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Showing posts from June, 2011

What a week!

I am not even sure how we have been filing up our days lately, I just know that I always feel busy, though I am almost certain the kids will tell you they are board.

I can tell you though that we (Willow and I) are still hospital free. Yes folks it has been 11 days since we were released and we are still doing great!  I will say that she is a bit fussier than she was in the hospital, but I do believe that has to do with how warm our house is than anything else, at least that is what I am hoping is the case.

Let me see if I can tell you some of the things we have been doing to fill up our days.... We have gone to the children's museum and the kids had a blast there!  Mandie loved the animal hospital area, Evan loved to just sit and build with PVC pipe (I think I know what to get him for Christmas now!! LOL) Jonathan spent about an even amount of time at all the exhibits, nothing really stood out that he spent a lot of time at.  But that is okay, he is kind of reaching that age of …

A few Milestones

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Willow has learned to roll over! At least from her tummy to back!  I am so thrilled for her and for Mandie who was trying to help her out! LOL   While at the hospital she also had found her feet, meaning she now knows that she has toes attached to her body!  For the last week and a half there, she has been so entertained by piggy toes! I know they are small things in a baby's life, but for Willow they were things we were not sure when she would be able to do; and for her to hit them close to a "normal" range is such a blessing. I want to once again thank all of our friends for their support, prayers, healing thoughts and energies that were all sent our way.  

What a weekend!

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Well, the week at the hospital was pretty boring as I would have really wanted it! That means that all of her cultures were always negative, and she never spiked a fever, had no leaking issues and no signs of problems with the new shunt! So really we spent a week at a really expensive, not so great in the food department hotel! LOL  Yes I am trying to make a joke here; but really I was happy to have a boring week at the hospital. After all, there was plenty to keep my busy with it being the kids last day of school!  

Jonathan was promoted out of 5th grade, and had a wonderful promotion ceremony at the school.  I did make it through without crying, after all I did not want to completely embarrass him! But, I also had to make sure to take a few pictures too regardless of whether he would be embarrassed or not. That is a mom's job! So Wednesday, I had a friend (Thank you Jodi) watch Willow for me so that I could attend Jonathan's promotion.








By Thursday I knew we were getting clos…

Frustration is setting in....

Well, as I had said the surgery on Thursday went well.  She did great through her recovery and was discharged on Saturday!  Yeah homeward bound!  I did indeed have mixed feelings about this as I really thought that they were going to keep us in order to watch for infection or any signs of allergic reaction... But no we got to go home! So we pack up, with the help of our Aunt Becki, and head home.  It was a joyous reunion of sorts; Jon was working, Jonathan was in bed sick and the other two kids were with a friend at Millennium Park!  So, I unpacked our things, started to clean my room and then decide to go sit out side for a bit and enjoy the sun, fresh air and hold Willow on my lap.  One of our neighbors came over and we were just talking and she just happens to notice that Willow is sweating. Only it was not sweat, it was indeed CSF leaking,  only from the old shunt site!  What the heck?! So, I of course hit panic mode and take her back to the hospital, where they replace the stitch…

What a day...

Once again, I am exhausted.  I will be so glad when I can be rid of this sheer exhaustion and go home and be tired of all of the normal "home" things!  LOL

But today Willow had her surgery to internalize her shunt, and all went well with that.  It did take a little longer than normal, but I guess they started later than they first thought they would... either way of course Jon and I worry and begin to think things etc... When the surgery was finished, we were told that all went well and that there were no complications.  Now to refresh the memory of some, here is a link to explain the shunt (it will also help in the rest of this story): http://nhfonline.org/treatment.php
The part I will be talking about is referencing the parts of a shunt, if you remember she became allergic to the shunt itself, then even after it was removed still had problems with her eosinophil count.  At the expense of restless nights, and days of researching and asking everyone the same question!  We a…

Praise the Heavens!!

The end is near!  So she has been infection/bacteria clear now for 7 full days, today is day 8 (and I was told the labs came back already for today and she is clear!! LOL)  So joyous dance for that, but then Laurie, Dr. Foody's PA came in and asked how things were going, and I said fine, and of course asked when surgery will be.... She said she will try for Friday or Monday. I began to get excited!  Then a few minutes later Dr. Foody himself came in and looked at her and saw that she was not leaking, and super smiley... He then says, he is going to talk to the infectious diseases doctor and see if we can do the surgery TOMORROW!  Oh my word can this get any better?!

So, the doctors round at the room and we are talking about her weight loss, her Hudini magic tricks, her smiles etc.  Her proteins are well, iron still a little low, but not worrisome.  Then they tell me she is going to be NPO at midnight, I ask why and they say surgery is scheduled for 7:30 am! Yes we are finally goi…