Today I sit here snuggling Allie Page who has brand new  pj's for jammie day at school tomorrow.  My boys are exempt and were home by themselves today and did not kill each other or burn the house down so that is good.  I love Christmas, but I used to love it so much more.  Its so busy and crowded everywhere you go.  It's like suddenly everyone is on edge and stressed out and pushy.  I have been feeling like I am walking on eggshells in most of the places I go to.  Family is an entirely different issue.  This year, they are not speaking to them until they make amends.  Them isn't speaking to they because they just can't take any more of it.  These other folks haven't spoken to these folks for the last 16 years, they aren't about to start today. Which means, we get to have 4 different Christmas's yes, FOUR.  And we all live within 15 miles of each other.  I know we are not alone, just reading all of the posts and things on FB. 

The other problem I have is my birthday.  It is the 10th of December and I hardly get to see my bestest of friends because I recently changed jobs.  And so, when 3 of my close friends want to take me on an all day shopping spree and lunch last Sunday, I had a great time, but came home to a grouchy husband.  Then I have another 2 friends that are wanting to get together for a b-day lunch but when I mentioned it to my husband, he rolled his eyes and said, "Whatever, we don't need you around here anyway."  So long story short, it is hard to enjoy the season when one of the grouchy, busy, pushy and stressed out people is your own spouse.  I better start getting back into the Word of God and getting down on my knees and praying so that what others' do and say no longer affects how I feel about the season we celebrate God's greatest gift of all - Our Lord Jesus who was born in a manger.  Sometimes, a girl just has to vent a little.

We have been chosen in our hometown to be the Grand Marshall's of the Christmas parade.  The kids are pumped about throwing candy out of a truck bed. A friend of mine and her husband had banners made that have the picture of the book on them.  They are beautiful.  She said she was going to help me with the signs for the parade, but I was thinking cardboard, glue and glitter.  Such a sweet surprise to see my children's faces on a banner, so large, I can scarcely fit it into a picture on my camera.  I took the girls and Adam to Chili's tonight - I just didn't feel like cooking. On the way home, we had a sing-a-long (all four of us) to that song, "just the way you are".  I just felt completely happy. Those moments are fleeting - happiness, pure happiness like that.  Some friends of ours got us an elf on the shelf.  Her name is Crystal.  She made us breakfast yesterday morning to which the three who still believe in Santa were completely amazed by.  "How did she open the donuts? the milk?", "where did she get the plates, the cups?" Then they started to ask her for bigger favors like "can you put Christmas lights on our house?" I thought, Oh Lord, I have really started something here.  I had her in the bathroom the first night and Adam refused to go in there.  He said, "mom, she is creeping me out." He is so funny. Emma has learned how to do three cartwheels in a row.  Poor Allie is trying to master one, but her cartwheel relies on only one hand, so often she falls and hurts her wrist, or her feet.  I cut the girls' hair tonight and it looks extremely cute.  They love it, and Adam couldn't tell them apart.  I am literally, typing this as Emma is singing Christmas Carols and Allie is rolling around on the floor trying to make herself dizzy.  What a Wonderful Life I have!

I didn't do the countdown of to Thanksgiving "things I am thankful for so here goes a short list: I am thankful for my children, my spouse, my mother and father, my sisters and brother-in-laws and my nieces and nephews, my cousins, my friends, my coworkers, my employers, my students. I am also thankful for rain, sunshine, snow and clouds. I am thankful for my salvation, Jesus and His word and His promises.  I am thankful for good health and the ability to get out of bed every morning and go to work.  I am thankful for flowers, italian food and especially chocolate.  I am thankful for sweet tea and Dr. Pepper.  I am thankful for the chicken enchilada casserole at the Pink House and the pumpkin Cheesecake at the Olive Garden.  I am thankful for knowledgeable and caring Doctors and nurses.  I am thankful for the freedom to worship where I choose.  I am thankful for balloons, rubik's cubes, squishy balls and office supply stores.  I am thankful for clean sheets and a mopped floor, clean dishes and a pantry full of food.  I am thankful that I never have to worry about anything, because God always provides for us. I am thankful for 100.9 KXOJ so that I can listen to praise and worship music anytime I want.  I am thankful for a church and a church family who love and take care of me.  I am thankful for fuzzy pajama pants, and loose fitting t-shirts with v-necks.  I am thankful for every animal from the largest elephant and whale to the tiny guinea pig and lady bug.  I know it seems like a lot, but that is just my short list.  God has blessed me beyond anything I could have ever imagined.

I sit here this Sunday evening feeling very thankful.  Thanksgiving came and went with way too much family drama.  However, I am so thankful that I was not a contributing part of it.  I have learned in my life that keeping my mouth shut, is much more valuable than opening it.  In fact, I am getting much better at it as I age. I got to teach Sunday School this morning, I am in charge of "games".  We played several games, all focused on the promises of God.  God never breaks his promises.  As humans, we have a tendency to break promises, even though that was never our intent. It is funny, the other thing I am getting really good at is apologizing. When God first put it upon my heart to apologize to co-workers who had been just nasty to me throughout the years, I was like - WHAT? "They need to apologize to me, they have been so nasty to me".  God put upon my heart that even though they had been nasty and hateful and hurtful that it was my duty as a Christian to apologize first to them.  I have to admit, when they were nasty to me, I got nasty right back.  Most recently, God put it upon my heart to apologize to one of my former employers.  This employer basically had me in tears at least once a week.  Of course, as usual, when she was nasty to me, I got nasty right back.  And so, with all of the strength that God gave me (could never have done it on my own), I called her up and apologized.  Funny, every time I have apologized to someone who has been horrible to me, they cannot seem to say "I forgive you". I wonder what that is about? ? ? . . . . . Maybe they are too busy thinking, "should I apologize too?" Maybe they are thinking, has she lost her marbles. LOL!  At any rate, every time I apologize to someone who is clearly lost in this world, God gives me a peace about it.  It's like well - Deb - you did your part, the rest is between them and God.  And it is, like family drama and conflict, each person feels that they have been wronged.  It is likely that each one has at one time or another over the course of several years.  At any rate, if even one person thought, "yeah, they have been horrible to me my entire life, but you know, I will apologize and the rest is between them and God." I wonder what our Christmas family get together would be like.  Hmmmmmm.

They showed my testimony this morning at church and I had 3 people come up and hug me and tell me how much it meant to them.  Somehow it seemed while I was talking that I was rambling, but God took it and made it flow very well. Allie had kind of a rough day on Friday.  Of course, I was at a workshop in Norman Oklahoma.  The school nurse called me and told me that she had been repeating herself.  In fact she asked the para to "look at my little pencil" at least 15 times that day.  They were thinking that perhaps she was forgetting that she had already said it.  I contacted Stanford who said they could order an MRI for her, or we could just keep an eye on it.  She has been doing well here at the house, I haven't seen any repeating herself.  I have been studying to take my Algebra II/Geometry test on Saturday.  This is so that I can teach my special kiddos Algebra I and Geometry in my own classroom.  Some of them really need a smaller class size and more one on one, so I am doing it for them.  I can honestly tell you that I thought I might have a clue what I am doing since I have had 12 weeks of Algebra I, Algebra II and Geometry this year.  But when I looked at the sample test I felt like a complete idiot.  Matrices, logarithyms, formulas I have never seen before that use exclamation points.  Good grief, not sure I will pass this one.  I will give it a shot though and let God do the rest.  I know I seem to rely on Him a lot, but it is all I know how to do.  There is only so much I can do and I can control in this world - the rest is completely up to Him.  Got to enjoy some time with friends on Saturday at an OU game.  It was time well spent and desperately needed. Girls day out!

I gave my testimony on being a witness tonight on videotape to be shown at the 9:45 service at church.  I do talk about God and what He has done for me all the time.  I offer to pray for and with people I work with and friends.  I have called people who were continually horrible to me and asked them to forgive ME, thinking that is what Jesus would want me to do. I am not perfect, I would love to say that people can see Jesus in me all the time, but I know that isn't true.  I make mistakes, and sometimes those mistakes are very hard to take back.  Sometimes, my anger gets the best of me and I in effect feel like I lose my witness in that.  My book "Gifts of Grace" tells our story, my family's story.  The blessings and struggles of life with four children with special needs.  Were there both heroes and villains in the story - - - - YES. They are in every story.  There were people that made our journey very difficult, and people who made our journey so much easier through their words or their actions.  There were MANY more good folks who supported us and who would have done anything for us.  But, as we are human, there were also people who intentionally or unintentionally made it difficult in one way or another.  It is my prayer that the book "Gifts of Grace" is a positive witness for Christ.  That it shows how much you can endure when you have faith, stay in prayer, and allow God to take complete control and give you strength when you have absolutely none left.

I am sitting here tonight, finding myself thankful. I am counting my blessings and am at peace.  Allie is doing well this week at school.  The extra hour we gain at the end of daylight savings time helps.  The reporter and photographer that came out to the house on Wednesday did an amazing job writing about our family and the blessings and struggles we encounter every day.  Of course, the children were on their best behavior while they were here.  For that I am thankful, but is sure doesn't give them the entire picture.  Literally, from the time Brennan wakes in the morning, until his head hits the pillow he is using all of his tricks to make the other three crazy.  If Brennan happens to turn in early, Adam takes over and drives the girls completely bananas.  Two nights in a row, I have found myself holding 2 screaming beligerent girls who were absolutely furious at their brother.  Tonight things are quieter, eerily more quiet as I am able to blog.  I am about 800.00 short of being able to pay myself back from all of the publishing costs of my book.  That in itself is a miracle.  I have purchased another hundred books that I already have about 30 people on a wait list for them in addition to a book signing in Broken Arrow.  God has blessed our family way beyond anything we could have possibly imagined.  Yes, we have had our share of absolute heartache, but in return he has given us a stronger faith in Him and a love for the things which are most important in life.  In church on Sunday, I lit a candle for pawpaw Ken who passed away in 2007.  As I lit the candle, the lady standing behind the table started to cry.  She said, "I knew I would cry when I saw you. I read your book and was so incredibly blessed by your story that I just have to give you a hug".  This my friends, is what is most important in life . . . . . people.

Allie had a relatively long TIA today. It lasted 4 1/2 hours.  This is quite long considering a typical tia lasts about 5 minutes or so.  She started complaining of a headache, so I went to her school and I could tell she was having a TIA. Slurred speech, slow response time, difficulty following simple 2 step directions.  We did trick or treat last night but we were home by 8.  Still, this could have been the culprit.  Because Allie is not well tonight, I am again missing out an awesome opportunity to watch my son.  One of the football team captains at school was reading my book.  He saw in there that Brennan had Hashimoto's thyroid disorder and that his extreme short stature had made it impossible to ever play football.  He came to me and asked, if it was okay with the coaches, could Brennan come out with them and participate in the coin toss.  He said they would get him a jersey and everything.  Of course Brennan is so excited about this, as am I.  Donald is getting to go and get to watch this event, but I must stay home with my sick baby. It is a mother's duty. I will say this, when the captain of the football team comes up with such an unselfish and gracious act of kindness, it brings me to tears. What an amazing gift he has given my son. What an amazing man this boy will become.  He inspires me. I am privileged to be one of his teachers.  I will never forget him and what he did for Brennan.

I have a whopping 3 softback books left.  I have a family reunion tomorrow and I am praying that only 3 family members will want one - yeah like that is going to happen.  At any rate, the book is out and everyone who has read it has been blessed by it.  That was and continues to be my prayer.  There were years when I was tormented by the illness of my daughter, the challenges that my other three children faced.  I have to say, it was almost impossible to balance my ability to be an advocate with my ability to be polite and civil to those who were not doing right by my children.  It is a regret that I have that I could not balance it better.  I was under a great deal of stress, day in and day out.  I lived with the strokes, the fights, the autism, the everyday struggles that my children were fighting.  I lived and continue to live like that mama bear that rears up when something or someone tries to threaten their ability to be successful.  It has come to my attention that in the process of advocating for my children I have hurt the feelings of people, I had no intention of hurting.  I wasn't working "against" them, I was working "for" my children.  At any rate, it is with a heavy heart that I write this for these individuals refuse to have anything to do with the book.  They regard it as negative, an attack, a betrayal.  I wrote it to be a blessing, uplifting, inspiring, intended to bring one closer to God, strengthen their faith.  I wrote it to bring compassion to those who do not have children with special needs and for those who do to relate to us, to know they are not alone.  I pray with all of my heart, that the individuals who refuse to even open a page, who refuse the blessing, will have their heart softened.  That those individuals will find compassion for someone who was struggling through a time that was horrific at best.  That they would pick up the book and read it, read it and realize it's intent is purely positive, inspirational and spiritual in nature.  I pray this with all of my heart.  I would hate to think they missed out on this blessing that God has given to me to share with them.

The book signings are over and I have about 40 books left.  I have several friends who still want one from me, it is just trying to get it to them that is problematic. I have no doubt, that God has been glorified through the book.  Every person who has read it has been touched by it and it has strengthened their faith in God.  It is funny, when I was pregnant with the girls, and wasn't completely sure they were going to make it (they had a 20% chance), I bargained with God. Oh yeah, like you've never done that. LOL. Anyway, I promised him that if he allowed me to hold them, even for only a little while, that I would tell the story to everyone I know so that He would be glorified.  After they were born, and I had gotten to hold them, I began to write a short synopsis about my story.  A testimony that I was hoping Pastor Ray would let me tell at church.  This would fulfill my promise to God. Ha, now that is a funny one.  I never did get a chance to tell the short story to the congregation, instead, God had in mind for me to write a book. A book that would reach people all over the country and would give Him the glory for all of my many blessings.  Had you told me then that I would ever write a book, I would have laughed hysterically and told you that you were CRAZY.  God's plans are often more than we could have ever imagined for ourselves.  We need only to follow where He leads us.

While enjoying Fall Break, I have managed to fit in three book signings.  I am nervous. What if no one shows up, what if a lot of people show up. What if I don't sell any books, what if I sell out and don't have enough. Good grief. It is funny, when I wrote it, I honestly had no idea that people would love it so much.  Now I find myself worried, that not enough people will get a chance to read it and be blessed by it.  I need a press release, I call the publisher and they say sure, no problem, that will be 500.00.  So I write my own - yeah right - that's gonna fly. I contact Mardel, Barnes and Noble - apparently it takes an act of congress to get the book into their stores.  I bet the publisher could work it out for a fee.  Worry, nervous, grief . . . . . . . . . . NOT at all what this is about.  I distinctly remember writing it and thinking if it just blesses one person, it will be worth the publishing fees.  I remember telling the marketing person that I wasn't worried about marketing the book, that it was God's idea that I write it and God will make sure it gets to the people who need it.  Where did that confidence go? Why am I worried about it.  Seriously, I am letting it go.  I am giving it to Him.  After I sell the last of the 75 books I have left, I will have almost paid myself back for the publishing costs.  That in itself is way beyond what I ever thought would happen.  It has never been my book, it was never my story, it was His story.  The story of God putting His loving arms around me and comforting me through times that were at best horrific.  Thank you God for making me an instrument for You.

I find myself delivering my books to friends all over Claremore and Inola.  I received all 295 of my books and Allie and I started signing them.  Actually, it was quite fun as Emma, Brennan and Adam joined in the signing fun as well.  It wasn't all fun and games though - between the signings they had to argue about how many pages were devoted to each one of them and who should sign where and there was Allie in the middle of all of it shouting, "its my book - you all can't sign it."  Its the fighting.  I know my sister and I fought terrible and my husband and his brother used to hit each other with 2x4s and chase each other with chain saws, but it isn't at all what I expected when I became a mother.  Why not? I mean, we fought as kids, why wouldn't mine fight.  Well they do, like the dickens.  Brennan fights with Adam, Adam fights with Brennan, Adam also fights with Emma, and Brennan fights with Emma, Allie and Adam fight as well and Emma and Allie fight sometimes.  The boys, 14 and 11 are able to inflict damage on each other (and my home.)  Things are thrown, fists fly and things break.  All the while, I am yelling, stop it please stop fighting.  It is no use.  I have run out of ideas.  I supposed it is normal, the fighting. . . . . . but lately it just seems like it is all the time.  There just isn't enough of me to go around.  A lot of the times, they are fighting over me.  Who will sit by mom at the restaurant, whose side mom always takes, who mom loves best . . . . . .  It is enough to make a good momma go CRAZY.  My sister and I are the best of friends now so maybe . . . .  . . . maybe there is hope.

I ordered copies of my book today "Gifts of Grace".  Funny thing, I don't think I have told you how the book came to be.  I speak, once a year in my former Home Economics Teacher's classroom.  The topics range from specific crazy stories about my children to the seriousness of being a parent of children with special needs.  At the end of each talk, my former teacher, Mrs. Spurlock, would say "you really should write a book".  I would laugh and say "yeah right, like I have time for that."  Brennan was up for confirmation at our church and Miss Frances told the parents that if you wanted to request a specific mentor for your child, you could . . . . OR, you could allow God to choose your child's mentor.  I called her and told her that I wanted God to choose Brennan's mentor for confirmation.  God gave us Brent Youngs.  Half-way into Brennan's confirmation year, Brent gave me a copy of his book "Perfect Timing" to read.  I had no idea, he was a published author.  After Brennan was confirmed, I went to Brent after church one day and asked him if he would be interested in helping me write my book.  He said, "that's funny, I was just getting ready to ask you if I could help you write a book."  At any rate, not only did God choose a perfect mentor for Brennan, but he put Brent in our lives at a time when I was ready to put pen to paper (hands to keyboard) and write our story.  Brent was instrumental in rewriting, editing, and perfecting our story into something that reflects God's infinite grace and love in our lives.  And so, now we have "Gifts of Grace".  It is available through the Westbow Press website, but will soon be available everywhere. I hope everyone enjoys God's book "Gifts of Grace."

Allie just finished her first full week of school.  She is tired, but was still able to find time on a Saturday to enjoy a playdate with a friend.  She is snuggled up beside me, resting.  I lean over because she has the faint smell of the hospital still on her head, where the sutures are. Ugh, I hate that smell, but I go back for more, hoping I can smell her shampoo over the smell from the healing suture line on her head.  Her hair covers it so well that no one at school knows "which twin" had the surgery, they have to ask.  Righty, what we call her weak hand/arm, is becoming weaker and she is beginning to ignore it more for some reason.  Her therapists both at school and privately have noticed.  They are discussing a hand splint, but are trying to decide which would be best.  She wears her "heels" to school and her PT tells her to stop wearing them because they are bad for her.  They are bad for her, I mean, she already toe walks and her achilles tendon have shrunk, making it difficult for her to pull her toes up toward her shin. She decides flip-flops are a better choice for now than tennis shoes, although tennis shoes are actually the best choice.  I get that, I do, but how do I say no when all she wants is a pair of heels like her sister has.  Well, as you can tell, I don't say no.  I get them for her and just have her wear them to church or something.  She gets it, heels are bad for her, tennis shoes are best . . . . . . but she picks the flip-flops.  A nice happy medium, a middle-ground, LIFE without too much restriction and LIFE without too much risk.  Everyday, it is a fine line that we walk.  Everyday . . . . . . .

As I sit here, typing away on my computer, trying to catch up with the week's paperwork. I am listening to my little girl singing a song (I don't recognize) while playing a game on my Ipad.  I think . . . just two weeks ago, I was taking a picture of her on my cell phone just before she was wheeled into the room to have her 5th brain surgery.  She is back at school with support from a school nurse and two loving paraprofessionals who are watching out for her while her colon and her omentum adheres to her brain.  They already are protective and attached to her.  She has such a way about her that you can't help it.  Even when you have bothered to fix yourself a bowl of ice cream, sitting down to finally relax and enjoy it . . . . she sees it, walks over and sits herself on your lap only to look at you and smile as if - can I have a bite? Annoyed for only a half a second, you realize what an honor it is that she has chosen to sit on your lap.  What a blessing it is that she can walk over to you, climb onto your lap, smile at you and eat a bite of your ice cream.  How very blessed we are.  No doubt, her strokes could have left her completely incapacitated.  God saw to it that she is still our precious little girl.  Thank you Lord.

As I took the tape off of the 7 suture lines on Allie's torso tonight, I used some glue remover to get the yucky sticky stuff off.  I looked to her legs and saw several nasty glue spots left over from her 2nd catheter and decided to rub those off also.  Brennan walked in and said, "Wow, Allie you are the toughest little girl I know."  He seemed so interested in the procedure.  He asked "What did the omentum look like? Did they take pictures of her brain when her head was open?"  I told him I was sure they had, because one of the surgeons had shown me a picture of her omentum that he took on his cell phone during the procedure.  As I put neosporin on her sutures I noticed I could see the slight bulging of the omentum that had been strung up along her torso.  I could feel it, under her skin. Brennan again was intrigued "They strung it all the way up under her skin from here (points to her abdomen) to her brain.  "Yup." I answered.  I combed through her hair and she winced several times as I worked through the left side of her head.  We googled pictures of moyamoya surgeries and saw children with the same suture dressings and the ever present dot on the right side of her forhead.  I always thought they dropped something. Instead, it is where the screws dig into her skin from the head rest that keeps her head stationary for the surgery.  So many surgeries, so many times her brain and body has been opened up for other's to treat . . . to examine.  I wondered, will someone one day google "omentum transposition surgery" images and find Allie's brain and omentum for other's to see.  Possibly.  Does it bother me? The answer is, not as long as there is an older sibling of a kiddo who has had the same surgery getting answers to his questions about his younger sibling's terrible illness.

Allie is doing amazingly well.  She is eating, drinking, smiling and laughing.  It is as if God has given her back to us, if even it is only for a time.  We have our follow-up appointment at 11:30 Cali time.  If all goes well, we will be headed home tomorrow morning.  I miss my family and friends so much.  We are ready to be back at school and back to being our semi-normal selves.  As we snuggle on the bed at the hotel, she cannot seem to get herself close enough to me.  Her feet have slipped themselves into the cracks where my legs come together, she has one of my arms held tightly around her.  She has pushed herself so closely against me that I am almost off the bed.  I wake up almost falling off of the bed to make a dive to the other side, where there is more room.  By the time I get to the other side, she has moved her body completely into the middle.  I try the other side anyway, and as I lay there, she finds me and begins the snuggling process all over again.  These are the moments . . . . . . . that I will miss the most as she grows into a teenager. I always thought that I wouldn't miss it at all.  I thought I would love the thought of that big old king size bed without any children in it.  But the thought of that makes me sad, as I sit here with my baby girl (who is my hero), as she grabs both of my feet with her tiny little toes. : )

We are finally out of the hospital and Allie is doing much better.  She had a shower this morning and ate some breakfast.  She is currently working on eating cheetos, a candy bar and a dr. pepper (lunch of champions).  She has only had regular children's tylenol for pain and is up a lot more often walking around the hotel room.  We have a follow-up appointment tomorrow at 11:30. I have a complete sense of peace that comes only from God above.  He has wrapped us in prayers from all over the country.  We are blessed beyond measure that she is here with us and that she is smiling and laughing again.  Of course, that sense of alertness and being on-guard that comes with a hospital stay and a big surgery is still with me and will be for a while.  I pray that it will eventually fade so that I can finally release all tension in my body and be the teacher, mother, daughter, aunt, friend and wife that God wants me to be.

So we had a huge setback today, when Allie threw up her entire small meal of 2/3 of her mashed potatoes and some chocolate milk.  She is feeling much better now and has held down a couple of pieces of pineapple and a few sips of sprite. When she threw that up, I thought . . . . wow, I was so wrong about her being ready for real food, I am pushing her too hard.  I was headed for the Worlds Worst Mommy Hall of Fame.  Thankfully, God gave us two of the most amazing nurses on the planet.  Alison has been Allie's nurse for the last 3 days and she is an amazing nurse and advocate for my daughter.  Megan is Allie's nurse tonight and she is another amazingly kind and gentle spirit who is totally in tune to what Allie needs.  Tonight, no one is pushing me to push her to drink or eat.  No one is threatening an IV, and no one is a bit worried about how her recovery is going.  At least for tonight.  The morning will bring new faces and the craziness of coming off a long weekend. We have been without a room mate tonight and it has been a blessing of welcomed quiet and much needed privacy. I am still in prayer, that the Lord would heal her body totally and give her the strength to be a little girl again, playing and smiling and laughing.  Something I haven't seen her do since Wednesday.  I dearly miss it and can't wait to see it again.

Here in our semi-private room, we have seen 4 kiddos come and go since we have been in here.  If not for the colon resection we would have been out of here yesterday.  Her bowels are doing much better and we are walking her everytime she pees. (that doesn't sound right does it . . . . ) She isn't moaning in pain when we walk anymore, instead she makes conversation about the things she sees on our walk.  Both of her IV's failed her so she is having to have another one put in tonight.  She just doesn't drink enough to meet the standards here for hydration.  We have an appointment at Dr. Steinberg's office on Tuesday I am quite certain we are not going to make.  She is still only allowed clear liquids and she has to be eating normal food before we get out of here.  I'm not sure why, but I am kind of down tonight.  One more night sleeping in the hospital, actually more to the point - not sleeping.  One more night of hauling her and all of her equipment to the bathroom, lugging that huge door, holding it open all the while trying to hold on to her so she doesn't fall.  Listening to her moan while I shut the door banging into the iv pole. I hurry to untie her pants and get them down while I look down to notice, her potty hat isn't in there.  Because we share a room with another kiddo, her potty hat is in there.  I remove the neighbor's potty hat and place Allie's in just in time for the flood.  Allie has had a complete inability to hit a potty hat since her catheter was removed.  Once again, she has splashed it everywhere and is crying now because her pants are wet.  I take the wet pants off of her and assure her it is okay as I push the ridiculously heavy door open while holding onto her (naked from the waist down), and her IV pole.  I push all of it back toward the bed and realize that her IV is wrapped between her legs and under the wheel of the pole.  At this point, she is moaning like crazy and shaking because she is so cold.  I tell her it's okay and give her a quick hug only to attempt to untangle it while still holding on to her to make certain she doesn't fall.  I get her back into bed, plug back in her pole, attach all of her wires and pull the covers up to her neck.  I give her a kiss goodnight and know that in 2 hours, I will relive the entire experience again. Put a fork in this chick cuz she is done!!!

Allie continues to be in pain when she sits up or walks. She still does not have normal bowel sounds so still nothing by mouth.  Nothing by mouth since Wednesday. She sleeps most of the time, so she doesn't ask for anything which is such a blessing.  She walks the halls, reluctantly, and even walked to the playroom and back.  Walking is great for her, but it is intensly painful. As soon as she has bowel sounds and can hold down regular food we can leave this place.  It sound like that could take a couple more days.  They removed her dressings that were taped and stapled to her head today.  Her sutures or in a T shape but they look really good.  She is in much better spirits than yesterday and my prayers are that she would look and feel better and better with each passing day.

We made it out of PICU this morning and into a room on the 3rd floor.  Just being out of the confinement and loud ringing and buzzing noises of the PICU gives us all a boost of energy.  We are in a room with a window where the sun shines through.  We have our own bathroom and bathtub should the need arise.  Allie's spirits are much better today since we got to the room.  They are alternating her adevan and her tylenol with codeine so that she isn't in any pain.  She still cannot even have ice chips until the bowel resection starts to exhibit peristolysis. (tummy sounds).  We are blessed because she isn't even asking for anything to eat or drink.  Normally after her surgeries, she is asking for spaghetti.  She apparently knows her own body better than we do.  She no longer has a catheter and used the bathroom on her own today.  She has been up walking and even went to the play room and painted a picture.  God knew we needed a boost and in our darkest hour, gave us the tiny bit of sunshine we needed to get through the rest of our stay here.  She is scheduled for an MRI at 8:30 tonight which means it will be around midnight.  The room on the floor also has a couch for a parent to sleep on, instead of an uncomfy chair that I had to make the best of last night.  I am hopeful that we will both get some much needed rest tonight and possibly be released sometime tomorrow or Sunday.  God is so good to us, we are truly blessed.

So they took her back for her surgery at 7:30 this morning. At 1:30pm, Dr. Dutta came out and explained the complication.  She had scar tissue that had fused the omentum to the fat surrounding the colon from her appendectomy a few years ago.  In order to harvest the omentum, he would need to cut out part of her colon and resect it. . . . . . . . . Okay . . . . . . . small freak out, but then good to go.  Procedure finished up about 3:30 and Dr. Dutta again said, that it is critical that her resected colon have a chance to heal. If it leaks or becomes infected, she will have a colostomy bag for a couple of months while it heals. . . . . . . . Okay . . . . . little bigger freak out, but good to go.  Dr. Steinberg comes in and tells us how successful the tranposition to the left frontal lobe went.  He was very pleased and expects great results from it in preventing her stroke and tia activity.  GREAT!!!! . . . . . feelings of relief.  Then I see her, 4 incisions, swollen neck. Large suture line in a T across her head. Swollen eyes and bladder.  Can't pee and her tummy hurts.  The pulled the catheter out to see if she would pee.  If she doesn't pee in the next 5 minutes, they are putting another catheter in.  She can have NOTHING by mouth until she passes gas and they hear bowel sounds. NOTHING, not even an ice chip. Stick a fork in this chick cuz her days of hangin loose in the PICU are over.  I am so ready to blow this popsicle stand and go back to land of the normal. I am ready for Allison to NEVER HAVE to do this again.  She has been so strong and so brave for so long, it gives me pain to watch her go through this all over again.

Started our morning out with a 40 minute TIA.  Finally Allie perked up and wanted to go to the beach.  Took a ride out to Santa Cruz and had a great day. We see Dr. Dutta tomorrow at noon.  He is the doctor that will harvest the omentum and stretch it while threading it under her skin to her brain. Each day brings us closer to an experience that we have had before, but wish we could forget.  Thank you all for your prayers.

Met with Dr. Steinberg today. He has done about 20 of these omentum transposition surgeries.  He does them with a general surgeon, this time, Dr. Dutta.  Dr. Dutta harvests the omentum, stretches it and with only an extra incision at the neck, threads it under her skin and up to the frontal left lobe of her brain.  The frontal left lobe is the area that continues to have inadequate blood flow thus causing her tia activity.  There are risks although small for perforation of the bowel or bladder, hyperperfusion or brain bleed, stroke and death.  The omentum will continue to grow with her as she grows.  She had her blood drawn and then enjoyed a swim in the hotel pool.  We see Dr. Dutta on Wednesday.  Keep us in your prayers please.  She has been so brave.  She is my inspiration!

We are in Palo Alto for what will be Allie's 5th Brain surgery.  She is scheduled for surgery this Thursday, 8/30/12 and they are doing the Omentum Transposition.  I am very nervous because it isn't something he has had before, in fact it is an 8 hour surgery and involves two different surgeons.  We see Dr. Steinberg tomorrow and Dr. Dutta on Wednesday.  We are staying in a beautiful hotel in an amazing city where the weather is 68 degrees the entire year.  Allie is swimming in the heated pool and we are ready to rest ourselves in preparation of the upcoming surgery.  We have an idea of what to expect, this being our fifth surgery, however, we are in prayer that her recovery will be similar to the other surgeries.  She always does so well and I pray that this week will be no different.  She ate her favorite Olive Garden Fettucine Alfredo tonight compliments of her Grandpa Chuck.  Memaw, Grandpa Chuck, and I are enjoying our ability to appreciate our differences and embrace a complete and total love and support of Allison during this time.  I will continue to keep you posted on the events of the days ahead.  The book "Gifts of Grace" should be out in no more than 4 weeks.  I am already thinking that there may indeed be a sequel. 

So Allie continues to have TIA activity sometimes twice a day.  Our blessings continue each day that we have her.  If we were not scheduled for brain surgery in 2 weeks, I would be really worried about her.  We are all transitioning to a new school in 4 days and the excitement is tangible. My story is due out in a few short weeks, and that is super exciting.  I can't wait for everyone to read it. God has been so good to us and He is continually blessing us.  We just have to follow and trust where He leads.  I never pictured myself doing what I am doing this fall, He lead me here and He will not fail me. I am nervous-excited about the plan He has for all of us this year.

I have to be honest.  I could not be the "rock" I am for Allie without the love and support of my friends and family.  I rely primarily on God for strength just to get me through the days most of the time.  My emotions are an up and down crazy rollercoaster and today was rough.  My parents have been divorced for more than 35 years and there are still hard feelings involved.  It is still difficult for them to be in the same room together.  Unfortunately, because Allie has had 4 brain surgeries in the past four years and is about to have number five, they have been thrust together way to often.  I had a dream the other night that my son Brennan was playing in the OU marching band for the first home game of the season.  Unfortunately, in the dream, my parents ended up with tickets that found them right next to each other at the game.  Unable to take the stress of it, I tried as hard as I could to buffer the situation.  While trying to keep everyone happy, I missed my son's half time show.  Hmmmmmmm.  Something to think about.

GREAT news.  They had scheduled a cerebral angio for Allie before her upcoming surgery in August.  I called neurosurgery and talked to Bob. Those cerebral angios are rough on Allie.  This would have been her 7th, I believe.  The insert a catheter in the main artery in her right leg, they thread it up into her brain, inject the dye and see where she has blood flow to her brain. She has to remain still for 6 hours post op, and has to be sedated. Bob was able to track down the "fellow" and they decided to cancel the angio.  They are going to use the one they JUST DID in May.  Thank you Lord!!!

Pastor Ray was speaking in church this morning about going in deep for Christ.  He was talking about things like, taking on a new job that you have no idea how to do and relying solely on Christ to help you fulfill that calling.  He was also talking about forgiveness.  God had been putting on my heart the need to ask for forgiveness from a couple of people who had been attacking me, but by no means did I act Christ like back toward them. I called each one and asked for their forgiveness.  Neither of them "forgave" me, but it is my prayer for them to eventually forgive. I have forgiven their behavior and even though, they did not forgive me, I felt an immediate sense of relief and peace.  I did what Christ wanted me to do and it was HARD. I did it and I was instantly relieved and blessed.  It so funny when the message on Sunday seems to be aimed directly at me.  : )

It is so frustrating watching your child go through painful procedures several times a year.  Allison is scheduled for another brain angio before her 5th brain surgery at Stanford.  The brain angion inserts a tube from a main artery in her thigh and threads it up into her brain.  It shoots dye into the brain to see what areas are not getting enough blood.  It is frustrating because she just had this done in May.  She has to stay still for 6 hours after the procedure and it is very difficult.  She also must be sedated.  Sometimes I don't know if I can take very much more of this.

Well, we found out at therapy that Allie's hamstrings are tight and we need to help her to stretch them so that she can place her heel fully onto the ground.  Also problematic is the fact that her tone has tightened in her arm, wrist and hand and her grasp is almost non-existent.  Rough day when you realize that your baby girl is going backwards.  I knew she was having TiAs every day, but am praying that this is not what is causing all of these troubles.

Allie went to art camp this week with her art teacher.  She painted the following pictures.  She even said that "brainy" went to sleep while she was at art camp, but she didn't say anything to anyone about it. I am so proud of all she can accomplish despite all of her difficulties.

In the car my children made predictions for each other about their future.  Adam is certain that Emma will be singing in her house and will ignore her children's cries for milk.  Brennan said that Allie will be a mean mommy and will beat her children up (he was dodging her fists the whole time.)  Brennan predicts that Adam will live in a dumpster with one of his friends.  Adam decided that Brennan will pester the fire out of his children.  As you can tell, they all have very high expectations for each other.

Allie is taking piano lessons.  Here she is playing "Twinkle Twinkle Little Star."

The girls asked me if I remembered them throwing coins into the fountain at the London Bridge and making a wish.  I said,"yes, why?"  Emma said, "I wished I could go on a boat and we got to ride in Mrs. Watkins boat on the fourth of July."  Allie says, "I wished I could fly."  : )

No one can convince me that God doesn't have a plan for my life.  Before I even had children, I did seminars on Attention Deficit Disorder and Brain Development.  Before I had children, I worked with families who had children with special needs.  I worked with a family whose baby was born at 24 weeks and weighed less than a pound.  I worked with a family whose two year old had apraxia.  I worked with several who had autism and sensory integration dysfunction.  Before I had children, I was trained to do occupational, physical and speech therapy for children who were developmentally delayed.  God was helping to prepare me for what lay ahead.  Did I have any idea that I would have a child with ADHD, Autism and apraxia, and Twins born 10 weeks early at 2 pounds 14 ounces and 1 pound 15 ounces.  I had no idea, nor had the thought even entered my mind.  God knew, He knew all the while.

I remember playing the game "Life" with my sister when we were kids.  We would "get married" and gather our children (we always seemed to have 2 boys and twin girls) Weird how like real life that was, but the rest has been BOGUS!  Where is the square that you land on that says, "high risk pregnancy - bedrest 10 weeks, miss work" - go back two steps."  Or, "your daughter has a stroke, seek immediate medical attention, pay 3000.00 dollar deductible for brain surgery and travel expenses to the only hospital who specializes in these types of things - go back 6 spaces." At this point I would have landed on this particular spot 5 times!!  Then where is the square that says, "son diagnosed with autism, get child on IEP, advocate for him, this is now your full time job - wages = $0 dollars."  I never saw the square that said, "Get on your knees and pray immediately, your son has ADHD and must be put on medication or he may not survive his teen years."  Of course, my game board would have had several spots where I could pray and lean on God for peace and advance 10 spots.  But seriously, where is that stinkin game!!!!

You know that moment when your two boys who are normally trying to kill each other, are actually bonding while discussing the typical traits of a Democrat versus a Republican (at 11 and 14)? I just had one of those.  It must be Friday the 13th or something.  The earth must be completely off its axis.

My mother called me and asked why I didn't blog yesterday.  She said "boring day?"  I laughed.  Actually, I couldn't remember my password.  They tell you not to write it down anywhere.  They make you put capital letters, lowercase letters, numbers and symbols in it.  Seriously, how can I possibly remember all of those. 

I am under a lot of stress right now, in fact, I woke up this morning having a panic attack and a headache.  On a funny note, I had a nightmare that snakes were after me all while I was singing on stage with Rick Springfield to a Katy Perry song. 

Pretty sure I have finally leaped off of the edge.  Luckily I have friends and family who pray for me daily who throw a rope to me and pull me right back up.  I just hope the dream isn't one of those repeaters.  LOL

So I have to ask these questions, in order to look at the brighter side of things:

1.  At what point do you get the benefits of a punch card for brain surgeries, I mean, shouldn't they be buy four, get one FREE?

2.  If the divorce rate for parents of children with special needs is 80%, and we have four of them, does it make our divorce rate 320%?

This past week was quite eventful.  We received a call from Stanford hospital that Allison is at risk for another stroke unless she has a surgery called an "Omental Transposition".  This will mark her 5th surgery since the age of four.  I had a few days for my nervous breakdown and now I am better.  We are waiting for them to call with a date.  On a lighter note, my son Adam who has autism, has made an adult golf putter his new "lovey".  He sleeps with it and in fact, I found it in the freezer on Thursday. Emma had blood drawn to check her thyroid, which we found out today is still low.  They are upping her dose.  Brennan continues to act like a maniac off of his meds.  He got the milk, cereal, and bowl out this morning, forgot he was making his own breakfast and retreated to his room.  I had to remind him that he was making his breakfast. I am praying they will call soon and tell us when we have to jet off to sunny California for another brain surgery.

My four "gifts" are all special.  Brennan is 14 and has been diagnosed with ADHD, Emma is 8 and hass Growth Hormone Deficiency for which she takes nightly injections. Allie is 8 and is diagnosed with Moyamoya and has undergone 4 brain surgeries in the last four years. Adam is 11 and has been diagnosed with sensory integration dysfunction, apraxia and autism.  My children make me laugh and cry and there is never a dull moment in our house as I will blog their weekly experiences in this blog.