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Showing posts from April, 2012

In 4 days...

It will be one year ago that Willow had her first surgery. I know, I know, I have already done a one year recap and she is doing phenomenal ~ I do not take it for granted and I still rejoice in all that she can do and do not dwell on the things she can't (like speak verbally, instead I just focus on teaching her a new sign! :)  Yes, she can sign words! She is up to now.... had to think... I believe 6 that she knows quite well and a few we are just working on. She can sign mama, dada, eat, more, all done, bird.... Learning don't hit, brother and sister.  I will not say that I am a pro at this sign language thing, but I am thankful for a smart phone with great apps! LOL  

So she has completed 12 surgeries already as well, and this week we are having an ultrasound of her stomach done as we found that one of her incisions has developed a bit of a hernia I guess.  It is poking up a bit more than it should.  Some days it looks much better than others, and we don't see a reason a…

Quick update

So Monday night she spiked a fever again, I gave her Tylenol and we went to bed.  I called her NS in the morning, explaining that it wasn't that high but she got a fever again, and that she did not really eat breakfast and also threw up.  So with that all said they decided it was tripworthy of the ER.  So Jon and I packed her up and traveled the 10 minutes to the hospital (yes I am very thankful we live so close to the hospital).
We then get to spend the rest of the day there! It was fantastic let me tell you... Okay so I am a bit sarcastic there, but I am still tired. ;)   So, they drew labs, did a shunt series (xrays of her head/chest) and a CT scant. All came back clear, so they looked again at the shunt series and found no pneumonia either (double checked just to be safe) and so sent us home in time for dinner.  Wow, a whole day in ER and NO answers, I am still frustrated to say the least.

So Thursday we go see the NS office as she needs her stitches removed, so daddy takes …

So what is our 'normal'?

Well, anyone who has hydrocephalus or knows someone with hydrocephalus is aware that everyone is affected in various ways and the 'signs and symptoms' that one should look for are different.  We are still learning really what is Willow's true trigger since her biggest issue with the shunt is not a malfunction but instead the shunt itself. :(  She is still allergic to the system, and so far not showing any signs that her body will accept it any time soon. Her surgery the first week of April was strictly due to her being allergic to the material, not a malfunction or infection but an allergy.  The problem is that being allergic to the shunt is quite rare, I have only found about a handful of cases reported with this same issue.  The treatment for such an issue is to use an extracted shunt or polyurethane shunt system; well guess what?  She has that and is still allergic to it.... Sense my frustration yet?

I am really beginning to grow much more exhausted and frustrated as sh…

Better intentions...

Well, I had plans of a great update for you guys, but alas now it is almost midnight and I am tired.  I really should be getting to bed, but my mind is still racing in many directions none of which have it slowing down for sleep. :(

Quite a few things had changed throughout the day today, so instead of a long drawn out what happened, I will fill you in on the end results of it all! LOL

Willow is now on her fourth IV, you saw that right 4th.  I feel so bad for my baby girl, I once again asked about the chances of a port so that next time she does not have to go through all of this and was told I would need to discuss that with the neurosurgery team, so you better believe I will before her next surgery.  Which we found out will be on Thursday! :)   Happy dance as there is a chance we will be home for Easter!  Woohoo thank you Lord! :)

It seems as if her neurosurgeon was kind of reaching out on a limb here and trying something new with her.  She did have an elevated count of White Blood …

Willow's Weekend Review

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Well, it is Sunday afternoon.  I have endured another weekend at the hospital!  Yesterday was a bit rough as I did not get to leave at all... I hate those days where I am seriously stuck here and am at the mercy of my daughter and when will she take a nap so that mommy can rest too... Well yesterday I won't lie, I took a nap when she did in the afternoon!  I needed it!  And it was so awesome that once we were awake, the nurse came in and did her vitals and told me that when she saw us both napping she refused to come in and bother us! :)  That was so nice to hear. Because I really did need the rest.

So yesterday to fill her time, Willow played in her crib, took laps around the 9th floor, and just hung out in her high chair.  Oh and of course aside from driving mommy crazy, she took a couple of naps! LOL

Today was a bit different. She woke up a bit later than normal (yeah we slept in), until about 8:30. Breakfast came around 9, she refused to nap, so mommy didn't get a shower u…