Thursday, October 14, 2010

Back To Blogging!

Yikes, it's been longer than I thought since I've been on here!
 Our little family has been traveling all over the place. We headed up to North Conway NH the Thursday after my last post and stayed a couple of days, it was so nice to get away just the three of us! Then we had a lazy week at home before we headed out for a long weekend visiting our PA family. Well the long weekend turned into a whole week for Amber and I, it was so great to say the least! In a perfect world I would have been blogging daily about all our fun! Instead I selfishly chose to savor each day and have tons of fun and not tell you all about it ;) Don't worry I'll sit down and give them all the full post they deserve, mostly because I know Blogger won't be cool with all those cute photos in one post!
Here's a snippet of our trips!

It hasn't been all fun and games though, we've had two appointments this week. I know I usually go in order of the days of the weeks but one needs more explanation than the other so I'm going to be a little crazy and go out of order.
Tuesday she had a follow up with her eye dr. It should have been to see how her new glasses are working but  thanks to our lovely insurance it's going to be another week till they come in. I'm not complaining too badly since I'm pretty sure they're mostly covering them and they haven't given us any crap in a very long time! There isn't much else to say Amber was in a very grumpy mood and cried the entire time. What he did tell was he thinks the cornea clouding is actually better! Yeah it makes no sense, he said it should be either the same or worse but not better. We're trying to not get our hopes up too much since it could have been because she was crying, but still YAAY!! Other other yay news from them is we don't have to go back till January!! Well only to pick up her glasses but I'm not counting it.
Wednesday we had a cardiology appointment with her new cardiologist in Boston. We love him! He actually gives us all the information and gives us his opinion! He's also seen other patients with ML although I think based on what he's said it's type 3. His news wasn't really great though. Amber's heart is working harder and deteriorating faster than they expected even with the mitral leak and the left side being very dilated. He told us that if we don't do anything surgically, even using medication, in the next year her quality of life will greatly diminish and at best she might have another 2 years. Right now she is at borderline emergency level for needing her heart repaired. Next Thursday she will have a heart catheterization and the MRI on her heart (and brain) to get more information on how soon we need to do the surgery. We are really hesitant about these procedures because she will have to be sedated/intubated for them. Her Dr's are concerned but not too worried because she did so well with intubation in June, it will also give them an idea as to whether or not she'll be able to handle intubation along with a surgery. We are praying as always for the best but still can not help being uneasy about it.
In good news the wonderful nurse practitioner from our metabolic geneticist set up the mother of all meeting with pretty much all of Amber's specialist! I could pee from excitement! It's something I've dreamed about but never thought was possible like unicorns! Can you tell how excited I am! To be honest it's very exciting but also bitter sweet since we won't be talking about very wonderful things like; what's the most important things we need to do to keep her quality of life good, what is actually going to happen with her, what they can and can't do with her and their roles in her life now. The guest list is; metabolic geneticist, his lady, pulmonary superman, the dread orthopedist, the new cardiologist, the never before met new neurologist, the P.A.C.T team (palliative care people), possibly our early intervention ladies and whoever I'm forgetting (other than us of course!).
 Here this is a good face to represent her grumpiness all week!
Since I know some of you are not cool with me missing "Wordless Wednesday" I squeezed them into the post. Can you guess what the title might have been?

Well that's all for now folks! 


  1. Good to have ya back - but really good to know you've been havin some fun too. Will be praying about major mtg! Make a list of ?? for that one. If you let us know when that appt is, we can try to make a point to pray then too.

    Amber's hair is getting so long! cute :)

  2. Hi Skye, thoughts and prayers are with you, Luke and that precious, sweet girl. Was moved by Grammie Amick to find my "The Message" version of God's Word... reading this ...

    "You know me inside and out, You know every bone in my body; You know exactly how I was made, bit by bit, how I was sculpted from nothing into something. Like an open book, You watched me grow from conception to birth; all the stages of my life were spread out before You, The days of my life all prepared before I'd even lived one day." (Psalm 139:15-16)

    Hearing those words being spoken by Amber herself!... she is such a masterpiece!! ...she is being held by the mighty hands that created her. I pray that you will be filled with HIS peace, strength and guidance in these next days and especially during your big meeting!

    Thanks for your, love LOVE those pictures!

    Paula Keller

  3. Thanks for the post, I am still want a true wordless Wednesday but understand you had much to put out. 50 days and I'll keep peanut busy for you for a day or three.

    Love DAD

  4. always I appreciate your post. It helps me know how to pray for all of you and I LOVE the pictures! Amber's braids are so adorable! You have such a way with words and such a great attitude and sense of humor even in the most difficult of circumstances..I love that about you!
    I am still savoring every moment we had together last week. Finally got around to posting pics on FBook last night(I look a them over and over cause they are so precious to me!), and will get some copies and send them for Amber's photo album.
    Give "SweetPea" a kiss from Gramma today and tell her how very much I love her! You are all ALWAYS in my thoughts and prayers.

  5. Skye,
    Joyce posted an update on facebook so I came over here to read your post. Your daughter is just gorgeous! I wanted to let you know we pray for you all, especially, of course, Amber. But I keep you in my thoughts as a mama, praying for the strength to deal with the "extra special" kinds of things you have to do to care for her. Keep those photos coming, she's a treat to look at!

  6. You never cease to amaze me! And Sweet Pea herself has just shown so much strength this week! Just letting you know I'm continually lifting the three of you up in prayer.

  7. Soooooo Skye, you're keeping us in suspense!! What would the title have been for wordless Wednesday??? Here are my guesses..."Pretty in Pink!" , "How to Control Wild Hair With Beautiful Bows!", "Oh Those Beautiful Eyes!", "Bowed and Beautiful", "If Only You Knew What I'm Thinking :)!", "How to Melt Many Hearts in 4 Phantastic Photos."....I vote for the last one!

  8. Hi Skye,
    I absolutely love the photo of Amber sitting on your lap!! I love that she is smiling. If possible, could you e-mail that photo to me? It would make my fridge look beautiful:)
    I am also very excited that you are going to be able to have a meeting with all of Amber's care providers. That is so awesome. While it will not be a cheery meeting, I think it will be very helpful to you and Luke. When is that meeting? Of course, I always think of you, but I will spend extra special thoughts your way that day:)
    I am so happy to hear about Amber's eyes. That is great news! She so enjoys looking around and taking everything in that I am tickled they think her eyesight is getting better.
    So glad you, Luke and Amber were able to have some relaxing, fun times the last few weeks. Hope you can squeeze in some more soon between your appts.
    Keep up the good work, Skye!
    Aunt Julie xoxo