Abe's surgery

Everything went good. Well except for the problems with checking his sugar and getting the IV started. The surgery itself went great. Both eyes were clogged at the top and bottoms. He has to be on his antibiotic drops for 5 days. If the infection returns they will have to put stints in his eyes to keep the ducts open. We are praying this does the trick.

Abe did well with sedation with just a little bit of drops in his oxygen. WOOHOO!!! That was huge positive for us that he handle the sedation well. Love marking those things off the list.

Here are pictures before his surgery. Thanks so much for your prayers!!!

Fun Stuff

I have been trying to do some crafty stuff here and there. It's an outlet for me and great therapy. I have been wanting to try cutting vinyl on my Cricut. I have had the picture collage up for some time. It started because it was such a huge wall and as we got pictures we liked we could enlarge them and add them. Marlee Anne helped decide on the words. That's what was cut out of vinyl with my Cricut.

The next are two birthday cards that I made with the Cricut.

I made a vinyl quote for Kim for her birthday. Grace and I hung it while she was gone so we could surprise her. I forgot to take my camera and get a picture of it.

OH and I did one over the archway in our dining room. I will have to take a picture of that one.

Prayers for Tyler!

Ya'll this is an article that was in the AJC today. Tyler and Michala hit it off one year at family camp. His mom Connie has been a great source of inspiration to me. Please pray for Tyler and his family as he comes to his final days here with us.

Son draws on mom's inner strength for final daysBy BILL SANDERSThe Atlanta Journal-ConstitutionPublished on: 07/20/08
Connie Copley rubs her son's leg while a preacher prays for God's peace to surround their home.
"Oww!" Tyler yelps, midprayer.

Pouya Dianat/Staff Photographer
(ENLARGE)
Connie Copley grabs onto her son, Tyler, as he struggles to walk a task that requires more and more effort with each passing day since Tyler's cancer metastasized in his lungs.

Pouya Dianat/Staff Photographer
(ENLARGE)
Connie Copley laughs as her son Tyler jokes with his oncologist of seven years, Dr. Bradley George.
Related photos
The preacher keeps praying, and Connie keeps rubbing, moving from Tyler's aching leg to his aching back.
"In Jesus' name, amen."
"You were killing my leg, Mom," Tyler says.
"Sorry," she says, kissing her boy on his forehead.
A registered nurse turned stay-at-home mom, Connie Copley has combined her two chosen professions into the most heartbreaking job: stay-at-home nurse.
Her patient is her 19-year-old son. He is dying from Ewing's Sarcoma, a rare form of juvenile cancer he has battled since he was 12.
And though Tyler has hospice nurses now, the job of primary caregiver can't be taken from Connie any more than can the job of being his mom. "We have a saying around here," Connie says. "There's Mama, then there's Not Mama. Everyone else is Not Mama."
For seven years, Connie and her husband, Todd, have supported their boy while coming to grips with what the future might hold. For the past seven weeks, they've lived with the future they feared: Tyler's time is short.
Through it all, Connie has been the calm in the storm, the one who isn't rattled when Tyler gasps for air or spits up blood. But who can blame a mother for refusing to accept the worst?
On this day, the Rev. Jim Higgins is in the Copleys' home in Acworth to help Connie take the next step in a journey no parent should have to make.
Tyler's dad is here, too. But it is Mom whom Tyler watches closely.
How she handles this moment will tell him something.
She doesn't want to let him down.
Ending the fight
When the shades are shut in Room 181 of the Aflac Cancer Center at Children's Healthcare of Atlanta, it doesn't matter how sunny the skies are on the other side of the window. In here it's dark, jarringly dark.
Just 24 hours earlier, Connie thought her son was as strong as she'd seen him in months. Now she fears this is his last day.
Tyler's cancer, which typically attacks an adolescent's pelvis, shoulder or leg and then often spreads to other parts of the body, had metastasized into his lungs this spring. It was his third relapse, and everyone agreed it was time to stop fighting.
Doctors didn't know exactly how much time Tyler had left, but it wouldn't be measured in years.
Tyler didn't want to lie in bed feeling sorry for himself. That's not Tyler. A fast-talking jokester, he wanted to keep living life as long as he could.
Over the past several months, Tyler scratched a lot off his "bucket list." He graduated from high school, enrolled in college and started training for a triathlon. He got a matching tattoo with his dad and had his head shaved.
"His mother despises it because it is such a reminder of his cancer," barber Shannen Smith said of the shave. "We waited till after hours and I did it. Tyler is going to get his way till his last breath."
On June 18, Tyler starts coughing up blood from his lungs. The pain in his back and chest worsens. Tyler tells his parents to call 911.
He thinks of the living will he had signed. It says doctors should not insert a tube to help him breathe, but now his resolve not to be intubated is weakening.
"Find those papers," Tyler tells his mom. "Tell them they can intubate me if they need to drain my lungs."
In the emergency room, Connie tells the oncologist about Tyler's advance directive. She is having second thoughts; she doesn't know what to do.
"I won't make you make that decision," the doctor says. "I will. We won't intubate."
Connie is relieved. She knows this is how Tyler really wants it.
Tyler makes it through the night. But by 10 a.m. the next day, Connie is calling her husband back to the hospital. Tyler's breathing is labored. He can barely speak.
Until test results come back, doctors can't say how much internal bleeding Tyler has suffered. Bleeding into his lungs, the family learns, is one of the ways he might die. Finally, word comes that Tyler has experienced oxygen starvation, which is another way he might die.
Usually kids with Ewing's get progressively short of breath as the tumor invades more of the normal lung. The oxygen level in their blood drops. "They usually become more sleepy and less aware of what's going on around them — and we think they are less aware of what's happening to them," says Tyler's doctor, Bradley George. "It can be tough for parents and families — and their doctors — to watch as the kids are working hard to breathe."
Tyler receives a morphine and albuterol breathing treatment. And he does a 180.
Soon he is joking again, texting friends, frustrating doctors and nurses. "Can I trade you in for someone else?" he asks the head nurse.
He has a captive audience and re-tells a story of receiving a phone call from President Bush a few weeks ago. Then he describes a practical joke war he's had with his brother, Kirk. Laughter fills what was, only hours earlier, the most somber of rooms.
But the joy is tempered with this: Connie Copley listens as hospice nurses tell her son they will be at his house before nightfall.
'I'm falling apart' inside
On the outside, Connie looks calm, confident. "On the inside," she says, "I'm falling apart."
The worst moment didn't come seven years ago, when the family learned of Tyler's cancer. The worst came when the cancer returned four years ago. Connie knew only about 5 percent of Ewing's kids survive a relapse.
"It was 100 times worse, getting that call," Connie says. "There were times when I couldn't drive because every time I was alone in the car, I was crying."
A year ago, she had to make peace with another reality: Tyler turned 18, and Connie and Todd could no longer force him to endure treatments he didn't want.
Nine months ago, he chose to have his left leg amputated in a desperate attempt to rid his body of the cancer.
Acceptance has not come easy.
"I've never been totally accepting," Connie says. "We went to the lake with some friends and there was a nice church service with all the boats one Sunday morning. Someone sang 'It is Well With My Soul.' I fell apart. It is not all well with my soul. I'm not ready for this. I know I am not there and may never be.
"But six months into his first treatment, I remember thinking there's only so much you can do. It is not my will, it's not what I want, but it is for a purpose. I gave that up a long time ago, having control."
Connie takes things one day at a time. That means she can go all out today, then wake up to face another today. And, if she's lucky, another.
Monday's routine
The Monday evening routine at the Copley house was always rushed, even in the best of times. No one would mistake these for the best of times. It has been only four days since Tyler's emergency room scare.
Todd Copley has just gotten home from Dobbins Air Reserve Base in Marietta, where he's a navigator. Connie has just dropped off Tyler, whom she'd driven around on a handful of errands, and now must leave to pick up daughter Sarah, 12, at a friend's home.
Middle child Kirk, 15, is lying on the couch watching TV. Tyler heads to his room and plops down on his bed.
The next 30 minutes are harried. "Dad, I need ... the oxygen mask ... now," Tyler says in a loud whisper.
Connie pulls into the basement garage with Sarah, who has 12 minutes to change into her dance leotards, eat dinner, put her hair up and be out of the house for her lessons.
"Tyler! Tyler!" Connie says, walking into his room. She's concerned and compassionate, but not panicked. "Does it just hurt, Tyler? Do you need to cough?"
Tyler grunts and starts coughing into a bedpan.
"Todd, get the mashed potatoes, put 'em in the Tupperware," Connie calls from Tyler's bedside. "Sarah's got to go."
Todd needs to take Kirk to Boy Scouts.
"Mondays," Todd says, exasperated.
No time to freak out
Nothing is effortless for Connie, and that includes refraining from breaking down in front of others. If there is one trait that comes naturally to Connie, it is her calm.
"Oh, my kids hated it that I wasn't the mom who freaked out every time they got a little cut or bump or bruise," Connie says, sitting at the end of a physical therapy table one afternoon, rubbing Tyler's remaining foot.
She throws a glance at Tyler. "You'd freak out if I freaked out. So I've got to stay calm. It's good that I'm not the freaking-out mom, right? That's good Tyler, right?"
"Right."
"It just feels really good to have your foot rubbed," Connie says, explaining the medical benefits of what she is doing while they await Tyler's therapist.
"Rub my thigh," Tyler says, pulling the oxygen mask from his face to make the request.
"Get me another pillow, please," Tyler says.
Connie obliges each request without hesitation. Knowing she has done everything she can for Tyler will help her in the future.
"Maybe because I was a nurse, I know too much," she says.
So sometimes, she protects her husband.
"I see some things, like Tyler's motor skills not being as good as they were, and I know that's not good. But Todd doesn't need to hear about that."
What she wants in return is for Todd to not talk about the future too much — especially about things like where Tyler will be buried.
"I'm sure Tyler has an opinion on that," she says. "He'll bring it up when he's ready. I'm not ready."
Connie and Todd were married 21 years ago, and with Todd in the Air Force they've lived in Arizona, California, Germany, Arkansas and now Georgia.
In Arizona, Connie worked at a hospital in orthopedic neurology. Later, she took a job as a nurse in an eye surgery center. When they moved to Germany, she stayed home and has not worked out of the house since.
"Will you grill me a Vidalia onion when we get home?" Tyler asks, feeling a little better, still waiting on his physical therapist.
"Yes."
"Please remember, Mom, OK?"
"I will."
"Just remember. Because I might forget."
"I will, Tyler."
Another step
It is mid-July. Time for Connie to take another step.
Higgins, the family's pastor from McEachern United Methodist Church, helps her, Todd and Tyler plan a funeral.
Tyler had brought it up, just as Connie knew he would.
Higgins starts: "This is about you," he tells Tyler, "but it's for them."
Tyler likes the sound of that.
"Tell us the things that are important to you now, and we'll try to do everything we can," Connie says to her son.
Tyler wants music that is "different, like me." He wants a tree planted with a memorial stone under it. And what if he wants to be buried in his home state of Ohio? Can he do that and have a service here?
"We can do a graveside service there," his mother tells him.
Connie can hardly believe she is planning her son's funeral without falling apart. She has an overwhelming sense of being held up by God.
Connie's faith has been challenged and has grown because of Tyler. She doesn't pretend to understand the whys; she doesn't even want to.
But she believes in the goodness of God and that one day, she'll see her son again.
At this moment, she wants Tyler to finally have some sense of control.
"You think about it all," she tells Tyler. "We'll talk about it, and I'll write it all down."
Then she starts to rub her son's back, knowing how important this meeting has been — for everyone.

Abe's home!

Abe is home. This afternoon he scared us once again. His sugar dropped to 21. Thankfully we had a plan when we left the hospital so that we didn't have to call the ambulance. That was not the best experience for us Thursday night but we were extremely scared. Today we gave Abe apple juice (thanks to our neighbor friend Sally cause we never keep it in the house and she had given some juice boxes to Michala so we had that for Abe) and within a few minutes he stopped the convulsing. I checked his sugar after 10 minutes, too early to check but I wanted to make sure his sugar was going up and not still dropping. After about 30 minutes it was above 100. This little boy - I just don't know.

Now to back track. I was up late Thursday night knowing it was about time for Abe to eat. He was sleeping and I heard him make a strange noise. When I got to his bed his hands were shaking. I assumed it was a seizure. His eyes were not quite closed and moving a lot. When I picked him up he was limp and lathargic. I woke Mike and he got Abe. I called 911.

I will skip all the negative stuff cause I am trying my best to forget it. Memories of the tough times we had with Mary Elizabeth going to the ER when she was little before we figured out we could drive to Egleston quicker than we could get help. I remembered it with Michala but was terribly scared we wouldn't get to Egleston in time with Abe the other night. However we could have easily have made it by the time the paramedics got to the house and got us to Newton. His sugar was 18 though and at that time we didn't have a plan.

A couple of God things that I am so very thankful about it is that Kim is only minutes from our house, she was home and came right over. The other is that a nurse from Egleston PICU was working at Newton and got the IV in Abe.

Angel 1 came to get Abe from Newton to take him to Egleston. As soon as they were there I knew he would be ok. We got to Egleston quick and they had a plan to admit him for observation. All that went great and he kept his sugar up.

Within a 2 hour period I was hit with more info than I knew or still know what to do with. All the if this or if that. They did blood work and urine test to hopefully find out more. One of the 5 endocrinologist we saw said because Abe is such a rare (there's that word again) case there are too many specialist all with different ideas and it's making it kinda tough.

So some of their thoughts. Ridding his body way too fast of any type of nutrients, sugar included. Not being able to break down fats so nothing is being stored. Bad cortef. Change in cortef dosing. See I am overwhelmed with all the info and cannot even recall all of it.

We did end up changing Abe's cortef, canitor and phenobarbital doses. We also added corn starch to his diet. We will keep feeding him every 2 hours in hopes of keeping his sugar stable.

He has an appt for his pre op tomorrow. Thanks so much for all your prayers!

Abe's at Egleston

Mike is sitting with Abe now and I am grabbing something to eat before he goes home. I wanted to send a quick email so ya'll could be praying for Abe PLEASE! Last night Abe had a really scary seizure and he had trouble breathing. He was very lathargic and we just couldn't get him to respond. We called 911. He was taken to our local hospital to be stabilized, then he was transported to Egleston. He sugar dropped to 16. They are still unsure if the seizure was caused by low blood sugar or low sugar caused the seizure. Please pray for his little body to stay strong. I forgot my cell phone charger and my phone has gone dead. Thanks for your prayers!

Visit with Mary Jane

We got a phone call from our friend Mary Jane that she was coming by to see us. Marlee Anne was extremely excited. Come to find out she thought Dakota was coming with her. This is Dakota and Elle's grandmother but they were still in California. It was wonderful to see her. Mom came over to our house so that she wouldn't have to make trips to both of our houses. Posting pictures so that they will get to see them too. Patty came along with her. It's always nice to visit with them. It was the first time they both got to meet Abe.

My little firecrackers!

Just havin' fun taking some pictures!

Update

Sorry for all the posts but I am trying to play catch up, along with keeping my mind busy.

Michala's neurologist in Alabama called to let us know that our insurance would not cover Michala having surgery at Children's in Birmingham. He doesn't do surgery in Atlanta. She did give us the name of two neurosurgeons in Atlanta. Kevin, Angie, & Rachel or anyone else that has used a neurosurgeon in Atlanta could ya'll give us the names and all the good and bad stuff please. Also I think the neurologist she is recommending is or was Morgan or Logan's neuro. I don't have the names in front of me so please give me that info too if you don't mind.

They also told us that our insurance has not been covering Michala seeing Dr. Bebin for the past 10 years. I was in shock and didn't think to ask all the important questions like will we now be billed for all this and will she no longer be able to see Michala. I hate that if it's true!

Dentist appt update!!! WOOHOO!!! Prayers work!!! Michala was such a very big girl for the first time ever. She always cries huge tears and screams. She sat up in between each thing but never cried or screamed. It was so nice! No cavities for any of the girls. Mary Elizabeth & Michala have one loose tooth. Marlee Anne has two loose teeth. WOOHOO!!! She has been waiting to lose a tooth forever. It will be a huge deal! They all have new teeth coming in. Thanks so much for your prayers!

If we didn't have such a wonderful dentist office it would have been trouble. Thankfully Dawn was working and held Abe the whole time. She helped us get in and she and Michelle our dental hygentist helped get us out. They are great. Brooke offered to go help and Scheree offered for one of the girls to go too but we actually did alright. Thanks ya'll!!!

Abe made his first visit to daddy's office that day. I just realize I didn't take a picture of him in daddy's office. Oh well we will have to reinact it.

Happy 4th of July!

I hope that everyone is having a wonderful and safe 4th of July. A tradition each year for us is to go to my mom's (the house I grew up in) to watch the parade. Usually every year I take tons of pictures but this year I have very few. Getting up and down, and standing as gotten very hard for me lately. I am not one to complain so I found my spot and sat myself down. For as long as I could remember my friend Terri and I have gotten a picture together. Kim and I didn't get a picture together and I don't think we got our traditional picture with mom. I told ya'll today my mind wasn't working well.

We had a wonderful time. The parade was nice. It was filled with local politicians. Good, bad and the ugly! LOL!!!

We had a great lunch with our family at O'Charley's. A not so quiet afternoon and evening at home. Happy 4th everyone! Thanks to all of our military men and women fighting for our freedom!

Disclosure - Not sure how this should be worded. I should add that the political advertisement in these pictures does not mean I am campaigning for these people.

What do you wanna be when you grow up?

When I was little I always wanted to be a secretary. I loved watching my sister type so fast. I wanted to do that too. She even let me come to work one summer when I was taking typing so that I could practice my typing.

I never dreamed I would be a wife and mother. Never really had the desire to be. So glad I am not the one in control of my life. Now that I am a wife and mother I strive to be the best I can be. When I grow up I want to be just like Danisa. She is the epitimy of the perfect wife and mother. Her house is so perfect. She is so organized. For breakfast we had toast with her homemade plum jelly. Plums off the tree she had grown. Along with being a wonderful wife and mother she is an incredible friend. I wanna be just like her when I grow up. LOL!!!

For those that don't know our friendship with Spence and Danisa started over 20 years ago in our young marrieds group at Calvary Baptist Church. I remember their last day at church before they moved to Cullman. I was crying so hard I had to leave church. As I sat in the car Danisa walked out with little bitty Alison in her arms. She sat with me and we cried and talked and cried some more. I just knew we would lose touch and the friendship would be over. Over 20 years later here I am typing this from her beautiful home. I am blessed!

When I saw that little bitty Alison this trip I couldn't believe it. She is grown up. All tall and beautiful. Getting ready to leave for college.

As I saw Spence for the first time since his accident I was hit with how very blessed we are to still have him in our lives. His accident could have very well have taken his life. God is good!

Prayers for Abe PLEASE!!!

Last night Abe stopped breathing. We think it may have been a seizure. Last night would have been his first night completely off his seizure medication. Instead I gave him a dose right away. He slept on the monitor last night and did well. I put him back on his full dose of phenobarbital today. I was head strong on getting him off that but God has other plans. Please pray for Abe's precious body. Please pray for me as I am having a really tough time with this. I told Mike today that I haven't accepted the fact that I didn't have my perfect son. Mike quickly reminded me he is perfect. I haven't grieved not having the son I dreamed of. Again I know the steps. I am now trying to transition from denial to grief. Soon I will accept that this is definitely a different path than I had planned. I should have known! He is following Mary Elizabeth pattern very closely and it's not one I want to relive. I need strength and right now I am struggling. Please pray that Mike and I both will have clear reasonable heads to make decisions in the coming days for Abe.

I didn't email this before now because I had not had a chance to talk to Marlee Anne about it. I didn't want her hearing from someone before I could tell her. She had a sweet friend come over and spend the day with her so if gave me a chance to make phone calls and deal with Abe. When she left I sat down with Marlee Anne and talked to her. She listened very well. After I was done she reached for my hand and said mom let's pray. She asked God to surround Abe with all the angels that He has. She said God please don't let Abe go back to the NICU or die. The prayers of a child. God has to hear those!

Michala's appt

I am so used to writing about Abe's appts that's almost what I wrote. Michala's appt went good. It's always such a peaceful experience with Dr. Bebin. I am sure that probably sounds weird but those of you that have dealt with doctors and the med changes can relate I am sure. Well she wanted to hear how Michala was doing. She wasn't pleased at all with the new A-tonic seizures that Michala is having or the amount of time they are lasting. I just HATE given her diastat because it knocks her out for days. She wants to wean her from 2 of her seizure meds and add clonopin. She always wants to do the Vagus Nerve Stimulator (VNS). She wants us to check with Michala's oncologist first to make sure she is clear as far as cancer scans go. She can still have chest CTs as usual and a head MRI if the VNS is turned off.

They are going to start working on getting it approved by her insurance. Dr. Bebin wants it placed in Michala's back because when her port for her chemo was removed part of it broke off and is still in Michala. It's the same location where the VNS would be so it increases the risk for infection. Also Michala would not be able to get to it on her back. Do any of the Aicardi girls have theirs in their backs? Dr. Bebin doesn't know of a surgeon in Atlanta that will put it in the back so she wants it done at Children's in Birmingham. Means several trip to Alabama but if it will help Michala we will do it.

We discussed Michala's increasing irritability and aggressiveness. She thinks it's probably the Keppra. Makes sense looking back because when we added Keppra back she got a lot worse. It has helped her seizures though. Maybe once she gets the VNS we can come off the Keppra too.

Thanks so much for your prayers!!!