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Showing posts from July, 2011

9 days later...

Well, we have been home for 9 days now and she is asleep now to close this day!  The days have been long and quite hot.  Due to the heat I have not been able to take the kids anywhere as Willow cannot be outside in that type of heat all she does is cry, which tells me she is in pain.  I feel bad for the other kids as they want to go to the parks, pools, etc.  and while I would love to take them, even I do not want to go out in that heat!!

This week Jonathan is gone to Boy Scout camp.  They have family night on Wednesday and we plan to be there!  He would be so upset if we did not make it, but I do not see why we cannot make it.  I am really wondering how he is doing, he has decided to take swimming lessons at the camp, which is funny because all the years we have tried to teach him he did not want anything to do with it, but alas, I have an 11 year old going into 6th grade and boy is he growing oh so fast.  :/

This week has also proved to be very enlightening to me... I have heard to…

What's in a day...

24 hours...1440 minutes...86,400 seconds. No matter how you say it, we always feel there is never enough time.  

     Well, I am not sure what this day will hold for us, we are all hoping it holds a discharge from the hospital but she is not exactly, completely herself this morning.  She woke up just fine, then I nursed her and she began to get fussy, like she was in pain fussy not just gassy. We have to wait to see Dr. Foody this morning and I believe she is due for an antibiotic around noon or 1 so I know it won't be before that if we do get to go.  I have seen that the day also holds the beginning of a summer heat wave! What a week to be going home, LOL.  Yet, that does not matter to me, it just means trips to the pool or lake shore are in store for us. Or if it really is too much for little Willow, then we just chill in our AC room! Either way we will make it through.

     So, you all are probably wondering how did surgery and the last 2 days go.  Well, they came and went, a…

Number 8

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Tomorrow is her eighth surgery in 11 weeks.  I am... Yup, I just am.

Today was a bit of a gift though.  Jon said he would come and visit me and well after I was beginning to think he would not show up as it was getting later in the morning and I knew he had some training work to do at 2, he did indeed make it! He came bearing gifts of BLT sandwiches and Pringles. I have to say I was so excited to have "real food" :)   A simple BLT sandwich was so nice today after a rough weekend.  So, he was only able to stay for about 10 minutes though, and started to gather the children, but I asked if they wanted to stay with me as the latest he would be working was 4, and I figured the kids could sit with me for a few hours and behave... He was not so sure of our children though, and offered many a times in the last 5 minutes prior to leaving them coming back with him. Yet they all chose to stay with me! :)   It made my day to be able to spend some time with the kids; we played rummy, a…

Found a story that made me cry today...

The Special Mother By Erma Bombeck
Did you ever wonder how mothers of disabled children were chosen?
Somehow I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation.   As He observes, He instructs His angels to make notes in a giant ledger.
"This one gets a daughter.   The Patron saint will be Cecelia"
"This one gets twins.   The Patron saint will be Matthew"
"This one gets a son.   The Patron saint.....give her Gerard.   She's used to profanity"
Finally He passes a name to an angel and smiles.  "Give her a disabled child".
The angel is curious.  "Why this one God? She's so happy"
"Exactly," smiles God.  "Could I give a disabled child to a mother who does not know laughter?  That would be cruel!"
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of sorrow and despair.   Once the sh…

The week ahead

Well, her neurosurgeon came back today! He stopped in for a few minutes and said to Willow as she greats him with her famous smile, that she is too friendly with people in scrubs! LOL  Yes, my daughter has no fear of the medical professionals, and while that is great at the same time at such a young age, it sucks!  But he felt her soft spot and said that was looking good still, visually looked at her head and said they would be putting the shunt back on the right side (the side the first one was in) and that it would be with a new incision. Their "date" as the doctor called it is set for Thursday at 7:30 in the morning.  And it will indeed be with the pediatric surgeons as well since that side was the one with the pseudo-cyst, so it may take longer than normal.  Basically they are both teaming up in order to take all precautions necessary.

It was a quiet weekend, we are still fever free and cultures are still coming back clear so we are good there.  They decided to give her…

Random thought of the day...

So how "Green" can a mommy who has never paid much attention to that idea really become!  Last night I saw a commerical for the Baby Bullet http://www.babybullet.com/?gclid=CKWBgZX-76kCFQJrKgodJ0z2YA and really decided that I want to make Willow's food!  Crazy I know, since I never did that with the other children, but it really makes sense to make her own food, after all she has a latex allergy precaution. Now I know it is a precaution, but I was speaking with the neurology team and they feel that I should be cautious of these things, at least until she is older and out of the hospital for a while (after all I really don't want to be here anymore) so here are the basics of what I cannot feed her:

apples, bananas, kiwi, peaches, plums, figs, grapes, melons, papaya, passion fruit, cherries, nectarines, pears, pineapple and strawberries;carrots, celery, raw potatoes, avocados and tomatoes;chestnuts and hazelnuts;wheat and rye.http://www.health.state.ny.us/environmental…

Changing things up!

I decided to change things up a bit with my background and I then went so far as to change the name! I decided that while this blog is a lot of information about Willow (hence Willow's Wishes) it is also about the family, and maybe even Willow's wishes for the family!  LOL  But while it was about my day, it is also about our family's journey through this new life we have Willow.  After all there are many changes taking place in our family this year, aside from all that is happening with Willow...

Have I mentioned that Jonathan will be starting the 6th grade this fall?!  I truly feel that is crazy! Evan will be in 3rd grade and Mandie, my little Ms. Sassy Pants, will be in 1st grade!  I truly cannot believe how big these kids are getting.  They had their well child visits today, but since Jon took them and I did not, I do not currently have their stats, but I am sure they are bigger than last year! :)
Their summer has been a bit chaotic with Willow in and out of the hospit…

Happy 4th of July!

There are many things I am thankful and appreciative of; such as my freedom first and foremost. I have so many rights that others do not that I am thankful for.  I have many family members who have are are serving to make sure those freedoms are kept ours and while I may not speak to them on a regular basis, I appreciate their dedication and the dedication of all other service members that do the job that so many of us may not be able to do.

Yet with that happiness of our freedoms, comes my sadness, anger, frustration etc. with our current situation.  I wanted to take my family outdoors and see the fireworks, and instead I am stuck in the hospital with Willow, and Jon is at home with a fever so my other kids don't get to see the fireworks.  I feel bad for them, I feel it is not fair that the family is divided like this and I cannot help.  I feel frustration that my plans could not take place... But in all of this craptastic feeling is yet more good news!

Infectious Diseases came…

Still early..

Well, today makes day 3 in the hospital.

 It has not been as easy as the other trips here. I guess for starters we weren't really prepared for what happened; I mean we had no idea she had an infection until we got here to the ER.  I only knew she had a sky high fever (which after being here in PICU, I was told by our favorite tech. that when it gets that high we have to be careful as children tend to have seizures... Nice thought huh?)  But alas, the first night here we were fighting a fever, which thankfully broke around 11 pm. She spent all day Saturday though still sleeping, waking to barely nurse before passing back out again. :(   I hate to see my baby like that; I hate it whenever any of my children are so sick they just want to lie down and sleep it off and you can visually see how miserable they are.  There eyes don't reflect who they are or anything.  Well that was Willow ALL day yesterday, and as I said I hated it.

Yet, we made it through, and went to bed early (I w…

The 4th approaches...

Where to begin.... 
We have been at home enjoying ourselves, making great plans and truly being happy to be able to deal with the normalcy of life!  The last 10 days have been busy, trips to the library, grocery shopping trips, park play dates, etc.  What a great summer!  
So the plans for the 4th were quite extent actually... we had plans to help a friend and house sit their house while they were away for a week, we were going to have a celebration of life party before my sister in law leaves for Arizonia, we were of course going to catch the fireworks and be outside as much as possible while house sitting as they have a pool!! Woohoo
Yet the best laid plans... yeah you know how that goes!  I put Willow to bed last night and was visiting with Becki having a wonderful visit.  She left at 11 and Willow woke up at midnight-ish for her nursing and was fussy after it, but I put her to bed and she fell asleep.  At some point she woke up again and I noticed that she felt warm... I took off her…