Sweet smelling Give Away

If you win..we share..it is only fair..don't ya think?

http://www.littlemissmichelle.com/2009/04/giveaway-of-my-very-own.html

Geek Squad Are Such Geeks..

Just in case you missed my original post...



Why is it so hard to just get a clear answer. I call...they transfer me..4 times. That is okay..I enjoy the music..NOT.

Then they ask for the service number..which I give..he can not find it..Then he ask me if I am sure I am reading the numbers correctly..Okay I may not be a "geek" at the geek squad but I am thinking I can read the numbers.

Then they finally tell me that my computer and hard drive are indeed there and it is checked in and someone will call me BEFORE any work is done to let me know if they can save my hard drive..you know my oh so important pictures..

The nice geek gives me the info to log in and check the status..so I do first thing this morning. It says parts received and being repaired. Umm...great...what about my hard drive..what about my precious pictures that I was too naive to back up...please please tell me some news...

So I call back to the dreaded 1800GeekSquad...transferred too many times to count..and finally they say..well mam we have no idea..DUH..okay sorry that slipped out.

They will call me back..they hope today.
I have been searching through my photo bucket today. I loaded a picture of Jimmy and I in there and messed around some with the color..
So since I have no pictures..how about I share a few that I do have..

You Snnoze You Loose..Yes I Have Teenagers..ha

Today is the last day to visit Brandy's Awesome site for Philip's Online Benefit Party. The party ends TONIGHT...so all orders received can be mailed out and received before mothers day.

I will never be able to thank Brandy enough for her generosity towards our family. She not only has been wonderful to work with...but is donating all her commissions towards Philip medical fund. I am so thankful for her kindness. She is truly a wonderful example of Grace and Giving. In today's world you do not always see such acts of kindness towards others. So a big thank you Brandy.

A few asked about the option to donate instead of ordering from the party. There is a button on the side bar of the blog. And funds collected will be used for Philip's operations cost, Rehab cost, medication co payments and follow up treatment in out of state hospital.


But wanna know what we need more then anything and can not be bought with all the money in the world? Prayers...and you all have been giving those so freely to our family over these past weeks. I promise you there are so needed and appreciated. I can feel your love and support ...Thank you.

Wordless Wednesday

Tell me how cute is Philip here? I LOVE this picture...

And I love my sweet son.

Just trying the best I know how.

I am starting this without even a title ..why? Because I can not think of a title for this. This is going to be a mixture of a lot of emotional stuff. And that in itself makes me feel bad..or should I say self conscious...Let me explain.



I never wanted my blog to become my emotional dumping ground. In fact I started this blog before I even had a idea I was sick with cancer . I also started it because I wanted to have a place to share everyday life things. But if I am honest with myself and all of you...lately my medical issues and the seriousness of Philip's medical condition is my everyday life. Along with the other areas I try to share.



In no way is this a plea to get any of you to come here and say..oh no we want you to not feel bad for venting here ..etc. I know you all want me to have a place to come. I also know you want me to come here and share. I just know that it can get old, hard and draining some days. And that is just me being honest when I think of all of you coming here reading lately.



Now ..let me say..No I do not write my blog to "keep my readers" or to please my readers" etc. I write my blog for myself. But if we are honest as blogers we all get attached to our readers. We all want our readers to stay and we build relationship with our readers and become friends. So for me it is not as simple as ..who cares..



But I also know I am who I am...and this is who I am..so here it is.



Today I am a mess. Last night things came to a head and today is the hang over from that. I know there is a light out there. I know God has promised me and each of us that. But today I am human and hurting . The more I have tried to talk myself out of it the more the tears have fallen. I will be honest with you...I really hate days like this. I do not have time for them. I have a lot to do. Appts everyday. Medical issues to deal with. Insurance issues that need to be resolved for Philip's operation. Follow up care to be arranged. My records sent out to find a new oncologist. Getting the house ready for Philip's OPERATION. On and on. To sit and cry and dry my tears to only cry again..is just taking a toll today.



I think what has finally hit me is...there is no easy fix to any of this with Philip. No magical fix. No operation. No pill. Nothing I can do. We have been doing this for 19 years. We have watched Philip suffer from one thing to another to another. And as his parents has always pushed him and supported him to be as active and "normal" as possible.

Let me explain to you why this is such a hard blow for me right now.

Well for one..I am worn out and fighting my own battle. I think the fact that I have not recovered fully from the 3 major operation in the past few months has taken a toll. Along with the chemo and the plain worry of being sick and not being here to be a mom to my children. In no way am I feeling sorry for myself. I bring this up to point put that I think it makes me feel less in control of anything in my life.

But also the medical issues that we are dealing with now with Philip are new and even more complex then the ones we have in the past. The simple fact that there is a possibility of that is scary and shocking. I use to think his stroke on his right side was just so sad. The multiple operations to try to fix anything we could of that side were so painful. The leg length difference, the nerve pain, the cutting and turning of bones...the machines to stretch the bones..all of that failed. But we did it..why? Because we needed to try anything and everything we could. That is what parents do.

The dreaded mass in the brain stem. The thing that started all of this..came back.. How can you have a mass that cause so many issues ..brain operation 6 weeks old..brain operation stroke 6 months old..brain operation..shunt broke off 5 years old..pseudo tumor need two more shunts..Why in the world would it come back..and be so embedded so deep in the brain stem and be surrounded with artery's. They can not go in and shunt it cause they can not get to it without the worry of him bleeding too death. They can not remove it because he could bleed too death. They can not remove the foreign object in his brain stem embedded in a mass cause the risk of him bleeding too death. They do not want to leave it with a new operation and two shunts in cause the risk of infections. Damn brain stem mass. I hate this brain stem mass. I know it may seem crazy . And really it is. But I really hate it. It has changed our lives and it has haunted of since Philip was 3 weeks old.
So now we deal with seizures. They are so deep that it causes a issue with medication. Know what the cure is? Cut out that part of the brain. now mapping that part is complicated because his brain has re routed somewhat because of the stroke at such a young age. Which let me add we are thankful his brain did re route .
So now all of the sudden there is this new issue with the left side. No one can figure out what it is. They can tell us what it is not. Of course while they are searching they find a host of new issues..a syrnix in his tspine and some kidney issues..
How the heck can he go from no problem with his left side to waking up one morning with a left side pain to losing strength in his arm and now leg and severe pain and lack of reflexes.
The last few weeks have been hell for Philip and with him. He is weaning off 60 MG of extended release Morphine and 50 mg of percoett ...He is sick and angry and hurting. Plus now his headaches are back full force. He can hardly get out of bed and needs help getting up and getting dressed due to the pain. He is due to wean down even more in 4 days.

AS a mom I want to be supportive and I am. But it is getting hard. I am sick. I am worn. And maybe I am just feeling a tad defeated too. Bless Philip..you know how much I love him..but withdrawals are harsh for those in the path.. Just to clarify..Philip has to be off his prescribed meds before his OPERATION bu May 5th. The DR knew how hard this would be. I thought I did. I was very wrong.

Philip being still a kid. Wants to back out of the OPERATION and go back on the meds. That is not a option. He can not live his life drugged up. I know he is scared of the next wean date. So am I.

On top of all of the medical issues for Philip. We are facing some other battles. This has been a long road. As many of you know even a short medical battle can hurt a family finally. We have been doing this for 18 years. In reality things have piled up and we have fallen behind. Between my operations, my ongoing treatments, Philip medical and up coming operations and future rehabs and Jim being out of work for 2 months..reality has taken it toll on us. I have been trying to work with our mortgage company to get caught up. It amazes me that some companies just do not want to work with a family, no matter what. I would ask for your prayers in this area.

After speaking to the Dr yesterday. It was decided that after Philip heals some from this complex operation. He will need to be treated in a out of state hospital. There are three options. Duke, Mayo, Sloan...non of which are in Florida. But according to the DR..we have to find a place that can help Philip the best. We have exhausted the testing here. His records are being gathered and DR being contacted as early as next week. We will meet with the DR next week to discuss some options. I do know that while this will be complicated with Philip and I being away from family, finding a place to stay while out of state, and me finding a balance between my health care and us getting Philip taken care of...this is a blessing ...our prayer is to find some treatment that can help Philip.

I would also like to thank all of you who visited Philip's party or donated to his fund with the button on the side bar. This money will be used for his medical cost. Between the operations, home care, Rehab and then being away for possible months from home. You can imagine even with doing this for so many years these next few months are a very scary time for our family. So thank you all.

I would like to thank all of you who pray for Philip and our family. I will admit some days it is all that gets me through the days. There have been days I have been sitting in a DR appt and I can actually feel the support. What a wonderful blessing each of you have been.

This has not been a short battle. There is no road map. There is no treatment plan mapped out. And I am having to dig deep and depend on God like never before.

I may not be doing it pretty..but I am doing it. We are so blessed to be Philip's parents. I thank God everyday for letting me be the mom who gets to take care of him. What a amazing road he and I have traveled. But even on great trips..sometimes you can get weary or tired. I pray that Philip and I have 100 more years together...I love him that much..

Thank You for letting me get this off my chest today.

Philip's Story...Part Seven

If you are new to my blog ..
Take a minute to read from the start of Philip's story. I hope you will enjoy watching what miracle God has shown in Philip's life before he was even born.

Part One
Part Two

Part Three

Part Four

Part Five

Part Six

They told me the Social Worker would be in to talk with me..and they had called Jim back to the hospital to be with us until we were ready to leave. I had no idea how much our lives were about to change. My sweet little baby boy.

Well the joys of having a DR on call who does not have the nerve to come back and face the fact that he had made a mistake. This left me in a hospital room alone not knowing what in the world was wrong with Philip, where we were going, why and when. Thinking back to that time..being a new mom and so young...I know I had to be so scared.

A few hours later the social worker came in and told us that a blood test that had been ran came back abnormal and it showed he had metabolism disorder. She told us he would be airlifted to the out of town Children's Hospital where he could be cared for better. We got ready as best we could in the few minutes notice we had and off we were taken to the crictial care pad.

The hospital has there own critical care air care to transfer patients. Jim had to follow in the car. They took Philip and strapped him in on a gurney laying on top of me. I remember how scary it was..and how sore I was from laying so long with Philip strapped on me still healing from my csection.

When we got to the hospital Reality really hit. Sitting here thinking back to that night I wonder what I had to be thinking. They landed and all these Dr and nurses came and got us. They took us up in a elevator and I heard them say take them to a pod in the Peds ICU. I remember asking...he is going to the ICU? And they said yes. Then they said the DR are on their way in to see you now. BY this time it was 2 am. Wow what a change in 24 hrs. If you recall back a day ago I had a DR telling my DH that I was a hormonal mom who did not realise that babies spit up and sleep. Now we are airlifted to a out of town hospital to be taken by tons of people rushing my baby to peds ICU and specialist were coming in the middle of the night to see Philip.

Within minutes Dr were everywhere . They took Philip and decided to re run each and every test they had ran at the local hospital. The metabolism DR came in and spoke to us about the test that was abnormal. It was a ammonia test. He said that he thought it was a false positive. He said that many times the test can get a abnormal reading if a person smokes and handles the tube etc. So where in the world did this leave us? What was wrong with Philip?

For days they ran different test on Philip. No one could figure out what the problem was. Philip would continue to projectile throw up. He started to turn yellow and the whites of his eyes even turned yellow. They ruled out Liver failure. We were assigned a DR Named Dr. Perez. He was a resident and to this day I know his name, his face, his voice. He became the person I trusted and depended on. With each test that came back negative, I grew more scared. It was almost a repeat of the local hospital. But the difference was Dr. Perez. One day stands out so clear in my head. Dr. Perez came into our room and picked Philip up. He was so tiny and so fragile..he did not wake up. Dr. Perez tried to wake him up and Philip would not wake up. He took Philip by he feet and turned him upside down...and held him that way. I can close my eyes and see it so clear. Philip cried out ...but he did not wake up. Dr. Perez called a bunch of Dr to come in and see Philip. By that time he was awake. I remember Dr. Perez saying...well I know what I see with this kid and he is sick.

Next...what a shock we had.

Wanted To Share...

As you know I am feeling pretty helpless as a mom. I am a doer and I am doing NOTHING. I have been praying for a clear path to make myself feel like I am going in the right direction. Today I finally decided to take a step...

I would like to ask for prayers and support today. I am going to stop thinking and take the step in the direction of doing ...

I know this all sounds very vague..and I do not mean for it to. But for right now...I just needed to tell you all that today I have reached a point that I need to try to do something...anything...to try to help Philip.

I am working on getting that started today.

Will you please pray for me to have the courage and the strength to do and say the right thing...to help guide this in the right path...and even more important to have the strength to follow though. Today is a hard day physically for me..so part of me wanted to crawl up in bed and just think some more. But thinking has not gotten me anywhere lately.

So I am going to work on a plan today....and it may not be a easy one.

I will be back later with some details ...and I hope some news.

Two Days Left..Hurry

Okay...Here is the deal..We are two day away from the end of the Online Benefit Party for Philip. It ends On Wednesday so all orders can be received by Mothers Day. Just a reminder Brandy is giving all her commission to Philip operation medical fund. Wow what a wonderful blessing to our family.

We are really getting close to the original goal for the party...$250 of orders to go and we made the goal...how amazing is that?

If you are new to my blog...here are some links about Philip's operation and also the Party details

As always your prayers and support are what Our family needs most. I can feel the support on the harder days. And we are about to hit some very hard days for Philip.

I also have been having a very hard time with my treatments and the scheduling of my upcoming operation. If you could pray that we can work all the details of my medical issues along with Philip's. I so want to feel strong for Philip when he has his operation.

Not Me Monday

I pray for peace for MckMama during this very difficult time Can not wait to hear the wonderful news that sweet Stellan is home and healthy.Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

My cute little 4 year old Cole did NOT come up to me yesterday and say...I am Edward and you can be Bella. But I will not bite your neck. Can we just agree that having a 12 year old sister is wearing off on him?

Speaking of Edward..Ha. I did not go to a wedding this week and sit down at the outside bar. I did NOT sit and have a nice chat with the young cute bartender that could actually be my son. And I did NOT say to him when he took off his hat...OMG you have Edward hair. LMBO. Umm..maybe we should just agree that me having a 12 year old has worn off on me. Ha.

The cute young bartender did NOT then say...well I think that Edward is gay but the girls like him so I accept that I have his hair. Oh..okay...yeah..whatever. Edward gay...are you crazy.

I did NOT go to post this and did not have a little fit when I realised that I did not even have the logo for this because it too is gone from my hard drive.

And if you have not heard the screams of panic from a crazy women at Best Buys last week ..you can read about my meltdown HERE

I am NOT going to tell all of you that I do have a external hard drive here brand new in the box, unopened and not used. I so do NOT suck and I am so NOT furious with myself. Oh and DH too.

Last and well maybe the best...I have this very special friend SHANNON . She is NOT the one who always finds a way to brag to me about her boobs. And I do NOT find myself looking at her pictures to get a glimpse of these boobs she loves so much.

Well my sweet friend kept me company on Facebook chat the other night. I so did NOT vent in detail to her about the hard drive issue. Being the sweet friend she is ..she says well my DH has offered to try to help you get the pictures off of it. So I am thinking well could I get it back from Best buys and let him try. Then I did NOT have a OMG moment.

I did NOT ask her if her DH would have to see the pictures if he could get them to back up. Then I did NOT say well he could see them but not the Jamaica pictures. I then did NOT feel the need to explain that it was a all inclusive resort we went to for my sisters wedding. And I am not going to waste good drinks. She did NOT not let me know she was dying of laughter at my oh no moment..

Now..do not judge us..it was all Jim's fault. Plus heck we have 4 kids.. married 21 years...4 days alone in a resort in a foreign country in the middle of hurricanes..oh yes ..and well I had just lost 95 pounds...you know the saying..what happens in Jamaica stays there..unless you have to pay someone to give you back the pictures..

Living In Technologically Hell

As many of you know...or have guessed ..or have gossiped..or have said in your head...I am on the edge...about ready to lose it. Ha..

Well if this does not push me over..then I do not know what will...really...I mean..I want to bang my head against the wall...hard ..VERY HARD.

Oh and if you have not guessed...this is a VENT.

Now there is a rule to comment on this blog entry. And yes you all must comment...so you just need to follow the rule. Deal?

Thursday I posted this BLOG entry from my heart...I said how much I depended on my blog and the support it gave me. I even think I said..or I said to my self..yes I do talk to myself often..that I really think my blog has held me together.

Not an hour later I come back in my room to lay down and I go to log on to my computer and guess what? Any guessed? My computer would not turn on. Then it did...and when it did I got the blue screen of death. The one that says haha you are in TROUBLE. My heart sank and I felt sweaty and panicked...

Off to best buy I went...cause I have a warranty..and the computer is not even a year old..and I am going to explain to them that I NEED my computer...it is my lifeline...and they will roll their eyes and think..wow this chick has no life..

So I go into best buys and I see the GEEK squad guy who looks like a geek so he must be smart and I am sure he can take away the blue screen. He looks at me and says..wow that is impressive...for such a new computer. Impressive is not the words I was thinking...

Then he says..well good news...Okay..I feel so much better hearing those words..Your computer hard drive is gone....wow..where is the good news in that? He then says..we can get that fixed and the new one is covered...oh there is the good news...okay..Now let me ask the important stuff..How long and can I get my stuff back?

Hey Mr Geek boy...can you tell how we will get all my pictures off of my broken hard drive? He says with I swear a smirk..well the thing is I can TRY to do a back up for you but it cost..well my pictures are priceless...TRY NOW. And he goes and I watch and I see NADA. Nothing pops up on the screen. I am starting to sweat again..He says..we the hard drive is not giving up the pictures ...so you will just need to depend on your back up....CRAP ...back up..I knew and I know...I suck. I did not do a back up...I blame Jim..He did not do it. But really it is too late..and I am sick with dread...

So I say to him...Oh please please help me..I do not have a back up and I have so many pictures on there and I NEED them..and it goes on and on..He then says..well we can try to send it off to a white .or was it a clean room..well some type of room...that can go the extra step to try to get the data off...So I say okay...let's do it...NOW

Then he says we can send it off and TRY ..Praying and bargaining begins..then he says..once we get it back we then can do the required diagnostic testing on the hard drive to show the warranty company that the hard drive is bad and then send the computer to the other company and get it fixed.

Umm..Mr Geek boy...how long will it be until I get my computer back..a few weeks? He says..no plan on 7 to 8 weeks..This is where I can not say what I thought..but it was bad..really bad bad bad. But what choice do I have....

Okay Mr Geek Boy...let's get it sent...and I signed it off...and they said it would be sent and they would call me..Oh please call me sooon and tell me you have my pictures..I promise and pinky swear to always back up my pictures...

Then I realised..I was really scared about my pictures. Memories of my family . Memories of our special times. Christmas, Family trips...and pictures of my sweet 18 year old kitten we gave to Philip for his first birthday that just died...Oh please I need my pictures...

As I was leaving I saw my special friend Mike who is a manger Best Buys who came up to give me a hard time.cause that is what we do..and I started to cry..Poor Mike backs up and says what in the world is wrong..so I tell him...He tells me to calm down and he went to talk to Geek Boy. Mike is worried about the hard drive and the chance of pictures but we are trying. And he helped me borrow a computer...so I left feeling better. But still so worried...

Now...I need to add..I have NO pictures...NO email addresses at all...NOTHING..so please email me with a hello so I can add you to my address book..please...

So you think that is enough..NOPE..
Today Cole had Tball. Camera was dead..so we put the battery on charge and took the camera..We told Emily to bring the battery when she came. The phone rings and she is hysterical...she has lost the battery on the way there. It was in her pocket and it is gone. Are you kidding me..this is not my luck..Oh haha..it is..so I tell her we will look at it is okay to calm down.

We spend a lot of time looking on the road..and it is gone..so no battery..for the camera..to have for tball today to replace the tball pictures I lost on my hard drive of my computer...

And last but not least...My dryer is broken..


Calgon..take me away..maybe I should just not ever get out..

Okay...I am done now..well not for good but for now..

My Son Philip

I'm down on my knees again tonight,I'm hoppin' this prayer will turn out right. See, there is a boy that needs Your help. I've done all that I can do myself His mother is tired,I'm sure You can understand.

Each night as he sleeps She goes in to hold his hand, And she tries Not to cry As the tears fill her eyes.Can You hear me? Am I getting through tonight? Can You see him? Can You make him feel all right?


If You can hear me Let me take his place some how. See, he's not just anyone, he's my son. Sometimes late at night I watch him sleep,I dream of the boy he'd like to be.I try to be strong and see him through, But God, who he needs right now is You.Let him grow old, Live life without this fear. What would I beLiving without him here? He's so tired, And he's scared Let him know that You're there.Can You hear me? Am I getting through tonight?Can You see him? Can You make him feel all right? If You can hear me Let me take his place some how.

See, he's not just anyone, he's my son.Can You hear me? Am I getting through tonight? Can You see him? Can You make him feel all right? If You can hear me Let me take his place somehow. See, he's not just anyone. Can You hear me? Can You see him? Please don't leave him, He's my son Philip.

Song is on my player at bottom. Lately I have to turn down my volume because I can not listen to it without the tears flooding.

If you have a minute read these words...and listen to the song...It says what my heart feels..and my words could never say as clearly.

From A Mom's Heart....

There are two parts of my heart. And sometimes it gets hard to keep them separate. I know many of you moms out there know what I am talking about. Another way to describe it is "trying to find that balance". One part of you is the sweet , carefree , loving, can do and be everywhere mom. The other and all too real part is the mom who is mom who feels sad, burden, loving and feels like she can fix nothing mom. I am both of these moms. And lately it is causing me to feel worn down...freaked out...like a failure...and never good at either one.
Now before you all feel like you have to tell me how much you respect me or how wonderful you think I am...that is not what this is about. This is just about some raw feelings that I have to say ..out loud to someone. And since my family lives with it daily. And really it is not safe to talk to strangers in the street. I come here.
Here...this is my place. The place I come when things are good. Things are okay. And things are sad or scary.
So back to my heart. Wanna know something. All of you who think I am strong . I think I am really weak. I have not been handling things very well. I have been worrying, and stressing, no sleeping, not eating and plain sad some days. Not everyday but more often the closer we get to surgery. Instead of feeling in control ...I feel like I am white knuckle every step of my life.
One part is me LOVES to come and post about the PINK. We laugh and we joke and we make fun happy memories. But they seem clouded..with THIS,
The thing is.I need to find a peace. A inner peace. I am depending on God. I lay awake at night and pray to God. I know that God has never let Philip down. On my worse days God has always lifted my heart and helped Philip. Yet I am not at peace. I hear the words to depend on God. And I think I am. Yet I am scared ...a deep scared.
If you asked me what I am scared of..I would have to really think before I answered. I think what scares me most is Philip hurting. I love Philip more then anyone person should love someone . From the minute I saw him I promised to always take care of him. And now I can do NOTHING to help him. I watch him hurt. I watch him suffer. I watch the seizures. I have watched him be wheeled off to surgery for 18 brain operations...I have watched him scream in pain...on and on..and there I am ..his mom..standing there..yes I support him...yes I love him...but I feel helpless.
Last night things reached a really bad point. Philip is in so much pain. The process of getting ready for this surgery is almost cruel. But it is needed. There is NO way around it. Like so many things in Philip's life he just has to do it. Well last night he was at a point where he had just had enough. I was sick from my treatment. Reed needed help picking out classes for high school. Emily was being a preteen girl. Cole was being spiderman. Jim was NOT doing the dishes. And Philip blew up and said he was NOT going to do the surgery. Well he has to do it. And so me being the mom I am..I tell him he has to do it..which he knows. He goes into a very emotional out burst and tells me I do not understand. And you know what he is right. But he does not understand how hard it is for me to watch him suffer too. It was just hard..sad...a little bit ugly..and a lot hurtful.
The end of the conversation Philip said something I will never forget.
He looked at me and with his lip quivering said..My future does not look to good mom.
Dear God..Please help me.. help my son...

Here We Go Again..

I know most of you are thinking what in the world is she talking about now..I am so glad you asked. We have a serious issue here...yes I know in the big scheme of what is going on in our life this may not seem serious...but if you take a minute to read THIS and THAT you will know there was a serious problem until WOO HOO.
So you would think problem solved. And for a while it was. I mean as long as I had my PINK all was fine. Cause it is all about me. I started to take baths again. Ha. And I had my hidden . Emily started keeping hers in the bathroom . And peace was found once again. Until now...
I noticed the other day that Reed who is 15 and is in ripe puberty and well for lack of a nicer way to say this can smell like ..oh never mind...you moms of boys know. well all of the sudden he started smelling kind of good. I was impressed. Laying in bed yesterday he walked by me ...and...UH OH..I think we have a problem. He does not only smell good he smells PINK. My eyes got big. I giggled and I closed my mouth tight. Which btw is very hard for me.
Then it happened. Emily walked by him. She stopped and she sniffed him. I held my breathe and well it happened. She screams. REED you are using my PINK. How dare you use my PINK. I can not believe you are using my PINK. Then she says...and I quote..you have been taking very long showers..you better not being doing anything bad with my PINK. Please someone help me. Do not judge me..I have teenagers and they say things..
Poor Emily..she has gone back to hiding her PINK. I have always hidden mine. Reed now has to use manly body wash.
And it is a good thing because we would hate for Reed to turn into this...

Quick Reminder

Most of you know Philip is having a operation in a few weeks.

We are having a online party where Brandy is donating ALL her commissions towards Philip's medical fund.

Take a second and look at this wonderful product. I LOVE the way it smells.

Visit Here Click My Events on the side by Brandy's picture. On calender you will see Philip name Click it and shop event.

What a perfect way to spoil yourself and at the same time support Philip.

Please know that while we appreciate you visiting Philip's online party...your support and prayers are what we need most. We appreciate each of you.

Here are the full details of the Party from Brandy

Philip's Story..Part Six

If you are new to my blog ..

Take a minute to read from the start of Philip's story. I hope you will enjoy watching what miracle God has shown in Philip's life before he was even born.

Part one, Part Two , Part three, Part Four, Part Five.

I have had so many memories come back to me while doing the first few parts of Philip's story. Thank you all for taking the time to read about Philip and his brave battle to live. I promise you as you continue to read you will see what a miracle GOD has worked in his life. The simple fact of over 17 brain operations and strokes and shunts and infections spending months in the hospital is a story within itself. But I think that is only the outer cover. Deep down the real story is how God showed us his mercy and gentle touch time and time again.
From Part Five..
I called the DR and said Philip is sick. He started to tell me this and that. He said I can see him on Monday. I said NO. I said He is really sick and either you will see him now or I will find a new DR. He said take him to the ER and I will have him checked out. And then he said but you know babies spit up ...

Off to the hops ital I went thinking we would be back home in a matter of a few hours. Little did I know our lives would change forever. Thinking back ..I think that is when everything changed. I am glad we did not know. In this "pulling back the band aide slowly was less painful".
When we got to the ER the on call DR took one look at Philip and said to bring him straight back to a room. The first problem was he was very dehydrated. He would need a IV. I can remember them having me leave the room and me standing outside and hearing my little 3 week old baby scream and cry as they tried to find a vein for a IV. Finally they came and got me and I felt so relived that at least that was done. Only to find out they could not find a vein. The reason I think that stands out in my mind is..I was shocked that it had not worked ...and now I look back and sort of have to laugh at myself that I was so naive back then...like I said. Thank Goodness I did not know how complicated even the little things could turn out to me. So they called in a NICU nurse and sent me out again. I stood in the hallway and listened again as he screamed. I felt like my whole world was falling apart. My sweet baby was screaming to the top of his lungs and here I was his mom standing in the hall.
They called me back in to Philip having a IV in his head. Thinking back I can remember being shocked that they did that to him. His perfect little head all bandaged up with tape and tubes. Funny how a few days later I learned to love the IV's in the head.
Finally Jim showed up to me being a mess and his baby wheeled down to ultrasound. The DR thought Philip had a issue with his stomach called Pyloric Stenosis. The Dr sat down with Jim and I and explained that Philip would need surgery. Pure panic set in. Surgery . Philip needed surgery. Please God no. I could not imagine Philip being so small and needing surgery. Little did I know.
The ultrasound was negative. So they did a xray. The xray was clear. They looked at his heart. It was clear. They looked at every part of his body and everything came back clear. So why was my 3 week old baby boy sick , throwing up non stop and now was lethargic?
Philip was admitted to the regular peds floor. I stayed with him and watched him get more sick each day. No matter what test they did they could not find anything wrong with Philip. One night after a week inpatient there was a new Dr on call. The DR called Jim out of the room and told him he wanted to speak to him. Jim came back and told me that this on call pediterican had asked Jim about my prenatal history. When he found out I had 3 MC before Philip. He felt like I was just emotional...had some Post partum depression . He explained to Jim that since I had 3 mc that maybe I just was extra hormonal and that I just did not get it that babies slept alot and threw up..
Yet an hour later based on some "odd" blood work they moved Philip to the PICU and put him on monitors. They came in and told me we were being air flight to the out of town children's hospital called Arnold Palmer. When I asked why and to speak to the "doctor" he had left the hospital..They told me the Social Worker would be in to talk with me..and they had called Jim back to the hospital to be with us until we were ready to leave. I had no idea how much our lives were about to change. My sweet little baby boy.

Wordless Wednesday ..Almost

Disclaimer....Okay No one was hurt in me being selfish and taking a picture to show on my blog before I yanked my child down.

Do you see what I see?

We bought this big giant kitty thingy for the kittens..which they never even go near. So I had it set aside to take back..

I walk in and see Cole sitting up high watching Spider man like it is no big deal. Do I need to mention how high up he was?

Guess what...the kitty tower went back the same day...

And yes Jim I did take a picture before I took him down..you know I needed to get one for my blog..I am sure you can understand that..right? Oh..well I know the blogger moms do..Right? Someone back me up here...lol

What's Going On ?

I wanted to give a quick update about what is going on here...

I saw the surgeon yesterday. He was very nice and spent a lot of time with me. We looked over my mammogram and the ultrasounds and the MRI. It was clear on each test there is a mass there and as the DR said it is not suppose to be there. So he explained that where it is makes it hard to get to...it is behind my nipple..The Dr said that since it is hard to get to that he only wants to get to it once. So instead of a biopsy he wants to remove the whole mass and the surrounding tissue .He said that we would not know anything until he has it under the microscope. He also said that he would need to do a wire guided procedure and then take me to the OR. So we are working on getting this planned. He said because of the location close to the nipple area and the extra nerve endings it would be a painful procedure. So we are going to try to plan according to Philip's operation with this in mind. It is nice to have such a nice DR to be involved with helping me decided on what plan of action to take. Makes hard decisions easier.

Philip is having such a hard time. I am not sure I can even explain just how hard it is to watch him suffer . He really is suffering. And I can do nothing to help him. I know I have said this so many times but as a mom I feel hopeless. I want to pick him up and run with him. Run far away and never come back. If it would fix this I would be gone in a heartbeat. But reality is what it is and right now it kind of sucks.
Philip is losing function in his left hand by the day. I think it was hard for Jim to see that he had to help Philip get his shoes on this weekend. Not to mention I am sure it is so hard for Philip. The whole issue is just harder since he has no use out of his right hand.
I am trusting in God that he knows best. And at the same time I am begging God to please not let Philip lose function in his left side also. It has been so hard to watch him struggle with the right side. I just feel like it is so hard and painful to watch the left side. You know night time is the worse..I lay in bed and try to figure out what we can do to fix this...NOTHING.

EXCEPT PRAY .

So that is what I am going to do..PRAY.

Will you please join me..please pray. I just do not know what is going to happen.

Just a reminder...Philip's Online Benefit Party For His Operation

Just some thoughts

Many of you have noticed I have not blogged in a few days. And most of you know that means I am having a hard time. I am in a funk. And while most of you would say that is to be expected...I just hate feeling this way. I feel like I need to snap out of it...get a grip and gain some control. But no matter what it is not happening.
I am leaning on God. I know he is the only thing that can make me feel better. I know that he is the only one in control. And I know he has never let me down. He had held our family close as we have held Philip close. Even on my darkest days I know God was there with our family. So with me knowing all this...I still just can not seem to let go of this dread.
These past few days I have felt such support in my blog. The support of my regular blog family is as wonderful and supportive as always, thank you. The new followers...thank you so much for taking time to get to know me and our family. I have to warn you ..we are a mess...lol. Some days we are up and some days we are down....but we always are filled with love and faith.

A Very Special Thank You

Can you think back to that one very special teacher in your life that made a difference? The one who maybe took a little extra time to make sure you knew they cared? Or was just a wonderful teacher that touched your life?
Well Philip has had a teacher that has done all this and more. His name is Chris Bryans. He has been Philip's teacher for years and a friend to our family. Long ago I knew that there was something different about Mr. Bryans. Not only was he a wonderful teacher but a wonderful Godly man.
I can not tell you the times he has called the house to check on Philip. Or sent me emails to make sure he was okay. Tutored him all summer so he could get his credits in school. Picked him up and took him to a show to meet a very special Pearl Harbor Veteran . Then when Philip was about to go into the hospital for a serious operation this brave Pearl Harbor Veteran called Philip to wish his well. Because Mr. Bryans had told him about Philip's medical issues.
He even took Philip to interview one of the last remaining Pearl Harbor Vets for his final exams. What a wonderful blessing that was.
He also drove a group of teenage kids from school to come visit Philip in ICU to visit Philip. And has offered to do the same for this operation.
Mr. Bryans has always told me that if I ever needed anything to just give him a call. I think he may not do that again. Ha. A few months ago I got to thinking about Philip's birthday and what would make it special. Philip has always had a special respect for Bob Dole. Every time there was a book report in history that was due he would write it on Bob Dole. He added Bob Dole to his myspace. One day he told me a bunch of facts about Bob Dole. The one that stood out was...Bob Dole has little or no use out of one of his hands. He told me how Bob Dole would hold a pen in his weak hand so he would not have to shake hands with that hand. He also told me that Bob Dole reminded him that having only one hand did not mean you could not do something with your life.
As the years went on we would joke with Philip about Bob Dole and his Viagra commercials. Philip would just laugh and then go into great detail about how wonderful Bob Dole is.
So I called Mr. Bryans and asked him if we would help me get a book signed for Philip from Bob Dole. Let me tell you..if you want a job done..just ask Mr. Bryans.
A short time time later Mr. Bryans calls and tells me he has the book.
Yesterday Philip was surprised and honored to have a signed book from someone he so admires. Mr. Bob Dole.

Dear Philip,
You are a young man of courage and convictions.
Thank You,
Bob Dole

Tuesday's Tribute..It's Time To Give Back

This title says the story of Spirit Jumpers .

Not long ago I met a wonderful lady name Meaghan . From our first online conversation I felt such a bond with Meaghan . She offered me wonderful support and advice. And she offered me her friendship.

Then one day I got a email from Meaghan asking me if it would be okay if she signed me and my son Philip up for Spirit Jumpers.
I told her yes and sort of forgot about it. That is until I went to our mailbox. each day it seems there is a card and even a few small homemade gifts have come. What a surprise and sweet blessing.
I can not explain to you what a blessing Meaghan and Spirit Jumpers has been to Philip and myself. Thank you to everyone who is involved in making Spirit Jumpers such a wonderful organization.
And please keep Meaghan in your prayers. She is in the hospital recovering from having her kidney removed. What a inspiration she is for me and all of us fighting cancer. She is proof that we can beat this ugly beast called cancer.

Online Party Reminder

Most of you know that Philip is having a major operation in a few weeks. I posted the details HERE. Please take a minute to read the details of his surgery so you will know just how important prayers are right now for Philip.
A few weeks ago I met Brandy online and found out what a wonderful lady she is. She sent me a product that she sells to try out and I am hooked. It is my favorite thing in my house right now. It could become my new addiction.
Our family has been offered a very special opportunity by Brandy. Please read her message below for the details.
If any of my followers are lead to post this or link this on their blog I would appreciate it. As always thank you for praying for Philip and our family.
_______________________________________________________
In everything give thanks; for this is God's will for you in Christ Jesus." 1 Thessalonians 5:18" I have been so blessed to have come across Amy in my blog readings. We have never met personally however, given that we are all children of a mighty God, I feel some closeness to her and her family. I pray daily for each and every one of them and their daily struggles. Amy and I have gotten together and are very excited about doing this SCENTSY benefit party for Phillip. Some of you may ask "What is Scentsy?"Well here is your answer - Scentsy Wickless Candles are highly scented bars of wax that melt at a very low temperature over a 25 watt light bulb in exclusive electric warmers. Becasue they use no open flame like a standard scented candle, they pose no danger to children, pets, or property when used properly. Scentsy candles are leadless, wickless, flameless, and smokeless, and are available in over 80 exclusive scents. Please see my website(www.scentsy.com/bpainter) for more details and to place an order. You can also find my email and cell phone number in case you have ANY questions at all. If you are interested in hosting a party yourself or becoming a consultant, I would love to talk to you!To place an order that will benefit the Briggs Family, visit my website (www.scentsy.com/bpainter) and click MY EVENT. You will then see Philip Briggs Benefit. Click on Philip's Name and your order will go toward this benefit. Once you have placed your order, you can pay with a credit card and have it shipped directly to you. Amy and I discussed setting this party up to end so the products should be delivered in time for Mother's day. I will be donating back all of my commissions on each and every sale for the run of this party.Please feel free to contact me for any questions/concerns!!! Thanks so much to you all and May God Bless You!!!Brandy Painter_________________________________________________________________________________________________

I am so excited to invite all of you to Philip's online Medical Fundraising Party. I wish we could all get together and hang out for a "real" party. Maybe one day.
I hope you will take a minute to go over and look at Brandy's site. I promise you not be disappointed.

And most important..what we need most is prayers.

Guest Blogger..

I had the honor of being a guest blogger over at Jamie's Blog..

Go visit her blog and come back and tell me what you think of my wild crazy yet wonderful story ...

She Is Doing It Again..Woo Hoo

Yep...and if you want to join you better hurry..cause she is known for a great swap and it fills up fast.
I am really excited to be participating in Mamarazzi's Favorite Things Swap.

Philip Update

I would love to give a good update but I do not have one. This are bad. In fact things are worse then I thought they would be. The weaning off this medication is awful for him. He is in a lot of pain, sick and having seizures and awful cluster headaches.

I do not have the words or energy to explain the defeat I am feeling right now with all of this. I am feeling the blunt of the issues with Philip. While I know in my heart he can not help it and is just sick...it is taking it toll on me. My patients is short and frustrated is high..but my faith is strong...I am just ....well I bet most of you know.

I pray that Philip has a better day. He is going through so much right now. My heart aches for him. I just so would love for him to just be happy, healthy and feel whole. Is that so much to ask for? I will not ask..I will pray for it. Maybe you will join me..

Few last details..

Some of you have asked about Philip's birthday. Yes it is this weekend. April 19th. And for those who asked..here is his contact info..
Philip Briggs
133 Terry Street
Indian Harbour Beach Fl
32937

His operation is still planned in a few weeks..details here..
Please do not forget to check out Philip's online party..all proceeds go to Philip's medical fund..

Last ..if you would like to post about Philip's party on your blog...that would be great..or even put the button for it on your blog roll..I have the code..

Oh I lied...Last but most important...Thank you for being so wonderful to support our family with your prayers.

PET update

As most know I got a call to go in and see my new oncologist. This would be my first appt with him since my wonderful Dr. D left the practice. I must admit I was very disappointed that I could not still see DR. D but due to a contract clause she has with the old practice ( the one I am still with) she can not see any of her old patients for 2 years.
The new Dr was very nice and spent a lot of time with me. I felt comfortable talking with him and even joked that he was not as bad as I had worried he would be. About the time I was pretty darn sure I would be feeling good with him as my DR he said I hate to tell you this but I am also leaving the practice as of next month.
I just am pretty upset and discouraged about finding the right oncologist now in a different practice. It is such a important decision. And not one that should be taken lightly but also needs to be done fast.

The DR was very concerned about the auto immune issues. Due to some titers with very high numbers he wants me to see a out of town specialist. There are two he recommended. The oncologist office is working on getting the authorizations and medical records for both. Then we will decide which to see. Insurance and appt dates will help decide which Dr to see.

Okay my PET...

My neck did light up but looked "somewhat " better. Stable was not a word that was used YET.
The nodules on my chest wall that did show up originally on the Chest CT and then MRI did NOT show up on the first PET back in Jan. They DID show up this time on the PET done last week. That is a concern.
The breast mass that showed up on the mammogram and then the follow up Ultrasound , then the full MRI did NOT show up on the PET back in Jan . They DID show up this time on the PET done last week. This is a concern.

The Dr called me in to speak to me about seeing a surgeon They have started some additional testing and have me doing some follow up scans while I wait to see the new surgeon.

One thing they want to have done is the MRI so they can compare the sizes. They can not do that on the PET because this is the first PET the two places showed up on..so they will re scan on the MRI and chest CT to compare sizes.

So there is a lot to be done in the following weeks.

I hope this is clear...it is still confusing to me somedays...well most days. I take it one day and one test at a time.

Philip's Story..Part Five

If you are new to my blog ..

Take a minute to read from the start of Philip's story. I hope you will enjoy watching what miracle God has shown in Philip's life before he was even born.

Part one, Part Two , Part three, Part Four.

One thing that has surprised me while doing these blog stories in the things I had forgotten and the things I had not . It is funny how the mind works. I guess a lot of it is what I would call protective mode. But sometimes that can be a bad thing. When you depend too much on that and then something happens..it can hurt even worse.

I had a bitter sweet moment last week . I had my computer open and Jim my DH was reading my blog. All of the sudden he got this look on his face and he got choked up. He said..I had forgotten these few weeks when Philip was not sick and he shut the computer. Jim looked really sad. It surprised me that he was sad reading it vs happy. But then the more I thought about it. I do not think he was sad...I think it is just hard to see where we were and how thing were and could of been for Philip..and how hard they are right now. It is a part of his life that is bitter sweet. I miss those days....but I am sure glad we have these days with Philip. As I say daily. We are so very blessed.

Earlier in this post I said how it was odd about remember things. I can remember the first time Philip got sick. He threw up on my birthday. We were all dressed and ready to go . He got really sick and no matter what I did he could not keep any of his breast milk down that night.

I can remember it was a really rough night and he was just really not happy.

Thinking back it makes me sad to think he was in pain and I did not know it. I did call the DR like all new moms do and they gave me the pep talk that they give all new moms.

This is a night that really stands out in my mind. This night I stayed at my friend Jills's House. We both had babies the same age . Our DH went night fishing and we decided to do a sleep over. Jill may not remember this but Philip threw up again and was up crying for hours that night. Jill rocked him for hrs so I could sleep. Something that stands out in my mind is..she spent forever trying different blankets to wrap him in. She thought maybe if he was swaddled he would feel better. For some reason this many years later that sticks in my mind..that something was so wrong and all I thought was ...a swaddle would fix it.

The next day I took Philip to the pediatrician and explained to him what was going on. I was told Philip has a virus and to try to give him some pedilite and some gas drops. I left the Dr office feeling sort of like a bad mom because here was my 2 week old baby who was already sick. We moms blame ourselves, don't we.

So as the days went on Philip continued to get worse and no matter what I did he did not get well. Off to the DR we went and this time I was told he still had a virus but he also had reflux. So I was told the things to do to help with that. I did made sure I did each of them.

Two days later I took Cole to Sears to look for Jim his first Fathers Day Gift. Philip threw up the whole time and screamed the whole time we were gone. The thing that was odd to me was..it was not a unhappy spoiled baby cry it was a high pictched screaming cry. I left in tears and went home.

A moment I will never forget. I had Philip laying on my bed and I was putting away clean laundry. All of the sudden he started to scream and his stomache did that heaving it does when you know they are going to throw up..and without thinking I moved to the side and he prtojectle throw up so hard it hit the wall across the room.

That minute I became a new mom. I called the DR and said Philip is sick. He started to tell me this and that. He said I can see him on Monday. I said NO. I said He is really sick and either you will see him now or I will find a new DR. He said take him to the ER and I will have him checked out. And then he said but you know babies spit up ...

My next entry will start the hospital post...

Wordless Wednesday ( Almost)

This is what I miss with Philip...To hold him and rock him and tell him it all will be okay. That he will be okay...
God knows my heart . I tell him often. I pray Philip will have a better day today.

FIX SOMETHING?

This is going to be a blunt post. Today is not a great day and I just do not have the energy to fake it. The reason I say that is..some days that is all I have left in me...my Fake it till you Make it attitude..and know what...it works. But not today.
As many of you know last night I had a hard night.. So many of you rallied around me and lifted me up in prayer and offered sweet words of support. Thank you so much. I swear sometimes that is the best medicine.

I know what I need is to lean on and trust God to get us through all this. And my goodness he has not ever let us down before. He has lifted us up and given us blessing that we do not deserve.

So many people say oh my goodness you have been through so much and sometimes people have been insensitive and said ..wow you have such terrible luck ( Hate that saying more then you can ever imagine ) But if you really stop and think about it...yes we have been given a lot to deal with...but in truth that is a blessing. Because trust me there were days I was sure I would be leaving the hospital without Philip. I have been told many times he would not live through the night. So in truth nights like last night are a blessing. I have prayed, begged and yes on occasion even tried to bargain with God to just let Philip live and I would take care of him and love him ..no matter what. And I have and I do and I LOVE it . And in case any of you have a doubt..I love Philip more then my own life. He is my biggest and best blessing.
With all that being said..there is a reality. And if I am being blunt reality sucks. I am just tired. I am worn out. I am frustrated. I am down and I am sad. Part of me feels like I should not post those feelings. But I know that many of you know that I am feeling that way. I also feel guilty thinking and even worse saying these words because it makes me sound like I do not appreciate the blessings we have. I know there are many moms out there who would do anything to still have their babies with them and fight for them. I hurt for them when I read their stories are have met them along the way in hospitals when we were there.
The truth is this is not so much about Philip..or my illness...or Jim's job...really it is not about anything..it is about everything.
I just want to fix things for Philip. One time for one day. How in the world can I be his mommy and not fix things. And maybe part of this is..I can not hold him in my lap or rock him..or buy him a batman to fix this. He is a young man with dreams and I can not seem to help him with the simplest of things...like living pain free..or being able to feel secure in knowing he will not lose the only function he has left...or drive a car...or..live through the next few months. I want and need to FIX something. He is hurting and miserable. And I am getting the BLUNT of it. I know and I understand why..but it is hard and can hurt.
It seems that I feel like a dumping ground for things I can NOT fix. I can NOT snap out of things and make myself well..or make my treatments go faster. Can not make my PET clear. I can NOT make things go smoother here at home. I can NOT fix Jim's job worries. I can NOT say seem to say anything to make him or me and anyone feel better. The list could go on and on..
But really I think I am just tired and stressed. I feel pretty alone here at home. Jim is really focused on his job worries. He has been tired and worn out too. And without sounding harsh..his way of dealing with things is to just come home..eat ...and go to bed. He has been having headaches I am sure from stress so he has been going to bed early.
For me...I stay up and worry. I do my treatments. I go to my dr appts. I try to fake it and make it. I think this is going no where good.
You know what..I think I need to delete..but I think I will post...I would love to wrap this up in some upbeat way...but really I just do not have it in me.
I am going to work on my fake it and make it plan.
For those of you new to my blog..I swear I am not always such a downer. I have some great days...Really I do.

If I Ever Had A Doubt...

I just do not know what to say. I posted in in the middle of the night...and within minutes I had comments filled with love hope and prayers. I log on and within a few hours I have almost 20 people who took time out from their life to care enough about me to reach out to me.
I know I say thank you often..and I mean it. But thank you does not say it all. Do you have any idea how it makes me feel to know that anytime day or night there is someone who is around who cares ..and will lift me up in prayer ? What a blessing that is to me in my life. I am so very blessed by each of you. Thank you so much.
What a lesson this is for me and maybe each of you. I know now that a few kind words and reaching out can mean so much to someone. I plan to pay this kindness forward.
God is Good and I am Blessed.

Prayers and Peace..Needed.

Just have to be honest...Tonight is a awful night with Philip. In fact it is so bad that I feel overwhelmed and a so worn out. I will not even pretend to think I know how bad he is feeling. Or how hard weaning off the meds is for him. And I hate to even let myself think about the emotional burden and hurt he feels over his stroke and now the lose of function on his left side. But I just have a lot of feelings also..and one of them is...just down right frustration.
Please pray for patients and peace for me tonight. Philip is having a very hard night . It is wearing on our whole family tonight. While we understand this is a hard time..it is just hard right now. He is extremely unhappy and is making sure everyone knows it and is feeling the same way.
Tomorrow will be a better day OR I will lock myself in the bathroom. But I will bring my computer..so you will all know I am locked in the bathroom. See I have a plan ...

If you are new to my blog or Philip's medical issues. Here is a post with the main details..

Have you ?

Have you met Meaghan? If not you are missing out . I am so honored that Meaghan asked me to share my story on her blog. It was a wonderful way to share my whole Cancer story from diagnosis and not treatment. I am looking forward to the day when I can be invited back soon and share the news on her blog that I am cancer free. One day at a time..

Thanks Meaghan. Like I said ..if you have not met Meaghan...you are missing out. She is a inspiration for myself and so many other ladies like me.

Let me know if you read the story and what you think.

Quick Philip Update

Long night for Philip...I am just going with faith that today will be better. He has had his morning meds and resting. WE have a lot of appt for him this week. I also wanted to share that he had a talk with his Physical therapist yesterday. She has been such a wonderful part of Philip;s life. She started working with Philip when he was 3 years old and she was still in PT school. She has been with us through everything. Philip has not been able to have PT lately due to his medical issues and the fact that there are issues with the spinal cord. I think it really did him good to talk with her. We both miss her a lot.
I have gotten some emails about what wanting details about Philip's upcoming operation...
Here are two post I have done about Philip in the last couple of days..with details..
Important Medical Post For Philip
Party to Help Philip

And for those of you who are new to my blog..I have been doing some post called Philip's Story . This link will take you to all 4 I have done so far. I plan to add part five soon.


I know I say this often but not often enough. Our family is so blessed to have each pray and care so much for Philip. I feel the prayers and support daily.
Thank You.

Not Me Monday

I pray for peace for MckMama during this very difficult time Can not wait to hear the wonderful news that sweet Stellan is home and healthy.Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

Earlier this week my sweet innocent son did NOT back against me and announce very loud to a workman at our house that his mommy had jello boobies. I so was NOT in shock as Chad the workman at our house laughed so hard he had to leave the room. And I am sure Chad was NOT telling Billy the other worker the story when he walked out and they were both laughing at me..oh I mean my jello boobies.

I then did NOT do a full feel up of myself with my VS bra on to see just how jello my boobies are..

Reed my adorable 15 year old did NOT say to me this morning...Mom where is the mans soap for the shower I can not smell like a girl. And I did NOT say oh Reed who is the man that needs the Manly soap. Ha. How can my sweet Reed be a man..He is my Reedy. ( He hates that name almost as much as I love him)

Cole did NOT forget that the eggs we dyed were real and started doing some wild juggle trick with them. Do I need to say more?


Last but maybe the best...I did NOT send a very suggestive email to my DH with wonderful sweet loving details. And then I did NOT realize that I sent the emails to his dad ..my FIL..by accident. They have the same name and I clicked the wrong James.

I am NOT freaking out that I can not figure out how to break into his computer and delete the email.

Can someone please lie to me and tell me this is NOT that big of a deal...HUH?

What A Beautiful Day..Happy Easter

Happy Easter....





This morning I had the most wonderful blessing. I went to Sunrise service on the beach at the top of our street. Standing at the beach I could not help but think of all the blessings in my life. There I am standing at the beach with thousands of other people celebrating the wonderful news that He Has Risen. How special that a group of people from all different faiths can gather at a place that in itself should prove to any doubted there is a GOD and pray for one common reason..To Celebrate Easter.
Sundays are a hard day for me and to be honest I really did not want to get up for sunrise service. But it is something that Emily and I love to do and I feel like I have disappointed her way too much these past few months. So when that alarm went off...off we went. Then I came home and slept till noon . My prayer for today is to feel well enough to enjoy Easter with our family. I have to say our last few holidays have been really hard with my surgeries and treatments.
I am so happy I went to the service. We only got to stay for half of it. But it felt really good that we got to even go. It was just beautiful at the beach. I watched in awe as God painted the skies with beautiful reminders of his beauty. I wanted share some pictures I took with my cell phone.

Party to help Philip...

Most of you know that Philip is having a major operating in a few weeks. I posted the details HERE. Please take a minute to read the details of his surgery so you will know just how important prayers are right now for Philip.
A few weeks ago I met Brandy online and found out what a wonderful lady she is. She sent me a product that she sells to try out and I am hooked. It is my favorite thing in my house right now. It could become my new addiction.
Our family has been offered a very special opportunity by Brandy. Please read her message below for the details.
If any of my followers are lead to post this or link this on their blog I would appreciate it. As always thank you for praying for Philip and our family.
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In everything give thanks; for this is God's will for you in Christ Jesus." 1 Thessalonians 5:18" I have been so blessed to have come across Amy in my blog readings. We have never met personally however, given that we are all children of a mighty God, I feel some closeness to her and her family. I pray daily for each and every one of them and their daily struggles. Amy and I have gotten together and are very excited about doing this SCENTSY benefit party for Phillip. Some of you may ask "What is Scentsy?"Well here is your answer - Scentsy Wickless Candles are highly scented bars of wax that melt at a very low temperature over a 25 watt light bulb in exclusive electric warmers. Becasue they use no open flame like a standard scented candle, they pose no danger to children, pets, or property when used properly. Scentsy candles are leadless, wickless, flameless, and smokeless, and are available in over 80 exclusive scents. Please see my website(www.scentsy.com/bpainter) for more details and to place an order. You can also find my email and cell phone number in case you have ANY questions at all. If you are interested in hosting a party yourself or becoming a consultant, I would love to talk to you!To place an order that will benefit the Briggs Family, visit my website (www.scentsy.com/bpainter) and click MY EVENT. You will then see Philip Briggs Benefit. Click on Philip's Name and your order will go toward this benefit. Once you have placed your order, you can pay with a credit card and have it shipped directly to you. Amy and I discussed setting this party up to end so the products should be delivered in time for Mother's day. I will be donating back all of my commissions on each and every sale for the run of this party.Please feel free to contact me for any questions/concerns!!! Thanks so much to you all and May God Bless You!!!Brandy Painter_________________________________________________________________________________________________

I am so excited to invite all of you to Philip's online Medical Fundraising Party. I wish we could all get together and hang out for a "real" party. Maybe one day.
I hope you will take a minute to go over and look at Brandy's site. I promise you not be disappointed.

And most important..what we need most is prayers.

Our Long Road Ahead....Important Medical Post

This is my son Philip. This picture was taken not too long ago after one of his last brain operations. Philip has had over 17 brain operations , suffered a stroke, had over 25 orthopedic operations, suffers from slit ventricle syndrome, chronic headaches, Has multiple shunts, suffers from seizures and many other medical issues. We have been blessed that with all these medical issues Philip pushes himself to live as normal of a life as possible.
One day about 8 months ago Philip started to complain of left side pain. This was something new and something VERY scary. Philip suffered a stroke on his RIGHT side in the middle of his second brain operation at 6 months old. This operation lasted 17 hours and he coded twice on the table. It was a miracle he lived. Philip has depended on his left due to the damage to his right side. The new pain in his left side was something that worried us and the Doctors.
After months of DR appt, MRI, Cat Scans, Spinal Taps, Blood Work...it was decided that he is suffering from a degenerative central nerve disorder on his left side. He has already experienced weakness and lost of function in both his left arm and left leg. With the stroke and the multiple bone and muscle operations on the right side, this has left Philip is a really difficult place. Philip also has experienced severe burning and shaking with non stop pain. He has been seeing a specialist for almost 5 months now and tried many different medications. Including some pain patches, Extended Morphine, percecott, new seizures medications to try to help with the shaking , surgical epidural Morphone bolus directly into the spine. The list goes on and on.
A option we had considered was a deep brain stimulator. But after finding that Philip has a syrnix which is a problem with his fluid by his brain and cord that will require surgery if it grows in..the Dr felt this would not be a good option. It was also decided Philip's nerves in the brain were noted on the EEG to be slower on the Right side and that means with seizures he would not be a good candidate for this procedure.
So here we are months later and decisions have been made. The DR has spoken to the Neuro and the Neuro surgeon and the decision was made to do the more complex operation. The risk associated with this operation are many. But after many appt, alot of research, tons of 2 am sleepless nights and non stop prayer. The answer seems that this is what is the best chance for Philip.
A few medical facts....Philip will be having a operation in a few weeks. He will be having a machine and a pump put in. The pump and machine will go in his stomach. They will have a Cather and wires worked through his spinal cord and directed into his brain.
A few thing makes this more complex for Philip. The pump and machine In the stomach....Philip has had major abdominal surgery nuemours times in his life. He now has a shunt that runs down into his left side and drains into his stomach. The Cather of that shunt is on the left side. He has a large area of scar tissue on the right side due to a previous shunt on the right side that got infected and had to removed in a emergency operation. So there is a concern with getting the pump and machine in the stomach.
The Cather and wires in the spine. Philip has had multiple spinal operations. Including a LP shunt that was in his spine. When that shunt had to be removed the tip broke off and Philip had a pretty complex operation on his spine. So there is a concern for the pathway in the spine up to the brain. Due to this Philip will need to be woken up during the operation and asked some questions to make sure he can feel his arms and legs as they move up the spine. This is what scares Philip . The DR said Philip would need to shake his head do to the tubes and machines. I think Philip has worried most about this. I just can not imagine what is going through his mind.
A big worry is the extra fluid that the pump will put in the brain. There is a concern that the extra fluid from the meds in the pump could be too much for Philip's brain to handle. One factor that may help or hurt is he has slit ventricle syndrome and his shunt is set as high as it will go. So we will just have to see how the brain will react to the extra fluid. Only time will tell us the answer to that.
One last concern is...Philip does have shunts. When you have shunts you always have to worry about infections. Philip already has a issue with some immune due to a major shunt infection that almost killed him last year. The infection started in the shunt in the stomach and traveled into the brain. When you have a infection with a shunt you have to take out all foreign object...aka the shunt..and have a external shunt outside the body ..and weeks in the ICU. One added issue which is a BIG one is Philip has a old piece of a shunt that is stuck in scar tissue in his brain . This is embedded by the mass in the brain. The last shunt infection the DR said he was not sure Philip would survive a operation getting that shunt tube out of the brain stem area by the mass. It is embedded with blood vessels and is a very vascular area. He did tell us that IF Philip ever has a second infection we would have no choice but to remove the old shunt tube. This is the same DR that attempted to do it when he was younger. He told me that one day he might have to play miracle worker but not that day.
So by adding the extra foreign objects the risk of infection is very high .And if there was a infection it would mean everything would need to come out..even in the brain stem. In this picture of his MRI scan you can see the white line in the middle of the brain mass. This is the tip of the broken off shunt tube I am explaining about.
Due to this risk Philip will be required to be very careful with germ and his immune system.
Philip has two big appts and procedures before his operation. His operation is scheduled for May 12th. The Dr needs him to be weened off all his meds before then including some of his seizure meds. This is a long hard process for Philip and already is causing his problems. There is no way around this ...the operation can not be done with these medications in his body.
Philip will also have to wear a body back brace for 8 weeks after his operation to protect his back and spine. He will not be able to bend, lift , or turn.
Two things that are being addressed with the insurance company now...Philip is going to need some rehab to help with his weakness. This could be in patient and not local.
Philip also is going to be evaluated at a out of state hospital within the next few months. There are issues with his shunt, a brain mass with a broken off piece of shunt, seizures, reflux kidney issues that may require a transplant one day...but top of the list is the degenerative nerve disorder that is trying to rob him of his left side . We are looking at NC ( Duke) NY ( Sloan) Mayo Clinic. Medical recorded and scans are being sent to each center.
Many have asked what they can do to help. First and most important is to pray for Philip and his recovery. Without prayer we would be lost. I can not begin to tell you how much your prayers and support mean to our family.
Needless to say Philip's medical bills are far beyond what we can pay right now. With my medical issues and Jim'sjob worries. I am just so thankful we have insurance. But even with insurance our cost are far above our resources. Many of you have asked where you can send small donations to help. After praying about this and swallowing some pride. I have added a donation button to the side of my blog. Any money donated will be used for Philip medical fund only.
Once again..Please know our first need from anyone is prayer for Philip and strength for our family.