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!!!
Tuesday, May 27, 2008
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24 comments:
Kathy,
I'm so sorry to hear such stinky news from the immunology labs. It scares me to think that DiGeorge can be so risky for these little guys that are already fighting so hard. Elaina has had such a rough winter with germs flying around, it is so hard to keep her in a bubble. The only times she's ever been out of the house has been for doctor appointments and she's still wound up with 3 admissions to the hospital with respiratory bugs since the end of February. My thoughts and prayers are with you. It's hard but it's worth it in the long run. At least I hope it is! :)
Love,
Hollie
Oh Kathy I'm so bummed after reading this post. I know this is not the kind of news you want to hear. If it makes you feel better, I've already been living in the bubble. It's not too bad since I have friends like you that keep me sane! :)
It does amaze me though that Isaac is a complete DiGeorge after all the places you take him and he doesn't get sick. You'll just have to be extra careful with the boys. I would have them come home change clothes and even shower after school to get rid of any germs lingering on their clothes. But thats just me cause I'm so paranoid about germs.
Just know I'm always here for you if you need anything. If you need someone to talk to just give me a holler!
Love,
Vanessa
Oh Kathy I'm so bummed after reading this post. I know this is not the kind of news you want to hear. If it makes you feel better, I've already been living in the bubble. It's not too bad since I have friends like you that keep me sane! :)
It does amaze me though that Isaac is a complete DiGeorge after all the places you take him and he doesn't get sick. You'll just have to be extra careful with the boys. I would have them come home change clothes and even shower after school to get rid of any germs lingering on their clothes. But thats just me cause I'm so paranoid about germs.
Just know I'm always here for you if you need anything. If you need someone to talk to just give me a holler!
Love,
Vanessa
Sorry about the double post. I've been doing that alot lately. Oops
Hi Kathy,
I'm just sitting here next to my boy trying to find stuff to keep me awake. So I'm catching up on my blogs! I'm so sorry to hear you got bad news today. BUT, I always like to think that nothing about Isaac has changed, he's the same today as he was yesterday, you just have more information now. And you do have to look at how healthy he's been despite the low numbers. Drew has very low t-cells, I don't know absolutes, they go by percentages around here, but our immunologist goes by how he's doing clinically. With good care you can keep him healthy. And yes, youmight have to miss out on some fun things, but you can find other fun things to replace it. Parks are a pretty good bet because they are outside and the UV rays of the sun kills some germs. Just bring purell or those antibacterial wipes and clean his hands the moment he's done touching stuff. Thinking of you!
Oh no-I am so sorry about the bad news. Isaac is such a fighter though!! Are there any procedures out there to increase his t-cells?? Isaac and your entire family are always in our thoughts and prayers.
Love,
Melanie, Tim & Colin
I'd pack up my baby and head for Philadelphia, the DiGeorge capital of the world! And besides.....then he would be closer to his 2 Grandma's! Let's go to Philly and have him checked out!
Isaac would tell you,"I'm okay mom, just a little tired. Just let me sit and watch tv." He's happy, he's at home, and he has a family that LOVES him. What more does he need....
Sorry to read about your news today... your little guy is such a cutie!!!
I'm so sorry that you had such a bummer of a day. I know this is not the greatest news to hear, but try to focus on the fact that your little Isaac is a true miracle! What a tough kid...with numbers that low and doing as well as he is, wow!! He really has the WILL to be on this earth. He must have important things to do.
I guess you guys will have to get creative with where you go. Go to lots of open parks or lakes (right, lakes in the desert? drive to MN! we have lots here!). As he gets older, will you be able to do more things?
Happy 14 months, Isaac. You are amazing! Oh, and Chris must just be the sweetest boy ever to do that for his little brother. So cute!!
Hugs to you...sending you MN love! xoxoxoxo
I'm so sorry to hear this. I'm shedding some tears for you today, instead of laughing like I usually do reading your blog.
I'll be hoping and praying that Isaac is protected from germs and that you'll find a way to protect him from gunk and still expose him to the world and all it has to offer.
You're a family and you, Isaac and your other boys will find a way through this. I'm sorry that you have to deal with it at all, but I know that you'll cope in a way that inspires.
Sending you hugs across the miles...
i am so sorry for your bad news. i agree with what Andrea said. Isaac is the same little guy as before you got the news. New info will allow you to care for him even better. He is really lucky to have a family like yours. Best wishes.
Wow, so much to take in even though you want to send it back. Sorry to hear that they test results weren't the best, but like others have said... Isaac IS here! He is a true miracle! Take all of the new info in stride & just focus on your family & that cutie pie!
Always sending prayers!
It will be a challenge to fiqure out how to juggle all these things for sure. It's times like these we have to believe we can handle the trial and that help will come when needed. What a little blessing you have. You have lots of friends...We love you all.
Poor Isaac. You truly are a blessing and miracle. Tell your mama to start working the clorox wipes! Continue to hang tough and be good. Love, Abby
Oh yea, Chris good job for picking up your mama's slack! :)
Kathy,
I know that I do not know you (although I feel like I do after following Isaac's story this past year). I just felt compelled to write after reading your latest post. You are absolutely right, Isaac is a MIRACLE. And he is thriving because he has such caring, involved parents. Your family is amazing. How you raised a teenager to be that concerned and thoughtful as to do what he did for Eli speaks volumes on what a great job you have done raising him.
I know how difficult it is to be so worried about germs, as I have not let any kids around my boys and not left the house in a year due to my preemie boys. And I am not telling you to ignore the labs, as you have to take precautions. But just remember that Isaac was most at risk in his first year. And just look how much he has overcome! He has gotten sick, and gotten better on several occasions. So his body is stronger than those labs give him credit for......just do the best you can and leave the rest in God's hands. He obviously wants your little miracle to be here!
Hugs,
katie and the boys
I am so sorry!!! I love your little miracle. I hope he continues to do as well as he has been doing and progressing, and growing. Thank you for the updates and for sharing his story. HOLLY
Sorry to hear about that sweet Baby I have fell in love with ur family. I will continue to pray for YOU.
CRABBY
Isaac is a miracle...and He is here! Rejoice in every day and take each day as a gift...we always said: today was a good day...and that's what we ALL have to cling to...none of us have any promises of tomorrow...with Isaac it's just a little more real.
I know it is so frustrating to think of a future locked inside...but I'm sure you and Isaac will beat the odds...and you'll find a way...I know you will.
Thinking of you bunches today...prayers for peace...and joy amidst the pain of the news. Isaac is amazing...and obviously has lots more to teach us all!
Love ya friend...sending big big hugs!
Kathy,
I am a friend of crabby. He sent me the link to your blog. I know you must be discouraged by your recent news but our God is an awesome God and works miracles. I too will add your precious baby to my prayer list.
Weren't you the family that was profiled on CNN with the Kings concerning health insurance?
Christopher is such an AWESOME big brother. I hope that Bennett will be as kind as he gets older.
Isaac is AMAZING! Nothing has changed with that little guy - you just know some stupid numbers now. Just enjoy every minute with that little miracle and love on that munchie!!
<3,
Jen
First of all, how great is Chris! Even in sickness he still takes care of his little bro!!
I hope you had a good cry today to get it all out...then went back to treating Isaac just like you always do - taking embarassing pictures of him wearing tutus, getting pics of him when his eyes are at their craziest, laughing at him while he's tipping over, you know...making fun of him "Roller Style"!! He's the same great kid he was yesterday. Being armed with too much information is a dangerous thing! The numbers suck, but he is a miracle and is going to continue to amaze all of us!!!
Love ya!
Cindy
You know what Kathy...we'll just have to start making trips to Vegas so Isaac & Arianna can have some play dates!
Thinking about you all day!
Love ya!
Okay Kat.... where is today's update. I know you were on blogger tonight because I saw your post on my site. Thanks for the birthday wishes and we'll see you Friday night. Don't forget my breadsticks!! :)
Isaac, hide your toys. Meghan is coming to take over.
Chris, sorry now for all the stress Seth will cause you.
Eli, you better be nice and NO driving me crazy.
Joe, don't worry, I'll be sure to get you your M&M minis while we are at M&M World. :)
When we got off the phone I got pulled over, I'll fill you in later. But I woke this mornin to see what's going on with the Rollers and Started reading Tuesday and cried...Christopher is a sweetie pie. But we knew this. Thanks Chris. And don't feel bad...that was Chris's mission for that day, you just didn't know :-)
Sir Isaac.....Yes he clearly has purpose here even if we can not see it. He was a blessing before the news Tuesday and still is a blessing. Knowledge is powerful (in a good & bad way) It's hard to see how the story plays out. That's why we have to enjoy every (page/day) so we can look back and know it was always the best. But you already do this and I'm always impressed with you and how you handle things.
I know I've said this before but I will always be grateful for Bene because they brought us you guys. And we are better people knowing you ALL. And I'm thankful that Isaac will just make us appreciate a little bit more each and every day!!
Love you guys,
Sams Family
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