Thursday, January 28, 2010

The Heart of It

***Please Excuse All Incoherent Ramblings ~ my brain is a tad too full**

I just want to point out how cute these two are.
Yesterday was Amber's cardiology appointment and its left my head spinning. I went in fully expecting that this appointment would be like our neurology one; go in find nothing make the Dr's happy that we can rule out something. On the other hand I'm not really surprised that they did find something.

As usual they didn't hear anything alarming and she had a normal EKG. Then she had an hour long ultrasound on her heart; I didn't get to see it but she watched the whole thing, it was really cute! The ultrasound showed that her mitral valve has a mild leak. This could be happening for two reasons.

1) it is common for people with Marfan syndrome to have a distorted mitral valve and leakage. 2) it could be caused by her abnormally shaped chest (which is a symptom of marfans and beals)

The good news is its not that serious so it doesn't need to be treated or fixed at all. They will be checking on it yearly to make sure its not getting any worse. We really don't know how this will affect her in the long run, if it could get worse or how it affects any permanent diagnosis for her. So this is why my head is full, I'm not quite sure how I feel about it yet. On one hand it would be nice to have a definitive diagnosis but on the other hand if her chest is causing growth problems for her heart now it seems like it could only get worse as she gets bigger. I guess we'll cross that bridge if/when we get there.

What I've really learned from everything so far is that its not worth getting worked up about something that you don't know about. We're taking everything a day at a time and focusing on the positive and what she's accomplished so far!
Remember This Guy?

Fisher Price's "Happy Apple" Well the developmental nurse had one and she's letting Amber borrow it. Its so great she loves talking to it, hitting it and hearing the bell! I can't even begin to say how great it is to see her acting like babies her age!
What Else is Going On?
  • Well we had a great meeting with her Early Interventionist and the Developmental Nurse!
  • On the 4th we have another joint appointment with our geneticist and orthopedist
  • I have to make an eye dr. appointment for Amber (and I)
  • After talking to different people we're going to make an appointment at Children's to get a second opinion
In the non Medical world of our lives (yes we do have one!)
  • WE'RE GOING TO PA! we've been trying forever to get some time to get back down to visit the hubby's family so we're going for a few days at the start of next week!
  • yeah that's about it.....
But I would like to remind you all that February 5th is "National Wear Red Day" ( Raising awareness for heart disease is very important because its the number 1 threat to women. I would really like to encourage everyone who reads this blog to wear red that day and take some time to look into the affects of heart disease in women and what you can do to prevent it.
* Now I'm off to enjoy this snowy day and maybe do some baking!*


  1. Hi! I found your blog through Google Alerts. So your daughter is being evaluated for Marfan or Beals? Do you or your husband have either? I'm a mom who has Marfan and I love connecting with other parents! :-) It sounds like her cardiology apt. went well so that's great!!!

  2. Hi marfmom great to hear from you its always nice to connect with other people who have been there or are going through what we are! The Dr.s originally thought Marfan but now they're leaning more towards Beals. Neither of us have them and we have no family history of them either.

  3. Good Mornin' MommaSkye. Thanks for the update. Lot's to pray about, ponder & process. Remember - God is in control of all that you are not. So glad to see that you are enjoying the freedom that gives you to focus on the positive & her accomplishments right now! :) That pic of "Daddy's Girl" is so cute! I hope y'all have a great time in PA! I happened upon this blog this morning & saw a really cute napkin dress there....& you & Amber came right to mind. Could be a fun mother/daughter could make it & she could look adorable wearing it :)

  4. Thanks for posting you thoughts and updates on Amber! It is soooo helpful for this Gramma in Pa who is too far away from you! It helps me get to know you Skye, and I love reading what you write! I love you all and am very very excited that you will soon be here! All life will be put on hold so I can be with the three of you! Give Amber Gramma kisses for me!
    mama Amick

  5. MyStory~ Thanks for praying for us! It is so comforting to know that HE is in control and we don't have to be! Thanks for the link what a cute dress! It looks pretty easy to make we'll have to try it! I must say I'm pretty fond of the little girls name too :)