's not just my imagination. Both therapists have seen possible seizures, the first time I didn't see it and his OT told me about it, but yesterday I saw it along with Joel's speech therapist. The three of us were sitting at a table playing and all of a sudden he looked in my direction but his eyes didn't focus. He started saying "papa, papa" in a whimpering voice (which could be him asking for his grandpa or pacifier - he calls it "baba" which sounds a lot like papa.) His little face looked so scared, terrified, and his eyes were twitching a little bit and just not focusing. It seemed as if he was looking for me but couldn't see me. He was shaking a little and looked really weak. I knew something was wrong and couldn't help but gather him into my arms. In retrospect, I think the asking for "papa" was because he was scared. He feels safe with "papa", whether it's grandpa or pacifier.

I have seen several instances similar to this one each month since about January. I have been hoping beyond hope that it was just a one time thing each time because the thought of traveling the road of seizures again rips my heart from my chest and tears it into tiny pieces. The thoughts of more anti-seizure meds (which make his brain fuzzy, can make him dizzy, and we've been told they have only a 2-3% chance of working since they didn't work last time), multiple tests (which he is now terrified of due to the pain he experienced during his surgery), frequent doctor visits (which he hates and screams the whole time), and ultimately the very real possibility of needing brain surgery again takes away my breath...like someone punched me in the stomach. I feel like I am in a daze. It is striking me once again that I have a "special needs" child and that will never change. Tuberous Sclerosis is something Joel will live with the REST of his life. He will have good years (hopefully) and bad years...good months and bad months. We have been very blessed to have a good year-and-a-half. I realize that and am VERY thankful for it. But I don't know where I am going to get the energy to fight for him again. He is older now, stronger, and much more aware which only makes things more difficult...emotionally and physically. The feelings I felt today could only be understood by a parent of a special needs child. It is impossible to understand unless you've been there. I know I tried to understand before I had Joel and now I know that it is impossible due to the experience I've had. I really appreciate those of you who try to understand, though...and will do my best to communicate my feelings throughout the blog. Today I have been struggling to let go of my hopes that Joel's seizures would never come back, I have always known it was a possibility, but have had to hold onto the hope to survive. I now have to adjust to a new reality. Joel was already scheduled for his bi-annual check-up with his neurologist on Monday. Can we say "God's timing!" Please pray for everyone involved. My heart hurts for my little guy.

Good night, sleep tight and I will keep you updated. Thank you for being here, my friends.

Above: Joel with his Occupational Therapist (OT) ~ Below: Joel with his Speech Therapist

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.

Boo-boo

Earlier today Joel had his first 1 hour PT appointment. (Up till now he has had 30 minute appointments.) He did pretty good lasting 45 minutes. When we got home the whole family was out in the backyard together enjoying the beautiful day. Shortly after I took the photos of the boys below, Joel tripped on something and fell and hit his face on the cement. His tooth went all the way through his lip in the same spot it has twice before (so now it has happened 3 times in the past 4 months.) You can see the boo-boo on his chin in the above picture. He trips and runs into things a lot because during the surgery they removed the part of the brain that controls the right side of his vision, therefore he doesn't have vision on his right side of both eyes. Please pray that it will heal fast and never happen again. It makes my heart ache to see him get hurt (and he gets hurt a lot due to his vision.)

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.

Smile

In honor of Joel's birthday I wanted to make two special posts. Here is the first.

Joel rarely smiled before his surgery. One of the many wonderful results of the surgery is that he is more interactive, therefore he smiles more.

Joel's beautiful smiles: How could you not fall in love with him? ;-)

9/7 Update

Joel Isaac - August '07 - Isn't he beautiful!

A quick update with more to follow later. The consensus is that the weird eye movements are not seizures, but are more likely his eyes having trouble following. I feel in my gut that this is true and am comfortable with this diagnoses.

About a month ago, Joel's physical therapist (PT) said he was about a 15 month level and catching up 3 months worth each month. She also said we could cut our visits down to once a month and may only need 6 months more in PT. Praise the Lord!!! All the glory goes to God because He led us to the right doctors for Joel, He led us to the Tuberous Sclerosis Family Picnic in 2006 where we learned about the surgery, and He made it clear to us that the surgery was the right thing for Joel (even though it was the hardest and scariest decision of our lives.) Since the surgery Joel has made steady, incredible progress.

A couple weeks ago we attended the 2007 Tuberous Sclerosis Family Picnic in Irvine. Once again we learned something new. The Tuberous Sclerosis Alliance had published an article titled "Musical Ability in Children with TSC Does Not Show Developmental Delay". (To access this article click link and go to page 9 in PERSPECTIVE - SUMMER 2007 PDF File) The short of it is that there was a study done that showed that children with Tuberous Sclerosis Complex (TSC) were not delayed in music ability and so music therapy may be VERY effective. Music therapy has taught other children with TSC to talk. I am going to do everything I can to get Joel in music therapy because he is very behind in communicating. Please pray that the insurance will cover the music therapy. There is a very real chance they won't. In that case I will have to start fundraising. If you would like to help with Music Therapy (MT) please check back here as I will be posting a Paypal account you could donate to specifically for MT (only if the insurance won't cover it.) I will keep you updated.

Lastly, (I know, I know. I said a quick update. Oh, well ;) today Joel had a couple episodes where his whole body shook mildly for a minute or more. It made me remember that it has happened before (so much goes on with him that I like to watch him to see how often it happens before I start to worry, so often if it doesn't happen again I forget.) The shaking seems to happen when he is really concentrating on doing something or excited. But it is unusual and I can't make it stop. I feel in my heart that the episodes are seizures and that scares me so much that I can't think about it. If they are that means that our whole family once again goes down the road of trying new combinations of meds and always watching Joel, waiting for the next one. Our life becomes consumed with many more doctor visits, tests, phone calls to doctors, trips to the ER and meds. It is hard on Jonny and Jason because I don't have as much time for them and even though they are very understanding at their young age, I don't like it. I do know, though, that God is in control and I have to lay Joel at His feet in prayer. Please join me in praying for Joel that the seizures are not back and that he will continue feeling well and developing. Please also pray that I can accept God's will and if the seizures are back that God will give our entire family (but especially Isaac and me) strength to get through the coming days, months, years. Pray that we can comfort Joel when needed. I am convinced that it is the hardest thing in life to watch your children suffer and not be able to do anything to help them.

Thank you all for your support, in prayer, emotionally, physically, and financially. We could not have made it through the last 2 years without each one of you.