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Tilly and the Boys

Hezekiah (8) and Tilly (14)

Who wouldn’t want a dozen or so of these running around their house?

Sweet Apollo, not so fond of kisses.

Well, we got the results of Apollo’s neck ultrasound. It showed that he is supplying his left arm with blood through is vertebral artery. This is not what we wanted to hear. It means he has the potential of robbing his brain of blood and oxygen to supply his arm and puts him at risk of developing subclavian steal syndrome as he gets older. I guess if there is any good of it, it’s that it certainly confirms to me and Chuck that we need to pursue a surgical solution.

I was able to make contact with Boston Children’s Hospital today (one of the three we were told to contact) and will be sending them Apollo’s records soon. Hopefully I’ll be able to speak with someone at Texas Children’s Hospital and Children’s Hospital of Philadelphia tomorrow.

15 Comments

  1. Karen Downs

    That is heavy. I am lifting you all up as you contact the options and listen to all they have to offer and then pray for God’s direction on how to move forward with this. My love to all…Karen

  2. Kim Shafer

    Wish you didn’t have to go through any of this, but I can give a thumbs up for CHOP-children’s in Philly. That is my second home at times as Leo has Wolf- Hirschhorn synddrome and all of his docs are there. I know there is a Ronald Mcdonald house there that maybe you can stay in. I’d offer you a room, but we are about 45 minutes from the hospital way too far to be if your baby is in the hospital. Praying for you as you make all these decisions.

  3. mary

    If you do end up coming to texas you are more than welcome to stay with us. We live about an hour north of dallas in a town called sherman. I know you dont know us but you are more than welcome to call us and we can arrange something. We have 6 kids of our own and are followeres of jesus. We would love to help you guys.

  4. Taryn

    We are also big fans of CHOP in Philly…we are a 20 min ride from the hospital and you would be welcome to stay with us. I pray you are able to get everything in place quickly and painlessly.
    warmly,
    Taryn

  5. Jo

    I pray that you find the right hospital and surgeon. Also that all will go smoothly with the trip, I know you have good friends and family to help you with the other children. I cannot imagine the stress and exhaustion that you and Chuck must feel, but your children are so blessed to have you as parents.

  6. Lauren

    Mrs. Bergeron,

    If you ever need a place to stay in Texas our home is open to you. My family lives 3hrs west of Houston (1hr from Austin). I know you don’t know us, but we have been following your blog since soon before you announced that you were expecting Apollo, and have been praying for you. We are Christian homeschoolers, I am the oldest of 7 (soon to be 8) kids and my family would love to be able to help you in some way.

    Lauren H.

    P.S. I don’t write my last name and exact location online for safety reasons, but you are more than welcome to contact me by email. 🙂

  7. Elisabeth

    If you need/want more hospitals to explore for opinions, you might also try these two: Rainbow Babies which is in Cleveland, OH and Nationwide Children’s Hospital, which is in Columbus, OH. Both are renowned for their pediatric cardiology. I know for sure that Nationwide Children’s has a Ronald McDonald house. I watched them build parts of it when I was younger. My mom used to be a nurse at Nationwide so I may be a little biased when I say that their staff is great and very kind.

    I’m praying for your little guy. 🙂

  8. kris

    Sounds like all 3 hospitals you are currently looking at gets lots of thumbs up. The little guy of my sisters very good friend recently had surgery (4th for his heart in a multi part surgery he’s 2) and I know the Mom raves about Children’s in Boston. And I will say my sister spent her first 2 months of life there 30 odd years ago with a less than 50% chance of survival and she is a thriving healthy 32 year old. I pray you find the right doctor at one of these hospitals so you can get your little guy in sooner rather than later for his surgery.

  9. Non-Mommy

    Would you be comfortable setting up a Paypal account so that we can help out in some way? I am sure that you’d feel awkward about that (I would, too!!) but it’d be something we could do to help out in some way besides prayer. Maybe it wouldn’t give you much money, but enough to at least cover some good coffee while you have to go through all this.

    Regardless, your family is most certainly in my prayers.

    • bakersdozenandapolloxiv

      Tell you what, if we end up traveling out of state, we’ll consider this. Right now I’m choosing not to even think about the actual logistics of heart surgery in another state, lest I lose my nerve.

  10. Lindsay Diffee

    So sad to hear that Apollo is still having issues, but glad to hear you’re getting in touch with some hospitals that can fix them. I know a few great families at Boston (all w/ heart children, all currently in the hospital), so if you end up there, let me know and I will put you in touch with them. I’m sure you have no idea who I am – I live in Alabama, and my son also had a vascular ring (one of the features of Goldenhar Syndrome). I left a reply or two on your blog in the past. Were Dr. DelNido or Dr. Baird mentioned at Boston? Those are some cardiologists used by the families I know. All those hospitals you were referred to are awesome – as I’m sure you know. They will get Apollo fixed up… Praying for your family! -Lindsay (lindsaydiffee@ymail.com)

    • bakersdozenandapolloxiv

      Yes, I remember. It’s crazy…we are actually going to have to have the surgery done again. I’m so glad I didn’t know six months ago…I don’t think I would have survived!

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