Sunday, February 28, 2010

Lil Kiwi test results and a family in need of prayers

Update time.....

I always get nervous when I post updates... You know that every time I post them we always get some bad news after; however, it has been long enough that I am hoping there is no new news.... So here it goes...

Lil Kiwi had her scans done back in January but had to wait until her appointment with Dr. V in February to find out the results. There was a problem with the insurance company (again) so we were fighting with them, the base doctor and Dr. V's office up until one hour before her appointment. I called to make sure everything was okay literally on the drive to the appointment. Seriously, I wish there was a point A to point B with insurance because dealing with them would make any sane person crazy.

Anyway....

Dr. V told us he is very happy with what he saw and was impressed with how well she is doing. Her kidney is getting a tad smaller than it was; which is good and bad. Dr. V said it's possible that it's not getting smaller just that she is growing and it is not. So something else to keep an eye on. He also said that this new scan showed some new issues. *sigh* The new scans are showing that Lil Kiwi appears to have several wee spleen nodules. So, no left kidney but extra bits of spleen. Dr. V assured us that while this isn't anything to be worried about that it is something that we are going to need to watch. Currently they are fine but depending on what we find in the future and all that fun stuff they could pose a problem down the road. Just like her mystery bone. (click here for a photo of it ) Adding one more thing to the ever growing medical conditions list we have for Lil Kiwi.

We asked him about the Wilms Tumors ,even though it was the Geneticist that requested that test, and Dr. V said that there were no finding of any in this scan. *happy dance* Several questions later and we were talking about Lil Kiwi's spine again. He is still very concerned and wants another scan done but this time he said he is going to make sure to write a very detailed script so that the correct test is done. See why I LOVE Dr. V.... He is also going to write a letter to Lil Kiwi's PCM (primary care manager... ie her main peds doctor) and tell her what he wants to see done because she needs to be doing more for Lil Kiwi. At this I must laugh because she doesn't care one way or the other since she is a civilian doctor that works at a military base. No I am not guessing here we actually have this talk every time I need her to do something or order a test. She flat out tells me all she will do is check ups and shots (which she doesn't even give) because she has too many other patients to deal with. Makes me wonder how doctors that have their own practice(s) with more clients find time to "deal with" them. Rambling again sorry.... Just errrrrr she gets my blood boiling...

So, in August Lil Kiwi will now be having three tests done. The good news is I have the script in my pretty little hands.. okay it's actually locked up in her medical file in the sealed bag I keep them in but I digress.... The bad news is............

We finally found out that we will be moving in July to a new base. You might remember me mentioning it back in December. Well, we were suppose to be moving next month but we got approved for a delay until July. Which means Wee Man gets to finish out the school year here. DH is still trying to figure out a way to stay here (since all her specialists are here) or to be stationed somewhere that has a closer hospital. The children's hospital that we would have to go to is over 90 miles away. So, almost as soon as we get there we will be relaying Lil Kiwi's medical history to all new doctors. The good news is that Dr. V said the children's hospital is a very good one.

Which brings me to another Shenanigans member that has updates. Last month CutiePie went in for the first of several surgeries and I asked for positive thoughts.  Then a few days later I updated you about her surgery and said there were a few complications but didn't give any more information. I can now tell you that CutiePie is good and is back home with her family. She doesn't have to have any more tests done right now and her next surgery is in six err five months now; actually I think it is also in August but not sure. Thank you to everyone that sent out prayers and positive thoughts for CutiePie.

Which also brings me to this last favor. If you do not already know about wee Layla Grace you should visit her site and see what a beautiful child she is. However, before you do that say a prayer... send out the positive thoughts that helped us each time we needed them because Layla Grace and her family need them. Pray for her to be comfortable and pain free....

10 comments:

  1. wow... so much to have to go through with your lil one. so scary!! when our youngest was born, he got sick... we found out he had a heart murmer and 2 pda's-- so freakin scary!! he turned out just great:)

    i will keep lil miss kiwi and you all in my prayers so that things will turn out wonderful for you all as well ♥

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  2. Your kiddos are precious, and I am so happy to read that you got good news from the doctor. Your ped needs a good stern talking to! I don't care if you are a civilian or not, when you sign on to be a doctor you are suppose to CARE about the patients, not the money!

    Will keep CutiePie and Layla Grace in my thoughts and prayers.

    PS-you are the featured blogger this week on Life with 5 monkies. The post will be live at 6 in the morning.

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  3. My husband just asked me yesterday afternoon if I had "heard" how little kiwi was doing. :) I am so glad that, at least for now, Kiwi is doing well. I know that it is hard when you have a little one who needs a lot of medical attention.

    Cutie Pie and Layla are in my thoughts and prayers.

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  4. Glad to hear Little Kiwi is doing better. I hope you are able to keep the same specialists for her or get some new ones that are just as good when you move.

    I've heard about Layla Grace and am keeping her and her family in my prayers.

    Have a wonderful Monday! Thanks for stopping by Healthy Moms and leaving us a comment!

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  5. So glad to hear the good news about Lil Kiwi and hoping everything continues to improve!
    Been watching Layla's updates and saying many many prayers for her and her family. Heartbreaking. Thanks for making others aware.
    Hope you're doing well and hoping the kiddos have stayed healthy since the last big bout of sickness!
    Continued prayers for you and the moving situation...
    Hugs!

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  6. Hooray for no tumors for Lil Kiwi! I hope everything works out with the move and doctors, and all the tests that still need to be done - so stressful...

    Will keep both Lil Kiwi and Cutie Pie in our prayers, also Layla and her family.

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  7. Thank heavens for the good news, thank heavens we still have prayer for the touch-and-go. I hope your new home will be a pleasant transition, even though the hospital is further away.

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  8. So much going on, glad you got some good news. Will send positive thoughts for all the babies!

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  9. of course my prayers are including lil kiwi and your family.

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  10. I am not sure how I missed this post. I will definitely keep you guys in my prayers. Please be sure to update! It is so sad how insurance companies make things so difficult!

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