We Get It Done...

We get It Done...There have been many days that I have dropped Emily off at school and not been able to pick her up because we have been away dealing with a emergency for Philip ....There have even been times I have dropped her off and she has come home to find that I have had to leave in a emergency to a out of town hospital and be away for weeks at a time while Philip had back to back brain operations and stayed in ICU for weeks. Lately I have had days where I have not been able to drive her to school or pick her up with healing from my operations or treatments. And yet...we just do what we need to do...to get it done..

Our motto this year has been...We may not do it pretty ..But we get it done..

Last night my beautiful daughter showed what that means. She took things one day at a time..and she made it through a very hard school year...We are so proud of her .

Graduation 2009

Welcome To The World ..

Welcome to the World Jackson Gray...my nephew.

Born This Morning at 2 am to my beautiful sister and Derek. 8 pounds 14 ounces 20 inches long...isn't he beautiful..GOD IS GOOD.

Someone For You To Meet..

I wanted to introduce you to a really special lady..Sheli.

I swear she has a split personality...LOL..and I mean that in a wonderful way. She is having a really hard time right now and yet she is working hard at keeping her spirits and everyone around her high and positive. She always has a sweet word to share and a verse from the bible to back her thoughts up.

Please visit Sheli while she in on bed rest dealing with a back injury...tell her Amy B sent you to check in on her...I promise you ..you will be blessed by her as I have been.

Now as for the split personalty thing,..she has threaten me with a box cutter..she has tended to my farm on Face book and happen to post messages about herself as me on my FB..and she has told me if I flirt with her DH who happens to be a pastor on our face book farm..she will beat me with her steel cover bible..wow...Oh I forgot to mention she is on tons of pain meds...lol

Nah...you will get so much positive energy from her. And I know she could use our support and prayers..She is such a blessing in my life..But we will not tell her cause she might get a big head...LOL

Today

Today the DR will work on Philip's incisions. I must say they look wonderful. We will be having a home nurse come to the house and also a special nurse to help him with learning to get up and down without twisting his back. He is not able to twist, or bend or sit straight up for 8 weeks. I know this will be hard on him but he will do what needs to be done.

Philip has healed as much as he is going to from the operation at this stage. There is really not much left to be done but wound care, bandage changes, meds, and hard core bed rest.

I have to share that my heart is hurt. It seems that the operating has not work as well as we had hoped. I am not going to say it did not work YET. I am holding onto hope and faith. I just am not sure what is going to happen next. There are some issues associated with this but I speak with the DR today and know more. Please pray we get clear answers. It seems like in many ways we took a BIG step back. But I am holding onto the idea that sometimes you have to go backwards to get that head start running..Corny I know..but for me it works today....

Later today I am going to update on some info I have on the transfer to the other hospital. There are some hurdles that we have to get there . Both finical and medical .

I noticed this weekend that I was feeling quite anxious about everything. I usually do not have anxiety and to be honest it stinks. Can wear a person down. I logged on and spent some time reading my blog and it just reminded me that I am so not alone.

And on those days where I feel weak or worn down..there is a team of you storm heavens gates on Philip's behalf...I think the saying is true..It does take a village and I have the best...all of you..

Such A Blessing....

Tomorrow is going to be such a important day....I am going to be a New Aunt...My baby sister is going into the hospital to be induced ...he is expecting her first baby. Jackson Gray ...

I am so very excited about my nephew. Our side of the family is very small...Me, my mom, and my sister...so I am sure you can imagine this is a BIG DEAL.

The thought of being a new aunt has gotten me through some kind of dark days...and now finally he is going to be here. Not a day too soon.

So you all can just call me Aunt Amy tomorrow..lol

Updates

I come here today to just share where we are ..I know many of you pray for us daily. I would like to share with you what is going on with us so that you will know what areas to direct your prayers.

I am trying very hard to refocus my energy ..I posted here about trying to work on thinking of the positives and turning my worries and fears over to God. I am working very hard to do just that. Sometimes I have to STOP myself and say...STOP..and pray and let go of it. I will admit..It is sorta working. I am trying the faking it till I make it approach..I do well during the day when everything is busy ...it is the dark of the night...Prayer Prayer and more prayer.

Philip is just struggling. No better way to put it. His pain level is high. It is high in the incision areas which is expected. But it is still high in the left side. I will admit I am very discouraged about this. But we are still in the healing time zone. So I am holding on to faith.

He is having some sweeling issues. And also some reactions to some of the meds. So they will be working on that today. A praise is his bladder is doing better. So that is wonderful.

He is not ready to travel to the next hospital...but that is in the planning stages.

I am feeling anxious that I have not snuck in my breast operation yet...but I will..I think I will try to get it done in the next two weeks or so. It has to be done before we travel to another hospital.

Have I mentioned I am a tad of a control freak...and I am not in any type of of control. I know ..this is a test of my faith. I kind of feel like I am having a lot of testing...wonder if I will pass...

I just would like us to have a road map of when and what and how we will get this all done.

So today I am going to take the advice I bet each of you may give me..I am going to do what I can do today to get through today...and the rest will fall into place. It will right? RIGHT?

My next prayer request is a finical one. The reality is..we have had a LONG hard road medically. That is a reality. But another reality is we have a long road ahead of us with Philip's ongoing medical care and now my added in treatments.

I would appreciate any prayers you could offer us for finding a balance for the finical struggles of our everyday bills and the medical concerns.

We were blessed with our online party from Brandy...and some donations made to Philip's donation box on the sidebar. You have no idea how much it meant to us. And as I always say PRAYERS are priceless...Thank You all.

Today I will learn to do Philip's wound care..pray for me..maybe for him more..Nah..I will do a good job..not like I have not done it before.

Gosh It feels good to come here and share with all of you. What a true blessing each of you are.

And hey if you stalk..yes YOU...come on out and post..say hey..so I know you are here. It makes my day..

Warning Boy Parts talked about PG13

Since so many of you come here to support me as a mom on the harder days...I just thought you all NEEDED to know that while my days lately have been filled with many tears...they also are filled with wonderful memories like this. I laughed so hard tears rolled down my face...and they were long overdue happy tears...

Last night after a VERY long hard day...Cole sneezed really hard...he looks at me as serious as can be..and said I sneezed so hard my penis almost fell off my balls. I snapped my head around at him and said Cole Tre you can NOT say things like that. He said why not? I said because one..that is not a nice thing to say and second that can not happen.

As serious as can be..he looks at me and says..Mommy how do you know..you do NOT have a penis or balls you have Ginny..

He stares at me ..I stare at him...and tick tock..what am I to say...

Okay Cole Tre...but do not say that again. Okay mommy ..but I hope I do not sneeze again..

Ha

Working On a Better Attitude

When I look at this picture the tears roll. The very first time I saw this picture we were at a different hospital due to insurance issues. I happen to be walking from the waiting room while Philip was in the operating room and looked up and saw this picture. It said OUR CHIEF OF STAFF. It took my breathe away. I think I may have to buy one of these for my house and frame it. Not only because it is a beautiful picture but because I seem to need the daily reminder. Of course there is not a day that goes by that I do not KNOW that GOD is in complete control. But I so want to help him. I would love for him to come to me and say Amy my child..tell me what you would like me to make the outcome to be. As funny as that sounds...I really want nothing more. And yet I KNOW he knows best. I KNOW he knows my heart. I KNOW he loves Philip and I KNOW he loves me. I know this with all my heart. Yet I have this internal battle..with myself. Nothing worse then fighting with yourself. Huh?

I know I have been in a funk..or a bad way..It is not because I am depressed or sad. I am not even mad or feeling sorry for us. I am just frustrated. And I think I have let that take over somewhat. I think if I were not careful I could just bang my head against a wall. And maybe I am thinking about that more then I am thinking about praying.

I never want to come across as ungrateful for the blessings we have had with Philip. I know it seems like lately a lot of the focus has been on a hardships and the battles. And yes they have been so hard. But I need to drag my mind back to the blessings we have and will continue to have. If I let my mind go to the idea that my baby boy has had 19 brain operations, strokes, 20 plus other operations, and so many other issues...and he is still here ...it just brings me to my knees. Thank You God. There are so many parents who would do anything to have their children back and have them to take care of. I thought of so many of the families I have followed for years and have lost their babies. We are blessed . WE ARE BLESSED.

I wanted to share something with you...and I thought about this for hours last night. The first time we handed Philip off to the Dr for a brain operation after his stroke. I barely could let go. It almost felt like I really KNEW awful thing could and DID happen . I was so scared. The while time he was in the operating room I just was scared too death. Jim and I went out in the hallway to wait by the ICU Doors to talk . A man overheard our conversation and said something I will never forget.

He looked at me and said..I know you are scared. But I would do ANYTHING to be in your shoes. MY daughter drown this morning and we have NO hope. We are waiting to take her off life support. She was a year older then Philip. He said I wish we could try something...anything...to help her.

This man looked so lost and so hurt. And a hour later he walked down the hall with a few stuff animals and a social worker after signing a death certificate. He had no hope.

We still have hope. So yes I may be tired. I may feel frustrated and worn down. But we still have hope. And no matter how tired or discouraged I am..I will never ever give up..because we have Hope...

I received a beautiful card from Krissy who sent me a gift for Spirit Jumps. It was 2 pieces glasses of sea glass with the word HOPE written on them. Her card said the most perfect words. I am going to LIVE by these words. If I have to repeat them to myself everyday..all day. Thank You Krissy for the gift and the wonderful words. They may just change my outlook and help change my life...

When the world says to give up....Hope whispers..Try it one more time...

Not Many Answers...yet

I wanted to thank each of you for the wonderful support to yesterday's post . I wish I could come here with a clear answer to what is going on but I can not. But I want to share with you what I do know. That way you will know where things stand at with Philip . And I know many of you have blessed our family with prayers and with this information maybe it can help direct you what direction to pray. Without prayer I am not sure where we would be right now. I know most of you already know this... I am tired . I feel a little emotionally worn out right now. I am working really hard to clinging to my faith. And yes some days it takes works. But some days it is all I have.



After speaking with the DR yesterday and having him exam Philip we ended up with few answers and more questions. And while I know that sounds awful . But there are not easy answers. The DR has consulted anesthesia to see if there was damage done due to a traumatic incubation. Since Philip has been on a ventilator really too many times to count...100's of times and many times were for months..he does have some damage already. But these issues are new and this is what is concerning. There is a concern that he has damage to the spinal cord ..this is a big possibility due to the fact that they went into the spinal cord. And there is also a possibility that the syrnix has become bigger due to the trauma to the spinal cord. He has a syrnix in his spinal cord that is in his are that control the respiratory area..so this is a concern and will be watched very closely.

There is no one test that will say yes or no to any of these concerns. And that is frustrating. It is hard and it gets hard, real hard. There is not a tumor we can take out..and I find that even ironic to write since we can not get to the mass in the Brain stem. There is not chemo or operation or a machine..or anything that can fix anything. Today my daughter Emily took my breathe away ...she said something that shocked me. We were talking about Philip and she said...well he is NOT curable. When she said that I felt like someone knocked the air out of me. Did I know this...yes. of course I did. But to hear the words..made it real. Too real today. And to hear his little sister say that was hard to hear. And the look on her face showed how hard it was for her to know and say.





Last night my mom and I had a "talk". She was frustrated when she was asking question and I could not give the answers. And she had every right to feel that way..heck I feel that way. She said that she felt like everything we do to help Philip gets screwed up. Of course I went into mommy bear mode and let her know that the only other choice we had was to do nothing. Now my mom did nothing wrong. She was expressing what we all feel and have felt. But last night it hit me hard that we are NOT fixing anything. Even when we go to the out of state hospital..we are trying to save what we still have. I am pretty sure the damage is done. I know a stroke like his can not be reversed. I have had three Dr tell me that the left side damage is progressing..so I am fighting hard to get him somewhere fast to get some type of research program to see if figure out what is wrong and then if we can stop it. But first he has to heal from this operation.

I have many thoughts about miracles. I would like to share them with you in a separate post.

I thought I would mention how miserable he is. Today is in pain to move, throwing up, can not swallow and over all is feeling sick. I hate to see him so sick and in pain. I HATE HATE HATE not being able to fix anything for him. It takes away my very being as a mom. We are suppose to protect our babies. And from the day at 6 weeks old that I handed him over for his first brain operation..I feel like I have not been able to protect him. Wow that sounded emotional. Maybe I am emotional. Okay I am.
I guess what I am trying to say is..I wish we were FIXING something instead of always just coming in and doing something when the damage is done.

As soon as I know something more I will let you know.

Thank You all so very much.

Quick update...Prayers needed.

Today at 4 the DR is going to take a special look at Philip and read some follow up to some testing that was done today. There are some concerns that need to be addressed. His swallowing has gone from weak to really bad. He also has a very weak movement in his left leg. There is a concern for another stroke. Or a ongoing issue with the spine since it was operated on days ago. There is also extra fluid going into the brain so this could be a problem. The DR will be able to tell us more this afternoon. He is in the OR and then will be in to exam Philip and speak with us.

I will update after we speak with the Dr.

Also today is Reed's 16th birthday. I am feeling very torn as a mom today. I know it will all be okay..it just has to be. But I would like to feel a little more in control.

Ha..I went to erase the word control..because I am NOT in control..He is..GOD. But I decided to leave it. A lesson learned for me. I am NOT in control. In fact I am sure GOD laughs when us Mortals make plans.

Please pray for Philip. His pain levels is high. His emotions are very off. And this is taking a hard toll on everyone involved. I am praying for peace for everyone involved today.

Some moments before Surgery Pictures..

Before Surgery Pictures.

To be honest I am a tad worn out and emotionally worn down. I am working on a medical update but for some reason my heart is heavy and the post is just happening. But it will. ..

I thought I would go ahead and finish posting some before pictures of Philip's operation.

Here are the First Set

I am telling Philip that since there is a issue with "central line" I can find a vein..and I go to show him where I would stick him at.. Look at his face..poor kid looks a tad scared..NOT..lol

I think this was where Philip said he was going to call security..lol

This is me telling him to not call security..lol Nah..this is me telling him just how much

I love him...

I think this could be him telling Jim that I need xanax..and he may be right...

Great Giveaway..Can you Win for me?

Okay I LOVE this necklace. I was born in SC so I reallly like this necklace...so can we agree if you win..I won..lol. Fair right? When you go ...and post tell her Amy B from Our Daily Blessing sent you and we BOTH get extra points.
http://thelifetimesoftheperryfamily.blogspot.com/2009/05/mademoiselle-jewelry-giveaway.html


And the site for the necklace...http://www.mademoisellejewelry.com/home.php

This Just Says So Much...Before Surgery...

Edited to add...This is not posted because I need or want anyone to feel sorry for me..etc. This is just me keeping my journal real...that was our deal...remember?


I swore I would not come here today with any words about how hard things are with Philip and his emotions. I felt really bad last night when I thought that maybe as a mom I was wrong to share the words from Philip when he is not well.
Then again I know in my heart I did it not to hurt him..or suggest he is some awful young man. But to share with all of you the struggle we are having. I also think that many of us moms who have chronically ill children NEED to hear that we are not the only ones...who are the caretakers and the whipping post. ( If I were not so tired I would think of a nicer term )

Today is just more of a vicious circle....The more I try..the more it seems to be wrong...Feelings hurt..tears gave fallen and the headache has begun. My heart feels crushed. And that is not good for me or Philip. I think I will think with my head and try to feel less with my heart today. Just for today.

So I took some time this morning and happen to see this picture. This was before his operation. He just looks burden. And I can not help but think my sweet son is just wrapped up in some emotional and physical crisis.

I know he loves me. And I love every hair on his head.
I will forget every word he has said..because that is what us moms do...right?
What scares me is...what would happen if something awful happen and this was how things were between us ...I am not dwelling on this..but can not help but let that slip into my head when my heart seems a little fragile right now.

Then again..I know this time is not about me...it is about Philip...
I know there is detox...withdrawl...fear...panic...and neurological issues...and on top of that a major operation on many parts of his body..I just need to remind myself of that in the middle of the hurtful times. Ya'll just keep reminding me..
I just had to get the words out..because I feel like I am going to drown in them today.

Maybe I am just falling apart? Maybe I am being tested? I am digging deep ...and trying hard to hold on to my faith...It has never let me down before.

Few Pictures Before His Operation..

Thought I would share some surgery pictures and tid bits and then later today I will share a medical update. Deal? This is the morning of surgery..we look scary..huh?

I just noticed Jim has his RHCP shirt on...Gotta love a 44 year old man who still wears a band shirt..hummm

Yep I bribed him for a pre off to surgery kiss. I just adore this kid....and miss him being happy and stronger...I am so looking forward to the day he is feeling better. Emotionally, Physically and spiritually.

I know it looks like I am trying to strangle him..but I was really playing with him....

See that smile.even drug induced it makes me happy to see

I think this was after his pre meds...Ya think?

In truth while I love to see this picture and his sweet laughing smile. It does make me sad..he is hurting and scared .

I so look forward to looking back at this one day and seeing how far we have come.

But there is a little part of me that is not sure when that is going to be..

I pray soon...

Thank you for letting me share some of the pre operation pictures...I wanted you to see that while we are struggling..we still try to put a smile on our face and move forward.

I knew in My Heart...That It was Not Only Ok But...

I knew in my heart that it was not just okay but really the right thing for me to do when I posted my Harsh feelings post. I did have a few thoughts of..what if someone thinks how awful I am for sharing this so private moment...and in truth I was not so sure it was the right thing to do. But in the end I KNOW I am not the only mom who has been hurt with words that are said in anger. And I know in the medical world of us moms dealing with children who are chronically sick we might need to hear we are not alone in these moments of outburst and hurt feelings..
I also did not want to hear how awful Philip was to speak to me that way..or how I should handle it this or that way..meaning punishment etc. While it is okay for us to be upset with our children...it can bring out the mother bear in us when others judge..Right Moms?
I LOVE Philip and I can not imagine what all he has been dealing with. I know that it must be so hard for him to be growing into a young man and be so scared of what is going to happen on a daily ..sometimes hourly basis. While he did hurt my feelings...I am pretty sure that is just part of the package of being a mom...
So a big thank you for your sweet kind words and understanding. It means so much for me to be able to be myself and share my thoughts..good and bad...you all give me such support.
When I think of what I wanted form my blog when I started it...I never thought I would have even 20 people who cared enough to read and now at the blessing my blog has given me. It is what I like to call my safe soft place to land. When the world is giving me a hard time..I have my own special place to come and it is warm, sweet, kind and most of giving..you all give me your time..your energy and your thoughts and prayers. It means so much to me..I just do not know what to say ..Thank You and You all Bless me and our family daily.

I will have a medical update later tonight. Philip is struggling today with fever and some breathing issues and throwing up. Things are hard physically for him and emotionally for all of us. I sort of feel like we are in a fragile place and that is not a great feeling. Baby steps....

Harsh Words Causes Hurt Heart...

Have you ever had your feelings so hurt that you worry that you might not ever get over the hurt? And when it is someone you love so very much it seems like it is so much worse.

Today has been a really hurtful day with Philip . To be honest I am so upset I am shaking . I KNOW in my heart that Philip is just a kid who is scared and hurting. He is worn down and in pain and scared. I GET that. I feel awful that he is hurting in so many ways. And I would do anything to help fix this for him. I have tried my best from day one...always.

Today has been one of the hardest days I have had in a very long time. And I just hate feeling how I feel tonight. I am sad, hurt and a little angry with Philip. That is a hard mixture. I will admit I am really tired tonight. I have been sick this weekend and just worn out. I know that this makes everything seem worse...but in my mind..I am not sure things can get much worse.

As most of you know Philip is having a operation on Tuesday. This is a really complicated operation and was not a easy decision to make for Philip or for us as his family. The steps leading up to this operation have been long and hard...The decision was not taken lightly. In fact I have spent many sleepless nights praying and worrying about what the right answer is...

Tonight something set set Philip off...and it just got ugly mean and hurtful.

By the time he was done..He had told me that he blames Jim and I for his stroke that happen at 6 months old...he said that if we had put the shunt in at 6 weeks he would not of had the scare tissue and needed a second operation. Ouch.

Then he followed into how if I had given him the stronger medication in the beginning his arm might not of gotten so bad and he would not of needed this operation. His condition is just that a condition..not based on pain meds. There was a ISSUE where I held back some of Philip's meds because I thought he was over medicated. I still stand beside that. And watching him detox and act the way he is tonight...tells me that maybe mom did know best. But being in the frame of mind Philip was tonight...he decided that that me not giving the stronger pain meds caused his condition. And while I know this is crazy talk...I still let it hurt me..why why why..

Then he decided he would not have the operation. That if he did and he got a shunt infection he could die and that it would be my fault ..cause....well I am not sure why...but in his mind tonight...it is my fault...

Then he said that all I seem to care about is my cancer..ouch...ouch..and wow..I so shove my illness aside it is not even funny. I go and go and go until I can go no more. I do not say that as a bragging..I say that as a fact of being a mom. He said that I had no idea what it was like to be "really " sick....ouch again...while I do not want to make a big deal about the cancer..It does hurt me when it seems that it is made out to be a non issue. I mean 3 major operation..another one in weeks and treatments weekly...It has not been easy...and I resented the comments. And yet I feel foolish feeling so hurt...

I calm told him it was his decision to not have the operation BUT he would not be able to stay on the high doses of medications..because his liver and kidneys were not handling it well. I told him to think it through and to make a decision. He then went into the I would not need it if and if and if and if..if you mom had done this and not done this and could fix this and not fix that and this.AKA.. MOM is the WORSE ...

Then he comes in and says..what time is my blood work and EKG for my operation...God Please give me some calm thoughts.

Now I KNOW that this is detox...sick..nerves...scared...fear...and frustration. I get that..I know that...but deep down..my heart hurts...I hate that a line was crossed with things said..even though I know why they were said. My feelings are hurt. I ended up breaking down..crying for hours. I feel like a failure in so many areas of my life..and I just wish I could run away and give up.


I love Philip with every fiber of my heart. I have fought for him from the day I found out he was sick. I made the best decisions I knew how to make with the information I had. Do I wish I could go back and change some things..heck yes. But I did the best I could with what I had at the time..and now I do better with what I know now.

I would like to think Philip does not blame us for the stroke. But the very fact I heard him even say those words tonight..was so hurtful It shocks me..and maybe part of me thinks if he even thought it to say it when he was mad or upset...he must believe it on some part...maybe not..I hope not. Can you imagine if he did believe that...it would crush me..

Through the years...Philip has spoken to Dr and counselors..so he has had qualified people to help him with everything. But in truth...you can talk about it all you want...living it is the really hard part...

I have a feeling none of what I wrote here makes sense...I have a feeling maybe I should not even post this. It makes Philip look not so sweet and we all know he is a loving sweet young man. It makes me look like a whiny mom..and we all know...oh...we all know that maybe lately I am just that.

As a mom I am asking you to please pray for me and my heart. I am hurt..I am sad..I am scared for his operation and I will be honest to say I am a little mad with Philip. I know I need to let go of my feelings based on what was said tonight...it was a emotional outburst that I think he could not help. But it still hurt all the same..and somehow I wonder maybe if some of what he said tonight he believes...maybe he does blame us...that breaks my heart...

Please pray for Philip. I know he is just scared and frustrated. He is such a sweet loving son. And I know that he is struggling with the detox and pain. It is just so hard to watch him suffer. I wish I knew what I could do to help him. Somehow I just can not understand how this is right...

My heart needs help tonight. I sat and prayed for God to help me tonight because I feel like I am at the end of my rope...

There I said it and I think I am going to hit publish instead of delete.

Quick Prayer Request

Happy Mother's Day. I plan to come here later today to write a Mother's Day Post...but it has been a really long night. I hope you do not mind me coming here on Mother's Day asking all of you to please take a minute to pray for Philip.
Around 2 am I was up not feeling well and went to go check on Philip. I saw him laying in his bed looking "odd". I turned on the light and noticed he had gotten sick and did not wake up. So I got him up and cleaned him and his bed up. He has thrown up all night and all morning. I have spent his morning with me cleaning him up. He has thrown up from one end of my house to the other...If the dogs loved me they would take care of it for me since it is Mother's Day..Do not think gross...Gross is being chemo sick cleaning it..come on dogs...

I am so blessed I am to be able to come to my special friends and ask for prayers today when I am feeling .a little .defeated. Thank you all.

Favorite Thing Swap

Country Girl City Life Who I adore..who happen to really adore..had a favorite thing swap. I got paired up with Emma who also happens to be a mom of 4. But after seeing my package I realize we have mush more in common. I had to laugh when I opened the package. I LOVED everything in the box. The purse is something I have looked at Target twice before and not allowed myself to buy. Anyone who knows me knows black is one of my favorite colors so I LOVE the purse. I am such a flip flop gal..so the candle with flip flops will be used the minute I get a cute candle for it to go on. And umm..yes the box of goodies is already opened in the picture. The flip flops are going to the hospital with me..and also the book. I just really like everything I got. Like I said...Miss Emma and I seem to be a lot alike.

I hope she enjoys her package also. Thank you Emma.

Mother's Day Swap Package..

Cheryl hosted a Mother's Day Swap. I was blessed to be matched with Maya . I opened my box tonight and have to say that I was so excited with my gifts. Thank you so much Maya. I love them all. The frame is perfect for a picture that I have taken of Jim and I in Jamaica for my sisters wedding. And I LOVE insects. They are my new addiction. So you could not of picked anything better. The snacks and game will be perfect for the hospital next week. Once again. Thank you. I hope your package makes it in time and you enjoy your goodies.

Great Giveaway..

This is a WOW of a Giveaway...http://www.5minutesformom.com/6032/mothers-day-giveaway-2009/

Long Day..Short Update

I have a lot of things I want to update concerning Philip's appt yesterday and today. I am sure you will all understand if I wait till tomorrow to post the update.

I am not feeling too good tonight. I just have not rebounded this week from last weeks treatment. I have felt exhausted and sick all week. I think everything is just catching up with me. Tomorrow is Thursday which is treatment day. So I am going to try to take some nausea meds tonight and get some rest.

In truth I also need time to adjust to some of the news . I feel like I am a tad "off". About the time I think I have come to terms with some of the decisions and issues..I let myself think too much about it..or I realise something I did not think about..and all of the sudden I feel far from a place I would call ..acceptance. Baby steps...I guess.

Today has been a day that has proven to me once again that I can not get through all this alone. I am going to cling to my faith and hold on tight. Because I do not want to feel bitter or angry or sad. I want to feel faith , love and some peace.

I wanted to share something so sweet with each of you. Many of you know that Philip ( aka Duppy to Cole ) and Cole are so very close..it just makes me melt. Today I did not have anyone to watch Cole for a DR appt Philip had. So when he woke up I asked him if he wanted to go and take Philip to the DR. He said with a big smile. Yes I do. I will hold his hand and make sure he is okay. And let me share he stayed right by Philip's side. In fact when the DR came in to exam Philip..he said Cole..let me see Philip's hand for a second and then you can have it back. Melts my heart. Gosh I love their relationship. So sweet and so innocent.

I wanted to share a few cute pictures I snapped with my phone. How sweet that Cole loves Philip so much and wants to take such good care of him. I know this operation will be hard for Cole to understand. We have been talking about it some to prepare him...but Cole thinks his kisses will fix Philip. Oh how I wish that were true.

Okay it is a sign..

Okay I think this is a sign..I am meant to have these flowers. Have you seen the Fileds Of Europe? Oh man..That is my favorite. My sister sent them to me once..they are just beautiful.

So if I win..I am giving them to me..sorry mom..I know..I am awful. But you love me.

And my birthday is Monday. The day after Mother's day and the day before Philip's BIG day.

Great Giveaway.
http://twoofakindworkingonafullhouse.blogspot.com/2009/05/surprise-mom-in-your-life-24-hour-1-800.html

Flowers for Amy Giveaway..

So would it be really bad...if I won this to keep the flowers for me for my birthday? Hey maybe if any of you win..you can send them to me for my birthday. Yep..that is a great idea.. Go and hurry and sign up..so I can get flowers..I mean ..so you can win...lol

FLOWERS FOR AMY giveaway..

Wordless Wednesday..Almost

See this cute little boy..see the cute little face..He looks a little mischief ..huh?

Okay so if you are a mom..I bet you will really enjoy and so understand what I am showing in these pictures...

Knock..Knock..Mom..are you in there? I need you.

Cole I will be out in a minute. But I need you NOW..

Cole..I will be done in one minute..

Then I look down ....and yep...I see little fingers...Then a piece of paper. And then a few toes to push the note in the bathroom. Ha. He is 4 years old and is writing me notes while I am in the bathroom...And umm...I know a few of you are wondering how I took the picture..no I do not carry my camera in the bathroom..well sometimes I do.ha . I happen to have my phone charging in the bathroom. yep that is my story and I am sticking to it..

Tuesday Tribute

So I have to say that this past week I was so blessed by my friend Grace. For months she has offered to do certain things to help make things easier for me. And I usually have a hard time saying yes.

Well last week she learned a lesson. Be Careful what you offer because I might just say yes.

Last week Grace offered to take my laundry to help me get caught up . My dryer has been broken and the wash has piled up. I can not tell you the amount of times she has offered and I have said NO WAY. This time I said. Okay I have DR appt so it will be in black garbage bags by the door.

Grace knows all my dirty laundry...and now she really knows all my dirty laundry..

Poor Grace..she lugged two big black bags out to her van..and lucky me..she returned with it washed dried and folded that following day.

I can not even begin to tell you how much it helped me. What a nice wonderful blessing. I just can not thank her enough.

OH and I think you guys will LOVE this. Philip said very excited. OMG It has been like 6 months since I have seen this shirt. Great thing to say in front of Jimmy. LOL

So thank you Grace. And as always you always make things easier for me. It never goes in noticed or unappreciated.

Today's Dr Appt..

Here we are...the day we have been waiting for..the Big DR appt with the surgeon. I have all the pre operation papers we need. I have his psych release and the medical Op release. What I do not have is a child who is 100% weaned off his meds. NO matter how hard he tried...he just can not do it with no medication. I think today could go one way or another..I so hope it goes okay. One thing with Philip and the medication is...most of the patients who need to wean off the medication is they have ONE injury or illness. Philip has multiple issues. Not only does he have severe right side pain from his stroke and multiple operations...but now the left side oh so painful issues. His stomach has had so many operations with tons of scar tissue...back pain from leg and hip issues...and on top of that the oh so painful headaches. Okay..I think I just typed all that out to make myself feel better for the DR appt today and explanation to him..maybe I should just email this to him. LOL.
So today may be hard. But he is down to one and a half pill a day. And all hell has broke lose here. No nicer way to say it. He has detoxed and been in pain and been very hurtful and mean one minute and miserable the next...It has been a hard long road for him.

Tomorrow we see the other DR to talk about options of travel to out of state hospital after he recovers. I am interested to see what he has to say.

I guess I should add that today is also a little ..oh I do not know the word. It is our last appt before Philip's big operation. When I think back to when I first took Philip to see this DR I had no idea that it would lead to this. But it has. It is a path that has been laid and we have followed. Not without some twist and turns and bumps...But here we are...For some odd reason I feel sad . I hate that it has come to this...

Is any of this making sense? I sometimes think I ramble..ha..I know I ramble.

31 day giveaway...We share rule applies..ha

Do you need to be reminded of the rules...you win..we share..simple..right? I hope we win..

This is a awesome giveaway..31 days of giveaways..heck we may really have a chance to win something...

I am posting day one through four..hurry these are about to end..

Awesome Candle

Wonderful Book

Necklace

Wood Italian Gift Set

Not Me Monday

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 daughter and I were having a conversation about "TOM" . It was a great mom and daughter conversation. We talked about what she had learned at school on that "class" as she calls it. We talked about being prepared etc. My daughter did NOT say to me..Hey mom I guess women fighting in Iraq do not get "TOM". I did NOT look at her like she had said the funniest thing I have ever heard. When I asked her why she said that she did NOT say well..they are over there fighting a war and would not be able to take midol and bubble baths. Ahhh...I then did NOT say Emily if all it takes to stop having TOM is moving to Iraq..then I am packing my bags..

I have NOT become so overwhelmed with the week ahead that I could not sleep last night and woke up so tired that I did NOT brush baby powered in my hair and go to the lab. I then did NOT wonder if I could get away with this tomorrow for the BIG DR appt. That would be gross.

I did NOT get a email from the head of directors of the geek squad offering to help with my computer problems that I blogged about here . I then did NOT email him back and not realise I had my blog address in my siggy. The nice Geek Squad man did NOT write me back and tell me that all Geek Squad workers are NOT Geeks and he hoped my son's operation went well. Opps.

Rambling Words At One Am....

I wanted to share a few things with each of you. As you know this week I shared AKA vented that I was having a really hard time. I have to admit that I almost hit the delete button because I just hated to even read my own words. I felt like I cam across a tad whinny and maybe even ungrateful. I admit I can whine ..trust me..I know that..ha. But one thing I am in grateful and blessed. I am working on showing that in my words and even my actions. I love the whole concept of the words Grace.

I thank God everyday for my family. I also thank God everyday for being Philip's mom. I can not imagine anyone else being the one who is blessed to take care of him. Sure it is hard..and lately it is harder then it ever has been. But I know God is with Philip and he will help guide me through this path. I am thinking maybe there is a lesson in all this...and I hope we all learn what it is.

Watching Philip struggle is breaking my heart. It has put me in a place that is just sad and harsh. But with that being said. I am not sad..or depressed. I am just frustrated and overwhelmed. And I am going to need to work on those two issues...because they can make things a whole lot worse. Trust me I know. Humm..

Many times I have heard how unlucky we are. It use to make me feel kind of weird..like we were some type of freaks. Then the more I thought about it ..the more I thought just how foolish a statement that really is.


First I do not think for one minute Luck has anything to do with Philip's medical issues..or my cancer. If for one minute I let myself think that it was just luck I could become a bitter women. If I thought there was some hat with a number in it and when our number was picked..this was what happen..I would be mad..bitter..and furious.

I know that God has a plan. I know that he has guided us every step of the way. And he will continue to do that along this hard path. God does not draw names..or punish..he has a plan and we live by his plan..simple..but sometimes hard.

The other part of the luck comments that makes me sort of laugh is..Philip is a child who at 6 week old started on a path of 18 brain operations, a stroke, 27 orthopedic operations, shunts, shunt infections..and now the loss of function in his left side and the severe pain, seizures, slit ventricle syndrome, and on and on and on..and yet even after all of this..and a 17 hour brain operation where he had a stroke, coded twice and was told he would not live though the night. He survived ..and lived and still lives. That is not bad luck..that is not even good luck..that is a blessing and a miracle.

Sometimes people throw out the word miracle too often. And yes there are many forms of miracles. But watching my son lay in ICU blind for 17 days and told he would never have any brain function..I know he is our miracle. He lived and he lives and I pray he continues to live.

With all this being said...I will admit that things have taken a toll on me . I am having a hard time with my treatments and the side effects. They have switched some things up due to my last PET scan and I think my body is not use to it. Being run down and tired..has made things a little harder to deal with.

I am working in taking a day at a time. Deep breathes...and really trying to not just say the words..but LIVE the words..and depend on God. I am leaning on God while he helps me find my way.

There has not been a day that I have not felt the support from each of you. Your comments and support have helped me more then you know. I am so truly blessed to have all of you on our team...how can we go wrong with a team like this?

I wanted to thank each of you who visited the online party for Philip. I thought maybe in a few weeks we can do a posting about what some of you got and what you think. Maybe we can figure out what the best scents are... Brandy was a angel to work with and I feel honored that she did this for Philip.

Also for those who made a direct donation using the sidebar button. Thank you very much. Each and every penny will go towards Philip medical cost..and trust me there are tons. I am anxious to see what they say next week about what out of state hospital Philip will go to after he recovers. They have spoken of Duke, Sloan and Mayo. I am sure they will know which is the best for Philip's needs. I am going to try hard to not worry about how we will do it get there, afford it, stay there...and focus on the hope that a new set of eyes and help us.

Finally and most important...prayers. Please continue to pray for Philip. He is in so much pain and just miserable. We have been back and forth to some DR appts this week and the DR just shake their heads and say how bad they feel. Finally today we ended up calling the surgeon and spoke to his nurse. After she spoke to him it was clear that they knew and understood how painful and hard this was...but it had to be done. They did allow him to take some phergan for his nausea...that has been brought on with the pain level. Next Monday he cuts his meds even more. So I will just pray and pray and pray.

Some wonderful father posted this on Philip's CB guestbook. How very true this is. I am going to try to live by this.

Venting can be a good thing, not only for yourself, but for others.It may give someone who loves you a new insight into how to help and what to pray for. It may give a stranger comfort to know that he or she is not the only one facing a particular set of trials. It may give someone a needed slap in the face, as in "I cried because I had no shoes until I met a man who had no feet."

I hope you all have a very blessed weekend.

Oh and BTW My Not Monday..is going to be pretty good..just saying..ha