Patience

Today would have marked two weeks of Emma being off of oxygen.  Instead it's her third day back on.

Only when she's sleeping.  Just like the last {almost} two weeks completely off of oxygen didn't happen.

I had hope again last night when she went the whole night off the oxygen.

But as I type she is napping with her friend, oxygen.

The thing we have dreaded and centered our days around avoiding since Emma came home from the hospital has happened.

We are sick.
With a nasty cold.
Not all of us.
It started with the two that are supposed to be my easy ones.
They have been miserable for a whole week now.
Then I started feeling it.

Then Emma started sneezing and having an occasional cough, accompanied at times with watery eyes and stuffiness.

Now Joel is starting to show signs of getting it.

Isaac is the only one safe.

For now.

Doctors hounded into us from day one how dangerous it was for Emma to get sick.  It could send her back to the hospital or even kill her, they said.  So we have done EVERYTHING we possibly could do to protect her.  We haven't taken her into crowds.  Not even to church.  We have stayed home and kept the kids home.  Nobody sick around her.  If any of us is the least bit under the weather, we wear a mask around her. Vitamins, hand washing, making sure everyone was well at family functions before taking Emma, and restricting who has touched or held her are just some of the precautions we have taken.

But we can't avoid doctors offices.  And that is where Jason picked this bug up.  At the dentist. 
So we kept the boys away from Emma.  But then I got it {even though I was flooding my body with vitamins} and while I did everything I could to keep her from getting it, she did.  Thankfully not bad, but now her body is putting energy into fighting the bug instead of breathing. 

The goal is 94.  {The number is the percent of oxygen saturation in her blood.}

We were above that off the oxygen before she got sick.  I was so excited.

Excited that she was close to losing her "tail". 

The "tail" is what I call her cord hanging from her foot that plugs into the monitor.

Freedom.  I could taste it.

I must admit that part of my excitement was petty. 

I have been looking forward to taking her to church {for the first time} on Easter Sunday.

And I have been planning what sweet dress she would wear.

With tights. 

After all, she is my first girl after three boys.

We were on track to be monitor free by Easter, but now she definitely will not be monitor free. 

Which means no tights.  At least not the ones with feet.

And on the more practical side, her monitor beeps {loudly} and I was looking forward to not dealing with that during church.

So as I was mourning the fact that it will still be at least two more weeks until she can lose the monitor, it dawned on me that God may be trying to teach me patience.  This has occurred to me several times in the last four months.  And then I get busy hoping and trying to get Emma off the oxygen and monitor and I forget about patience.  Until all my efforts are getting us nowhere.  Then I stop and think about patience again.  I had always thought of myself as a patient person.  But this whole saga has taught me otherwise. 

So I will be patient.
And thankful.

That God is working to teach me patience.

That one step backwards is all we have taken.

That Emma hasn't needed to go back to the hospital, so far.

That she will be in church on Easter Sunday, God willing.  {No matter what she's wearing.}

That she doesn't need oxygen when she's awake.

That she isn't sicker than she is.

That I have a daughter.

And she's alive.

And she's home with her family where she belongs,

in my arms.

Thank you for all your prayers and thoughts.

With much love,

Annie

But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control. Against such things there is no law.

~ Galations 5:22-23

P.S. While I was writing this post my brother {of Brooktown Photography} stopped by with Emma's newborn {as newborn as we could get without oxygen} photos.  I am so excited to look at them, but I am practicing self-control {another fruit of the Spirit} and waiting until Isaac gets home so we can look at them together.

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.

Day 1 ~ Wednesday

Well, I have not been good about posting every day like I had hoped I'd be able to. We've been busier than I thought we would be and I wasn't able to access my computer the first day we were here. I am going to update you on each day anyways, because this is my only journal and I like you to know what's going on with Joel. We appreciate all the prayers and thoughts. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ When we left on Wednesday morning, Joel was only able to eat a few bites of Jello. We stopped at Dollar Tree for a mylar balloon (which he LOVES). He was a happy boy. We had a long two hour car ride. It always amazes me that he is in such a good mood on the mornings of testing where he can't eat because he's going to be sedated. Of course, he doesn't know what's coming, but it always surprises me that he is so happy even without food for hours. I thank God for giving Joel such a sweet, loving spirit. When we got to UCLA, Joel was admitted to the hospital. From there he was taken to the unit where he awaited being taken for sedation and the lead placement. He became more and more scared as time passed. It only got worse with each person in scrubs or a white doctors coat who passed or stopped to talk to us. Soon he had people talking about how good and strong his lungs were. He is loud when he crys his terrified cry. The lady who was trying to talk to us and get information was so sweet and understanding, she took all three of us out in the hallway to finish getting information so that he would stop crying. Then she took us to the "toy room", gave him a teddy bear, let him pick out a toy and loaned him Jinga blocks to play with while we waited. She then took us to a different room without a bed, spread a blanket on the floor and let him sit on it and stack the blocks while we waited. This made him much happier and he didn't cry again until we laid him on the table where they were going to put an IV in and sedate him to place the leads. He fought it so hard that they had to use the gas to put him to sleep before they place the IV with the sedative. The next time we saw him was an hour later when he was waking up with a white bandage cap covering the leads. We were wheeled to the pediatric floor where we were placed in a double room. We had hoped to have a private room, but it wasn't too bad sharing. We even made some new friends. The couple and little boy we shared a room with the first night were even Christians. The picture below was taken shortly after getting to the room.

Right after that picture was taken, Joel started throwing up. We still don't know why, but my guess would be a reaction to sedation. He threw up for about six hours until they gave him an anti-nausea medicine through the IV. We had hoped to avoid the IV before coming to the hospital, but at this point I was very thankful that the IV had been placed while he was out. He never complained about having the IV in. After he got the anti-nausea medication he perked up and ate a few bites of jello, apple juice and a saltine cracker, not much but better than nothing. So that was all he had to eat in 24 hours. This picture was taken when he was starting to feel better:

I wanted to share the picture below because we had an incredible view out of our window. It was even more spectacular at night. It's amazing how even the smallest blessings can help.

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.

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

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.

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 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.

Quick Prayer Updates

It seems like my posts have been getting longer and longer (sorry about that), so here's a quickie. I couldn't figure out the order to list them in so I think I'm going to go from youngest to oldest. Joel has had Pink Eye for a few days now...we've been doing medicated eye drops and he is looking much better, even though he hates the drops and fights with all his strength. All three boys have been fighting my cold in their own ways off and on for about a week now. Thankfully, none of them are too bad and the worst we've dealt with is stuffy noses and the pink eye. Praise: None of the boys have caught my cold as bad as I thought they would. Prayer: That their bodies will continue to fight it. Isaac is working away from home again this week. I am getting a little bit better every day. My heart was bothering me yesterday, but is doing good so far today. I do get really lonely when Isaac is not coming home in the evenings...makes for a really long day. It's harder this time, too, because I'm sick. Praise: Isaac's working! I'm feeling a little better each day. Prayer: That Isaac will come home safely to us and that I will heal from my cold. That I will be strong while he's gone and that being both Mommy and Daddy to the boys is something that I will be able to do with patience, grace, and energy. Also, that my heart issues won't be serious. My dad's knee is gradually getting a tiny bit better. He had a MRI on it yesterday. Don't have the results yet. He now has bronchitis. My mom is back on antibiotics so her pneumonia is getting better each day. Praise: They are both getting a little bit better and they are both under the care of good doctors. Prayer: That both of them heal quickly. That God will provide babysitting as I need it...they were my only babysitters during Joel's therapy. My grandma is staying at my aunts house while her hip continues to heal. My grandpa is out of the hospital and even though he's in a lot of pain he is getting better. He still has the pneumonia. Praise: They are both getting a little bit better each day. Prayer: That both of them heal quickly. My grandpa doesn't know Jesus. He knows about Him but has chosen to live a life without him. I pray that he will allow Jesus to enter his heart before the end (which is probably not too far off). My grandma is a new believer and she would like to be baptized. I pray that she will be well enough to get baptized soon and I also pray that she will continue to grow in her newfound faith. Thank you for your love, prayers and support. It means so much to me and my family that you would take time out of your busy lives to check this blog and pray for us.

Busy, busy, busy (& my heart)

It's always amazing to me that even when I get to stay at home most of the week (all of Joel's therapy's have been canceled...therapists don't want to get sick, imagine that :] ) I feel like a crazy chicken running around with my head cut off...or should I say I wish my head was cut off. I have had a head cold all last week that has now found it's way into my chest. For the first time today the house is quite for a moment. Joel is taking a nap, the boys are outside playing, there is a load of laundry washing...oh wait, not so quite, the kitchen timer is beeping at me.

OK, now that I've got the kitchen timer turned off...and in the process noticed that the boys (a 4-year-old in particular) were playing in the mud which I had already explicitly told them not to do...where was I? Oh yeah, life being busy. So, last week started by us coming home from Big Bear on Sunday (feels like a world away) and then Monday I had to pick up Isaac's car from a park 'n ride near the beach. That's right, the wonderful thing about southern California is that we were in the snow one day and on a 72* beach the next day. And, as you might have guessed by me picking up Isaac's car, he worked away from home all last week. So, after I picked up the car I took the boys by the beach. I tried with all my might to avoid it because I have been having problems with my heart and I was tired and had a lot of unpacking to do at home, but it's like the beach has a magnetic pull and I just couldn't be so close without stopping by. (We only live 30 minutes from this beach...but don't go as often as I would like.) It was great fun for the short time we were there (I didn't have much change for the meter). The boys played on a playground that is in the sand and then they moved to playing with the sand and then we progressed toward the water and they got to put their toes in. They loved it, running and squealing the whole time. It was hard to drag Joel away from the water when it was time to go. As we left the boys got to run and scare about 500 seagulls who were sitting on the beach. Wish I had my camera with me. :( Tuesday came around with me catching my mom's cold. I was sick the rest of the week and with Isaac gone, things were hard. It's difficult when you're not feeling good and there is no one to give you a break. How do single moms do it? I am in awe of single moms.

The doctor called me on Monday with results from the heart halter I had worn the previous week. It did catch one of episodes I have been feeling and after looking at all 24 hours of results the doc thought I should go on medication to slow down my heart. Now, for those of you who know me I like midwives, homeopathic remedies, herbs and vitamins...not pharmaceuticals so much. I know they have their place and can save lives, but it is not always my first choice. So, promising to avoid caffeine and get more rest bought me a week without medication. I decided to get a second opinion from a cardiologist. Part of this decision is that I want to know why my heart is beating too fast and having palpitations. I need to have further testing done...not just "your hearts beating too fast so here's your medication". Something that has to be considered is that my grandma had problems with her heart valves, and also that I haven't been ruled out yet from having TSC (since it is hereditary about a third of the time). TSC can cause benign tumors to grow in any of your vital organs including the heart. So I don't feel comfortable unless we do more testing.

I saw the cardiologist on Friday and he ordered more testing, an ultrasound and a stress test (you know, the dreaded treadmill). These are scheduled in the coming month. I will keep you posted about what's going on. Before we go any further, I should probably fill you in on what's been happening with my heart. About three weeks ago I was on a day outing with my family and we were taking a walk when all of a sudden my heart started misplacing beats (that's how I describe palpitations) after a few seconds of palpitations it turned into racing and pounding. So fast and so hard that it took my breath away. It was hard to breath and I felt lightheaded (like I was going to faint) and dizzy and I felt overheated so I had to take off my jackets (in the snow, I might add). This lasted several minutes (way too long) and part way through it felt like my chest was tightening. As my heart slowed somewhat I got a really sharp pain in my right shoulder. This lasted about 5-10 minutes with my heart still beating too rapidly and still feeling like I couldn't get enough oxygen. Scary stuff. Up until this happened I had only had palpitations occasionally (like maybe once every couple of months) during the last about four years. My mom has palpitations so I kind of expected to have palpitations also, but not an episode like this. Since that episode I have been having palpitations almost daily, multiple times a day. Whenever I get them I feel light headed and dizzy and I feel like I can't breath. I have also in general just been feeling exhausted and have a lack of energy. I have been waking up at night with my heart racing. Some other things, may or may not be connected, I have had a low fever (off and on) for over a year now (docs don't know why), my memory has been REALLY BAD lately (and I mean so bad it's scary...not just memory but thinking in general is bad), my eyesight is getting worse weekly and now I am often having trouble focusing my eyes. On top of all that I am losing my hair. Hopefully we can figure out what's going on soon because I sound like I am falling apart.

Thankfully Friday night Isaac came home. It was kinda hard to be thinking scary things about my heart all week without really being able to share it with him. Saturday I felt awful...it was one of my worst days...fever, heart acting up, really super weak (I almost couldn't stand or walk), exhausted, eyes not focusing...and then, God gave me a blessing through my children. "Mommy, mommy come outside fast!" And there before my eyes was the most beautiful rainbow. I was blessed to be able to get a picture of it before it slowly vanished.God's rainbow is a promise to us...Genesis 9:16 "Whenever the rainbow appears in the clouds, I will see it and remember the everlasting covenant between God and all living creatures of every kind on the earth." The covenant this refers to is God promising never to destroy the earth again with a flood. But on Saturday, that rainbow meant more than that. It was a promise to me from God that he was with me and that no matter what is happening there is beauty surrounding me if I only look up to the sky.

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

Locked Out

A lot of kids for a very small house!

Has anyone every forgotten their password? I did and the password reset didn't seem to be working so I was locked out of my blogs. Very, very frustrating. I finally figured out the password I had forgotten.

Sorry not to be around for so long. Everything is going (I was about to say okay, but that's not true) not so great. I have been taking care of my five nieces and nephews for almost three weeks now. That makes eight kids to take care of...and to make things harder...the youngest four don't speak any English. To make things worse, I got Shingles about a week into them being here (probably from all the stress). The pain hasn't killed me but the itching might make me go crazy. I am praying that this goes away as soon as possible.

Also, we found out yesterday that my mom has pnomonia. She'll end up in the hospital on Friday if it isn't gone. My dad also has bronchitis.

And to top things off, yesterday my grandma fell and broke her hip. She had surgery today and is doing okay.

Seems like a lot of bad things have been happening to us. Under attack? As soon as I can I will post an update I wrote about Joel for our Christmas card. Funny to say but I have missed you all. Hopefully soon I will have more time to post.

Our Homes and the Fire

Here is an email I just sent out to friends and family: Hello to all, I just wanted to send out an update. We found out this morning that my parents and grandparents homes have burned to the ground. There is video of it at http://video.knbc.com/player/?id=170532. Our home is still in grave danger. The fire is headed right for it. The good thing for us is that we are so close to downtown Fallbrook. The firefighters are going to do their best to save downtown. My brother is a reporter and he has stayed in Fallbrook at the command center. He said it is concievable that the entire town could burn today. Please pray that our home is spared so that we can help my parents and friends affected by the fire. Also, please pray for his safety and for my parents and grandparents (for peace). My parents have had a great attitude about the whole thing, that it is just stuff and we are all together and safe. (It is sad, though, to lose my great-grandma's china and my other great-grandma's dolls, heirlooms, etc.) I really can't believe this is happening. So many friends affected. Where is everyone going to go? We love you all and are thankful for all your prayers and calls of support. For more posts about the fire go to our family blog...www.rfamilylove.blogspot.com

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.)

Joel's Trembling

After emailing Joel's neurologist with the details about his whole body shaking (I wrote about it in my last blog) she emailed me back and said that because he is aware during the time he is trembling it could be a movement disorder/tic which can happen to children with TS or developmental delay. She said we should just watch it for now and if he is having more episodes we can either run a videotelemetry EEG or we can lower his seizure medications (I guess the meds can sometimes make a tic disorder worse.) The problem with lowering his meds is the seizures could come back (and if these episodes are seizures lowering his meds would make them worse.) Please pray for wisdom for Isaac (Dad) and me (Mom) in upcoming decisions we will have to make regarding this issue. Also, please pray that the trembling would simply go away. We know that ALL things are possible through Christ. If it is his will, He can make the shaking go away. "...with God all things are possible." Mark 10: 27

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.