Willow's Wishes

While my nights are getting shorter.  Ughhh sleep seems to elude me so much these days!  Willow is almost 14 months old and is still nursing!  Woohoo me and Willow, but also I miss my sleep.  I can honestly say I NEVER thought I would be nursing her this long, but while I sit here and long to have my sleep back, I am also happy to know that I have been able to give her so much comfort, nourishment and brain boosting power that I have while she has had a crazy 14 months. Aside from that though, tonight's post is about Jonathan... my oldest, my blond of the family, my smarty pants know-it-all son... No, I have no idea where he gets it from either... (huge note of sarcasm here folks).  Anyway, so a month ago he went tubing the scouts, and he comes home and tells me that night he hit his head... so I look for a bump, don't find one, send him to bed.  Come to find out a week later he is still complaining of headaches, dizzy spells and blurry vision; so I take ...

So today Willow had a few appointments.. nothing major, but I have realized that she has had a few appointments recently and I have not done a great job of updating our friends and family (sorry things are crazy busy when we get to be 'normal' with no health issues!) So last week she had an EEG done, well I called them on Tuesday and got the answer that no seizure activity was found, it came back normal during sleep and wake states, and that there was some background anomalies but those were to be expected due to her condition... Only I was getting this information on my voice mail as I missed the call, so I am not sure what they mean by that. But we have an appointment in July, and unless I see anything else or more seizures between now and then, I guess we will be happy and content with she is okay! Today she had an appointment with her eye doctor to get the go ahead for tear duct surgery at the end of the month... Well, we got the go ahead to skip it!! :)   Woohoo!! Her ...

Well it is February now!  I really cannot believe that it is already February, especially since it seems like New Year's was just the other day.  So the plans for this month? Well currently Willow is recovering nicely from her tubes being put in on Monday. Tomorrow she has an EEG scheduled to see if they can pick up any seizure activity.  I have not seen anything since last week in her therapy session, so that is good.  On the 8th, we go to the eye doc. to get clearance for her tear duct surgery scheduled at the end of this month. Willow also has physical therapy that day, and her follow up appointment with her neurosurgeon.  Busy day! We also have a few things going on with Jonathan as well.  It appears that his scouting trip to Pando has caused him to have something called a Post Concussion Syndrome.  Basically he fell out of his tub, hit his head really hard, and is still suffering the consequences weeks later!  He fell Jan. 22nd, but still...

So, here it is... for all of you who do not as of yet, last year I signed on with the Pediatric Hydrocephalus Foundation as the state of Michigan's co-director.  For my closest friends, this should not surprise you that I have taken on an endeavor to spread awareness of the condition that Willow has. Up to this point, I have not done much except for talk. Now talking has done a lot in a different sort of way when it comes to awareness, I can say that a lot of my friends who knew nothing before know a lot and that is something.  :)  But here is the crazy idea, pretty soon on my facebook page and on the Michigan PHF page you will see a fundraiser called 'have a heart for hydrocephalus'.  It is our national campaign that we do to raise funds for research.  Well, while standing in the shower half asleep, and thinking of a local radio station's show recently and what they have done in the past for special needs children, I thought of this idea that has me so excit...

A much welcomed end too!  We really are truly blessed by how much the nurses here love our little Willow and I am extremely thankful for the great care she receives to (when under Dr. Foody's care since he knows her so well). Anyway, surgery yesterday took longer than normal but Jon and I were keeping ourselves busy with the iPad and books to read so we didn't notice too much how long it was taking.  Her neurosurgeon came out and said there were 'no known complications', so that is good.  We put her back to a 1.5 fixed rate shunt so that will be good.  The other thing he said after surgery is that we really need to get her tubes placed immediately.  And if we could do it on Saturday before discharge even better!! LOL  Yeah like that will happen, but I did call her ENT and the soonest we can get in is the 30th of this month... so two more weeks that should not be too bad I would think. She seems to be in great spirits this morning, so it looks ...

Yeah that sums up the plan for this week. :(   Basically we are to keep her comfortable, how though is the tough part.  They have given us a high chair now so she can sit up in that and eat her meals and play in the chair.  The longest I have been able to keep her in it is about an hour and a half. Pretty good for staying in a chair in one place I think! Better than keeping her medicated all the time I suppose.  They allow me to hold her to nurse her and then short little snuggles.  Yet when Jon shows up yesterday he gets to keep her in his lap the whole 2-3 hours I was gone! What the heck?!  Oh well, at least he got some good snuggles. Dr. Foody came in yesterday and now moved her surgery date to Friday. We are not sure why so I have a list of questions for him so that maybe we can get some real answers from him as to what he is thinking is happening to her. She slept well last night.  I gave her Tylenol and Benedryl at around 8 or 9 last night, a...

Well, this week has brought about loads of craziness.  I have sat down a few times this week determined to up date my family and friends and let everyone know what is going on with Willow but I could not really wrap my own head around the many possibilities that were taking place. At one point this week Mama Bear almost made an appearance as I was beginning to feel completely defeated in all of this.  Then I spoke to a couple of friends and began to feel completely reassured in my thoughts and feelings! :)   Then came the neurosurgeon, then and then and then.... So, now I sit on Friday morning trying to process this roller coaster of a hospital stay.  I will do my best to fill you in and break it all down but I do believe there are still a few questions left unanswered as of 7:40 this morning (don't worry doctors will be rounding soon). Monday evening Willow had a spell of starring off into space, it is called an absence se...