A New Year

It has become so hard to keep up with this blog when Willow is doing so very well. But I am realizing it is just as important to share her life when she is doing great as it is to share the days when she isn't. 

 Her last surgery was March 2017. That means she has been surgery free for about 1 year and 10 months! That is an amazing thing to celebrate, yet we have not. We have stopped celebrating her 'shuntaversary' not because it isn't important to recognize, but because she doesn't want to be defined by the machine in her head, or the condition she has. So we honor her in that. Quietly thinking to ourselves how we have gone another day without an issue, in fact, we have gone almost two years!! 

 My goal as her mother is to once a month, update her blog on all the wonderful things she has accomplished the month prior. So here you will see the December updates. Now, of course, if there are some not so great moments, I am going to be honest and share those as well. We aim to be real here with her journey in life with hydrocephalus. 

 Without further blabbering, here are December's updates in photos. 
Pinewood Derby with Scouts - she placed 3rd
Her cookie tray done
Thank you for the FREE ice cream night Spoonlickers :) 
The Birthday girl enjoying a good laugh
Our Christmas Eve Blessing turned 8 
Everyone loves Christmas jammies :)

We are so thankful for a quiet holiday
season with no trips to doctors. 
Of course, it goes without saying, that she needs crazy hair
for Church after Christmas

Comments

Post a Comment

Popular posts from this blog

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 a...
Read more

I never thought today would have come....

Today was supposed to be a normal Tuesday.  I would work until 11 am, then come home for a quick pump & feed (what I call it when I have to pump one side while feeding Willow at the same time!!) and then off to her 4 month check up.  Well all of that went off without too much of a hitch.  Willow is now 25" long, and 13lbs 3 oz.! Her head circumference though was 46 cm.  At her 2 month check up it was only 40.4 cm. and according to my ped. the way she read the MRI report there was no actual blockage to cause any more head growth.... So what happened?? Well we are not sure, but her head grew.   So, while visiting a friend after the appointment I get a call from my pediatrician telling me to go to the ER where we will be able to get an MRI done immediately and get the attention of the neurosurgeon quicker..... So off I go in a panic (I do remember looking at the pedometers and seeing it read at 80+ mph) not smart I know but I was f...
Read more

What a day

Image
Well, it started off okay, got up in plenty of time to get myself to work. Even grabbed a coffee with Jon before leaving the hospital!  (it's the little things right?!)  Did my job quite well today, I really felt like I was back to work and things were going okay.  For those 3 hours I knew where Willow was at, but really there was nothing for me to worry about because for starters daddy was with her, and I also knew that nothing was going on today. It is another waiting day to see what happens. So I work until 11 am, and call Jon only to find out his morning with Willow was not so precious... She pulled out her IV (that they had just put in this morning seeing as the one in her foot exploded), and that no matter how Jon tried to feed her she was not a happy camper.  So I ran home really quick to find Jon had forgotten to give Jonathan his medicine, so I run to the school give him meds, grab lunch, and rush back to the hospital.  Sure enough she was one grumpy ...
Read more