I Love: Wordless Wednesday

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!

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!

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!

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

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.

Wordless Wednesday