Saturday, September 29, 2012

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."

Saturday, September 22, 2012

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 . . . . . . .

Saturday, September 15, 2012

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.

Sunday, September 9, 2012

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.

Thursday, September 6, 2012

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. : )

Wednesday, September 5, 2012

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.

Monday, September 3, 2012

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.

Sunday, September 2, 2012

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!!!

Saturday, September 1, 2012

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.