We are just a family of five...three boys, a mom, a dad, a hamster, and dog. Welcome to our crazy world. Our adventures will make you laugh, cry, and pee in your pants...

Friday, May 30, 2008

Well...I hope that everyone had a FABULOUS Friday! (it's totally past my bedtime...but, I had to give you a brief run down of our day!)

I wake up to find the email I sent to the great doctor at Duke...has been REPLIED to already!!! How cool is that!?!? She told me that based on Isaac's tcells numbers, the fact that he had RSV and didn't need to be hospitalized....he isn't a candidate for the thymus transplant. We have to find out on the next panel HOW MANY new tcells are being made. Here's the thing....with DiGeorge kids, they have low immune systems...that VERY slowly will start to increase in numbers (and slowly means years). But, in Isaac's case, his tcells were within limits when he was born, then...4 months later, they dropped dramatically...now, 8 months later, they have dropped dramatically again (to the point where they are now). We aren't seeing the gradual slow trend from low cells to a normal range....we're going from normal to low. I've got to email her the results from the next set of labs. I'm not sure if he has to run out of cells before the transplant can happen, or if we have to show that he isn't making any new cells...OH...the questions!

Ok...so, I'm just thrilled that she emailed me...and that Isaac isn't SO drastically sick to the point where we need to schedule this surgery. I then take Eli to school and Isaac and I are off to the peds. It's a follow up from his ear infection 2 weeks ago (she wants to make sure that he's all clear before we go to Stanford). She checks his ears and they are not infected any more (YEAH)...but, they still have fluid in them. I show her Isaac's latest labs, talk about his immune system, and ask her if we can have another round of antibiotics to ensure that he doesn't get sick before surgery (and for the simple fact that he's gotten an ear infection every month for the past three months)....and she told me NO! (not with the exclamation point...but, still....no). She told me to just always bring him straight in if he has a fever. (are they kidding me....???) They just told me that if I let my baby get too sick he could die, but you won't even let me protect him from an ear infection!!! What in the world!?!?!

SO.....I pick up Eli from school....and a little boy hit Eli in the face today. GREAT! So, I asked Eli what he did...and he did the right thing...he told the teacher, he didn't hit him back!!! YEAH FOR ELI!!

Now...I'm home again and had emailed the VCFS team in NY and they emailed me back already too!!! (these guys are great!!!) He told me to not look at the actual number of tcells that Isaac has, but have them run the tests to find out if they are functioning. And...as healthy as he's been...they must be! (how encouraging!)

OK...so, now we're off to pick up Chris from school. I have to take him BACK to the peds because he needs a HEP A shot for school (or he can't take his exams next week). The nurse comes in the give Chris the shot (which he SCARED TO DEATH OF)...and there are TWO needles on her tray. Chris looked like he had seen a ghost, his face got pale...and I just smiled. It seems that he also needs the meningitis shot. oops! I had to let him squeeze my hand and he made it through (he needs to pop a valium before these visits!)

On our way home I asked him if he'd be ready for his last basketball game tomorrow. He looked at me and said, "Are you crazy? I'm still coughing and you just let them put a shot in each arm...how am I suppose to be able to dribble!?"
Well...I didn't think about a sore arm! And...he does still have a terrible cough. But, I have to admit...I will not be too upset if we miss his basketball game.

Lots of other crazy little things happened...but, overall...It's pizza night!!! WOOOHOO!!
Mr. Isaac had another AWESOME day....Isaac and I sat by the pool so that Eli could play with his new remote control submarine from Grandma Judy (thanks mom...he loves it!), Isaac and I went upstairs to the boys room so that Eli could show me his new moves on guitar hero (and wouldn't let me play because I needed to practice more)....and we caught a little bit of "Chicken Little" on the disney channel before they fell asleep.

Now....how about that for a FABULOUS FRIDAY! My baby IS going to be ok, my Eli is a mature, sub-driving, guitar hero playing sweetie, and Chris didn't have a heart attack at the doctors office...and JOE made it home before 8pm tonight....and I feel like a huge weight was lifted today. Even though I don't really know anymore about Isaac's future than I did yesterday...I know he's not at his worst yet...and there are plans if he ever gets there...so, I'll keep thinking about how to make a fancy bubble for my baby!!!

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Vanessa said...

It was great talking with you today. I was having such a bum day until I got off the phone with you. It really helps talking to other DiGeorge moms who really understand. I'm constantly praying for Isaac and so happy to hear he isn't a complete DiGeorge like we thought. He's always keeping us on our toes, isn't he.

Love ya,

Vaeh's Blog said...

Okay, once you figure out the bubble thing, I'll take two! LOL

I can completely relate to the shot thing & turning white! I'm such a big baby when it comes to needles! I know I couldn't go through what our little ones handle.

Way to go, Eli! What a great little man he's turning into! He shows more control than most adults do!

Glad to hear that things are on the heading up front with Isaac. Way to go Isaac, what a strong little guy you are!

These little kiddos are such an inspiration, with the strenght they show each & every day!

Hope you have a great weekend!

Mandy said...

Please tell Chris that he's such a dork. Even little 6 year old Seth doesn't mind getting shots. I'll be sure to pick on him when we get there next week.

Sorry we couldn't come today. I feel worse then I look in the pic I sent you. I can only se out of one eye. Hopefully Monday the doc will tell me I'm fine and I can go ahead and drive over.

And Eli, he's such a little mama's boy. You're going to have him and Isaac at your side 24/7. (Just like mom and James) They will both live right beside you.

Grandma Judy said...

Oh hush Mandy. If it weren't for YOUR husband, you would be living on the other side of us. But no, HE had to move to be near HIS mom!

I sure am up and down with all of thse test results. Looks like each doctor interprets the test results a little different.

Eli, hope you have fun with that submarine. But remember, you will be one present less on your birthday!

Have a good weekend Rollers. You deserve it!

gtninlv said...

It never ceases to amaze me that no matter what is going on in your crazy life, you ALWAYS see the positive side. Thank you for being a good example!
Scott received his mission call on Thursday. He is going to Minnesota. He's going to be a very cold desert rat, but he won't need any immunization shots and he will get to use his passport. His mission includes Canada, too.
This is an exciting time for our family,

hayngrl101 said...


Don't fret about the numbers. We always measured very low, also, especially when she got sick. She had two bouts of RSV, one before OHS and one after. Both times she was set back, admitted, and then on O2 forever afterward. So. Sounds like Mr. Isaac is in good shape.

Everyone kept telling us that she would outgrow it. We didn't see that until after she turned four AND had tubves placed AND her adenoids removed (not recommended for DiGeorge kids). Every year is better and better...

Your boys are so sweet and fun to read about!!

Hope you have a great weekend.


The Portas said...

It really does say a lot that Isaac has been so healthy, considering everything his little body is going through. I think it's good advice not to focus tooooo much on the numbers, as long as he's this healthy. He's a strong boy!

Keep away from those ear infections, Isaac! We've got to get you fixed up in a few weeks!

I hope you guys had a great weekend! xoxoxox

jmckeel said...

Hang tough Isaac! Mandy, I know you will go back and read this; b/c I read them all. WE were here at Crestwood FIRST. Just like James told his Dad the other week. haha So it looks as though they couldn't live without James. :) Oh yea, fyi: the neighbors on the other side of your mom said that next year they will be moving to Canada! Just a heads up! Abby P.S. Chris: James STILL doesn't like shots and just about passes out :)

jencooper said...

Sorry I missed out on commenting! I hope that you had an incredible weekend!!


Samantha said...


Love ya!