Just Another Day at LPCH

I meant to start this post much earlier, but I conned Justin into giving me a shoulder massage (getting headaches again). I don't pass these up. Usually, I try to ask him when there is something interesting on TV for him to watch so that it will distract him- then he'll zone out and doesn't even realize that he's doing it and will keep going for the duration of the tv show. All it takes is a few nudges here and there from me, and voila, I get my back rub! =)

As for Miss Moriah, she has been having a good couple of days even though she spiked the fevers again. Her rash has returned and continues to come and go, and her heart rate is on the higher side. They are doubling her antibiotic coverage just in case there's something brewing again. Everyone is just keeping a close eye on her. The nice thing is that she has been in good spirits, and has enjoyed sitting up like a big girl more and more. It's so nice to see her getting stronger.

In the meantime, we've just been hanging out, and enjoying our visitors.

Occupational Therapy - look at that good arm lifting. Moriah's left arm lags behind and so we have been concentrating on trying to get her to reach for things with her left side now - thanks for all the help Michelle!

Smily girl

Auntie Lindsay came! Lindsay was Moriah's Primary when she was an itty bitty baby in the NICU. She has family in the area, and so she and her cousin, Sarah, stopped in to see the little miss. I'm telling you, our Nurses become like family. They are very near and dear to us as they are such an important part in our daughter's life.

We love you Lindsay =)

And then, Uncle Eric stopped by! He's always there for us...

And last, but not least, Justin and I had the honor of meeting a very special family who has helped improved our lives drastically. This is Mom, Karen, and daughter, Callie, who is 3 1/2 years old and has Tet PA Mapcas as well as Digeorge.

Many of you who know us or who have been following our story know about the horrendous GI issues we experienced with Moriah. Well, as soon as we came up to LPCH and told Jana about M's symptoms, she immediately thought about a previous patient who had the exact same episodes...it was Callie. I had actually "known" this family because they were one of the first families I came across on Carepages who had the same heart defect as Moriah. So, both Jana and I got in touch with Karen, and discussed the similarities between Callie and Moriah's GI issues. I found out that there is not a name for what she has although they say that it is a cousin of cyclic vomiting syndrome even though the cycles are defined by sudden outbursts of pain (they actually call Moriah's abdominal migraines, not cvs). Anyway, the only thing that worked for Callie was Neurontin and prn Ativan. And now, these awful, horrendous pains are a thing of the past for Moriah. Thank you Karen and Callie for all of your help. You guys were a total answer to prayer!!

Callie is now out here for another heart surgery (performed by Dr. Hanley of course) so I ask that you all keep her in your prayers. Her last surgery here turned into an 8 month hospital stay - hmm...that sounds familiar. Anyway, needless to say, this sweet family is anxious about their baby girl having to endure another open heart surgery. Callie has had her share of trials, and is one of the strongest kiddos we have ever read about (she was given only hours to live during her last stay here but pulled through it). We will be praying for you Miss Callie.

p.s. upon meeting Justin, Callie looked at him and immediately called him "Clown." I burst out laughing because I know that she took one look at his hair and probably thought "Bozo." I kept teasing him the whole night about it, but guess what? Because I'm married to him, by default, I became Mrs. Clown. Shoot! =) Now, we are know as Mr. and Mrs. Clown to Callie. I told you, your pride goes out the door when you have kids!