RollersInVegas

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!!!

uh...huh...that's my princess Eli!!! He humored me by putting on the tiara!
yep....still crazy Eli!
I tried to get a picture of Chris...
but, he's not showing me any smiles!
Here's my butterball snoozing today.
oohhhh....just so angelic!
This was yesterday sitting up like a big boy!
No time to look at me...the television is on!
and still eats EVERYTHING but food!

We have our follow up with our ped tomorrow to check on Isaac's ears...and poor Chris has to get a HEP A shot in the afternoon.

I emailed the GREAT doc that does the thymus transplants at Duke...I hope she emails me back!

I'll keep you updated on that. Next week he gets his EEG! It better show a big fat NOTHING...or i'll need to take a vacation!!!

Sweet dreams...it's bedtime!

Well...it's good news and BAD news.

The good news is that his little body is making some antibodies. His tests for the live vaccines show that he is making antibodies to fight them (but, we're not giving them yet).

NOW...the bad news. Isaac's t-cells are WAY TOO LOW! With DiGeorge kids...we know that they will be low...but, his are SO low that Dr. McKnight is emailing his records to DUKE to see if he qualifies for a THYMUS TRANSPLANT! WHAT?!?!? They've only done about 60-70 of these (from what I've researched)...with a 58% success rate....and Duke is the ONLY hospital in the country doing these transplants. They take a thymus gland from a live donor (another child having heart surgery) and transplant it in Isaac's leg. It requires a 3-4 month hospital stay (because...it is a transplant and you still have to be super careful with rejection and infections). Isaac's CD4 (tcells) were 433...and his CD8(tcells) were 58...Dr. McKnight said that if the CD4 number had been in the 300s and the CD8 number below 50, then he'd have us on a plane this week to Duke. BUT....although his numbers stink...he is doing relatively well. NOW...if Isaac had some bacterial infection that we didn't know about when these labs were pulled, they could have affected the numbers a little. So, he gave me the lab slip to get more labs pulled while we're at Stanford. SO...YES...he's still clear for cleft palate surgery. (and yes...he's consider the bad DiGeorge...complete...YUCK!)

Now...we just wait for Duke to see what we should do.....
at least there is a plan. If he gets the transplant, and it works, they see an increase amount of t-cells within 6months.

I know that none of the doctors have a crystal ball and can tell me how long Isaac will be around...but, I asked Dr. McKnight..."With these numbers as they are now. If he got pneumonia next week...would he die?" and he said, "yes". That's how low his tcells are, that's how weak his little body is and if he's dealt with an infection that large, he will not be able to handle it.
SO...if you read this and you like to visit us...you MUST stay away if you're sick. I don't think we're at the point where I have to put a mask on him and gloves on him (but, don't think I haven't thought about it). I think we'll just keep doing what we've been doing...and just be a little more mindful about things. AND....I'll keep working with him on all the things, eating, sitting up, standing....because I just know that Isaac will be fine. This transplant doesn't scare me...it actually gives me more hope that there is an alternative for him (that there wasn't just 10 years ago)....

SO...think about this. We just happen to move to the west coast, have Isaac...with his crazy heart...and the man who created the surgery that could save his life is on the west coast. NOW...he might need this transplant...and it just happens to be ONE hour away from my Mom's house...and my favorite college basketball team..... coincidence?? I think not....I think someone's hand is helping us through all of this...and I'm so thankful.

We'll just keep doing our daily routine. Which, by the way, Isaac is still off his O2 during the days...and almost a week with no throwing up!!! He's such a little fighter!!!

Eli asked tonight if he could make a video....a video about playing basketball. I said, "Eli, the basketball is laying down". NOT a problem for Eli...
So...I got off my lazy bum, put Isaac in the bouncy seat outside, and videotaped my man Eli explaining how you play basketball.
Enjoy!



Not much to report today. Chris got an A+ on MY, I mean, HIS project. It was "treasure box" day for Eli at school today. and Isaac...another "throw up free" day and no O2!! whoo hooo!!!
I even cleaned the guest room.

Today (the 29th) is Mandy's (one of my little sisters) birthday...HAPPY BIRTHDAY MANDY...can't wait to see you this weekend...we've got SHOPPING to do (don't tell JOE!)

So...our appointment with immunology is at 8am...I will take GOOD notes and update when I get home (I'm shaking in my boots!)

Sorry that I didn't get a chance to post yesterday....
YOU BETTER SIT DOWN for all the latest news...I'll try to break it down:

**Chris has bronchitis!
**Eli pulled his tooth out yesterday, put it under the pillow....and the tooth fairy FORGOT to come!!! Thank goodness I have the sweetest 13 year old EVER...he told Eli that he woke up too early and to go back to bed...and Chris snuck the tooth out and put $3.00 in his little tooth baggy!
(Can you even believe that??) How bad do you think I feel??
**Chris had ANOTHER big project due...TOMORROW...that I had to do tonight!

***Now...for the absolute worst news EVER!
We saw Dr. Mayman today. Isaac's heart looks good, no new narrowings, no more leakage from the valve than there already is (he doesn't think we'll need another heart surgery this year--if things stay the same)...BUT...he had my lab results for me.
Isaac t-cell count went from 108 to 58 (almost NOTHING)...it should be above 500! His cd-8s and his cd-4s are WAY low (those are just two different types of t-cells that help fight infection). So, what this means is Isaac is a COMPLETE Digeorge...the WORST KIND! Dr. Mayman told me not to look at the numbers...because look how healthy he has been considering. He told me that all his other DiGeorge kids with the same heart defect died before they turned ONE...and Isaac made it! So, pretty much...Isaac is a MIRACLE...
I called the immunologist when I got home and told the nurse that I NEEDED to talk with him about these numbers and what we do now (because he had told me earlier that he may need bone marrow studies!). She told me to come in Thursday morning at 8am..so, I'll let you know more about this on Thursday.
I'm so sad for Isaac. Now....knowing these numbers...I HAVE TO KEEP him in a bubble. No more grocery stores, target, malls....

I had "the talk" with Dr.Mayman...and he told me that Isaac would not die early because of his heart...but, he could with his t-cell counts (because an infection could be too much for him) or his lungs(because they are so weak). SO..I have to keep my angel away from all germs! No more church, play groups...oh, it just breaks my heart. And...the big boys...I don't know what I'll do with them.

Sorry to tell you such stinky things...but, it's just been a stinky day.
The silver lining to this...is Isaac IS HERE...we must be doing something right...because all the numbers say that he shouldn't. (by the way...he's 18 pounds and 29 1/2 inches long)...and he's 14 months old...Happy Birthday sweetie!!!

Isaac fell asleep today on his BELLY! Just look at him...eating and snoozing....such a multi-tasker! He slept face down like that for about 2 hours!
Notice his new fish....isn't he SNAZZY! (looks kind of like pac man going to eat his face!)
AND....I lost his dog pacifier yesterday at the drug store...so, Joe had to make him a new one...now, he has a cute monkey again!
oh.....look at our creative selves...the fish and the monkey...what WON'T we do for our kids?
and here's Eli...this is what he was doing when I checked on him!
(I try all the time to get pics of Chris...but, he hides from me)

So...we didn't make it to church today. Eli's feeling better, Chris is still hacking on everyone, and Isaac started coughing last night! (but, he was also pulling at his ear again...we see Dr. Mayman on Tuesday and our ped on Friday...so, if he needs another round of antibiotics...they'll hook him up!)

Isaac is FINALLY getting another tooth!! It's tooth number 3..and it's on the top. I tried taking a picture of it...but, he doesn't cooperate! I took him off the O2 for half the day...and he did good, but he's still satting in the high 80s, low 90s....so, it was back on for the afternoon. (sorry Isaac)

**Heart baby update....Vaeh is home from surgery...and Drew is at Stanford now. Please keep Mr. Drew in your prayers...he's such a strong little guy!

Today would be the day where the kids tried to BREAK ME!

Chris is still sick...but, he went to school...to spread his germs, and make up some of that work he missed last week!

Isaac's still throwing up, wretching, on the O2...but, other than that....he's doing great! It's almost comical..but, true. He throws up....sometimes it takes it out of him, he needs a nap...them, he's up playing with his toys. Go figure?? He's such a tough little guy...he is always amazing me.

Now for Eli....(isn't it always Eli that's causing me the MOST trouble)...well...here he is:
I picked him up from school today and he was crying. He said that he had a headache and he felt like he was going to throw up. So....we go home and he's got a FEVER! (just great). He takes a nap...but, just lays on the couch moaning. Then, as the day progresses...he has trouble breathing. I give him a breathing treatment....and wait for Joe to come home so that I can take Eli to the doctors (without having to drag Isaac along). So...the picture is of Eli at the doctors office. He fell asleep on that table, with his head in the bucket! We got some antibiotics, steroids, and more breathing treatments. (he'll be fine....he has a big asthma attack once a year now...and we have ALL the equipment that we could possibly need at home!)

So....Chris is playing video games, Eli is laying on the couch (he just threw up ALL over me and Joe), and Isaac is snoozing on the floor getting his breathing treatments and eating.

PIECE OF CAKE!
Now....what kind of day did YOU have??

Just another quickie about our day..because I have not been very good with my time management (and Joe WHINES like a baby when I'm on the computer and not gazing into his eyes!)

Nicole and Mark (speech and developmental specialist) came over this morning. Mark worked with Isaac on eating with the spoon. The two of them did GREAT! Isaac even tried to chew on a cheese puff (not just suck on it). He's turning into a big boy before my eyes. Although...Mark did say it would be a LONG road getting him to eat (I don't know how long a "long" road is...but, I hope it's before Kindergarten!) I just LOVE those two...they REALLY love Mr. Isaac!

Chris is STILL sick. Coughing and making himself throw up. He went to school and was fine...but, of course when he's home...he's dying!

Eli...forced me to play with him today. We had to make clay figures. He painted a picture of me, him, and Isaac on a small canvas (that we HAD to hang on the wall today). The boys changed bedrooms and made me move their TV (because how hard is it to walk down the hall to watch tv)? Eli read a book for his class today (and asked if he could get a prize). He wants a prize for just waking up each day and surprising me with his presence!

Time to get my big guy (that would be Joe) and my little guy (that would be Isaac) to bed...they are BOTH wide awake this late!!!

Hi...I'm just eating my puppy. He's quite tasty!
OK...now I'm eating my toy. I wish my mom would feed me!
I'm still hungry! I LOVE my toy bucket. I like to pull all the blocks out and then eat the bucket!
hmmmm....I need to watch television now.
What?!?! GEEZ....stop taking those pictures!
Ok...I'll smile for you!
(mom said you should look at me...I'm sitting up straight--for the first time--I usually lean to the side and have to be reclined back in my high chair!)
Close up...CHEESE!!!
CHEESE PUFFS...thank goodness! I've been starving all day long!
Hi Chris (he's hiding behind he wall..but, I can see him...he's not very sneaky!)


You can't tell by these pics today....but, my little man threw up THREE times before 9am today! So, we're half milk-half pedialyte feeds...and look at him. (he just doesn't understand that he can't grow drinking pedialyte everyday!) After we got the feeds straight today...he had a great day. This really was the first time that he's sat up straight in his high chair. He sucked on about 20 cheese puffs, had a little baby food, and was too tired to take it any more and needed to be laid down (he's only got about 15mins sitting up...and then it's just too much). He's still on the O2 (as you can see)....but, doing great. STILL....no news on the labs. We see Dr. Mayman next week and he'll find them for me! (so, I'm not too worried)

Chris stayed home today. Just coughing.....and coughing...and throwing up because he'd cough too hard!

ELI....do you know what that stinker did today!?? Let me tell you:
The boys are upstairs getting ready for bed, I'm in the kitchen picking up things. I go to the table to push in one of the chairs...and on the chair cover is written in black ink:
"Why R you so Mean?"
I said, "Joe...look at this!!! Look what Eli did!!"
He said, "No...Eli doesn't write that neat...I can't believe Chris wrote on the chair!"
I yelled for the boys to come downstairs....and I asked them who did it...
and it was ELI! He was mad at me today because I wouldn't do something when he wanted it done (I don't even remember)....
He's such a STINKER!

I suppose I should try to be nicer to him tomorrow. He does seem to get lost in the shuffle more than he should...but, GOSH...he doesn't need to write it in ink how bad I AM!!!! I'll probably go to the bathroom tomorrow and find words written on the walls about me!!!

The boys got new bunkbeds and they were delivered today. Their snoozing away right now!!!
Joe's snoozing, Isaac's snoozing....I'm outta here!!!

Hi ladies....how's it going??
We tried out the swing today.....it's been a while. He didn't really like it..so, we're giving it away...any Vegas moms want it?? (if not, it'll be GONE by the weekend!)
Isaac still fits in that baby towel...too cute! You can't have enough pictures of them after baths!
Here's a naked Isaac sitting up...whooo hoooo!!!
He's smiling at the television!
It must have been FUNNY!
Isaac tried some sweet potatoes today...and DIDN'T throw up!!!
My big boy is growing up!!!So....we tried the glasses again today. AND...he got them right after I took this picture....and now they are ALL scratched up AGAIN! Seriously....I give up with these things!

Today was pretty good. Eli went to school without any problems. Chris is getting sick...coughing on EVERYONE...but, he made it to school and home.

Isaac...had another day WITHOUT throwing up. Now, he's still on the O2...so, maybe we just need to keep it on for a while. oh well...I just hope the tanks don't explode in this heat!!!
No word on the labs yet....urrghhh. Not too much to report...I LOVE IT!!!

Buenos noches!

I went up to bed and FORGOT to post tonight!!!
YIKES!

SO...here's your quickie!
The immunologist didn't have the results back from the hospital lab yet (so, you think they could have called me). He did, however, tell me that I was not allowed to take Isaac around other kids, stores, church...(oops...I didn't tell him that I'd been doing ALL OF THE ABOVE!). He sounded really concerned when he reviewed Isaac's old lab results and saw that his CD-8 count was only 108 (should be above 500)...(now...he told me last time not to worry...and now he's the one more anxious to see the new results). He told me that they faxed another request to the hospital and that they would call me as soon as they received them. (so, that means that I'll call them everyday and ask).

Isaac had a good day. He's still on the O2:(....but, if that's what it takes to keep the food down...I'll drag that tank everywhere! We're still having to mix pedialyte with his milk to help keep it down also. He's such a peculiar little stinker!

Eli and Chris are fighting with each other today...I grounded them....their punishment is ROOM CLEANING tomorrow afternoon!!

That's all I've got....off to sleep now!

Well...well...Joe had to work this morning...but, I was able to get me and the boys out the door and to church (on time!)..YEAH!
Isaac slept for most of it...then, wanted to be pushed around in his stroller for the remaining part. He felt a little warm to me...and when we got home, YEP...he had a slight fever. Now, he's still on his antibiotics for his ears...so, it could be a teething fever (I think his top teeth are trying to come through!). BUT, then he threw up (about 2 ounces of yuck), I checked his sats...and he was back in the high 80s...ISAAC! So, the canula is back up his nose...but, ever since putting it back on...he's been sleeping like an angel.
TOMORROW...we see our immunologist. THis is IMPORTANT because he SHOULD have all of the results from our last labs taken at the hospital....and that includes his t-cell count. If they are the same..it just means that he's still immune compromised..and we have to watch who he's around. If they are greater than the last set...then, he's doing AWESOME...if they are LOWER...we're headed to CA for bone marrow studies. I think he'll do great though...(my fingers and toes are crossed!)

I'm SO glad that the boys are headed back to school tomorrow. I think Chris is a little nervous. Eli would just like to live at school with his teacher...he loves her (and so do we!).

Joe....would like us to send him away to boarding school for a break.

Hope everyone has a good week...and think of us tomorrow at 5:00 at Eli's t-ball game in 107 degree weather!!! (I'm sure we'll be dripping with sweat and stinky!!!)

Our Friday started off with Field Day for ELI!!!
He had a blast!!! He didn't know what to expect at "field day"...he asked me TONS of questions...like: "are there board games? Are there video games? Do we HAVE to race?
It was the perfect weather for the day...and I was SO happy that Isaac was happy and healthy...and that we could attend! (Isaac slept all morning in his stroller...just an angel!)

OK...now before you see the next group of pictures....just know that I LOVE my Isaac...and I did NOT harm him in the making of these pictures. He actually kept the glasses on for about 30 minutes. Then, he pulled them AND the TAPE off! (It's the tape that I use to hold the canula on his cheeks). I really don't know how to keep these glasses on his face. If you have any ideas...let me know...they have a strap...but, that doesn't work either!!!




See...look at how happy he looks! I give up...he'll just never see clearly until he's old enough for Lasix!

We had a t-ball game this morning....and I'm a FRIED little chicken!!! WHOoooHOoooo....I'll have to start putting my sunscreen on. AND....on Monday, their game is at 5:00...and it's going to be 105!!! We're going to MELT!

Oh..and one more thing...look at my latest creation...You'll have to look at the store site to see ALL of the new creations...but, I just LOVE this one!

Hope everyone has a good weekend!

This is Isaac's hair after a bath....soo cute!

Sideview of the the curls. They're just not lovely locks like Elijah's...that's why I brush them out!
He poses for the camera now...
OK...here are the dork glasses. I like the green rectangle glass MUCH better!
Chillin' in his bouncy seat. Eating the fingers...instead of the glasses.
Oh wait...I think I spoke too soon...
Uh huh...what's he looking at??
YIKES!! They're headed for the mouth! Yes...he has scratched the NEW glasses already!
there he goes...licking them like a lollipop!
OK...so, I take the glasses away...and he goes for the bucket. Maybe he just likes
to eat plastic!!
Yummy..yummy!
Look at that little man....I could eat him up!
Here's what Chris had to do for punishment...play games with Eli!!!
Chris is MISERABLE....Eli is in HEAVEN!
They BOTH fell off the mat at the same time!
So...we're trying the glasses again!
Hi!
Ok...I'll eat my block instead.
So....the glasses are ok....I plan on going to this infant glasses store in San Francisco when we're in Cali next month.

Isaac woke up throwing up again. WIERD! Because...he tolerates his feeds just fine throughout the day. (well....he wretched a horrible wretch tonight...but, kept it down!)

After we dropped Eli off at school this morning...he gave me explicit orders to go and pick his teacher up a cake and ask them to write on it "Best Teacher Ever"...and we did (it's teacher appreciation week)...

Eli had a t-ball game tonight....and a ball hit him in his head. But...no worries...he's ok...I asked the coach to just put him outfield for the rest of the game!

Here's your funny story:
At the mother's day picnic last week, the kids sang a song to the tune of "Bingo":
I have a mother and she loves me and mommy is her name O
M-O-M-M-Y....
you get it...

So...Eli's been singing this around the house (sing it in the same tune):
I love me and I love myself and ELI is my name O
E-L-I-A-S....
he does the clapping...the repeating...just sings it ALL day long!
Boys...you just have to love them!

***NEW KIDS ON THE BLOCK will be on the Today show Friday morning!!!! (I remembered Jen!!)

That's all that I can remember for today...the big boys are in bed and Isaac is just rolling around...doesn't look like he's sleeping anytime soon!