Day 1 ~ Wednesday

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

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

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

Why is Joel in the Hospital?

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

A Taste of What's Coming

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

An Early Christmas Gift

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

We are expecting baby #4!

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

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

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

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

My first - Jonny - now nine years old

Jason - the middle child - to be seven this month

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

I love my babies!

Joel's Seizures & Vision

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