11.04.2011

This + That Friday!


I tweeted last week that my coral nail polish was in need of change. Particularly to comply with the season! I went for THIS color. OPI Glitzerland. It is perfect for fall. Not too dark. I'll save dark for winter.

I finally got all the piles in my house cleaned up...for the most part from our office demo construction that has been taking place. THIS helps me feel more organized and in control....as long as I don't step into my garage...where I threw all the piles.

THIS weekend Dave + I will be tackling Queen Bee Market projects. The Queen Bee Market is coming up quickly...November 18 & 19th in Del Mar, CA. All the details are here. We are so excited about the Mindy Gledhill concert on Friday night. We've bought our ticket....have you?!



Have we told you THAT we are working on a second booth for the Queen Bee Market? D+A Home will be making it's debut at the market. THAT means we need another booth design. Awwk. We are thinking the simpler the better...but that is hard for us to do. We dream BIG. D+A Home will have recycled and 'made with love' home decor for sale. I'll be moving my lighting and large chalkboards over to that booth. We will also be selling refinished furniture pieces as well as new little furniture pieces that Dave will be creating. And some fun new wall art.

Dave + I were chatting on our way home from the post office last evening. We consider those trips mini dates. We escape without kids, because they hate the post office. We chat the whole time. We started chatting about a certain topic....our dating days and early marriage years and decided THAT we are going to try to do a VLOG for our next Dear Dave + April Tuesday post. Would you like that?



I have been working on a fun new project! THIS is a little picture of an almost finished decorating job that I had for a dear friend....Sarah Lane Studios. It was so fun picking out paint colors, fabric, making drapes and arranging furniture. It was so easy since I was working with a very stylish friend!!

THIS weekend we start a journal for Blake about his toileting needs. It's going to be a lot of work. Checking on him every 15 minutes and recording what we find. But it is necessary and Blake is on board to try to avoid a surgery that none of us hope will be needed. I didn't blog much about our Shriner's Spina Bifida clinic appointment just tweeted that I cried through the appt. Honestly, I couldn't talk about it for two days without crying...so instead I spent time processing the information we received and then called family to share when I felt comfortable talking about it. It still is scary for me but essentially what is probably going to need to happen is three surgeries. I'll explain as briefly as I can....

We went to get our results from the MRI. They look to be fine. It is tricky to determine if a spinal cord is tethered on children with Spina Bifida, but it was determined that while his cord does look tethered on the MRI, based on his lack of symptoms, he probably does not have a significant tether at this time. Phew. I was so relieved. 

Then the urologist came in. I had forgotten that we were also getting results from his urodynamic test. That testing tells us how his bladder and bladder neck are functioning. It wasn't good news. I thought we were meeting with the urologist to move forward with one surgery....the ACE Malone, where the doctor re-routes Blake's appendix to an opening in his belly button and connects it to a part of his large intestines. It allows us to do a clean out every morning using a hanging IV bag connected to the opening in his belly button and cleaning him out bowel wise while he sits on the toilet. Usually about a 45 minute procedure everyday. That took some time for me to decide YES this is necessary. I mean who has an extra 45 minutes in the morning on a school day. But we were ready. What I wasn't ready for was the other two surgeries the doctor started to explain were needed.

The first was a bladder augmentation. Essentially the doctor uses other internal parts to form a larger bladder. This is major surgery with a 10-14 day hospital stay. The doctor would do the ACE Malone at the same time while everything is opened up. The second surgery had me crying. Blake leaks most of the day. His bladder neck fails with any pressure from the bladder and urine. Bladder neck reconstruction with diversion is the surgery that would help stop the bladder neck from failing and stop his leaking. It would also not allow us to catheterize Blake through his penis anymore. Forever. His urine output would be diverted to an opening in his lower left region of his body and we would cath through a hole there. Why did I start to cry? Blake is already different from other boys. This surgery would make him even more different. I don't want him to have to be anymore different than he already is...for his own sake. He absolutely doesn't want to change how he caths. It's not fair to him. He has adjusted to being different but at least still using the proper body part to pee from.

I asked the doctor a lot of questions. He completely agreed to my ideas for keeping a journal to really see how much he is leaking and at what point his bladder capacity is at. Which means we will be measuring a lot again. Did I ever tell you that my sweet friend got me a new measuring cup for my birthday after reading my first post about measuring Blake's urine with my kitchen meauring cup? It was funny, but meant so much to me. The doctor does not like doing the bladder neck reconstructions with diversions if he doesn't have to. He said that once Blake has all three of these surgeries he will be a mess in there and no doctor will ever want to go in there again. Boy that brings comfort. At the same time, we are working with the BEST pediatric urologist in the United States. For reals. I'm not just saying that. How lucky are we? LUCKY!

So while this weekend might be a busy one for us...there is one thing THAT really excites me about this weekend. Fall BACK. We get an extra hour of sleep. WOOT! WOOT! Seriously, one of my most favorite days of the whole year. I bet you can guess my least favorite day of the year?!

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14 comments:

  1. Oh April - you and your family are often on my mind but even more now and in my prayers as well. I love you my friend!!
    - Kami

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  2. Wow April. What a huge thing to have to deal with. I admire you for having the courage to share this on your blog. You and Blake are so brave. Good luck to you both and I will keep you all in my thoughts and prayers.

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  3. Oh girl.. what a time you have had and how well you have done keeping your head on straight. Know that I and so very many let you rest in our hearts when things are hard and rejoice with your when they are good.

    Keep moving forward

    Maddie

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  4. I am always in shock of all you have to do for Blake. I am not well learned on children with Spina Bifida. I do think you deserve Mother of the Year status.

    I am sorry for the decisions you have to make in the near future concerning Blake. I will be praying with you.

    much love
    paige

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  5. April, your honest and heartfelt posts really bring me to tears these days. You are amazing and I'm so impressed with your ability and willingness to share your journey. Blake is as lucky to have you as a Mom as you are to have such a wonderful, smart boy.

    Thinking of you, praying for you and your beautiful family.

    Hang in there my friend. There will be brighter days ahead.

    XO
    Jess

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  6. bless your sweet boy:) you are a busy mamma!

    Do you have to buy tx ahead of time for the QBM if you are just shopping and not attending concert? It's close to me can't wait for it!

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  7. Oh April! I'm so glad you shared this. More thoughts and prayers for you all.

    Thinking of you and all you are doing as the good parents you are. <3

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  8. April, I'm sorry for the
    challenges Blake and your family
    have to face.
    Hang in there, friend.

    And...your nails look amazing.
    That's always a good thing.
    :)

    -keri

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  9. Hi April,
    I just popped in to let you know I posted a pic of my keep calm necklace and new chain and gave you a blog shout out...
    and then I read your update about your son Blake. I am so sorry your family is struggling with something so difficult. I will say a prayer for you and for Blake.
    Hang in there.
    And I second the notion that you deserve mom of the year award!

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  10. April,

    You are such an amazing mama. I can't imagine how difficult this journey must be for your family. Blake is one amazing kid and he is so blessed to have such amazing parents. Hang in there...I am continually reminded that God really is mindful of our needs and is with us every step of the way in our personal journeys. Sometimes its hard to see and feel his presence, but He's there watching over you guys as you navigate your way through all of this.

    Oh, and those nails are rock'in!! Love that color!! :-) Take care my friend....you are an inspiration to so many.

    Hugs,
    jennifer

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  11. April... I am jsut getting around to having a few seconds to read blogs... and of course your was the first one I clicked to catch up on!

    I am SO SORRY that your appointment was so rough! I have been repeadely told Nat needs the same surgery... but I REFUSE to do it. Call me hard nosed, but I am sticking with the new diaper system we have (that is SO MUCH like cloth undies and Nat LOVES it) and waiting ... and praying... Medical technology changes SO MUCH and I jsut can't do that one to my boy without his COMPLETE understanding of what is going on... PRAY about it sister, and talk to Blake and Dave, like I KNOW you will... but KNOW that you don't have to do it unless you guys ALL agree that NOW is the time. It will always be an option latter, but if you do it now, there won't be any other options latter...

    Praying for you my dear friend!

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  13. Okay so this past week I keep coming back to this post and staring at those super cute curtains. Yesterday I finally said, "why not?!" and ordered the fabric in vintage yellow and white. I'm so excited. Thanks so much for the idea, I'm really excited since this will be my first real sewing project!

    On a more serious note- Our prayers are with you and your family as you make big and tough decisions in the future. You have an amazing family and we're all here for support. -Bekah P.

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