Thursday, April 8, 2010

Philip medical update..

  (This pic is a MRI scan of Philip's brain.  The dark area on the scan is the mass..The white stick looking object is a piece of old shunt tube that they can not get out due to massive blood vessels..The last time they went in..he had the stroke..)
Philip's surgery has been set for April 20th.  The day after his birthday.  I am glad he will have his birthday first.  It seems that for years and years..Philip has either been in the hospital or had surgery for every holiday and his birthday.  I have family pics from holidays and he is in some type of cast or drain or tubes.  So we are thinking this is a sign from above..better things to come..yes?

Medically things are NOT stable.  They seem to be getting worse.  And to be blunt every time we try to take a step forward we seem to take a giant leap backwards.  I did express this to the DR last week.  He was very kind but honest...we are not curing anything right now..we are trying to put a band aide on a problem..until something better comes along.  We did have a long talk about some future stem cell studies.  On the way home from the appt I asked Philip what he thought about that idea...and he said..he feels it is easier to not expect it and that way he is not disappointed.  I so wanted to argue the point with him...but I did not.  He is entitled to feel how he wants to feel. 

Philip's right hand has no use..and his left hand and left leg  is losing the strength and is always in severe burning nerve pain.  I think this is why he has been dropping things and also falling more..They have increased the pump meds twice in 10 days..sigh..

I have been thinking about his future and looking into some options.  We had been looking at a bamboo board..does anyone have any info about these or how they worked for you or your child...One thing I know is important is his ability to go online and listen to music and such.  The Dr mentioned that if we can not get control of this issue he may need to move to some touch screen items.  I had thought of trying to surprise him with a Ipad for his birthday.  It would make a great gift..and well he could use it ...with his medical issues..and not feel like he was "uncool".  We will be holding off on the ipad now that he is having the trio of operations..but who knows..maybe one day..

Speaking of the surgies...The first one will be difficult.  It involves his spine . and the nerves...and that in itslef makes me uneasy.  We then will move on to the next stage..but going to focus on one thing at a time..

One problem that has clearly shown up is..Philip has a serious problem with his hip..This is due to the leg length problem and it has taken a toll.  The fix to that would be painful and complicated..It also is not something that is a one time fix.  The Dr are spending some time in consult about this..because due to the machines Philip has in his body..he is at a big risk for infection and rejection. We are holding onto faith that the Dr will know what is the best choice.

The seizures and the sleeping and headaches are coming from the mass in the brain..damn mass..It has cause us more problems then I can even explain..That was what started the whole brain operations and stroke..and to think here we are working towards brain operation 20 and it came back..My goodness..yep I hate it...and I hate that some days I feel like it has stolen my son's quality of life and happiness.  It seems to control everything..

If anyone has any great and wonderful Birthday ideas...pass them on.  I will be having a hard treatment right we will not be going anywhere as a family. But we WILL be together as a family..Thank you God.


Hair Bows & Guitar Picks said...

Thinking and pray for you and your family

Stefany said...

As you know, my prayers are with your family and especially Philip as he goes through more surgeries. His birthday is a day after my kiddo's.

I don't have any great ideas for a birthday fun. Do you have a Wii? Can you all go bowling (at home) or something?

Hugs to you all.

Blissful Babe said...

Dearest Amy. I think the iPad is a wonderful idea. Maybe we all can come up with a way to make that possible. :)

It has been quite a while since I have been here to read, and sadly, things are pretty much the same. I wish the best for you and your family, especially Phillip.

You all sound like a bunch of troopers, and I know that God definitely has a hand in your lives.

May He bless you & keep you.

Hang in there, my friend. xoxo

Nikke said...

Happy early birthday to Philip!
My birthday is the day before his.
Praying that things go well. *Huge hugs*

Angela said...

Amy, I just wanted to let you know that I have shared this post and your blog on my Fearless Friday post for others to surround your family and Philip in prayer..((hugs))

Lianna Knight said...

Praying for you girl :) You are such a STRONG, DEVOTED, and INSPIRATIONAL mom...don't let anyone tell you otherwise!!!!!

Manic Mother said...

I know its not easy, but hang in there Mama. Sending hugs and love your way!

Jen said...


I have to be quick right now, but just read this post and wish I could give you one giant hug!

No matter what I am going through, I could never even fathom what you are going through.

In such a short time of reading your posts, I have seen the most amazing amount of strength on your part. On Philip's part. You both render me speechless, that doesn't happen very often :o)

Thinking of you and sending every good vibe your way.

I wish I had some birthday present advise, but I don't, so I won't even try. I do think the one you came up with was a great one though!

Talk to you soon


ixtapacheryl said...

Amy ... you might have mentioned this before and I missed it. Where exactly is the tumor located? Jeff's was at the base of his skull - and he was falling quite often and his balance was off.

You know my prayers continue for you, Philip and your entire family. I just wish I lived closer to you so I could help out.

Hugs - Cheryl

Kelli said...

I just can't even imagine. God be with you and Phillip and all who are caring for him. I pray that everything goes smoothly and just wish so much for things to get better for all of you. Keep hanging in there friend. Maybe I will see you next month when I'm in Florida. I'll email you when I make the trip.

MamaMonkey said...

May I hate the mass for you? And as always. I light a candle for you and your family....

Anonymous said...

You, Philip and your family continue to be in my prayers.
I have followed your blog and
am in awe of your strength.
To be home with him on his birthday is a together and love each other.

Plano, TX

Megan said...

So much going on for you guys! TONS of prayers for Phillip and your whole family!!! (((HUGS)))

misty said...

I hope Philip has a good birthday and send my prayers as he goes through more surgeries. This has got to be beyond hard..I don't know how you manage dealing with it all. I hate that you,Philip and your family have had to go through this, and continue to struggle.I hope you know,you and Philip inspire me daily. You are a strong,determined awesome lady..please don't forget that.Prayers and hugs