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.

A lapse in my sanity..

Sometimes I just want to scream!!! As many of you know we are blessed to be able to go to Maui in about a month and a half for a much needed vacation and to attend the wedding of some dear friends. We thought we were set until the upheaval of the ATA bankruptcy. Fortunately there was no problem in getting our money back, the problem seems to lie in getting an reasonably priced ticket. Our Travel agent emailed us today and said there was an increase of $777 on top of the $1050 we have already paid- are you crazy, that is unreal! The most incredible part is I saw the tickets go from $379 to over $600 in twenty minutes. I am kicking myself in the pants for not jumping on that one. I think we have it all figured out now, but ay- stressful.

What a week

As you might have read, we went to UCLA on Wed. for Sammy's appt. We left earlier in the day to get down and beat the crazy traffic. Thankfully we were very lucky to not get stuck in an ounce of it down or back home! We spent 4 hours with the Dr. He took a very detailed health history and gave him this super charged flu shot. We also had to get 7 vials of blood drawn, man I had no idea he had that much. The xrays were the hardest part of the whole day. Sammy screamed and cried so much. He hated the small room and the 3 men that were busy about their xray business around him, it was awful. We go back for results of the blood studies and xrays at the end of the month, so now we just wait. We are getting pretty good at that.

The next we went on quite an adventure. We set out to Steve's sister Beth's house to watch her 3 kids while her, her husband and their son went to New York for Tyler to play at Carnegie Hall. So cool huh? Sammy and I flew out to catch up with Steve's other sister Wendy, who was already there. I totally forgot my cellphone charger and realized how reliant I am on my phone, kinda silly really. Throughout the week we played at the many parks in the area. There was a dinosaur park with an excavation sand pit, and a butterfly park that had butterfly shaped awnings to keep the sun away and make it quite cool.