Thursday, March 27, 2008

Today's Clinic Visit

Noah went to PCMC for his Transplant Clinic again today. And ALL IS WELL!!

His echo looked great, his heart and lungs sounded great, his blood pressure is good, his profusion is good, he is gaining weight, all the nurses LOVE him and his hair.... do you want me to go on? His cyclosporin level is perfect. On the new testing its 92 which is anywhere between 120 and 180 on the old testing. Denver wants his level between 100 and 150 so I think we are close enough. Now, we don't go back for 4 weeks!!!

His poop is also normal now. I don't want to jinx him, but he hasn't had a mucous poop in FOREVER! He's eating baby food solids and doing so well I am thinking of starting him on some finger foods and seeing how he does.

He is rolling over and standing up great, but he refuses to sit up. He has the muscle strength but is lacking the know how and coordination. So we are uping his OT visits from once a month to once a week. I still haven't heard from his PT since January and I even requested a new therapist but haven't gotten an update.

He is saying dada and lots of ga's but that's about it... beside his screaming. And yes, I said SCREAMING! He doesn't cry (all the time) but he does SCREAM if you are not paying him the attention he thinks he deserves.

One nice treat at his clinic appointment today was I finally got to meet Kaidence and her Mom Shauntelle today. We happened to run into them and can I just say... Kaidence is SO cute!! She is adorable in the pictures on her blog, but she is even cuter in person (She takes after her mom who is beautiful)!! I wanted to squeeze her... but being a heart mom I know all about HANDS OFF!!! Shauntelle was also so very nice! It was such a pleasure to finally meet them. I wish them the best of luck as Kaidence has been having some issues with her white blood count. OUR PRAYERS ARE WITH YOU SWEETIE!!

I also got to see Monica and Mackenzie again (our Heart Transplant buddies from Denver. They were at the RMH with us.) Mackenzie is looking SO good. She promised she would come over and play with us sometime soon. And it was wonderful to chat with Monica. I really like her. And her hair looked so great today! She has the best natural color!

So, that's the Noah update. He really is doing SO well.... I couldn't be more grateful to my Heavenly Father for blessing us with so much. And to everyone for your continued prayers and faith on our behalf. It really has helped us through this past year and given us the strength to make it through life's bumpy road.

Much Love to All,


  1. What wonderful news! I love getting great updates! :)

  2. Way to go Noah! I am so happy that he is doing so well. He looks so great in the pictures. Beckham also refuses to sit up. His PT and OT came over yesterday and they gave me a few things to try to help him sit up. We'll see if it helps. Backham also screams if you are not paying attention to him. He wants to be held ALL the time. Our kids are seriously the same kid in two different bodies. Only difference is Noah has so much cute hair and Beck is a little baldy!

  3. Good old PCMC. I'm going again this spring with my boy. It's a great place. Glad he's doing so great.

  4. Hey, I would love your email address. For some reason I cannot get your email off of your web page under contacts. I am wondering if PCMC has started to change their levels. Last week they told us that they are lowering Kaidnece's Cyclo levels. They have been keeping her about 165. I think they said 150-200. She is about 3 months out. Does that sound right? I have wondered MANY times if her levels are TOO high. She will sometime throw up for no reason. She seems to do much better now that her levels are not at 530 (not suppossed to be that high we could just never get her stable). Is PCMC using the "new" systems or not?

    Thanks for everything. It was great to see you last week. I would love to get together sometime when we can be around others. It is great to have someone to talk with.

    With Hope and Love,

    Kaidence's Mommy

  5. YEAH!!! What good news!! It was good to see you last Sunday! You are all still in my prayers!

  6. Crystal,
    I don't know if you remember me but we went to high school together, Rachel Wells. I married Kris Rounds and we have three kids and live in SLC. I tripped onto your blog through another blog and I've been completely consumed in catching up on all the posts and have been reading for over an hour. I just had to leave you a note and tell you how extraordinary you are. The trials your've been through are unimaginable to me and you've done it with strength and love. Your children are just beautiful. I work in the OR and cath lab at PCMC. I wonder if I've ever seen Noah? Anyway, I hope you don't mind that I'll be popping in to check on little Noah. He's such a doll and I'm glad he's doing so well. Modern medical technology is so amazing.
    Take Care,
    The Rounds Family

  7. I came accross your page while viewing another...what a lovely family you have! I also wanted to let you know that I wrote the poem, "When I beacame a Heart Mother", on Mother's Day of 2005.(although it has been altered a bit) My son Braeden has HLHS, and I continue to write poetry, which I share on his carepage. I'm glad to see that Noah is doing well. Feel free to visit at www.carepages
    page name:babyhusted

    ~Stephanie Husted
    (mommy to Braeden HLHS post Fontan)

  8. What an uplifting post! I am so glad to hear of how well Noah is doing, and even his little heart buddies!


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