Thursday, May 21, 2009

Great news!

I'm so excited to share some great test results with you! We called today and got Brady's HVA and VMA levels back (urine marker for NB). His HVA is 17.9 (it was 151 back in Feb) and his VMA is 14.3 (it was 87.1 in Feb)!!! Both levels are well within normal limits. This is fantastic news and tells us that obviously there is far less NB in Brady's body. What remains is so small that it isn't even registering in his urine. This is another small step of reassurance for us. We will repeat this test in 3 weeks.

On to the doesn't look good. The site is red and irritated and it appears that there may be some discharge. Matt called this morning and we didn't hear back, so I called at 3pm. The NP said that we should bring him into the clinic to have it swabbed and tested for infection (which will take days!). I told her that we have an appt with our pediatrician tomorrow and that I will have her look at it and give us her opinion. I'm hoping to have her as an ally in advocating for removing it ASAP. I think it is ridiculous to speculate about whether or not it is infected. Let's assume it is and get it out now! Why take off the dressing, swab the site, clean the site, and apply another dressing while we wait for test results! It just seems insane to do that at this point. The NP is calling the surgical NP tomorrow to see if there is a way to get it out sooner. Frustrating...

The scans and reports are on their way to Sloan today. I sent them out myself and will follow up with my new contact there on Tuesday morning.

Brady had another great day at PT. He bops around the PT room, walking the whole time. He is becoming so bossy these days, telling us just what he wants to do when he wants to do it! He is interacting well with Linda the new PT and we are both so amazed at what he can do. Certainly his crawling days are well behind him. God is so good! I definitely think it is time for another Brady walking video to be posted on the blog. I'll get Matt to work on it over the weekend. I need to share my little miracle with all of you!


  1. That is awesome news about the tests! Now you need to change his picture on the front of the blog to a cute picture of him walking now! So cool...God is so good.

    Hug Brady for me!

  2. Yeah! That's wonderful!

  3. ALL things are possible through Him!! That is wonderful news about the test results!! Oh, I am just so happy for you right now!!

    Yes! We need to see a new Brady walking video!! I am so glad he is doing well with PT, what a blessing!!

    I will keep Brady and the Broviac issue in my prayers tomorrow! Hopefully your PED can pull some weight and get that out sooner!! I don't understand why they would want to wait to take it out has to be frustrating!!

    Wonderful news to end the day! Thanks for sharing!!

  4. Praise God! We expected nothing less, we serve an awesome God, He reigns from Heaven above w/ wisdom, power, and love our God is an awesome God!

    Still praying for more good news!

  5. EXCELLENT news about the test results!!!!! This had to lift a big weight off your shoulders! I've never met you, Brady or your family and even I exhaled a sigh of relief when I read the numbers.

    How exciting is it that Brady is walking around so well now?! WTG Brady!! What a big boy! I'm excited to see the new video!

    I sure hope that when the NP calls tomorrow, something can be done to get that broviac out ASAP!! I can't imagine how painful it must be for the poor little guy. It'll feel so much better once it's out!

    God is SO good and amazing. I give all the glory to HIM!

  6. Megan and Matt,
    God is wonderful as he provides for his faith followers. He continues to support you with his Graces to be Brady's advocate. I know how tiring and frustrating that can be. I will pray for the doctors to listen to you, because you know what is best for your boy.

    Have a wonderful weekend and rejoice in your family,
    Love, Deb R.

  7. Yay, yay, YAY! You must be so relieved about the levels and tickled about his walkinga nd PT progress!! I'm glad you were able to share the great news. Hoping your peditrician will support you in getting the Broviac out right away. Is it something the peditrician could do for you?


  8. I am so happy to hear about the test results! It is such a wonderful testimony of the greatness of the Lord we serve. I can just imagine Brady taking off on his walking - soon he's going to be all over the place! May God continue to give you all strength during this process. You are always in our prayers


  10. praise God for great news!!!! have a good weekend, guys!

  11. We are so happy to hear the news of the test results. Keep those prayers going, everyone!

  12. Dear Megan and Matt,
    I have be keeping up with Brady's progress. I praise God for the good reports he received!!
    God is soooo Good!! I know that keeping on top of everything must be so tiring. I was reminded of Paul who was always reminding us of the "race" all Christians face. Hebrews 12: 1-2 reminds us to set aside all encumbrances and run with endurance the race that is set before us keeping our eyes on Jesus the author and perfector of our faith. I know sometimes that is difficult but I want you to know that many, many people are praying for you and for the strenght that you need to endure and finish the race that is set before you!!!
    God bless you both and your sweet, sweet children and thank you for sharing them with us!

    Caleb's (in Alabama) Mimzi


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