Tuesday, February 23, 2010

You want to be HOW old?!

Brynley is quite the pretender and she is always saying something like, "Mom, pretend I'm 29 (or 18 or 11 or some glamorous age)." But the other day she says, as she brushes her hair behind her shoulder, "Mom, I'm 91." HA HA!

Friday, February 19, 2010

Video for Aunt Kelly

Here is what we were doing tonight. Just for you Kell.
The embedding code wasn't working so click here for the video.

Strengthening Aubrey

Brynley was blessing the dinner tonight and said, "Please bless this food to nourish and strengthen our Aubreys (instead of bodies)..." We all died laughing. I still laugh out loud when I think about it.

Mom Bragging Moment Alert

Ok, so I have to blog about the parent teacher conference I had with Caleb's teacher yesterday. This post is going to be so braggy so if that turns you off you don't have to read it. :-) I'll understand.

Basically his reading and math are really good. His test scores were in the 90th percentile and he is in 2nd grade math and reading and at least a 2nd grade level. But the part that really got me was when she started talking about what a NICE boy he is. She said he is a friend to everyone and very well liked. She said he is a leader and she sits him with kids who might need a little bit of extra ... something, whether it be a friend or some help with their work or something else. She said he has a lot of self confidence and is very happy.

I know what a wonderful little boy he is but it felt good to hear it from his teacher. :-)

Thursday, February 11, 2010

Sclerotherapy Attempt #1

Today was Caleb's first Sclerotherapy treatment. It started snowing and we hit bad traffic so we were about 15 minutes late to his 9am appointment. We checked in and got taken back to a room and then had to wait until about 11:15 before he got his IV.

He was so brave for his IV. He didn't even flinch or make a sound! Around 11:30 they were finally ready for us. The radiologist came in and told us what to expect. He said the lymph tissue is basically marbled into, wrapped around and intertwined in his normal tissue. He said getting it out will be like mixing 2 T. of pepper and 1 c. of salt and saying get out the pepper without ruining the salt. He kept saying he has no idea if it will work but there are not really any risks so we might as well try. He said he was optimistic that it would work but I was kind of discouraged.

We walked into the treatment room and Caleb kind of freaked out. I think because of all the big machines and there were 5 or 6 strangers in scrubs walking around. I got him calmed down and they hooked up his sedation medication to his IV and within minutes he was asleep!

After about 30 minutes they wheeled him into recovery and I talked with the doctor again. He said he didn't see any vesicles to inject into and treat from the inside so he basically stuck the needle way in through all the tissue and as he pulled it out injected the bleomicin. He said it was like killing the weeds by treating the soil. (Loved the metaphors.) He said we probably won't notice a difference at all until after at least 3 treatments. He recommended just scheduling about three treatments and then we would reevaluate and see if it is making a difference.

Caleb was doing well and eating as many popsicles as they would give him (4). He got up to use the bathroom on our way out after discharge and he started throwing up all over. They ended up hooking him up to another IV in his other hand and giving him Zofran for his tummy. So we had to wait for another 45 min or so.

After we left he barfed on the way out to the car, on the way home and when we got home for a while. Now, about an hour later, he is playing the wii with Brandon and I think feeling better. Next time they can give him the zofran earlier so this won't happen again hopefully.

He is in good spirits and tolerating it well. When he woke up he said, "Is it big and swollen?" and I said "Yeah, it's pretty big" and he goes "YEEEESSSSS!" I think he wants a battle wound to show his friends. The doctor thinks he will be able to go to school tomorrow for his Valentine's day party and he is thrilled with that.

Thank you for all of your thoughts and prayers. But please don't stop! We will need them throughout the entire process!

On a different note, yesterday we had our first annual Valentine's Fondue Party! It was so much fun! We had my parents, my grandma and the Nye's over for dinner. We did all sorts of dippers into swiss cheese and chocolate caramel dip. The food was yummy and we had a lot of fun. I forgot to take pictures of the spread so you'll just have to believe me that it was good!

Tuesday, February 2, 2010

Caleb's Big Year

I don't know how many of you are aware of what is going on with regards to Caleb's lip. Let me start from the beginning.

Caleb was born with a very rare condition called Lymphangioma. This basically means that he has extra lymph tissue in his lip. When he gets sick it gets all red and puffy. He had an MRI when he was 3 months old to determine the extent of the condition. It turned out that he has a microcystic condition which means that there are MORE SMALLER vesicles as opposed to LESS BIGGER ones. This version is much harder to treat because with BIGGER ones you can go in and shrink them. But with smaller ones, they can't really be shrunk much more. The only option at the time was surgically removing them. The MRI also showed that the lymph tissue went all the way through his entire lip including the muscle. In order to take it all out they would have to remove muscle which was not an option. So, we went into it knowing that the surgeon wouldn't be able to get it all out. The surgeon said that since he couldn't get it all out, it would grow back because it multiplies. But he had no idea how fast it would grow back. It may take 10 years or 2 months.

Two and a half years ago when he was 4 years old he underwent surgery. You can read about it here. It was healing perfectly. So perfectly that we didn't even notice how fast it grew back until we looked back on pictures. It took about a month for the swelling to go down and about two months before it was back at it's previous size again.

We didn't want to put him through the pain and scarring of another surgery so we waited a while. We talked to the surgeon again last year. He felt like he would probably respond the same way to another surgery. But there was an experimental treatment going on in San Diego that we should look into. To make a long story short, after about 6 months of calls and faxes to Dr's in CA we were put in contact with Dr Grimmer an ENT at Primary Children's who, as it turns out, specializes in Lymphangioma in children. Who knew! Our surgeon definitely didn't! He was surprised when we told him who we were put into contact with.

He met with us and we discussed a new experimental procedure that he though may help. Caleb needed another MRI to figure out if he was a candidate. He had this MRI last month. After many hopes and prayers (and scares!) we found out that he is a candidate to at least TRY this procedure. They will know after one or two treatments if it is going to work.

This procedure is a form of Sclerotherapy. He will be sedated and they use ultrasound to find certain areas where they will inject bleomicin (spelling?). This is a scarring agent that will create scar tissue to shrink the area down. This is also an ingredient in chemotherapy and the medicine my dad uses to get rid of warts. Talk about many uses! He will need 4-6 treatments. Then he will probably require another plastic surgery to finish it off and make it look nice.

This method of treatment, as I said, is relatively new. Probably just a few years old in the states. It has been used in other countries for a long time, though. He has done it on half a dozen kids (I told you the condition is rare) in the last few years and most have very favorable results, especially the kids who don't respond to other types of treatment because of the microcystic nature (what Caleb has).

As the Dr said, the goal here is not perfection. He will never have that (but who does?). The goal is for his lips to look similar enough to each other that when he walks through school or the store, he doesn't turn heads. Hopefully people won't notice unless they are talking to him face to face and even then it might not be too noticeable.

His first treatment is next Thursday. If this procedure is going to work we will notice some shrinking after one treatment. If it doesn't work, we don't really have any other options until technology catches up with us. We are hopeful that this will work. Please remember him in your prayers and think about him next Thursday!

I will keep you all posted.