Project 365 ~ Day 9 ~ Joel and Blue Snowball

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.

Indio Weekend: Part II ~ Slideshow

Where did I leave off?

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.

All About Big Bear...And Prayer Requests

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

Annual Checkup at UCLA

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




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

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

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

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