How’s this for an update? (updated)

12 May

As life continues to move at warp speed, I will continue to blog in bullet points:

* We got Lennon’s helmet fitting appointment moved up to this Thursday. The same day we also have an appointment two hours from where we live to make sure that she doesn’t ALSO have Craniosynostosis, which she is now showing symptoms of. If you scroll down to the pictures on the site I linked, she has developed the ridge along the top of the head and bowed forehead. I’m so upset, I can’t even process it right now. I’m just going to believe that she doesn’t have it unless I’m told otherwise. =)

* We found out that Hubby is actually at the very top of the transplant list. The. Very. Top.

* BUT he has already been passed over for a transplant at least three times because when they pull his chart, they see that his antibody count is way too high (due to this being his second transplant, many blood transfusions, etc) and they call the next person on the list.

* So now he has to go out to LA (about an hour from where we live) to have something similar to chemo done to knock out his immune system so it won’t kill off the kidney.

* It could take up to three treatments over the course of 6 months, will make him sick and miserable as hell, and he might have to move into medical housing out there through all of this.

* So, we can’t move anytime soon.

*SO, I booked us a trip to Hawaii in 18 days.

* We are taking the girls.

*I’m super excited. I went when I graduated high school, but Hubby has never been.

* We find out the Bean’s gender in about two weeks.

* Hubby got rear ended a few days ago. Ugh.

* My parents are on vacation right now and my grandparents (the girl’s great grand parents) are watching them. They are fussy as hell because it’s unfamiliar.

* My good friend B watched them for me yesterday. She’s fantastic with kids! If I had the money, I would hire her full time.

—–So, I’ve been Googling…I know I shouldn’t….but now I am completely hysterical. Lennon’s head looks exactly like the babies in the pictures with Metopic Craniosintosis. I am FREAKING out. We don’t find out until Thursday. I can’t handle anything else right now. I seriously can’t! Alex’s kidney crap, Lennon’s heart condition, her asthma, me being pregnant again…What did I do wrong?! Why are my babies so unhealthy? I’m terrified for the one in my tummy right now, I feel guilty for even getting pregnant. Damn it. Damn it. Damn it. —————–

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8 Responses to “How’s this for an update? (updated)”

  1. Michell May 12, 2009 at 2:04 pm #

    Well, I’m sorry you don’t get to move. That sounded like such a great apartment. I hope you enjoy your trip to Hawaii though. I’ve never been but hope to go someday. I also hope that Lennon doesn’t have that cranio whatever and that hubby’s health stuff all works out well and quickly.

  2. Idoia May 12, 2009 at 5:25 pm #

    Well no, things aren’t exactly roses right now but SOMETHING good has to come out of this, keep that faith. Have a great time in Hawaii and enjoy yourself! You need it. Keep us updated on the helmet and Lennon’s head.

  3. Ms. J May 12, 2009 at 5:44 pm #

    Oh honey, it all sounds so phucking overwhelming . . . I can’t imagine . . . one minute at a time, one breath at a time.

    I’m praying for all 5 of you.

  4. noswimmers May 12, 2009 at 6:32 pm #

    Deep breaths…just take one thing at a time. I know its easier said than done. Jeez…talk about everything happening at once!

    I will be thinking about little Lennon, and hoping that if she DOES have this condition, that its the mildest form that doesn’t need surgery, etc. Not that I’ve googled as much as you, but I’m hoping for the very best.

    I also hope your hubby gets the transplant soon, and that everything he needs to do to prepare goes smoothly.

    At least you have something to look forward to–Hawaii!! Good for you!! Is it just the four (ummm…technically 5) of you? SO FUN!! You so deserve a break and a little TLC.

  5. coffeegrl May 13, 2009 at 3:06 am #

    I would be totally overwhelmed too. It’s a lot to ask one woman, and one family to deal with all of this. I’ll be thinking of you and hoping that more things start to go your way.

  6. twondra May 13, 2009 at 3:47 am #

    Oh sweetie, you’re going through so much right now. Wow. I wish I could be there to help you. I’d watch your girls for free.

    You’re going through so much. Make sure you take some time for yourself, too.

    Sooooo glad you’re going to Hawaii! Yay! You guys deserve this!!

  7. Sweet Georgia May 13, 2009 at 4:22 am #

    Back away from the google. Nothing good will come of that. I can imagine just how difficult this is. You just have to wait until tomorrow to get some answers. I hope it’s not the craniosynostosis, but if it is, you’ll deal with it. Enjoy your trip to Hawaii, you and your hubby deserve a little rest and relaxation!

  8. annacyclopedia May 13, 2009 at 1:37 pm #

    I’m tired just reading all that – once again, I’m in awe of how much you have on your plate, but also with how well you are doing in the midst of it all, even when you are feeling totally overwhelmed and freaked out. Wish I was nearby to lend a hand with childcare and general fussing over you. I hope your trip to Hawaii is restful and wonderful, and know you are all in my thoughts often.

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