Sam's Second Haircut

As you can see in past posts, Sammy truly is lacking in the hair dept. So to give him a haircut I know seems funny, but He gets these crazy long pieces of hair. The first time he got a haircut he was mullet central, this time it was on the verge of mohawk, no so much my style. I pulled out the clippers and asked Steve to come and help hold Sammy, swipe 1.... oops, a little too short. Oh well what can we do now but cut it all the same? You can't really tell that it is so much shorter, but man we got soooo much hair from the kid's head!

Before. If you look closely you can see the tiny mohawk hairs

Can you believe that we cut that much- crazy!

I think he thinks I am a fool sometimes. Mom, another picture?

We Love Disney!

Because of the whole Hawaii ticket upset, we were left with vacation money and nowhere to go. We decided, with the help of our favorite travel agent friend, that Disneyworld was the place for us. We moved our vacation up a couple of weeks so that we wouldn't interfere with Sammy's dr's appts. What a blast! We cannot wait to go back. Sammy LOVED it, and made it even more magical for us. It was nice to be far away and to get away from stuff at home, mostly sammy's health issues. No talk of Dr.'s, or treatments- it was very refreshing and much needed. Enjoy a few of our pictures.Sammy Loves the Characters, he is such a natural. He runs up to them and gives them a hug and then turns around for a picture

This is Bruce from Finding Nemo, Sammy's favorite movie. He started saying Bruce when we got home, it's so cute.

although once picture time was through, he let us know by running off distrcted by something else.He loves Pooh

This was his toy that he picked out, and now he won't go anywhere without it. Thankfully for us, woody is much easier to tote around than his Buzz Lightyear.

Finally a Possible Diagnosis

It is amazing the joy that a 21 letter word can bring to one's life.

Transient Hypogammaglobulinemia of Infancy.

Yesterday was our hopefully final trip down to UCLA. We woke up yesterday morning hopeful for answers, but really not expecting anything but more blood tests ans trips down to LA. We had to wait longer for this appt then any other so far, but it was worth it when we had a DR. (who was in the fellowship program that our Dr is heading up) not a med student come in for our briefing. She sat down and described in real people language what is going on in Sammy's body. The way she explained it was you have two kinds of antibodies, one flags foreign objects and infections and the others fight what the flaggers find. Sammy's levels of the fighters are good for a child in his predicament, but his flaggers are pretty low. So the good news is that when his flaggers finally find something, his body is fairly good at attacking it. He responded great to the super charged flu shot they gave him. He still is having issues with his varicella vaccine and with this blood they took they will see how he responds to the HIB shot he just got. From giving him these vaccines that his body has earlier rejected, it is showing the Dr.'s how his immune system is working. I hope that all made sense. It does finally in my brain, but sometimes it's hard to put it in words. It doesn't mean we are completely free of the IVIG ( the transfusion therapy) but it means that we are working with a probable diagnosis. The thing that they mostly not sure on is the transient part. It means that he could outgrow it, but without time, we won't know. Thank you all for all your prayers and concerns through this time. we aren't done with our battle yet, but I feel as if we have a boost of strength to get through it more.

I Love Technology

This id probably the only time I will ever say this statement, but I am over the moon about our new technological breakthrough! All this time we have had to endure the slowness of dial-up Internet. It was horrible. It would take forever to load our web pages and the thought of uploading pictures was just about impossible. After years of being told that DSL lines would probably be up in our area in a couple if months, always to never have it be so. Yesterday we got satellite Internet- Yippee. It will no longer take me 2 hours to upload blog pictures. Who would've thought such a little thing would make us so happy?

My Make-Up Boy

Today Sammy and I went with my friend Kelly and her mom to go and pick up her wedding dress. It is so amazing, and she just looks radiant in it. After picking up the dress, we headed over to Victoria Gardens to do some shopping. Karen had a mission to get some makeup from Sephora, so after coffee that was our first stop. For those of you who have not had the pleasure of going into a Sephora, it is Makeup heaven. Upon wandering through the store Sammy had picked up a wonderful burgundy brown shade of Smashbox lipstick and proceeded to put it on. Well we were pretty distracted by other things and didn't notice until a couple of the girls came over and asked if we had looked at him recently. I was quite confused because he was in the stroller, what kind of trouble could he get into- well the pictures are worth 1000 words. Thankfully the girls thought it was hilarious, and said he had great taste in the good lipstick. Looks like all the girlie dress up that Steve endured when he was little had been passed down. I do however have to say, that Sammy is so good at putting on lipstick. it was just in the right area, not all over his head. we did however get some on his clothes, so any stain removing tips are greatly appreciated!He looks so pretty!

Sammy with his girls! They just loved him.

Back to UCLA

On Wednesday we set out back down to UCLA, hoping to get some answers. Did we get them? Of course not, but I do feel like we are getting closer to a diagnosis. We had to wait in the room for 45 min. before the Dr came in just to introduce the student Dr. and boy was that a chore. Sammy was so good, although it was hard for him to be in the little room for so long. As you can see from the picture, the wait also took a toll on Daddy! Sammy's IGG levels are still very low and now this DR. is singing the tune of transfusion therapy. At the last visit the student Dr. had really brushed off the transfusion saying that it was not at all to that point, I think that we need to be careful about getting too emotionally invested in the things that the students tell us, because they are just students. So besides the 2nd confirmation of the possibility of trans. they also took more blood to study again. They also have asked us to get Sammy re vaccinated with the HIB vaccine because his body didn't respond to it. Weird huh? He got it but his body rejected it. So we go back the 28th of May, and hopefully then we will know a little more.

We also are looking forward to getting cookies from a little shop next to UCLA that a woman from church told me about. We welcome any other ideas of things to do around that area, we really would rather explore than sit in traffic!

My God is Mighty To Save

The following are the lyrics to a song by Hillsong that we sang in church on Sunday that just brought me to my knees before the Lord.

Everyone needs compassion

Love that’s never failing

Let mercy fall on me

Everyone needs forgiveness

The kindness of a Saviour

The hope of nations

Saviour He can move the mountains

My God is mighty to save

He is mighty to save

Forever Author of salvation

He rose and conquered the grave

Jesus conquered the grave

So take me as You find me

All my fears and failures

Fill my life again

I give my life to follow

Everything I believe in

Now I surrender

Shine Your light and let the whole world see

We’re singing For the glory of the risen King

Do you ever just sit there and are so awestruck at the Mightiness of the Lord? I really am just being hammered this week. I feel so overwhelmed both in a good way and in a bad one. I am so bummed about us not being able to get out to Maui next month. My heart is broken for it. I know I am so silly, but I just can't seem to stop crying about it. I really wanted to be there. But that just brings me back to my mighty God and how He just hasn't given us that peace about it.

Sometimes I feel like such an ungrateful spoiled brat and I think that my sinful attitude that I've had this past week was also revealed to me on Sunday. I feel like I hold onto my unforgiveness and bitterness and just let it consume me. I am not angry or bitter with anyone, so don't worry :) Thank you all for loving me in my awfulness as well as the good times.

Some exciting uplifting news. A friend and I were talking last night about her women's bible study and the ways God has been working in the women, and I was just so in awe that the Lord works in so many amazing ways. I love hearing about our current day miracles, I mean like amazing healed marriages, children who were so sick who are doing 100% better, it blesses my heart. Praise the Lord God Almighty!!

Also Sammy got his first Haircut. We took pic on Steve's cell phone (we couldn't find the camera) so as soon as I can get his phone I will post pics.