Friday, January 15, 2010

Those Lil Kiwi updates (finally)

With all that has been going on the past few months I haven't been posting about how Lil Kiwi is doing medically. I would make comments that I would update and then mention updating again but not post. Part of that is because it seemed that every time I posted (or told someone in person) how good she was doing I would get a phone call from a doctors office telling me they found something else. So, I figured if I did not mention it then it can not get worst. Sounds good in theory.

It's been seven months since Lil Kiwi's surgery and yet there are still tests to make sure everything is still working good. She was suppose to get the test done late December (hmm not going to ruin her Christmas) or early January but after ER visits I figured waiting until now was fine. The appointment is for Monday and hopefully it will show nothing new..... although I would love it if it showed her kidney was better but that's like asking for a miracle.

Now..... My mom and maybe only one other blogger even know about this next bit of information and I told then not to mention anything. Not even sure if my FIL and rest of my family know about it. A few months ago I posted about how I was going to post an update about Lil Kiwi but never did. What happened was I had good news and I opened my mouth and told my FIL that she was doing great; then we got the phone call. The Geneticist can not figure out what is wrong with Lil Kiwi but they do have one theory that they want to rule out. We already had her blood and chromosomes tested and they showed nothing. Now we will be doing an ultrasound of her abdomen to see if she has any tumors that can be related to the syndrome.

So, on Monday she will also be getting this ultrasound done before the other test. Two test one day. I'm hoping this will get them out of the way and only cause one day of Lil Kiwi being mad at the world. The hard part of the ultrasound is that it has to be done on an empty stomach so she can't have anything to eat four hours before the appointment. The appointment is first thing in the morning at 7:20 am so unless we get her up in the wee morning hours she will be going hours without eating. After this test she can eat before the next one but I still do not look forward to sitting and wait with a hungry baby.

What is the name of the syndrome we are ruling out? Beckwith-Wiedemann.

They say that she might be an atypical case of it; basically she is the opposite of what they would normally see. However, they are worried that since she does have the one kidney that already has some issues that IF she does have Beckwith-Wiedemann that she might get Wilms tumors.


WILMS TUMOURS



Tumours of the kidney. Around 7.5% of BWS children will develop Wilms Tumour. Because of the aggressiveness of these tumours, abdominal ultrasound scans should take place every three months up to the age of 7 or 8 years. A baseline MRI scan may also be performed. The susceptibility to these tumours diminishes and is not usually a problem after the age of 8. Children with one side of the body bigger than the other or enlarged kidneys appear to be more susceptible to Wilms tumour than other BWS children.

You can see why this could be a problem for Lil Kiwi since she only has one kidney. I'm posting about this only because it's a way to get it off my chest. We still do not know if/when we are moving but we did find out that the nearest doctors that can treat Lil Kiwi are 90 plus miles away. Needless to say I'm getting more and more stressed each day. I know there are people that may drive that distance and do not understand why it bother me but this isn't my choice. This means that when we have appointments it's going to be an all day event. I might have to pull Wee Man out of school if I don't have anyone to watch him on those days. ARGG

Okay.... remembering to breath...

Back on track. What I do not know yet is if we will need to keep doing the ultrasounds every three months just to be on the safe side or if this one will rule it out. I figure this is one of the things I will be talking with the Geneticist about. For now I'm going to try not to worry or stress too much but I know I will. HA me not stress now that's a laugh...

9 comments:

  1. Wishing Lil Kiwi all the best for her tests. It's hard trying to get everything coordinated for those all day trecks. I know it is when we have to do them for Ember. I would say try not to stress too much, but I have been there and know that it is impossible not to.

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  2. 90 miles away is a long ways away in my world. I hope the tests go well and that they can rule out BWS and Wilms. I actually knew what BWS was, because I had Wilms tumor as a kid (diagnosed at 22 months). I was lucky enough to start off with two kidneys, which really simplified matters (to put it lightly).

    Hoping you get good news Monday...

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  3. When it comes to your child it is impossible not to worry. I will be praying for you both. Hang in there and remember there are many praying for her!
    Hugs!

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  4. Thinking of you and keeping Lil Kiwi in my heart and thoughts.

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  5. Hard not to stress when your a mom and everyone around you tells you to breath and relax.

    Many prayers with you and Little Kiwi. You take care of yourself too! Mom's take it all on.

    Much love.

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  6. I'm really hoping for the best results on this! I'll be praying for you and Lil Kiwi. (((hugs)))

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  7. I will keep Lil Kiwi in my prayers. I can not imagine how stressful this must be for you. HUGS!

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  8. keeping you all in our prayers

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  9. Sorry my comment is late but I just wanted you and your family to know you will be in my thoughts and prayers.

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