Survival Mode

I have been thinking about this blog a lot lately.  So many things have changed in Joel.  So much has gotten harder.  He has Autism.  It has changed him, changed us as well.  I really need to start posting again.  Updating.  I want his story to be full and complete here. I need to work through my thoughts and feelings...

But that's just it.  I don't want to think about my feelings, my emotions.  I think about sitting down to write, and after several moments of trying to figure out how to put everything, anything, into words I find it's easier to give in to a distraction like the kids or the house.  I sit down at the computer to try and force myself to write and somehow find myself mindlessly browsing Facebook, avoiding facing my emotions without even thinking about it.  Something, anything but thinking about my feelings.  Tears come more easily than I am comfortable with.  Autism is hard.  Behavioral issues are hard.  Life is hard.  Sometimes I feel like I can't write out of pure exhaustion.  Sometimes it's because I have a million words to say, but can't figure out how to say or write a single one.

So instead I just keep looking straight ahead, putting one foot in front of the other.  I call it survival mode.  The problem is that I want to do so much more than survive.  I just don't know how.

Every time I look at this blog it hurts.  It hurts because I look back at old posts and hear the excitement I felt at the progress he was making.  Progress that has been ripped from us in so many ways.  I look back and see the difference in the number of posts between 2008 and 2009.  That was about when his seizures started  coming back after not having them for a couple of years after his surgery.  That was when the Autism started creeping in, slowly stealing what little communication he had and locking him into his own little world.  That was when it got hard to write.

Things are starting to get better.  Joel just started ABA (behavioral therapy) last week and we now have an awesome support team.  We have been doing parent training with the best of the best since June.  It has forced me to face the Autism, which was hard at first, then good.  That's how I was able to write my last post.  But now that the ten-plus-hours a week of ABA has started, and at least one of the therapists is a counseling intern (both of Joel's therapists are psychotherapists), I am having to face my thoughts and feelings in a whole new way.  It's oh-so-hard, but I know it will be good in the end.  I have so much to be thankful for, and while I am going to try to process my thoughts, feelings, and emotions, I am going to choose to focus on the good.

With love and emotions,
Joel's Mom

There's No Place Like Home!

There truly is no place like home! Even though it's dirty and messy like a tornado went through it, there is this special feeling when you walk through the door. This sense of finally being able to relax and be comfortable. I can not even express how much I am looking forward to being in my own wonderful bed tonight (very soon, I might add). I honestly can't remember the last time I was this exhausted. I think being pregnant doesn't help. I feel like I can't move a muscle in my body. To top things off, I have had a headache for pretty much the entire time we were at the hospital and I've been nauseous the last couple days. I think the cafeteria food didn't help. No, actually I KNOW it didn't help! My mom made dinner for us tonight since we had to pick up the boys at their house anyways, and it was the best tasting food I've tasted for a VERY long time. Thanks, Mom! While we were at my parents, Isaac and I informed Jonny and Jason that we were planning on having Joel sleep with us tonight, since it was his first night back and he is just getting back on his normal anti-seizure medicine routine. (The three boys normally sleep together because Joel can't sleep by himself.) We didn't want Joel's seizures to wake up the boys. They quickly protested, stating that the reason they were soooo excited that we were back and because they missed sleeping with Joel and were looking forward to it. Guess where Joel is sleeping right now. Well, I am going to bed now. I just wanted to say how wonderful it is to be all together as a family again and how great it is to be home! Goodnight.

Day 5 ~ Sunday

Happy Father's Day!

We are going home! Joel has had several smaller seizures and he had a seizure this morning that was like one of his bigger ones at home, so they have decided that they have enough info to send us home. :) Smiles all around. More info about our stay and last night to come once we're home.

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.

A Taste of What's Coming

We got a small reminder of what life will be like in less than a week. Isaac took the three boys to the dentist last week for a cleaning. When I spoke to Isaac about it later, he told me how he almost couldn't get Joel through the doorway into the exam rooms. That little boy is STRONG. When he was a baby, he was diagnosed with poor muscle tone. He does not have that problem now. He grabs for the door frame and doesn't let go. It's a good thing that Isaac is going with us to the hospital. His strength might come in handy. I am dreading the hospital trip. We have been blessed to not have a hospital stay since his surgery three-and-a-half years ago. Joel will be admitted to Mattel Children's Hospital UCLA on Wednesday when he will be sedated to place the EEG leads. I am expecting him to wake up extremely upset that there is something on his head that he can't take off. He doesn't like hats for even one minute. It's going to be Isaac and my job to keep it on his head. Hopefully they won't put an IV in, that would just make the situation that much worse. They will be EEG monitoring him with video for up to a week, I think. His last one was a week. Hopefully it won't be any longer than that. I'm not even going there in my mind, because I can't handle the stress thinking about it. Hopefully it will be less than a week. That would be an extreme blessing. I believe they will also be doing some other testing on him while we're there. I should have internet access and I plan on keeping you all updated every day. Thank you all for being here and caring. I am leaving you with a picture of his last inpatient EEG in 2006. This time they will wrap his head so he won't be able to pull off the leads as easily. I wasn't blogging in 2006, so many pictures have never been posted. I will probably post more old photos as memories are triggered by being back at the hospital. This photo was within two weeks after his first birthday.

Joel's Seizures & Vision

I know that today is June 2. I was going to revise this post which I composed on April 28, but my information now is totally different, so I am going to post this as is. Don't know why I didn't post it at the time... It gives a good view into what life was like in April: Wow, I haven't blogged in a while. I guess that's what happens when doctor appointments take over your life. I am still trying to take pictures every day for Project 365 (I have missed some days) but there is no way I can catch up. I may try to start posting them again soon, but maybe not, depending on how life goes. The last month has been very emotional. Joel's seizures have increased lately. He's now having about 5 per week. We are adjusting medication to see if we can get them under control, but are also going to be heading back up to UCLA for an inpatient EEG. This will be torture for everyone involved. Just setting foot on the UCLA grounds reminds Joel of his surgery. And he still gets terrified every time anyone medical comes near his head. I have no idea how we are going to do this. Joel's vision has also been getting worse. He had an opthamology appointment a couple of weeks ago and for a couple of days we though he had lost half of what eyesight he does have in his right eye. Let me backtrack a bit. When Joel had his surgery at fifteen months old, they removed the part of his brain that controls the right side of his vision in both eyes. Therefore, he has no vision in the right visual field of each eye. About seven months ago, the opthamologist found a tumor in Joel's right eye. (Tuberous Sclerosis can cause benign tumors to grow in the vital organs.) The best we can do right now is to watch it, so when I took him in for a six-month check his vision was looking worse and they though he had lost half of the vision he had in that eye. I was heartbroken. It was awful to think that my baby was going blind in his right eye after all he has been through. And then to think that his left eye could follow at any given time was too much for this mother's soul to bear. I found myself crying, which I do not normally do. Mourning the loss of my baby's eyesight. A couple of days later, we took him to a retna & tumor specialist who made me feel much better. He said the center of Joel's retna was clear and that is the most important part for eyesight. He didn't think Joel had lost that much vision (other than what he had lost from surgery). A possible explanation for Joel's eyesight seeming worse is that his right eye doesn't seem to be tracking with his left eye. That's bad, too...but not as bad. Not tracking well can cause blurry or double vision which is made worse by bright light, so the brain tells the eye to squint which is what we are seeing a lot of. Please pray for his vision to get better and not to get worse and for his seizures to go away. Thanks for all your support. It is much needed.

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

Please Pray

As I was reading a blog today that I've been following for about a year, I started feeling my heart ache as tears swelled in my eyes. I know only a small part of the pain that they feel and yet I can relate. It hurts so much to watch your little one go through so much pain. I was talking to someone the other day, telling them how much Joel's little head must have hurt after his surgery having almost a quarter of his brain removed, and I couldn't even think of it or I become sick to my stomach. I am so thankful that we have had so much time outside of hospitals and doctors. So thankful that he is doing better since the surgery, and so scared that it is all going to happen again. We have seen a few seizures lately. But that is not why I'm writing today. I'm writing to ask you to pray for Ashley and her family. They have to spend way too much time in hospitals and Ashley goes through way too much pain for such a little girl! Click here to visit her blog. Ashley's mama keeps it well updated, so you'll know how to pray. Ashley and Joel are almost the same age, and I just know that they would be instant friends if they ever met. We are praying for you, Ashley!

VBS on Outrigger Island

Outrigger Island is this year's Vacation Bible School's theme. It's fun!By the way...in the background you can see the trailer where my parents have lived since the fire (in our church's parking lot).

Sorry I can't post this week. I have been super busy and EXHAUSTED. I am leading music for our Church's Vacation Bible School. And it has proven to be exhausting. Add to that Jason (and I think now Joel) are sick with colds that are going around VBS. Then there is the fact that I think Joel is having seizures again (so I am having to make extra calls to doctors) and Joel has been difficult this week. Then there is the fact that this is Isaac's fourth week working 5 hours away from home. And I am not getting enough sleep because of all my responsibilities...soooo you can see how I am so exhausted and don't have time to post until probably Saturday. We could use some prayer in this family. Thank you to all of you who visit this blog and follow our story and thank you to all of you who pray for us. You are a huge encouragement to me.

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.

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.

Possible Seizures?

The arm movements in these video clips are new.