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!

One of Those Moms

Apparently I am one of those moms.  You know, the one who can coordinate two doctors crazy schedules AND a hospitals schedule.  Yes, I actually was told by a doctor's secretary the other day that "well, you are one of those moms who knows how to coordinate doctors busy schedules, so just talk to the doctor about it when you are in."  "Those" was definitely emphasized.  I think it was meant as a compliment.  To me it means I've been doing this a lot of years now.  Over seven years.  I never could have pictured the present even a few years ago.  But now here we are, and I am happy to be called "one of those moms".  I welcome myself to the club.  It is an awesome group of women to belong to.  I can't say that I always wanted to be "one of those moms".  That would be lying.  But I can say that now that I am here, there is no place I'd rather be.

I must also say that I am one of those moms who knows when they need help (especially after weeks of procrastinating).  I was able to accomplish my long list of phone calls by using a couple of respite hours.  It is amazing how much easier it is to accomplish a bunch of phone calls when there is another adult to field questions, comments, children who can't talk, and attention seeking toddlers.  Something they don't warn you about when your child is diagnosed as special needs is the hours and hours and hours you will spend on the phone with doctors offices and insurance.  Enough hours that nurses and front desk personnel will remember you and your child by name or even voice occasionally.  I guess it does have it's perks.  ;)

So now that I have complex scheduling figured out, anyone have tips on how to get a personal, full-time assistant?  Pretty please and thank you?!  One can always dream, right?

Our First TSC Conference

I am so thankful for today.  We went to an all day TSC conference at UCLA, which is a long two-and-a-half hour drive from our house.  I am completely mentally and emotionally exhausted right now.  I am even typing half-blind because my eyes just couldn't stand my contacts any more.  I am completely ready for bed, and headed there as soon as I'm done typing this post, but I needed to write this before my head hit the pillow.

We heard so much great information today shared by some of the leading doctors and researchers in the field.  It was so much, I hope I can retain everything.  We met some other parents who have children with TSC, amazing parents who were so open to sharing what they have learned along this long journey.  For that I am thankful.  We were protected from an accident on wet roads as we left UCLA.  It was obvious that God put a buffer around our car as a speeding SUV lost control directly behind us and fishtailed within feet of our front bumper.  How that car managed to come in front of us before fishtailing instead of sideswiping us was only by God's hand.  Isaac and I went out to dinner on our way home.  A much needed date that had been a long time coming.  But the best part of today was that three other people were there for Joel (and any other future clients they may have with TSC, which I would highly recommend this company to other local families - email me and I'll give you their info).  Two are his new ABA therapists and one hopefully will be soon.  How incredible to have a large part of our team there, learning the intricacies of TSC.  Tuberous Sclerosis is such a complex disorder and I know it will be so helpful to Joel for the team working with him to understand more about this condition.  I can not even put into words how thankful we are that they were there, how thankful we are for this company that truly cares about Joel and our family, and how thankful we are for the incredible individuals that make up this company.

We are feeling very cared about and supported as we venture into this next stage of life.  We are blessed.

With love and thankfulness,
Joel's Mom

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

When Your Child Can't Talk

It is pretty high up on my list of most difficult things in life.  It breaks my heart daily.  It stinks.  It is hard in so many ways.

IT is not being able to talk with my seven-year-old son.  Oh, I can talk to him.  I can talk at him.  But I can't talk with him.

Sometimes he talks to me with his eyes.  They are trying to tell me everything.  Sometimes they do.  Like when he's happy.  Or when he's sad.  Or when he is loving me.  But they can't tell me what he's thinking.  They can't tell me where it hurts or exactly what he wants.

Sometimes his lips move with no sound and it looks like he is forming words.  But try as I might, I usually can't make out a single one.  It hurts to know he is trying to tell me something and I can't understand.

Sometimes he squeals, or says "Daddy, daddy, daddy" over and over, or says "tatatatatatatatatatatata".  I wish I knew what it meant beyond being excited or upset.

Is it because he has autism?  Or because they removed the speech portion of his brain at fifteen-months-old?  Did the speech not properly re-map to the other side of his brain?  Is it because of epilepsy causing damage to his brain?  Or is it because of the benign tumors in his brain caused by Tuberous Sclerosis?  Only God knows.  Only time will tell.....or won't.

All I know is that when I look deep into his eyes and he gives me a huge toothless grin, my heart melts into a puddle.  I love this boy.  And that makes it all worth it.

With love and heartache,
Joel's Mom

Well, Hello There!

It's a new year.  I've just finished giving the blog a whole new look.  And I'm back!

I've been meaning to start blogging again for a few months now.  It has been on my heart that I need to be Joel's voice as well as the voice of our family.  I need for people to understand how hard we try and how much we all go through.  I am tired of getting looks.  I am tired of people assuming that we just "let" Joel have his way.  I would like to give friends, family and strangers a window into our lives in order for everybody to have a better understanding of what families with a disabled child go through.  And I also want you to fall in love with the sweetness that is in Joel's heart, like I have.  My only problem is that there aren't enough hours in the day, but I will do my best to post at least on a weekly basis.  Thank you for being here, because I know if you're here then you care about Joel and our family, and for that I am grateful.

Goodnight for now, friend.
With loving care,
Annie

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.

An Early Christmas Gift

This is the first of several updates on our family. Sorry I have been so bad about posting lately, but I have good reasons which you will discover through the following updates. I am still trying to take a picture on most days, but obviously have not been able to keep up with posting Project 365. I may try to get back into it, but there is so much going on right now that it is not on my priority list. For those of you who don't know yet...we received an early Christmas surprise.

We are expecting baby #4!

Due on or around December 26, 2010. (Crazy that it's the day after Christmas, which also happens to be the day my grandpa passed away in 2008.)

We heard the baby's heartbeat today. Every one of us is excited. The boys are hoping for a sister...and I have to admit that I would LOVE to be able to buy girl clothes. But we would all be happy with a boy, if that's what it is. As long as the baby is healthy, which means so much more to me when I say it now as opposed to before we had Joel. I always assumed my babies would be healthy before having Joel...now I know the cold, hard truth that healthy is not always the case. So please pray with us that this baby is born without TSC and that it is healthy.

I am ten weeks and two days today. I have been feeling pretty sick and am looking forward to being twelve weeks, as that is when my morning (all day) sickness went away on my other three pregnancies.

I am going to leave you with pictures of my first three when they were newborn, or close to it. (Poor middle kid doesn't have too many pictures, the best newborn photo I could find of him was when he was three months old. I know I have some I can not find...hopefully they didn't burn up in my parents fire, which is a very real possibility.)

My first - Jonny - now nine years old

Jason - the middle child - to be seven this month

And my Joely - the baby for now - four years old

I love my babies!

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

Living with TSC...

...is often an emotional roller-coaster. There are highs and there are lows. Today and the last few days I have been in an emotional low. It's hard to blog when all my emotions are feeling drained. We've been having more doctor appointments than usual and I'm exhausted. So I will do my very best to give you a long update tomorrow evening. We saw a Pediatric Neuro-Ophthalmologist yesterday and I want to tell you all about it.

Sweet Little Boy

Grammy reading to my little book worms.

I feel like I need to tell you that despite my last post (where I talked about behavioral issues) Joel is still an extremely sweet little boy. Most of the day is filled with kisses from him to me and shared smiles. The few temper tantrums he has in a day is completely offset by all the love flowing out of him. When he smiles he has the most wonderful dimples at the corners of his mouth. I love to kiss them. I love him with all my heart and more. I love him so much that I am always watching and evaluating him so that I may catch any issues immediately because in everything the sooner it is caught and treated, the better it is for him. My sweet baby boy.

Joel is changing...

...in so many ways, lately. He is doing several new things just since the last time I posted. On the good side he is saying more and more partial words. He now says "Dada", "Mama", "momo" for more, "outsss" for outside, "issss" for this (like when he wants something he'll say "issss"), "pu" for up, occasionally when eating he'll copy us with "mmm mmm mmm" or "ahhh", and he used to say "Bye-bye" but I haven't heard it in more than a month. It's the second time he's lost bye-bye. This is the interesting thing about Joel. I don't know why it happens and I haven't heard a good explanation from anybody I've asked, just some guesses. He has had several words that I have heard anywhere from one to one hundred times and they just disappear. I have no idea why. The speech part of his brain may have been removed when they did his brain surgery, but we don't know for sure. Just speculation. A couple weeks after his surgery Joel was saying "Dada" but speculation is that he was just experimenting with sounds. About three months after surgery Joel looked deep into my eyes with the most loving look and said "Mama". That was the first time I heard him say mama and it melted my heart with the look he gave me. I know he was calling ME mama. I know it because of the way he looked into my eyes when he said it. Joel doesn't look deep into our eyes often. In fact it almost never happens, so I know it was for me. But speculation says that he was probably just experimenting with sound since we didn't hear it again for 12 whole months. His surgery is now 16 months ago and he seems to be pretty much on track with a child about that age. But then how do you explain his words he said so soon after surgery? And why did he say "bye-bye" for more than a month with waiving and then just had it disappear for more than 3 months? I don't have any answers. Joel is very complex and this area is a mystery not only to us but also to his therapists and doctors. Good things happening lately also include his using gestures to direct us to what he wants. If he wants a toy from his toy bookcase he comes and makes us pick him and up and then he uses his upper body to take us to the shelves he can not reach which hold his favorite toys. If he wants to swing (which he LOVES, by the way) he will come get me and take me to the swing and pull on me and protest with his voice (anywhere from whining to screaming, if I'm not fast enough) until I put him in it. I love that he is communicating with us what he wants. What I don't love is the not so good things happening around here. Joel has started throwing temper tantrums. When he doesn't get exactly what he wants exactly when he wants he totally loses control. Deliberate screaming and uncontrollable crying is happening more and more. Often he gives me a look before he starts...the look that says you are not giving me what I want and I'm gonna let you have it because I'm mad. It's hard to figure out exactly what is going on. Is he just catching up developmentally and starting to act like a two-year-old? (We all know about the terrible twos.) Or, is he frustrated because his thinking is more advanced than his communication skills? Or could he have the start of behavioral problems? This last one is one of my biggest fears. Many different behavioral issues are linked to TSC (click here to read about it on the Tuberous Sclerosis Alliance website) including aggression, sudden rage, hyperactivity, attention deficit, acting out, obsessive-compulsive behavior, repetitive behaviors, staying in their “own world,” being nonverbal even at an age when most children are speaking, and other autistic behaviors. Please be in prayer with me that these temper tantrums are just typical two-year-old behavior and not a behavioral issue from the TSC. Also, please pray that my fears will be quieted and that God's peace will come over me as I deal with this newest behavior. Thank you to everyone who is reading this blog. I have had Tuberous Sclerosis Awareness on my mind and heart lately and I am feeling led to focus more on this. I would like to help other families who are dealing with seizures and/or TSC, visual impairment, autism. If you know of any blogs dealing with these issues could you leave the address in the comments...I would like to put up links to other people dealing with these issues. Thank you. PS I forgot to mention that Joel has become a book-worm. We moved the board books out of my older boys room and into Joel's room and he decided he was ready for them. He now follows me around the house with a book wanting me to sit and hold him and read to him. I LOVE IT! I was worried that he wouldn't develop a love for books (or even like them) like my other boys do. I believe that reading or even being able to sit and be read to is a key to education and I think this new interest will open new paths in his brain and help him learn in new, wonderful ways.

Annual Checkup at UCLA

Whenever we visit UCLA it involves a lot of driving! It's approximately 5-6 hours round-trip depending on traffic. I am so blessed to have kids who are GOOD in the car. No complaining, no whining, and above all...no crying! It's also a blessing to live in Southern California where the scenery is soooo beautiful (for part of the way anyways). Not to mention the weather. We have a really fun tradition when we go to UCLA. After Joel's appointments we always go have dinner at Enzo's Pizzeria. It's good pizza that's fairly priced and the atmosphere is wonderful. Old music playing, red and white checkered tablecloths, dim lights with red, flickering candles. I always get a good feeling when we go there. The tradition started when Joel was in the UCLA Children's Hospital. Isaac and I were sick of hospital food and my Mom had come up to see Joel, so she sent us to get out of the hospital and have some relaxed time together. We were searching for a place to eat near the hospital and ran into Enzo's. It has been our place there ever since and now we enjoy taking the kids there with us. Unfortunately, we now also know of a really good cookie shop around the corner from Enzo's. So that has become a part of the tradition as well. Good memories.




Going into these appointments there were two things we were concerned with. Joel's weird eye movements and his speech. The Neurosurgeon said since the eye movements only last a couple seconds they are nothing to worry about. When we asked about him not talking yet (when they did the brain surgery they probably took out the speech section so they thought the speech would remap to the right side of the brain) he said that it is possible the brain would not be able to remap if the right side of his brain has tubors in the area that the speech would remap to (since most of his brain is tubors, it is very possible). The Neurosurgeon said that it is possible Joel will be able to understand us but not be able to speak. He said if that is the case, he should be able to learn sign language since that is a different area of the brain...so we are going to step up our sign language efforts (we have been trying to teach him for awhile but Joel isn't learning it). In general, the Neurosurgeon said that Joel is doing great. The goal of the surgery was to stop the seizures, which it appears we have done. All glory to God!

After our appointment with the Neurosurgeon, we rushed to the building next door for Joel's appointment with his UCLA Neurologist. About the eye movements she said that we should see the Neuro-ophthalmologist from LA Children's Hospital that had previously been recommended to us by Joel's Ophthalmologist. He will be better able to tell if the eye movements are related to Joel's brain (due to the surgery) or seizures. About the speech, she said that children with Tuberous Sclerosis Complex (TSC) are slower to speak anyways and that the anti-seizure med he's still on (Zonegran) can cause some side-effects in speech. We are considering and praying about changing his medication. We don't want to do anything that will hinder him talking, but at the same time he isn't having seizures right now and messing with his meds could cause seizures. It's a fine balance and a very difficult choice. (One of the many, I guess.) She also thought Joel was doing really well. At the end of the appointment, we asked her if a growth on Jason's (our 4-year-old) face could be related to TSC. She said yes and be sure to mention the TSC to the dermatologist Jason was seeing the next day.

The drive home was pretty difficult. As the kids slept, Isaac and I discussed how we felt about the possibility that one of our other precious children may have this terrible disease that has torn apart our lives. How would this affect him and his future? What were we going to do about the possibility of having more children. If two of our children have TSC then chances are that it's hereditary. That would mean that any of our children would have a 50% chance of getting it. I still really want a daughter. We came to the conclusion that Jason is Jason no matter what. Having it wouldn't change him. He would still be the same. And if he had it we would adopt a girl in the future. No matter what happens, we have God to take care of us.

Well, we went to Jason's dermatologist appointment the next day with a heaviness on our hearts. We told the dermatologist about the TSC that is in our family and our concerns (including the growth on his face, a white spot on his skin that Neurologists have been concerned about because it can be part of TSC, and the little bumps on his nose that can also be a sign of TSC...all these things (except for the growth) had been worrying me since Joel was diagnosed). When the dermatologist told us that the growth on his face was just a wart, I felt a huge weight lift off of me. When she told us that 20% of people have one white spot and the bumps on his nose were caused by his asthma and allergies, I felt the rest of the weight that I had been carrying for the past two years lift off of me. I felt like crying and laughing all at the same time. I just smiled with tears in my eyes and gave my precious little boy a tight squeeze.

Joel's Story / Update

Photos are from Nov. '07 through Jan. '08.
They are just a small view of Joel's life right now.

Joel’s Journey 2005-2007

An update on Joel

Joel was born in September 2005. When he was nine weeks old, after 4 days of extensive testing at Children’s Hospital, he was diagnosed with Tuberous Sclerosis which is a serious seizure disorder. His brain, we learned, is full of Tubers. Approximately, more than 80% of his brain was malformed. This caused constant underlying seizures with 5-40 seizures per day that we could see. The next 13 months was filled with sadness, stress, doctors appointments, numerous anti-seizure medications (many at the same time – some helped although none made the seizures go away), and therapists appointments (the seizures caused developmental delay). There was much prayer during this time but the seizures never stopped. He was not developing. At 1 year old he was still not rolling over. We didn’t know if he could see because he never looked at anything. It was clear to us that something needed to be done to help our precious baby. Nine days after his 1^st birthday we went into UCLA Children’s Hospital. We spent a week there undergoing testing. Through a series of doors that God opened it was clear to us that extreme brain surgery was God’s will for our little Joel. They needed to remove almost a quarter of his brain to hopefully stop the seizures. Through testing we learned that this part of his brain wasn’t working which helped us with our decision. With God’s help, on December 14^th, 2006 we handed our 15 month old baby to a medical student who would take him to his 8 hour surgery. It was the hardest day of my life. I don’t know how I would have made it without God, but somehow knowing that He was in control and had brought us there helped calm me.

Recovery was difficult and we ended up back in the hospital in the Pediatric Intensive Care Unit (PICU) on Christmas Eve with complications. But God protected Joel and we were back home by the second week of January to celebrate Christmas with our 2 older sons. At that point they had been living with their grandparents for a whole month while we were at the hospital.

The surgery did stop the seizures as far as we know. Two months after surgery (in February) Joel started crawling. Six months after surgery (in June) he started walking. We started seeing him smile and he started interacting with us. The surgery took away the right side of his eyesight, so he is visually impaired, but the eyesight he has is developing and getting better.

It is now a year after surgery and Joel (now 2 years & 3 months old) is truly our “Miracle Baby”. Although he doesn’t talk yet and he is slow in fine motor skills and cognitive thinking (he is catching up slowly), he is rapidly catching up in gross motor skills. We once thought he wouldn’t walk – he now loves running after his brothers. We thought he couldn’t see – his eyesight is improving. We thought he wouldn’t talk – he is making great progress and just last month started gesturing for what he wants. We thought he wouldn’t interact – he now smiles and kisses and loves to play. God has given us a miracle.

I would like to let you know, though, that we do still need prayer. Joel’s seizures could return at any time for the rest of his life due to other malformed parts of his brain. He could also develop tumors on any of his vital organs (especially on the brain). This is part of Tuberous Sclerosis. And we need prayer for continued progress in his development. I trust God that he will guide us with Joel’s life and that he will continue to make him “our miracle”.

Thank you to everyone who has supported us these past couple years. We couldn’t have made it without your love, prayers and support. Each kind word and loving thought has given us the strength to survive. We love and appreciate each of you.

Blessings, The R Family

The Geneticist

Sorry, I've been putting off this post because I don't even know where to begin. (I've kinda had writers block.) Last Thursday we saw the geneticist. She explained the results of Joel's DNA test. In very, very simple terms his TSC is a result of a deletion in the TSC 2 gene. This particular mutation has never been seen before (which simply means the lab who did the test has never seen this and it has never been reported.) There is no data bank with all the DNA test results from everybody, so it's hard to know if this mutation has been found before. It should be fairly simple to find out if Joel's TSC is hereditary, Isaac and I will both have to be tested. If either of us has the same deletion then more research will be done. If neither of us has it then Joel's case is spontaneous. The kids will not need to be tested until we know if we carry it, except she suggested having Jason tested at the same time as us since he has a couple non-pigmented spots (which can be a sign of TSC) and is having headaches. If he was ruled out from having it our minds and hearts could be put at ease. Now we come to the more complicated part...insurance and the effect testing us would have on insurance if any of us were found to have TSC. All three kids have CA Healthy Families. Everyone except for Jason is also covered by private insurance. Jason was on his own policy because he was a higher rate due to asthma when he was an infant. Jason alone was $200 per month so when he got the Healthy Families we thought long and hard (and prayed) and decided it was the best decision to cancel it. IF Isaac and I are tested and one is found to carry TSC than Jason would probably be uninsurable. Healthy Families will end at 18 (assuming we will qualify until then, which every year we are right on the border) and then he would be without insurance possibly with a disorder that requires a lot of routine expensive testing. So...we wait to be tested and in the meantime I am applying to get Jason covered with the private insurance again. Easier said than done. Jason already saw the neurologist who ordered the MRI. So as I am applying I have to reveal that he saw that specialist and they will request the records and then....will they not cover him until after the test is done? If not, what if he has TSC? Then he will be uninsurable. This is all so complicated and confusing and time consuming! Please pray that everything will go smoothly and that God will protect our little Jason and our family. Please also pray that during this time I will find a productive way to relieve my stress and that I will not worry. On top of everything else, the geneticist said she wanted Joel tested for autism. The dreaded "word." One third to one half of all people with TSC have some form of autism. The amazing thing was that when she said it I had two thoughts race through my mind, the first being "NO, NOT MY BABY! He has already gone through so much." The second thought that went chasing after the first was "Even if he has autism, he is the exact same baby I walked in here with and he will not change by me knowing." The geneticist said that he might as well be tested as he has some autistic features because there are many benefits he would be eligible for if he has the diagnoses. I can't deny that it makes sense, if he has "it" he may as well get the extra help and if I know he has it I can be working to do something to help him. The complicated part of this is that I called to make the appointment (which they are already booked all the way to January) and I must know that the insurance will cover it before I book the appointment. His private insurance will cover it but there will be a rather large cost to us. The healthy families will cover it IF I get an appointment with C3 (which is run by the hospital but I think it's state funded) to have him evaluated and get them to write a prescription without the word "autism" anywhere in his paperwork (this seems like it is going to be hard because if they evaluate him and see autistic features...which they will...they won't want to leave it out of their notes.) I called C3 today to get an appointment and they don't have one until the end of November, which means his evaluation at Children's won't be until at least March. I will be left wondering if my baby has autism for at least 6 months. I know it sounds selfish but this is torture for a mother. For Joel it means that if he does have it then that was 6 months missed that we could have been helping him. I hate the insurance system. I hate that I can't help my baby right away. Put all the things in this post together in the last week and it makes for a busy, stressful time. I think it's time for me to go open my bible for some encouragement.

My 4 year old, Jason

This is my sweet four-year-old, Jason. Today Jason saw Joel's neurologist, Dr. Nespeca. (By the way, for anyone looking for a pediatric neurologist in the San Diego area, Dr. Nespeca is the best here.) Anyway, Jason saw Dr. Nespeca because he has been having a lot of headaches the last couple years. They have been increasing lately and with Joel having TSC there is a possibility that Jason has it as well. (TSC can cause non-cancerous tumors in the ventricles of the brain that can become a problem if they grow and block the flow of fluid. This could cause headaches which is why he needs to be tested.) I don't like to even think about Jason possibly having TS, but for his safety the possibility has to be explored. Dr. Nespeca said neurologically Jason is right on track, but because of the headaches Jason needs a MRI. This involves anesthesia which can be dangerous for little ones. Before the MRI appointment can be scheduled the insurance has to approve it, so the appointment will probably be about two months from now. I will let you know when we have an appointment date so you can be praying. I really appreciate all your prayers. It is only by prayers that we have made it through the last two years. Please pray that Jason's headaches will disappear and we will find the cause. Also, that if he is just pretending to have headaches to get attention, that we would have a way of knowing (it is so hard to tell with a 4-year-old, especially one who has a special needs brother who gets a lot of extra attention when he doesn't feel good.) The other prayer we REALLY need is that Jason would NOT have TSC and that I could stop worrying about my other children. I know that worrying is a sin and I try really hard not to but once in a while I have this nagging thought..."What if?"

Brotherly Love

It's amazing how much love God has given my boys for each other. You would think that the two older boys would be jealous of the extra time I have to spend caring for Joel, but they're not. It makes my mommy heart overflow with joy when I see them together. Jonny and Jason are truly best friends and both of them love Joel with all their hearts. There is also a special bond between Jason and Joel (Jason loves playing with Joel therefore Joel responds to him.) I love the bottom picture. Joel is kissing Jason and you can see the love on Jason's face.

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.