Joel's Journey

Well, Hello There!

2012-01-06T23:33:00.000-08:00

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

Summer's Comin'

2011-04-16T23:10:00.000-07:00

I'm the first one standing in line. For my day in the sun, I've been workin' 'till the sun don't shine.
Clint Black ~ Summer's Comin'

First of all, yes, I listen to and actually like {may be more like love} most country music. Secondly, It has been such a beautiful day that I've had that song floating through my head all afternoon. So warm, in fact, that it felt like mid-summer. I was born and raised a Southern California girl.
I love the heat.
I love sunshine.
Therefore, I love summer.
This year I have an extra reason to love summer...
baby girl sun dresses!

I just had to share these pictures with you. She looked adorable in her sweet little dress today. I am so in love with this little girl. Actually we all are. You should see how her brothers adore her. It's sweet.

Patience

2011-04-14T16:38:00.000-07:00

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.

Four, Six and Three

2011-04-02T23:37:00.000-07:00

Emma Rose

Four months old today.
Six days off of oxygen.
Three nights off oxygen.

:) Thank you, Lord!

We are blessed. :)

It's late.

More to come later.

Goodnight.

13 and Counting

2010-12-14T11:54:00.000-08:00

This picture was taken Saturday when Isaac got to see and hold his daughter for the first time since she was born over a week earlier. Actually, it was his first time holding her. Today was Emma's 13th day in the hospital and my 13th trip from Fallbrook to San Diego (Rady) Children's Hospital. It was 13 days ago now that I had her. And I am 13,000 times tired and ready to have my little girl at home. Our wonderful nurse yesterday was the first person that I felt was really encouraging. God knows when we need (and by need I mean "have to have!") encouragement. Yesterday was a big day for Emma. She had an MRI in the morning. We got the results really quickly. The neurologist said the MRI didn't show any brain damage due to lack of oxygen. It also didn't show any tubers (what Joel has), so we can pretty much rule out her having TSC. Praise the Lord! Just to avoid any confusion, we did not suspect that she had it, but knowing that she doesn't have it is great. The MRI did show some fluid in part of her brain, but that could be due to the edema that she had for several days after birth and due to normal birth trauma. We are just going to have to watch it to make sure it goes away. Tomorrow she is scheduled for another 24 hour repeat EEG because the first one showed decreased activity. They are thinking this was probably due to the swelling in her body, but want to make sure everything looks normal now. Yesterday her antibiotic ended. Her labs are looking good now so they felt safe ending it. That meant that her Venus line into her belly button was able to come out which makes it much easier to hold her. :) For the last few days her breathing has been really fast, which isn't good. It's going to have to slow before they can start weaning her off of the Canula. She's going to have to be off of the Canula for 2-3 days before we can bring her home. So we're still looking at having her there probably another week. I still have high hopes that she'll be home in time for Christmas, though. The other issue that has to resolve before we can bring her home is eating. She is doing pretty good in this department with the exception of her breathing rate. When she is breathing so fast she can't take a bottle because she could breath in the fluid and get pneumonia, which could kill her. She has to be taking all feedings by bottle before I can try breast feeding her and before she can come home. The good news on this front is that she is very close to her goal amount to eat! She is also waking up hungry at her feeding times. A good thing. Please pray specifically for her breathing to slow and her oxygen rate to be good. These are our main hurdles to taking her home. Thank you for taking the time to care in this busy season. Emma's newest thing is holding her pacifier. :) It's so cute!

Friday Update

2010-12-10T10:47:00.001-08:00

It is hard to blog tonight. I have been feeling down since I left the hospital. It was unusually hard to leave Emma tonight.

The picture above was from yesterday. Emma was a week old and Jason went with us for a visit. It was his first time seeing his sister since the ambulance took her away. He had been begging to see her and his stuffy nose was finally better. I am so glad he was able to see her. It was totally God's timing because this morning the nurse called me to tell me that siblings are no longer allowed to visit due to RSV season. He managed to see her on the last possible day. It was wonderful to have two out of my four together. I can't imagine how wonderful it will be to have all four together.

Yesterday right after we got there they took the CPAP off and put on the Canula instead. It is much more comfortable and a lower level of care than the CPAP. It means she is breathing a little bit better.

This morning when I called to check on Emma they told me that she had started feeding with a bottle. Her first couple feedings went well and she sucked, but her last couple feedings she hasn't wanted to wake up to eat. One of those feedings was me trying to feed her. I think I am realizing how much work we have ahead of ourselves before she can come home.

Today she had an Echo to see if she still has the Pulmonary Retention (I think that is what they called it.) Don't have the results yet. She also had a neurologist come by and check her out. He said he wanted her to have a MRI next week. I believe checking for damage in the brain. I am somewhat worried about brain damage because of how her eyes look when she opens them. I am praying and hoping, though, that it is just all the medications or being so sick that has them not focusing well.

Her bilirubin was 21 Thursday morning. This morning it was 16. Normal is around 8. It was explained to me that when it is as high as 21, it can affect the brain so it is really important for it to come down. She was laying on a photo-therapy light and well as having the one on top for all of yesterday and today and her numbers are headed in the right direction.

Just before I left for the day today, she pulled out the feeding tube that was going through her mouth down her throat. She never did like having it there. I was told the night nurse would put a feeding tube down her nose instead.

I love her so much and just want to bring her home safe and healthy. I was blessed to be able to hold her for two hours today. She snuggles right into me and smiles in her sleep when I hold her.

Praise the Lord:

She came off of the CPAP and is now on the Canula (less support)
She has taken two feedings by bottle well
She is crying stronger

Please pray:

That there is no brain damage
That her eyes are okay
That her bilirubin will continue to come down
That we can increase the amount of breast milk being fed (I just called her nurse and she is up to 9 mls; up from 3 yesterday)
That she will wake up for her feedings and do well sucking from the bottle
That eating would go well so I can start breastfeeding her soon
That her breathing will continue to go well and that she would be able to come off of all support soon
That Isaac's night-time cough will go away so he can see his daughter (he hasn't seen her since the day she was born).
That Jason's and Joel's health would continue to get better
That Jonny and I will continue to be healthy and not get sick
For physical and emotional strength for me as I go back and forth to the hospital and try to heal from having a baby.

Day 7 Update

2010-12-09T10:19:00.000-08:00

Yesterday was day seven. Seven days old and seven days in the hospital. This is what she looked like when I got to the hospital:

Her bilirubin is too high so she spent the day under photo-therapy. The nurses like to make her look girlie, so they drew eyelashes on her goggles. News this morning is that her bilirubin has gone up even more, so she is now also on a blanket that is giving her photo-therapy from underneath as well. The doctors are explaining that the jaundice is because she isn't eating yet, so she hasn't moved the maconium through her system. They did start giving her some breast milk yesterday. A VERY small amount, and they are watching to see if she's digesting it. She did well with it yesterday, but last night wasn't digesting everything, so they aren't giving her as much. I am so thankful that she is able to have some breast milk, however little, because I know how good that will be for her.

In the late afternoon they extubated her. She did well with that and it was fun to see her face without tape for the first time since having her. She now has a c-pap (the tubes going into her nose that are giving her oxygen and can give her some pressure if needed). It seems rather uncomfortable, so I am hoping that really soon she will be able to move to the next level down in nose tubes. They let me take this picture of her before they put a feeding tube down her throat.

And finally, late last night, I got to hold my first daughter. It is difficult because there are so many tubes and wires, but oh so worth it. She feels so tiny and soft. Thanks to the nurse who took some pictures.

While I was holding her she awoke some and I got to see some glimpses of her eyes. She also found her hand and started sucking on her pinkie.

Praise the Lord:

She was extubated and is breathing on her own with the help of some extra oxygen
She is tolerating some breast milk
Her stats look good
I GOT TO HOLD HER! :)

Please pray:

That her bilirubin will come down
That we can increase the amount of breast milk being fed
That she would be able to start eating out of a bottle soon instead of the feeding tube
That eating would go well so I can start breastfeeding her soon
That she could have the c-pap off soon and her breathing will continue to go well
That Isaac's cough will go away so he can see his daughter (he hasn't seen her since the day she was born).
That Jason's and Joel's health would continue to get better
And that Jonny and I will continue to be healthy and not get sick
For strength for me as I go back and forth to the hospital and try to heal from having a baby.

Thank you all for your prayers, thoughts, words of encouragement, and kind helpfullness. They are all very much appriciated and help us to get through this.

Introducing...Emma Rose

2010-12-07T23:39:00.001-08:00

Emma Rose was born 12.2.2010 at 12:20pm. She weighed 8 lbs. and 3 ozs. and was 19.5 inches long. She was a planned home birth which went fine until we cut the cord. She stopped breathing right after the cord was cut and we had to call 911. They transported her to Fallbrook Hospital and from there she was transported to Rady Children's Hospital. This is where she is now, still on a ventilator.

My beautiful little lady is 5 days old today.

This last picture is one of my favorites. I love her hair. It is amazing to me that hair can look feminine. My boys hair was completely different.

I am so in love with Emma, and am so thankful to finally have a little daughter.

There's No Place Like Home!

2010-06-20T22:08:00.000-07:00

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

Day 5 ~ Sunday

2010-06-20T11:12:00.000-07:00

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

2010-06-19T10:29:00.000-07:00

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?

2010-06-17T19:26:00.000-07:00

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

2010-06-14T21:23:00.000-07:00

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

2010-06-01T11:56:00.000-07:00

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!

Joel's Seizures & Vision

2010-04-28T11:40:00.001-07:00

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

Project 365 ~ Day 10 ~ Our Community Center

2010-01-15T22:49:00.000-08:00

Today we had a play date at the Fallbrook Community Center. We are so blessed to have such a great place for the kids to play. I played there when I was a kid, but they have since updated the play equipment (thank goodness...I used to get splinters from the old). Even with the new play equipment, it still is the same ol' place that I played. I love that. I love that when you're there and look around you see trees and greenery. Space. This is part of what I love about Fallbrook. The small town feel. Knowing that when I'm at the community center or going into town, I am going to run into someone I know. Fallbrook has grown from around 30,000 when I was a teen to over 60,000 now, but it still has the same feel. And I get to share my childhood memories with my kids. This particular day, Joel wanted me to help him sit on the big boy swing. He had never swung this way, so I was a little fearful that he would fall and get hurt. But he didn't...he hung on like a big boy and pumped his feet. It was so cute. How did he automatically know that he had to pump his feet to go? Maybe he was secretly watching his brothers do it. Of course, I pushed him as well. And we all had a grand time.

Joel's kisses can still be very wet. Even so, we all love him so much that we enjoy each and every kiss. You can see true big brother love on Jonny's face even though he's getting licked. Although, I'm sure this was followed by "Ewww, Joel!" - with a funny look on Jonny's face as he wiped his cheek off.

We had fun! What a great way to do P.E. for the older two and Physical Therapy for Joel.

To view all the best photos from our time at the community: http://www.flickr.com/photos/46770513@N06/sets/72157623134770897/

Project 365 ~ Day 9 ~ Joel and Blue Snowball

2010-01-14T19:38:00.000-08:00

Every Thursday Joel likes to "GO" to therapy. I mean he LIKES it! As soon as I tell him "Let's go to therapy" he says "GO" and rushes to the car. Today was no different except that today he took Snowball. He has fallen in love with this blue, stuffed bunny and since it's a bunny, it has received the love and name of our real bunny, Snowball. He insisted on taking it into therapy with us. Snowball had to participate in some way in most of the activities we did. It is actually very cute how attached he is to it. He likes to say "Ohhhh, kissy Snowball."

Joel usually gets a sticker after therapy. Today she asked which one he wanted. Knowing that there was no way he could understand or communicate enough to make a choice like that, I asked him if he wanted Pooh. He likes Pooh. He looked at her and very clearly stated "Elmo". He likes Elmo more than Pooh. Thankfully they had an Elmo sticker to reward his communication. When Isaac (my husband & Joel's daddy) saw the picture below, he was surprised. He reminded me that Joel doesn't like wearing his stickers. I don't know what was going on, but on this day Joel asked me (in his way) to put the sticker on his shirt. Of course, it didn't last long and then he transferred it to my shirt. And then back to his. The whole time not letting go of Snowball.

As you can see, he never did let go of Snowball. In fact, Snowball went with us into Costco after therapy. Snowball and Joel want to "GO!" somewhere, anywhere, anytime. It really is a blessing that this child likes to GO places in the car because he has spent A LOT of time in the car going to doctors appointments. As I drove away from therapy, I saw some people getting on a bus and it made me think about how blessed we are to have a car. It is one of those things that we tend to take for granted. There are many people without a car and if we were one of them, our life with Joel would be so much harder. On top of it being more work for us, he would probably not receive as much medical intervention. So, thank you God that we have a car. Thank you that we live in America where there is excellent medical care, excellent doctors, medicine available, ect. Joel is so blessed to have been born here. It is something we think about occasionally, if he had been born in a third-world country, he would be lying on a mat somewhere seizing constantly. He wouldn't be walking, talking, smiling, interacting. He would be a lump...like he was before his surgery. So again, THANK YOU LORD!

While I have these pictures of Joel in his carseat, I want to mention how much we have appreciated this car seat. I did a lot of research before we bought it, and I truly feel it is not only very comfortable, but it is extremely safe as well. The sides are so protective and keep him upright with his neck in a comfortable position when he is asleep. Joel and I both love his carseat made by Recaro.

And oh, I want to kissy Jo-jo...right in his kissing spot - the dimples just to the left of his beautiful smile (the right side in the picture)...and thank God that he is a part of our family.

One Good Veggie Recipe

2010-01-13T23:18:00.000-08:00

I made some yummy asparagus with dinner tonight and thought I would share the recipe with you. We have been on an adventure trying to eat as healthily as possible because of Joel (well, really it's good for all of us!) I don't think I had eaten asparagus prior to one year ago. Now we love it. Well, all except Jonny and Jason...they tolerate it. When we ate it tonight, Joel couldn't get enough. He ate all of his and about half of daddy's. Steam asparagus for 3-5 minutes, depending on your preference for crispness. When done steaming, saute in olive oil with sliced raw almonds, garlic salt, lemon juice and zest (peel). A few notes: * I have never done the zest. It is still a delicious dish without.

* I don't saute hot or for long. The asparagus is already cooked from the steaming and I know olive oil looses it's nutritional benefit when it's heated.

* Most of the time Costco sells a bag of Organic Petite Asparagus in the frozen veggie section. (The back of that bag is where I got this recipe.) It's three pounds for (if I remember correctly) about $10. I prefer frozen vegetables because they are frozen right after harvesting, therefore ensuring we get the most nutritional benefit. Also, besides all the well know benefits of eating organic, certified organic foods are Non-GMO, and can never be genetically modified.

Project 365 ~ Day 8 ~ Another New Word

2010-01-13T10:26:00.000-08:00

Today Joely looked at me and said "hant"...I couldn't understand him, so I asked him "what, baby?" He told me "Elmo hant!" After a little bit of thinking I figured out he was saying "want". Elmo wanted one of the pretzel sticks we were eating. I love that he's trying out new words. Pretend play is one of the steps of speech. He has to go through each step before he can reach the next level. Lately he has been pretending with his stuffed animals and other toys. He pretends that his little dinosaurs are eating his food. He gave me Elmo a few days ago and said "diapy Elmo". Diapy is what he calls diapers. He wasn't satisfied until I had put a diaper on Elmo. I love this stage. It's so much fun!

Project 365 ~ Day 7 ~ Making Cookies with Jason

2010-01-12T22:23:00.000-08:00

Okay, here I go. I am going to tell you a story through pictures. Today Jonny went with Grammy, Grampy, and his daddy to work on my grandpa's house. Jason was really disappointed that he didn't get to go with them, so I told him I would make cookies with him. That wasn't quite good enough to make him feel better, so I was a softy and said he could make a really big cookie for himself. THAT made him feel better! I don't let them have much sugar, so cookies are a real treat. He loves baking (really anything to do with cooking) and I let him choose what cookie we would make so he choose No-bake Fudge Cookies and was excited. I will admit it, I usually avoid baking/cooking with my boys because it is so much extra work, extra time, and extra cleaning. It makes me feel guilty admitting it, but it's the truth. What surprised me was that I truly enjoyed this time with my boys. I really should do it more often. Extra bonus: it makes a good math lesson.

Jason made plans to share cookies with our neighbor kids before he started. He was so excited, it was cute. He did everything exactly as I told him to.

Joel was hovering near the whole time. I think he sensed we were cooking something with sugar.

After the first sheet was spooned out we set it aside to cool. Joel found a chair located conviently close to the cookies.

They were very tempting. So tempting, in fact, that I caught him licking one. I had told him not to touch them...and he was obedient...kinda. He didn't touch, just tasted. But he was trying to sneak the taste, and I caught him.

And that's just the problem, I caught him. When I told him not to lick the cookies, he got his adorable pouty face. It comes complete with teary eyes and pouty lip. I know exactly where he got that pouty lip because I've seen my baby pictures. This is the first time I've been able to capture the lip in a picture. Whenever he gives me the pouty face I can't help but smile because it tears at my mommy heartstrings with its cuteness.

I hate to say it, but I guess it worked, because this is the next picture:

I gave Joel a spoon to lick and he was a happy boy, once again.

I also gave Jason a spoon to lick and let him scrape out the bowl. According to my kids, this is the best part:

When the spoons were all licked, Joely couldn't contain his love for a brother that made him cookies. He just had to kiss Jason with that chocolatey face.

And Jason loved it!

What a sweet ending to a wonderful day. We'll have to do this again soon.

A friend asked me for the recipe, so here it is:

No-Bake Fudge Cookies

Makes 1 dozen

Mix together in a saucepan:

2 heaping Tbsp. cocoa

1/2 stick margarine (butter is healthier, non-dairy: Organic Earth Balance)

1 cup sugar (I use organic, non-bleached cane sugar)

1/3 cup milk (non-dairy: almond or rice milk)

Bring to a boil and boil for one minute. Remove from burner and add:

1.5 cups quick oatmeal

1/4 cup peanut butter

1 tsp. vanilla

Stir until oats are coated. Drop by teaspoonfuls onto waxed paper. Cool before serving.

This is a great recipe to make with kids. It has been in my family for a while. If you try it, please leave a comment letting me know what you think.

Project 365 ~ Day 6 ~ Jo-jo

2010-01-11T22:53:00.000-08:00

Joel started saying something new today! He figured out how to tell me he wants something. I will start off by telling you that Joel has many nicknames. The nicknames started when he was little with Joely, Joely-poly which turned into Roly-poly, which then turned into Joely-poly-oly. After that he earned the nickname Curly because his hair was so curly and Monkey Boy because he climbed everything. A few months ago my mom wanted to give him a name he could say, so she started calling him Jo-jo (Joel calls Jonny "Jon-jon", so we knew he could say Jo-jo). It is so cute when he calls himself Jo-jo! Today he figured out that if he wants more food all he has to do is hold out his plate and say "Jo-jo". He figured out this also applies to a lot more than just food. So he has been going around the house pointing at things he wants and saying "Jo-jo". It is fun to watch him figure out the world around him. I thought you should know, I can't resist a picture with all three boys in it. I love that they have each other and they are so close. Joel was so cute kissing Jonny. I find it interesting that the bond between Jonny and Joel (5-year age gap) is very different than the bond between Joel and Jason (2-year 2-month age gap), and again different from the bond between Jonny and Jason (2-year 9-month age gap). Jonny and Jason are best friends. Joel's bond with Jonny is very special. Jonny is the big brother, he takes care of Joel, he helps him and teaches him. Jonny sleeps next to Joel and the first thing Joel does in the morning is wake up Jonny with kisses and banging or sitting on his head, pulling on his ear, etc. Joel looks up to Jonny and thinks he is the greatest thing, showering him with kisses and hugs often. Joel's relationship with Jason is a little different. Joel loves playing with Jason, although he get jealous easily. Jason likes to try and be the big brother Jonny is, but because they are much closer in age, Joel won't have it. When Jason tries to take Joel somewhere, Joel squeals and sits down in protest. When Jason tries to love on him, Joel sometimes kisses and hugs him back, and other times pushes him away. Jason is such a sweet, affectionate boy and sometimes I feel bad for him because Joel doesn't always love him back the way he wishes. I believe Joel thinks a lot of what Jason does is bossy. The boys all have their occasional squabbles, but they get along the majority of the time and love each other deeply.

So sweet!

Project 365 ~ Day 5 ~ Zip Line and Bunny Love

2010-01-10T00:13:00.000-08:00

So I don't know where this idea came from, but the boys wanted to make a zip line. They bought the zip thingy a few days ago and used one of Daddy's ropes. Of course, Daddy helped them. They had fun going down it several times each. After that it was Daddy's turn to go down the zip line, so he did. I am so sad I went inside and didn't get to witness it (or take pictures) because the story I heard later at dinner was that the rope broke and Isaac fell on his bum from several feet up. No more zip line. I guess they'll have to get a stronger rope.

And while they were doing this, what else would Joel be doing but playing with Snowball (or as Joel calls him "Dumball"). He is so in love with this bunny!

Project 365 ~ Day 4

2010-01-09T23:42:00.000-08:00

Getting ready for my friend's wedding today, Jason said somewhat dismayed "Mommy, I look like a banana!" I have no idea where he came up with that...but it gave me a good laugh! He was adorable in his suit.

Project 365 ~ Day 3

2010-01-08T23:13:00.000-08:00

I looked over at Joel today as he sat in his highchair, and he gave me a huge grin. He is so sweet, cute and beautiful. I admire him every day. He has these gorgeous dimples that I love to kiss just to the side of the left corner of his mouth. (Right side of his mouth in the picture.) The bigger he smiles, the more you can see these beautiful dimples. (And yes, I am a mama in love with her babies...and they will all be my babies as long as I live!)

When his big brothers overheard me telling Joel he was beautiful, they said "MOM...he's a BOY! Boys AREN'T beautiful!" I have to disagree with them, boys CAN be beautiful. :)

Project 365 ~ Day 2

2010-01-07T23:58:00.000-08:00

Jonny has a bad cowlick on the back of his head. So we have been keeping his hair short to try and control it. When it starts to grow out, it is really hard for him to smooth it down. He got his hair cut yesterday, so today when he was trying to brush his hair he got frustrated that he couldn't get his cowlick to lay down. He looked at me with a little grin and said "Some cow licked my hair REALLY good when I was really young!" I just cracked up! :)

Project 365 ~ Day 1

2010-01-06T23:45:00.000-08:00

Joely was talking to his "Nonni" on the phone. It was the first time he held the phone by himself. He was so cute listening, talking (his baby "I'm trying really hard to talk" talk), and even kissing the phone at one point.

Project 365

2010-01-06T22:48:00.000-08:00

I am so excited to be participating in HM's Project 365. I am going to be taking at least one picture every day this year and posting it along with a caption, quote, or the story behind the picture. The idea is that I get in the habit of taking pictures of every day life...capturing the little moments, the ones you don't think about photographing but miss as your kids grow up and life moves on. By writing an explanation with the photo, I am capturing the memory more clearly...before the emotion has faded. And posting one picture (although I may post more quite frequently, because I can't take just one) with a short explanation is so do-able! Besides that, you all will know more about Joel and our life with TSC. I would love it if you followed my journey with this project here. I would love it even more if you would join me on this journey. To read more about how to do it (it's so easy!) click here.

Merry Christmas and Happy New Year!

2009-12-26T22:13:00.001-08:00

We hope you had a wonderful Christmas and are looking forward to starting a new year! Here is our 2009 family picture taken by Tom Pfingsten (my brother) of Brooktown Photography.

Wordless Wednesday ~ At the Fair!

2009-07-01T12:53:00.001-07:00

Gray and dreary...

2009-06-05T21:33:00.000-07:00

...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

Not so Wordless Wednesday

2009-05-27T15:30:00.000-07:00

I was going to post this picture for Wordless Wednesday, but since I had already made the picture into a poster with Heritage Makers, I thought I'll just show you that. Aren't my boys sweet! I love this picture, it's so peaceful. I found a quote about brothers from the Quote Gallery. It will be an 18x24 poster that I will frame as art for my home. I love Heritage Makers! ~

Please Pray

2009-05-22T12:37:00.000-07:00

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!

Happy New Year!

2009-01-01T23:22:00.000-08:00

Hello to all! It has been too long. Sorry for that. One of my resolutions for 2009 is to be better about posting to this blog. My goal is at least once a week, more if life permits. For now I simply wanted to say Happy New Year from R family. We love you all. I am hoping to post a recap of our life in 2008 tomorrow (at least the time since my last real post). Until then...

Camping

2008-08-29T00:11:00.000-07:00

We are attempting our first camping trip with Joel. We are leaving right now and will be back in a week-and-a-half. I will post all about camping life with a special needs child when we get back. Have a great week. .....on the road again...I just can't wait to be on the road again...

VBS on Outrigger Island

2008-08-06T21:47:00.000-07:00

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.

Joel's Surgery...and more pictures

2008-07-31T10:04:00.000-07:00

I have been fielding some questions about Joel's surgery lately which has really got me to thinking about it. I realize that I have never really posted details and I have been thinking that I would like to help people who may be in the situation where the surgery may need to be considered. So, very soon I will be doing a several part post about his surgery. It really changed our lives! :)

Here are some more of my favorite photos from the last month:

My sister-in-law and I did some (TONS) of canning.
I am going to have to post about it 'cause I have tons of great pictures.

Jonny broke his ankle. What a pain...literally (and figuratively)!

My boys!

Joel likes Grampy's hat...or any straw hat for that matter.

Brothers, aren't they cute together!

I've got to run to Joel's OT (Occupational Therapy) now, but I still have more pics I want to share with you later...that's the problem with not posting for a month and being a person who LOVES taking pictures. Now sharing them all at once for you it seems like a lot, but really it's no more than I would have shown you if I had been posting regularly.

I'm back...

2008-07-29T23:15:00.000-07:00

...and can't believe it's been a whole month since I've posted. I am so sorry. This past month has been very difficult in many ways and I just didn't have time to post due to added responsibilities. I am extremely exhausted right now, so I will leave you with some of my favorite photos from the past month and I will try to write an update in the next few days.

More to come...

Happy 5th Birthday, Jason!!!

2008-06-26T23:09:00.000-07:00

I can't believe you're five today. You are growing up so fast and I love the young man you're becoming. You have such a sweet spirit and I love how you love to have fun. You're giggle makes everyone around you light up with huge smiles and joy. Your brothers love you and enjoy playing with you. I love how you guys are such good friends and how well you get along. My prayer for you is that you will continue to love the Lord with all your heart and that you will hunger to learn more about Him as you grow. God blessed me and Daddy so much when he gave you to us. I thank him every day for you. I am enjoying watching you become more adventurous, outgoing, and imaginative. I hope you had a great day today. I'm looking forward to your first train ride and the beach on Saturday.

Love, Mama
Note: We had a fun day today spending time as a family, then we had a special family dinner. Our tradition is the birthday boy (or girl) gets to choose their favorite food for their birthday dinner. Jason chose KFC and brownies. I would have preferred to cook something, but that's what he wanted. On Saturday we will finish his birthday celebration. We have another tradition we started with Jonny. Each child gets his first train ride on their fifth birthday then afterwards we take a picnic to the park or beach. Jason wanted the beach with sand and since Jonny currently has a cast on his ankle and can't go in the sand we modified our plans from going to a beach on Coronado to going to La Jolla Shores. La Jolla Shores is a great beach that has a grassy park-like area as well as sand and swimming. It's a wonderful beach for little guys because it's shallow for quite far out and it has nice sand (not too rocky). We are all super looking forward to Saturday. My mom and dad will spend the day with us. Happy birthday, Jason! We love you!

Living with TSC...

2008-06-05T22:15:00.000-07:00

...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.

Jonny's Piano Recital

2008-05-29T23:22:00.000-07:00

Look at my handsome boys! Growing up so fast.

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

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

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

Good News

2008-05-26T23:25:00.000-07:00

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...

2008-05-26T00:02:00.001-07:00

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

Joel's Developmental Evaluation

2008-05-25T15:21:00.000-07:00

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

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

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

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

Internet problems

2008-05-23T14:59:00.000-07:00

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

My Miracle Boy

2008-05-20T19:23:00.000-07:00

Yes, I know his face is messy.
It was the first time he fed himself with a spoon!
But look at that JOY.

This is his playful, silly face. A face that I want to cover in kisses. My little goober was in a great mood that morning (he does like oatmeal)!

Miracles can happen to those who love the Lord.
Blessed are they that believe in Him, His kingdom shall be yours.
(Miracles Can Happen by Sandi Patty)

This part of this song floats around in my head often. My favorite part: miracles CAN happen. Now, I'm not saying miracles WILL happen to those who love the Lord. I am saying they CAN happen. I have been blessed by seeing multiple miracles happen. Most have been through Joel. It is not easy to be a parent of a child with special needs. But it definitively has its rewarding moments and God has given us many of these.

There are too many to list, but I will highlight a few. It's a miracle...

...removing almost a quarter of Joel's brain stopped the seizures. He had constant underlying seizures with various other seizures approximately 4-30+ times every day from 6 weeks old until December 14, 2006 when he had the surgery that God had led us to. (That's a whole post of it's own!)

...removing so much of his brain didn't impair him further. A test before the surgery revealed that part of his brain wasn't working. When they removed the large tuber the surgeon said it was calcified and the brain tissue surrounding it was irritated. This explained why he had almost no control over his right hand and why he used to stare at it for hours...it probably had a funny feeling in it. The fine motor strip (area in the brain that controls fine motor skills) was irritated. Gradually after the surgery as the irritation went away he regained use of his right hand and stopped holding it up and staring at it. He still prefers his left hand, though.

...Joel can walk and run. The first fifteen months of his life we didn't know if he would ever do these. All he would do is lay there like a lump. Sometimes he would play with a rattle or small toy for over an hour (which concerned us about Autism). He didn't sit up until fifteen months old (a week before his surgery) which scared us. It's a miracle that Joel crawled two months after surgery and walked four months after that (six months post-surgery).

...Joel can see. Pre-surgery we didn't know what Joel could see. We knew that he could see light but we didn't know if he could see anything more. He never focused on faces or much of anything. He didn't interact with us at all. We didn't know if it was because of the seizures or very poor eyesight. Since the surgery we know for sure that he doesn't have any eyesight in the right side of both eyes, this is because the part of the brain that controls that was removed during the surgery. But we also now know (the Dr. said he believes) that the eyesight that Joel does have is good. :) Some days it is better than others. If he is tired, not feeling well or over-stimulated his eyesight will become worse and he gives a lot of blank stares, but when he is feeling good we know he can see. His eyesight is a bit slow and it is hard for him to follow with it, but it improves every month. I get tears of joy every time he looks deeply and lovingly into my eyes and gives me his sweet little dimpled "I love you, Mama!" grin.

...Joel smiles! A smile was very rare pre-surgery but now is a regular occurrence. I sure LOVE that dimpled grin!!! He is one little boy who now enjoys life and knows what joy feels like!

...he likes to play. Joel has made a connection to his family members. He likes to play with his brothers and he even gets jealous of Jason. This may not sound so great to you...but it is. It means his thinking is complicated enough to have that emotion and have the spunk to do something about it (like get Mommy or Daddy's attention). Through a special type of therapy called Floor Time he has made a special bond with me. Floor Time teaches my how to play with him where we can connect and interact. It helps increase his communication. And boy has it helped. When we started it (about 6 months ago?) he was not connected to me emotionally. We had both been through a lot in his little life and that special bond had simply never formed. I was his caregiver but he thought he didn't need me for anything else. Thus, he didn't communicate with me, he didn't like to play with me (or anyone else), he would only play with a toy if I put it in the middle of the floor and left the room so he was alone. Now it's a whole different story. He LOVES playing with me and doesn't want to play by himself. He makes eye contact, he grins at me, he even laughs at me. He gives me kisses while I play with him. The teachers who are teaching us Floor Time even commented today how much they saw the connection between us and how sweet the loving looks he gives me are. That in itself is a huge miracle.

...Joel is doing so well with Gross motor skills that he graduated from physical therapy last November. A mere 11 months after surgery. Not only can he walk and run, he is now an expert climber, he loves to throw balls and he has just started kicking them.

...he is doing excellent (for him) in occupational therapy. We worked for about a year on getting him to drop a toy into something, anything. I started to feel like he never would. The goal was a shape sorter. Well he now can do a shape sorter with two shapes and he is great at (and loves) dropping things into other things. :) He has also conquered many difficult cause and effect toys. Even though he is still really behind his age group, his fine motor skills are starting to catch up. Miracle!

...it is looking more and more like he isn't Autistic. The Autistic features he has had his whole life are slowly disappearing. What's more, I have discovered through an excellent Vision Consultant who God placed in our lives that most of the concerning behaviors can be explained by his visual impairment. That other children with visual impairment have the exact same difficulties. 1 in 3 people who have Tuberous Sclerosis also have Autism. Those are high odds and along with behaviors we were seeing we were concerned. But amazingly (God IS amazing!) those behaviors no longer concern us.

...Joel is starting to talk. This miracle is the most recent and I am still walking on cloud nine. Again, this is a result of Floor Time. We were really starting to feel like we would never hear his sweet little voice forming words. As he is approaching three years old it really concerned us that he didn't have any words (other than an occasional "bye-bye", which became rare). In the last month he has gone from pretty much no words to a small (very cute) vocabulary. I would say he now has about 20 words including animal sounds. And sometimes he imitates words we say really well. Even if we don't hear them again he is learning.

There are so many more but this post is already way to long. I would like to tell you one last thing about what God has done in our lives: he sends along just the right person at the right time. He has granted us with wonderful doctors and especially wonderful therapists. He has given us a wonderful support system (our family, church, friends, and even the Tuberous Sclerosis Alliance in Southern California). He has guided us to exactly the thing Joel needs at the time, whether it be surgery or a certain type of therapy. He has guided our footsteps and been with us every step of the way. THAT is truly a miracle.

P.S. One last miracle. Joel is feeding himself with a spoon now. Started doing this about three weeks ago. Messy but wonderful.

Indio Weekend: Part II ~ Slideshow

2008-05-16T01:37:00.001-07:00

Where did I leave off?

2008-05-13T19:50:00.000-07:00

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

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

Beauty & Joy

2008-05-02T09:59:00.000-07:00

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

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

Mommy (me) & Jonny on the tour.

We got to pet the camel!

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

The hippo was awesome!

Sweet Little Boy

2008-04-22T00:37:00.001-07:00

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...

2008-04-20T23:42:00.000-07:00

...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.

Doctor visits...

2008-04-11T22:11:00.000-07:00

...seem to be the theme to my life. Joel and I both had appointments this past week. We both got good news. My heart is fine. It is good structurally and in good condition for my age. I do have SVT (Supraventricular tachycardia). It can be caused by caffeine, but since I cut that out about a month ago and am still having the irregular heart beats it is most likely caused by "emotional stress". Imagine that. Stress. For those of you who have just recently started reading this blog and haven't seen my other blog, I have had more than my fair share of stress in the last 2+ years. Joel was diagnosed with Tuberous Sclerosis at nine weeks old just over two years ago (November 2005), had seizures non-stop until doctors removed almost a quarter of his brain in December 2006. In October 2007 wildfires raced through southern California destroying both my parents and my grandparents homes (my parents are still living in a trailer in our church parking lot). Mix with that Isaac being out of work a lot (the last several years haven't been great but 2007 was our all time low since starting in the construction trade and owning our home) and many medical bills over the last couple years. Also mix in weekly doctor visits, therapy, therapy, and more therapy for Joel and add the fact that I am home schooling the boys (there...I said it...I'm outed...and this is likely the last time I'll say it for our safety). See what I mean when I say STRESS! So the prescription for my heart is to take daily walks of 30 minutes to try to alleviate some of the stress. (The problem is that trying to come up with the time to walk is adding stress.) Oh well, at least nothing major is wrong! :) Joel had a renal (kidney) ultrasound a week ago. He saw the neurologist on Tuesday who told us the results of the ultrasound were normal! And, I don't remember if I told you that all the blood work came back normal! So everything is looking good for his kidneys. :) Yeah! Only problem is that the blood in his diaper for a week is still an unsolved mystery. The neurologist did say that small kidney stones wouldn't show up in an ultrasound and it is a side-effect of the anti-seizure med he is on (Zonegran). (To explain the blood, I am thinking that maybe he passed a small kidney stone.?) He suggested doing a CT Scan of Joel's kidneys but that would require anesthesia. After discussing it and noting that there is nothing to do but take him off the medication (which we are trying to do anyway) if we were to find small kidney stones, and since he hasn't had blood in his diaper for almost two weeks, we decided that IF we see any more blood at all we will go ahead and do the CT Scan, otherwise we will leave well enough alone. Other than his kidneys, our visit with the neurologist wasn't too encouraging. I think Joel has been having great improvement in the development area. But, as soon as that was out of my mouth, the neurologist started asking me questions like "Can he talk in sentences?", "Well, can he talk in phrases?" (the answer to both of these is "no"), "How many words does he have?". When I answered with " about 4 or 5" I got raised eyebrows from him. Other questions about his development went about the same as this. Here's the thing, it's not about what he can't do...it's about what he can do. He can walk, run, climb, kiss, smile, say "Dada", "pu" for up, "out sss" for outside, and "ma" for more (only sometimes when he really, really wants something). He is imitating and he laughs when other people laugh at him (I have been informed that this is showing a sense of humor which is a stage of development). He can put the stars on his stacker toy and he can drop the coins into his toy piggy bank (finding the slots is hard work). He can even do an easy shape sorter although we are still working on this one. He is now playing with me when before he would only play with a toy if he was alone in the room. He seeks me out to play with him, help him, and just give him attention. He communicates with me in whatever way he can (mostly in body language). For a child who we are wondering if he has autism these things are huge. (And largely in part to a type of therapy called Floor Time. I am a huge advocate of Floor Time. I will post more later explaining what it is.) But the neurologist didn't seem to see all these things as the greatest progress. He asked if he has had the evaluation for autism yet, which he hasn't. It is scheduled for the end of May. It was discouraging to be discussing autism instead of all the great progress he has made. I decided that in the end he is the same child that I went in there with and autism or not, he is making great progress. I am sorry that it has taken me so long to make this post...I know that you all were waiting to find out the test results. It took me quite a while to process the results of this week and I was trying to cut down on my stress (since it was a rather stressful, busy week...tax season just makes things worse) by completely avoiding the computer. I think this is the first time I didn't even turn on the computer for three straight days since we bought it. It is good to be back though and thank you for sticking with me. Annie

Beauty is...

2008-03-29T01:03:00.000-07:00

...little rainbows dancing around on your ceiling from a chandelier that you once admired at your grandfathers house.

...two little boys helping their daddy with cheerful hearts.

...your sweet baby boy enjoying the outdoors while the sun lends him a golden halo.

...this baby boy, who we thought may never walk, exploring with an independent spirit.

...in the eyes of the beholder.

...all around us, if we only look.

Thank you, Lord, for surrounding us with beauty. Help us remember to always look for the beauty in life. Thank you for these moments in the past few days. Amen.

More Tests

2008-03-26T22:24:00.000-07:00

My day went nothing like I expected. It started with a call this morning from Joel's therapy office saying that his therapist is sick, so his therapy was canceled. You see, God knew how my day was going to go before I knew. At the time I thought nothing of his therapy being canceled. I just thought "great, that makes my day easier". So, right after the call I woke up Joel and took him fasting to get his blood work. The blood draw went as good as can be expected. He's such a good little boy. Only cried a little. :( My sweetheart. They took the maximum amount of blood allowed for his weight and may still need us to come back in a couple days to give more. I guess there were a lot of tests ordered. There was a huge wait when we went to the lab so I ended up missing my appointment for my Echo (heart ultrasound). I went as soon as we were done and explained what had happened and she rescheduled me for 12:30. That was exactly the time I would have been leaving to take Joel to therapy. So see, God knew and he had already arranged for me to be available. My Echo went well. She said she didn't see any tumors (which TSC can cause if I carry it). Also, my heartbeat was fast again. The tech didn't say any more than that. Just that the doctor will give me the results in about a week. I got a call this afternoon from Joel's pediatrician saying that they had the results from the urine culture and it was negative. I guess that just means that he doesn't have an infection. So that's good but to me that just points to his kidneys as the problem even more. I am awaiting the results of his blood work anxiously. Isaac got home today and took us out to dinner to "give me a break". :) Isn't that sweet? It's so wonderful to have him back home with us where he belongs. The kids lit up when they saw him. They love him so much and need their daddy to be around. It looks like he may be going back to work in El Centro again next week which means he will be staying away from home again. It is about a three hour drive one way from our home. The company he works for has picked up a long term job there and he is waiting to get a call saying if he was chosen to go or not. Don't know what I will do if he has to go long term. :( At least I get to see him on the weekends. I know there are many military families who are separated for months on end and I really respect them for the price they have paid to serve and protect our country. Thank you to all our military. I am going to bed now and I don't have to sleep alone tonight! :) Thank you, Lord. Goodnight.

Wordless Wednesday: Easter Pictures

2008-03-26T17:36:00.000-07:00

Crazy

2008-03-25T15:50:00.000-07:00

And just when I thought life couldn't get any crazier...meet today and tomorrow. Today I woke up calling the doctor. This thing with Joel has just gone on too long and I told them I am not comfortable waiting any longer. What prompted this? Blood in his diaper again last night. He has been having blood in most of his diapers. What happened over the last week, you ask. Last Thursday I called the doctor about his urine and the blood in the diapers. He said that he wanted to test the urine that day, so we did that. It showed moderate blood and I think some white blood cells, so they sent it out to be cultured. They told me to come back next Thursday to test it again and if it showed blood then they would order blood work. Well, we are still waiting on the results of the culture. Today the nurse practitioner said the lab had the results but they were still working on getting the lab to fax the results to them. (I hate waiting games! Especially when it comes to my baby!) So, back to this morning. The doctor said they needed to see Joel. So after doing school with Jonny, Floor Time Therapy with one of Joel's Hope therapists, and feeding the kids lunch, we were off the doctor. Me and the whole gang. It's kinda interesting to watch peoples reaction when I walk into a room herding three little boys, some people raise their eyebrows and look away and others watch us and chuckle under their breath. One lady even commented to her son and we walked by that this is how it looked when him and his brother and sister where little. The nurse practitioner was great. She ordered a renal ultrasound. (This isn't as bad as it sounds...it just means an ultrasound of his kidneys. TSC can cause benign tumors to grow on any of his vital organs so it is important to check for this among other things.) She also order a bunch of blood work including blood sugar level, so it has to be a fasting blood draw. Because of this we are going in tomorrow morning to get it drawn. As soon as we got home from the doctor I made brownies for my dad's birthday celebration which was tonight, got everyone ready for the party and went. Everybody had a great time and we didn't get home until 10:15pm. Way past their bed times. Shhh, don't tell Daddy. He's working in El Centro again. So, once again I am single moming it this week. The great thing this week is he should be home tomorrow night as they are finishing that job. Yeahhhhh! :) :) :) :) Bedtime went surprisingly well for it being so late and being a bath night and me having to do it all by myself. Joel gets his anti-seizure meds at night so it makes the whole bed-time routine a little harder. After they were all in bed I cleaned the entire kitchen. :) Even though I am exhausted, the kitchen is sparkling clean. :) Tomorrow morning I start the craziness all over again. What do I have on my plate? Joel's blood work at 8:30. My heart ultrasound at 9:30. The kids breakfast and Jonny and Jason's school. Lunch. Joel's occupational therapy (40 minute drive one-way) at 1:00. Jonny's piano lesson at 2:00. (Which reminds me that he needs to practice in the morning, too.) Hopefully after all this I will get a nap (which I will desperately need) before I cook a special dinner for Isaac since he is coming home after me not seeing him since Sunday (which feels like an eternity ago). It may not sound like much to you, but add in three little boys putting kinks into my plans by getting hurt, a little fighting, insisting they get THEIR own way...you get the point. Anyways, I know I will hit the ground running in the morning and not stop until I hit my pillow at night (or hopefully that nap I am going to try for :}). If you are still with me reading at this point, I applaud you for sticking with it. :) I know this has been a long post. I thank you from the bottom of my heart for caring about us enough to keep checking back here and for those of you praying for us...God BLESS you! We definitely need all the prayer we can get! I will do my best to post an update on anything I might find out tomorrow about Joel or my heart. It will probably be evening before I get to sit down at the computer. Good night my friends, I better get some sleep before tomorrow comes! Annie

Concerned

2008-03-20T12:11:00.000-07:00

I am concerned about Joel today. The anti-seizure medication he's been on since he was nine weeks old is hard on his kidneys and they used to do blood work about every three months to check his kidneys. I'm not clear if this was because he was on more than one medication, but the fact remains that he hasn't had his blood checked in about 13 months. I'm not sure if this is because of an oversight or because the docs didn't feel it was necessary with him just being on the one medication. Here is what I am concerned with - his urine is not normal. For about the past three months almost every diaper change in the morning has been weird. By weird I mean dark colored and kinda like syrupy. It's really hard to describe but it's kinda heavy and gel-like. Anyways, it makes his diapers feel really weird. (And I would know because I have changed three kids worth of diapers and always used the same brand.) I haven't worried about it too much because I thought it was probably because the urine sat in the diaper a long time...since it was a diaper he had worn all night. In the past week it has started happening during the day. Well, I woke up yesterday with his kidneys on my mind. When I realized it had been so long since his blood had been drawn I thought "I wonder". Last night when I took his diaper off for his bath I noticed some blood in the diaper. So today he is going in to his pediatrician to get his urine tested and I am trying to get his neurologist to write an order for blood work. Update on my heart: I got a call this morning and they moved my Echo (heart ultrasound) up to next Wednesday. (A whole week and a half earlier :)! ) My stress test is on Monday.

Quick Prayer Updates

2008-03-19T14:13:00.000-07:00

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)

2008-03-17T11:35:00.000-07:00

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.

All About Big Bear...And Prayer Requests

2008-03-15T15:56:00.000-07:00

We had a blast in Big Bear. It was so nice to get some relaxation in and the kids LOVED playing in the snow. Unfortunately, there wasn't too much snow (funny thing...one week after we were there (tomorrow) it's going to be snowing). Oh well. I know it might sound weird to those of you who live in snow states that we drove 2.5 hours (one way) to go to the snow...but for those of us (me and my kids) who have grown up in southern California snow is a huge treat! Most of the ground had no snow, but there were patches and on Saturday we drove around the lake until we found a hilly area with about 2 feet of snow. The kids loved sledding and much to my shock Joel LOVED the sledding. He also loved having snowballs thrown (gently, of course) at him. He would giggle and giggle. SO CUTE! Also, look at how CUTE my munchkin is in that snowsuit! There's just something about a baby body in a snowsuit.Joel did not like walking in the snow. It was difficult snow because it was warm during the day and cold at night so the top of the snow had an icy crust. I already told you it was about 2 feet deep in places, so about every third step the crust would break and you would sink down to your knee. The dangerous and difficult thing about it was that you don't know which step is going to sink. After we had been there sledding for about half an hour my dad, who was carrying Joel (and shouldn't have been because of the precarious walking condition), had a foot go down. (Side note: As I was reading back over this I thought it imperative that I tell you that Joel is a Grampy's Boy. Always and only wants Grampy when Grampy is around. This is why my dad was carrying him.) The trouble was that he was carrying Joel and so not balanced. As he went down he twisted (he did a really good job at protecting Joel). His knee (which was already bad) got the worst of it. He couldn't move for awhile so Isaac got down on his knees and dug Dad's foot out. (I just happened to have the camera in my hand so I captured the whole ordeal.)
Joel seems to have this incredible sense about when people are hurt and so he went over and started kissing Grampy. After he was done kissing Grampy, Joel sat in Grampy's lap with a worried look on his face.
It was hard getting Dad out of the snow and to the car. Isaac went ahead compacting the snow so he wouldn't have any more unexpected sinkholes. This picture demonstrates the problem perfectly as you can see my mom's right leg had sank up to her knee.

My dad spent the rest of the weekend in a chair in the time-share. He hasn't been able to put his full weight on that leg since and still can't bend the knee. He did see the doctor when we got home and the doctor said possibly a bad sprain or a torn tendon or ligament. Please pray for him to heal quickly as it is very painful.

Also, please pray for my mom. She saw the doctor this week and still has the pneumonia she was diagnosed with in January. With my dad not being able to walk she has to do all of everything herself which means she isn't resting like she should.

Another prayer request: I just got a call from my mom and my grandpa is in the ER right now with pains in his abdomen. He was already in a skilled nursing home with Pneumonia.

To top this all off...I have had a really bad week. I have had a really bad cold that I caught from my mom....................I'm going to leave this to another post. Thank you so much for your prayers for us. I can't tell you how much it means to me that you visit my blog. Thank you and all my love.

Hope you enjoyed the slide show :)

Wordless Wednesday: Our weekend in Big Bear

2008-03-12T17:31:00.000-07:00

DRINKING FROM A STRAW!!!

2008-03-06T00:44:00.000-08:00

I am on my way to bed but wanted to let you all know that Joel drank from a straw today (Wednesday)! It may not sound like much to some of you, but it is. I have been working with Joel for about a year trying to teach him to drink out of a straw. To date he had either wanted nothing to do with it or got really frustrated because the drink wasn't coming to him. The concept of closing his lips around the straw AND sucking is really complicated. Well, over the last month or two Joel has decided he really likes anything we have in a cup that has a straw in it (probably because it is usually some kind of drink with sugar in it). So when he wants it I have been encouraging him to drink out of the straw. Every time I have done that he has pushed it away and fussed because he wanted me to give it to him from the bottom of the straw with my finger over the top (you know how you do it with little babies). Today was totally a God thing. We were shopping at Costco for our trip (we are going to Big Bear this weekend to hopefully show the kids some snow) and as we were headed out I was craving something from the Food Court. Well, I am trying to be a good girl so I resisted and went and loaded the car. As I was loading the car I saw something in the car I needed to return, so I went back in and made my return. Resisting two times just wasn't possible so as I headed for the Food Court I was trying to decide what I was going to get. I was really hungry, but knew dinner was going to be soon, so I decided not to get a hot dog. I fully intended to get a soda as I entered the line but at the last possible moment something (or should we say Someone) told me to get a berry smoothie instead. I did and as soon as Joel saw it I knew I wouldn't get much of it. Mmmmm, mmmm is the sound he makes when he wants something, and this was a very loud mmmmm. The great thing was that the smoothie was so thick that after I sucked it up in the straw he could get some by biting the straw. How is that good, you ask. Well, after working with him about ten minutes and coaxing him to suck, HE DID! And once he did it, he did it again and again (with some biting interspersed...note to self, get two straws). He looked so proud of himself and he was enjoying it (and being cheered on) so much that I stood in Costco parking lot for almost half an hour holding the cup for him and encouraging him to suck from the straw. These are the rewarding moments when all the hard work melts into the background and it's all worth it. HE DID IT!!! No Wordless Wednesday today! And by the way, if I had never gone back into the store, or given into what I thought was temptation, or listened to that little voice telling me what to get, none of this would have ever happened. Thank you, Lord, for giving me a little push and blessing me today. Isn't God incredible?!

Getting into trouble...

2008-03-04T00:13:00.000-08:00

...and loving it. Joel has been a naughty little boy lately. He's been throwing food down from his highchair every chance he gets. I talked to his OT about it and she said it's a developmental stage and then quickly followed with strategy for how to put a stop to it. He's also recently discovered my drawers in the kitchen and that they hold some fun "toys". Every time I walk around the corner he's into them. It's not so bad except now I am doing way more dishes because one of the drawers holds my utensils. As much as it is a pain, it's a great sign about his development. Discovering that the drawers are there, that there is something new to play with in them, and having the constant curiosity to keep coming back is so much better than him just not caring. So, even though he's getting into a lot of trouble lately, I am thrilled with him and his development. :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :)

I Love: Wordless Wednesday

2008-02-27T23:51:00.000-08:00

Some words for my wordless Wednesday: It is so hard to choose just one picture! It's also hard not to give a caption, so here it is: Joel was sitting watching his brothers play basketball and cracking up every time one of them made a basket. Too cute! His laughter is contagious. Every time he laughs we end up giggling right along with him (and usually grabbing the camera).

Joel is Napping!

2008-02-18T17:49:00.000-08:00

Joel is actually sleeping during his nap time today! Hooray! He has been a pretty grumpy boy yesterday and today, so I wonder if he's not feeling good. He started making a "g" sound today. I think that is progress. It's so frustrating sometimes that he can't tell me what he's thinking, feeling, or wanting. At other times it's very sad for me. I would love to hear his sweet little voice saying "Mama" or anything for that matter. At least he's becoming more and more efficient with gestures. Although sometimes that's frustrating because he wants something and he can't understand why I don't know what he wants or can't give him what he wants. I guess I know he will talk in God's timing and I will continue trying to help him learn. (He is now 2 years 5 months.) Yesterday we went to visit my brother-in-law. The kids call him "Tio" (spanish for uncle). After trying unsuccessfully to see his kids (divorce is an ugly thing to a family - we rarely get to see our niece and nephews) we ended up at a park. We had a wonderful time playing soccer and throwing a football (all at the same :) time). Here is my question of the day: Why are toddlers attracted to anyplace where cars might be? It's like the parking lot, driveway, street, etc. are all magnets to Joel. The whole time we were there, all he wanted to do was run towards the parking lot. We were constantly having to run after him, block him or pick him up to keep him out of danger. The same thing happens at home. The moment we step out of the front door he makes a beeline for the street. The huge problem is that our short driveway is a hill heading downwards and dumping straight onto a busy street. Once those little chubby legs start going down that hill he can't stop them (and I might add, he is difficult to catch). To compound the problem, our yard is above the driveway so oncoming cars can't see anyone until they are actually in the street...and the cars go fast on our street. The key is to catch him before he can reach the start of the downhill. So, I will ask again: Why are toddlers so attracted to anyplace where cars are?

Dance!

2008-02-17T01:06:00.001-08:00

Joel danced for the first time yesterday. It was so cute. It's really good to see him experiencing different emotions. When you dance you're showing that you're enjoying the music. I love to see him enjoying life. I don't know what's up lately, but the last couple weeks he has decided he's not tired at nap time. When I put him down for a nap he ends up playing in his crib for an hour until I get him out. I wish he would nap. I still need for him to nap!

Happy Valentine's Day!

2008-02-14T23:42:00.000-08:00

Joel's Hope home teacher came out today. We mainly worked with him on the computer. It has this great baby program on it that helps his fine motor skills by encouraging him to press the keys while at the same time working on his vision by making his eyes do a lot of work and encouraging his eyes to track. As soon as the computer comes out, his brothers are gathered around him. Joel sits for quite a while playing the games...his favorite is the penguins.

Joel's brothers love him a lot!

Happy Valentine's Day from all of us here in California. To read my Valentine's Day post go to rfamilylove.blogspot.com

Wordless Wednesday

2008-02-13T18:12:00.001-08:00

Annual Checkup at UCLA

2008-02-07T11:40:00.000-08:00

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.

Wordless Wednesday

2008-02-06T20:33:00.001-08:00

Joel's Story / Update

2008-01-27T19:22:00.001-08:00

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

2008-01-16T23:06:00.001-08:00

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

2007-10-23T10:21:00.000-07:00

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

Please Pray

2007-10-22T09:39:00.000-07:00

Please see post at www.rfamilylove.com. Thanks.

Occupational Therapy

2007-10-20T00:02:00.000-07:00

We have been working with Joel for months trying to teach him to drop things.

Joel decided he really didn't like the texture of this crinkly pipe thingy.

Shannon has been working with Joel since he was four-months-old. She's great. We had a difficult day with Joel. He didn't want to do anything she tried to do with him. Some days he does great. Today was not one of those days. He's been at a plateau for months now. Shannon says he will be until he starts imitating more. He has kinda started imitating some but only things like banging and only when he wants to. He is much more focused on moving. He can't seem to hold still. Does anyone know if TSC can cause hyperactivity? (Or maybe it's the anti-seizure meds causing it?) Hopefully soon we will make some progress in OT.

My new business (or do I mean busyness?)

2007-10-06T00:27:00.000-07:00

Joel has a cold so that is why I haven't had time to post lately. On top of that I have started a new business this past week - www.save-your-stories.com. I am an independent consultant for Heritage Makers. It is a wonderful company and their goal is to strengthen families so it is something I am proud to be doing while really enjoying it. This week has been mostly set up. I will be posting more about my exciting new part-time career when I have more time. The reason for adding this job to my already insane schedule/life is that with Isaac out of work so much this year and all of Joel's medical expenses the past two years we have gotten ourselves into debt. Isaac wanted to get a part-time job to start paying it off and I didn't want him gone more than he already is. Most of my new work can be done from home, so the kids don't lose any time with either of us. Please pray that this goes well for me. Adding a new part-time job to my very busy schedule basically means I don't have time for anything but necessities like kids, church, school, doctors, therapists, business, dishes, cleaning, and laundry (which I am getting really behind on.) Did I mention that Isaac started his new job last Monday? We are so pleased to have him working again. He is on a demolition crew and has been working a jack-hammer and moving cement chunks all week. Add to this he has a daily drive of 3 hours. Poor guy has been coming home in the evenings with no energy left. Since Isaac isn't home much anymore and has no energy when he is home, I have taken on a lot more around the house. I am praying God will provide me the strength to continue doing everything to His glory. I will try to be better about blogging more, the day just needs to be longer than 24 hours.

Good News Today

2007-09-28T20:58:00.001-07:00

Joel loves being flipped upside down. (He craves that type of stimulation.) I love Joel's curls.

I got good news this morning. We got eight more respite care hours for a total of 24 hours per month. This is very helpful as it gives me more time to spend with the older boys. Maybe Isaac and I will even get a date or two each month. I also got a call stating that a request was put into regional center for them to fund Joel's autism evaluation. If that's approved the evaluation will be a lot sooner than if we go the insurance route. We are praying that God will open doors to show us the route we are to take. He is faithful in guiding us. Anyway, today we got new hope that there is a better way to get his evaluation payed for.

Joel had OT today and his therapist said that until he starts imitating he has plateaued. It makes sense because he has been working on the same thing in OT for about 6 months. So, would you please pray with us that he will start imitating. This is very important to his development. I want to say thank you to all of you for praying for Joel and for the encouragement you give me by reading my blogs and leaving encouraging comments. I can't tell you how much it means to me. It really helps me get through everything. So again, thank you.

The Geneticist

2007-09-24T11:56:00.000-07:00

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 Climber

2007-09-22T23:44:00.000-07:00

In August Joel started climbing. After a month of practice he's pretty good. It's a wonderful skill to have. For Joel it's great fun. For Mommy it's scary. (He gets hurt an awful lot.)

My 4 year old, Jason

2007-09-19T16:45:00.000-07:00

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?"

Boo-boo

2007-09-17T23:23:00.000-07:00

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.)

Brotherly Love

2007-09-17T23:02:00.001-07:00

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.

Energy and Patience

2007-09-16T21:19:00.000-07:00

Wow, I was just looking at the coming week on my calendar. Joel has either a doctor appointment or therapy every single day (which means A LOT of driving.) Throw in the boys school, piano lesson/practices, and Jonny's birthday (my oldest son, turning 7) and we officially have a very busy week. Please pray that I'll have energy and endurance this week. On Thursday we are seeing the geneticist down in San Diego to find out what the results of Joel's DNA test mean. I have been thinking about this day since Joel was diagnosed, two years ago. Approximately 60% of Tuberous Sclerosis cases are not hereditary. We are praying this is the case with Joel. If it is hereditary that means either me or Isaac are carrying it which means Jonny and Jason would have a 50% chance of having TS. Depending on what the geneticist says on Thur. Isaac and I may need to be tested. Then we could go from there. But, I guess I am jumping ahead of myself. We'll have to wait and see what she says. Love, joy, peace, PATIENCE...I'll have to focus on patience until Thursday.

Strength

2007-09-14T01:30:00.000-07:00

In honor of Joel's birthday, here is the second post. Joel has been through so much in his little life. He is one of the strongest babies I know to have made it through the past two years. He has a very strong personality that draws you in and makes you want to squeeze him with love and kiss his chubby cheeks. I want to share with you a sampling of what he has been through in the last year. In December 2006 Joel had about a quarter of his brain removed at UCLA Children's Hospital to try to stop seizures that no amount of meds (even mixed together) could stop. So far they have not returned as far as we know. (Warning: the following pictures are difficult to look at.)

11/06 Joel was bundled like a mummy for his MEG test in San Francisco. I was feeding him in an attempt to put him to sleep.

The MEG test. He had to hold completely still without crying for 30 minutes. You know how hard that is for a 14-month-old baby.

12/06 Joel has been poked and prodded way too much in his short life.

12/14/06 This picture was taken the morning of his surgery. My sweet baby had no idea what was coming, he just knew he didn't like hospitals.

Waiting for Joel's surgery was agony. I felt like I NEVER wanted to let go of him. Part of the agony: knowing that he would return to me without a quarter of his brain. The other part: not knowing what the future would hold for him.

Finally out of surgery, my baby was swollen and attached to all sorts of wires and tubes. One of the tubes was draining excess fluid out of his brain. I was not prepared for that particular tube, so you can imagine how shocking that was.

The day after surgery was difficult as his eye was swollen shut and he was aware of it as well as being in a lot of pain.

Four days after surgery I was finally able to hold him when the tube to his brain was able to be clamped. Before then his head had to be at a certain elevation due to the tube. It felt sooo good to have him back in my arms but was a little scary at the same time.

When the head wrap finally came off we discovered he had 43 staples.

I had to include this picture just because he is so cute sleeping with his teddy bears.

My little "tough guy" with daddy just before we went home the first time. You can see how swollen his head had become pushing his ear down near his neck.

This was just before we left for home the first time. I didn't think we were ready to go home but they insisted he was ready.

Our one good day at home in between hospital stays. Only one week after surgery he sat up,which he had only done a few times before.

After being home 3 days we ended up in the ER at San Diego Children's Hospital on Christmas Eve and he was life flighted back to UCLA on Christmas morning. (Needless to say, our last Christmas was not what I had hoped it would be.) After a lot of testing and waiting they decided he had Chemical Meningitis (which was his brain having a chemical reaction to the surgery.) It was extremely painful with high fevers. Very difficult for us to watch him go through. I would have given anything to take the pain from him.

Joel was in isolation most of his 2nd hospital stay because they didn't know yet what type of meningitis he had.

20 days after surgery we were back at home with a PIC Line for his meds. Being back together as a family in our home was just the medicine he needed to put a smile on his face.

Smile

2007-09-12T19:55:00.001-07:00

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

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

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

Happy Birthday, Joel!

2007-09-10T12:07:00.001-07:00

“A very special little gift sent down from heaven above
sweetened with laughter, sprinkled with joy
securely wrapped up with love.”
~ Author Unknown

Our sweet baby Joel is two years old today and is doing better than ever!!! We had a family dinner to celebrate his birthday/life. Uncle Tom and Aunt Dori came. Great-grandma was even there.

After dinner Joel opened his gifts.

It took some work to keep him interested in gift opening.

Below, Joel is in deep concentration playing with a toy.

Joel loves to play with Aunt Dori!
Amy stopped by to see Joel. She is a very close friend of mine who
actually ended up delivering Joel.You can see Joel thinking: "candles or cake?"Joel decided he'd go for the sweet stuff.He loves chocolate!The cake was gone in a heartbeat with a smile left in it's place.Jonny said "Aw, Joel got cake on my forehead.""But I still love you, brother"At the end of the night Joel was a tired mess, so he was whisked
off to a bath and then bed.

Joel's Trembling

2007-09-08T12:32:00.000-07:00

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

2007-09-07T22:10:00.000-07:00

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.

For Joel's Medical Team

2007-08-03T11:51:00.000-07:00

Please watch all four video clips. Thank you. We appreciate all of you so much. Joel would not be where he is today if we didn't have each of you.

Bad Eye Movements

2007-08-03T11:43:00.000-07:00

In the following clip the first turn really shows best what is typical. I was only able to catch the end of Joel's circling.

Possible Seizures?

2007-08-02T13:27:00.000-07:00

The arm movements in these video clips are new.