Friday, July 31, 2009
Wednesday, July 29, 2009
sunshine days
We've been through quite a storm, and things are finally settling down.
Today marks 2 weeks- 2 weeks seizure free, 2 weeks tumor free, 2 weeks of healthy life for Aggie and relief for all of us who love her. She really does seem like HERSELF again, and the real, healthy Aggie shines so brightly right now you can't help but rejoice. We are standing in front of Niagra Falls, watching the love and mercy of God pour down on our family.
Do I dare enjoy it? Do I dare let myself love this new healthy Aggie? What if she goes away again? For a couple of days after the surgery I tried to keep my guard up, to guard against hope and joy just in case it wasn't going to last. But in just a few days her sweet laugh penetrated that flimsy wall, and now I just praise God for her and love her.
I cried tears of gratitude and relief that day.
The next day we got the pathology report.
The tumor is a slightly nastier kind than they first suspected. It is a Grade 2, not a Grade 1. Grade 1 tumors typically can be completely removed, and if the seizures go away, the patient is considered cured. Grade 2 tumors are more likely to come back.
It is possible that the neurosurgeon got all the tumor, and if he did, it will not come back. But if he missed just one tiny cell, it will multiply, and it is likely to come back with a vengeance. If it comes back, we will hope surgery is a possibility again (it depends on where in the brain), and at that point she will also need chemo and radiation.
As God would have it, Aggie's neurosurgen happens to be one of the best on the planet, and he also happens to be one of the very few who has ever worked with her particular type of tumor. (Her chances of having this kind were literally one in a million.) Even he has never worked with a child with this kind of tumor, so in short, her long term prognosis is uncertain. She will continue to need MRIs every six months. If nothing comes back in the next ten years, she will be considered cured.
So I only have to hold my breath for ten more years!
We have healthy, happy Aggie back, but the shadow still lingers over our home. And we have learned that we just can't live holding our breath all the time. We have been living with a threat like this with epilepsy- just because it has changed its name to 'tumor' doesn't mean it needs to be scarier. So Aggie is mortal and we don't know her future. The same can be said of any of the kids, really. God is in control- it is not our job to know what lies ahead but to do the works of love he has given us today.
We still hear the thunder rumbling in the distance a little bit, and we are not quite sure if it's the storm leaving or another one coming.... but for now, we will thank the Lord for the sunshine.
God has been faithful to carry us this far. He will be faithful, no matter what the future.
Today marks 2 weeks- 2 weeks seizure free, 2 weeks tumor free, 2 weeks of healthy life for Aggie and relief for all of us who love her. She really does seem like HERSELF again, and the real, healthy Aggie shines so brightly right now you can't help but rejoice. We are standing in front of Niagra Falls, watching the love and mercy of God pour down on our family.
Do I dare enjoy it? Do I dare let myself love this new healthy Aggie? What if she goes away again? For a couple of days after the surgery I tried to keep my guard up, to guard against hope and joy just in case it wasn't going to last. But in just a few days her sweet laugh penetrated that flimsy wall, and now I just praise God for her and love her.
I cried tears of gratitude and relief that day.
The next day we got the pathology report.
The tumor is a slightly nastier kind than they first suspected. It is a Grade 2, not a Grade 1. Grade 1 tumors typically can be completely removed, and if the seizures go away, the patient is considered cured. Grade 2 tumors are more likely to come back.
It is possible that the neurosurgeon got all the tumor, and if he did, it will not come back. But if he missed just one tiny cell, it will multiply, and it is likely to come back with a vengeance. If it comes back, we will hope surgery is a possibility again (it depends on where in the brain), and at that point she will also need chemo and radiation.
As God would have it, Aggie's neurosurgen happens to be one of the best on the planet, and he also happens to be one of the very few who has ever worked with her particular type of tumor. (Her chances of having this kind were literally one in a million.) Even he has never worked with a child with this kind of tumor, so in short, her long term prognosis is uncertain. She will continue to need MRIs every six months. If nothing comes back in the next ten years, she will be considered cured.
So I only have to hold my breath for ten more years!
We have healthy, happy Aggie back, but the shadow still lingers over our home. And we have learned that we just can't live holding our breath all the time. We have been living with a threat like this with epilepsy- just because it has changed its name to 'tumor' doesn't mean it needs to be scarier. So Aggie is mortal and we don't know her future. The same can be said of any of the kids, really. God is in control- it is not our job to know what lies ahead but to do the works of love he has given us today.
We still hear the thunder rumbling in the distance a little bit, and we are not quite sure if it's the storm leaving or another one coming.... but for now, we will thank the Lord for the sunshine.
God has been faithful to carry us this far. He will be faithful, no matter what the future.
Friday, July 24, 2009
What do you do with seizure free days?
Aggie has no shortage of ideas!
Last night we went bowling! She and Lorraine had fun. Lorraine gets the idea... Aggie hurls her ball down, then runs to the ball return to wait for it to come back. She doesn't seem to care how many pins she gets- but she CRACKS UP every time the ball comes back!
That Aggie smile is such a wonderful thing!
Wednesday after having lunch with the Ladies Aid the girls got to play in the rain! 
Aggie loves her cards, gifts, and good wishes from everyone! And I think Lorraine has it pretty good too.. she gets to share some of the goodies without the hassle of the surgery!9 days seizure free and we are thanking God for each one of them!
I waited patiently for the Lord; he inclined to me and heard my cry.
He lifted me out of the slimy pit, out of the mud and mire;
he set my feet on a rock and gave me a firm place to stand.
He put a new song in my mouth, a hymn of praise to our God.
Many will see and fear the Lord and put their trust in Him.
Psalm 40:1-3
Tuesday, July 21, 2009
back home again!
It is SO nice to be home! TO sleep in our own beds, to smell the flowers and the cows instead of the fumes of the city! We were welcomed home with signs, balloons, and gifts of all kinds- it is great to be so loved and missed!
It is now 830am and my house is quiet... is this what normal homes are like? Obviously Marcus is still away (so is Seth)- the other kids are actually sleeping in!
Aggie is still doing great. Yesterday she and Lorraine were running and playing, dancing, even jumping on the beds (until I caught them that is!) We all kind of cringe to see her so active with that big scar on her head, but she hasn't complained about it at all!
Still no seizures so far.... though I can't say that means the anxiety is gone. Actually it takes several months of seizure freedom, followed by a normal EEG, to say she is really cured of epilepsy. (They think it is 65-70% likely in her case) Of course we hope and pray that the tumor was the culprit, but it may have been just one factor. If her seizures do return however, chances are better that they will be controllable by medicine now that the tumor is out.
Regardless, she has greatly improved, and we are definitely enjoying these seizure- free days! The boys will return at the end of the week with Grammy and Bump (we wanted to give her a few more days to recover before bringing THAT kind of energy into this house!) Lorraine is back home and we are enjoying a visit from my parents until tomorrow.
We met another for year old with epilepsy at the hospital- when he was a baby his parents were told he would never get out of a crib, never walk or go to school or play like a normal child. These parents researched everything, and traveled several days to meet with the best surgeon on the planet (the one Aggie had) and had his temporal lobe removed. He is now doing fantastic, only a little bit behind developmentally, but otherwise tremendously improved. When we were checking out of the Ronald McDonald house the other day, the manager told me that a new family had just checked in: they have four children under the age of six- three with epilepsy. And we thought we had it rough! But Cleveland is a place of miracles... I pray they find theirs too!
It is now 830am and my house is quiet... is this what normal homes are like? Obviously Marcus is still away (so is Seth)- the other kids are actually sleeping in!
Aggie is still doing great. Yesterday she and Lorraine were running and playing, dancing, even jumping on the beds (until I caught them that is!) We all kind of cringe to see her so active with that big scar on her head, but she hasn't complained about it at all!
Still no seizures so far.... though I can't say that means the anxiety is gone. Actually it takes several months of seizure freedom, followed by a normal EEG, to say she is really cured of epilepsy. (They think it is 65-70% likely in her case) Of course we hope and pray that the tumor was the culprit, but it may have been just one factor. If her seizures do return however, chances are better that they will be controllable by medicine now that the tumor is out.
Regardless, she has greatly improved, and we are definitely enjoying these seizure- free days! The boys will return at the end of the week with Grammy and Bump (we wanted to give her a few more days to recover before bringing THAT kind of energy into this house!) Lorraine is back home and we are enjoying a visit from my parents until tomorrow.
We met another for year old with epilepsy at the hospital- when he was a baby his parents were told he would never get out of a crib, never walk or go to school or play like a normal child. These parents researched everything, and traveled several days to meet with the best surgeon on the planet (the one Aggie had) and had his temporal lobe removed. He is now doing fantastic, only a little bit behind developmentally, but otherwise tremendously improved. When we were checking out of the Ronald McDonald house the other day, the manager told me that a new family had just checked in: they have four children under the age of six- three with epilepsy. And we thought we had it rough! But Cleveland is a place of miracles... I pray they find theirs too!
Saturday, July 18, 2009
I am amazed!
My heart is bursting tonight! Aggie's in bed, tired after a day of NORMAL kid fun! We are already seeing behavioral improvements now that the tumor is gone! She is able to be more social, and she can hop on that left foot! And still.. no seizures!
Here she is napping in the van while we drove around town filling prescriptions and whatnot this afternoon. She certainly has some battle wounds. The ones on her head are from the clamp during surgery, and she has tons on her arms and legs from IVs and blood draws. I haven't counted because she won't sit still enough.. but I'm guessing she has at least twenty. We call them "polka dots" and she doens't seem to mind them at all.
When they let us go from the hospital I saw on her discharge papers "Activity restricitons: none." I said to the nurse, "Are you serious? She can really go on the playground, ride a bike, whatever?" She said "She sure can! Just don't let her rub mud on her wound!" So all we have to do is keep her from mud (and out of the water for six weeks)- other than that she can be a normal kid again!
We were blessed with some company today! We are sure looking forward to seeing everyone from home again soon!
Tonight Aggie and I played hide and seek for a good hour in the beautiful garden at the Ronald Mac Donald house. (Her wound is itching a little bit) I got to see that big Aggie smile dozens of time... and her eyes look almost normal again.
Here she is napping in the van while we drove around town filling prescriptions and whatnot this afternoon. She certainly has some battle wounds. The ones on her head are from the clamp during surgery, and she has tons on her arms and legs from IVs and blood draws. I haven't counted because she won't sit still enough.. but I'm guessing she has at least twenty. We call them "polka dots" and she doens't seem to mind them at all.
When they let us go from the hospital I saw on her discharge papers "Activity restricitons: none." I said to the nurse, "Are you serious? She can really go on the playground, ride a bike, whatever?" She said "She sure can! Just don't let her rub mud on her wound!" So all we have to do is keep her from mud (and out of the water for six weeks)- other than that she can be a normal kid again! 
We were blessed with some company today! We are sure looking forward to seeing everyone from home again soon! 
Tonight Aggie and I played hide and seek for a good hour in the beautiful garden at the Ronald Mac Donald house. (Her wound is itching a little bit) I got to see that big Aggie smile dozens of time... and her eyes look almost normal again.
There are no words to describe this joyful return to health... it is perhaps a foretaste of heaven, of the days when we will be reunited with loved ones in Christ, when death and sickness are distant memories, when He wipes away all of our tears.
freedom!
Here's Aggie becoming free of her last tube! I can hardly believe it but she is doing so well they are letting her leave today!
I think Eldon might be getting sick of the hospital too!
As soon as she was free of her wires she wanted to go down to the play room. She is hopping, skipping, even running! I keep saying "slow down kid, don't you realize you just had brain surgery?"
We are just waiting for the final discharge paperwork! We plan to stay in town one more night. We will let her play around at the Ronald MacDonald house this afternoon, and hopefully let her rest a little more (if we can talk her into it that is!) before the trip back to White Creek!
I think Eldon might be getting sick of the hospital too!
As soon as she was free of her wires she wanted to go down to the play room. She is hopping, skipping, even running! I keep saying "slow down kid, don't you realize you just had brain surgery?"
We are just waiting for the final discharge paperwork! We plan to stay in town one more night. We will let her play around at the Ronald MacDonald house this afternoon, and hopefully let her rest a little more (if we can talk her into it that is!) before the trip back to White Creek!
Friday, July 17, 2009
an even better day!
Aggie had a pretty good day today (friday.) No more IV drama- the one they put in last night is still working fine. I think today was her first day in quite a few days without a single painful medical procedure!
Here she is having a tea party. Bump was able to get quite a few laughs out of her!
Lorraine and Aggie eventually turned the tea party into a dog tea party- here they are lapping up some "tea" (water) and laughing their heads off!
Siblings are wonderful!
Here she is having a tea party. Bump was able to get quite a few laughs out of her!
Lorraine and Aggie eventually turned the tea party into a dog tea party- here they are lapping up some "tea" (water) and laughing their heads off!
Siblings are wonderful!
recovery beds
Snuggling my Aggie this afternoon in the hospital bed, made me think of another hospital bed, when I curled up with newborn Aggie, praising God for the miracle of life.
There was some pain mixed with the joy of that day. Aggie’s labor was definitely the hardest . My body ached from 11hrs of back labor with no drugs, and my heart ached for Josh who was in Iraq instead of there snuggling her with me.
When Aggie was born, the medical world that she was born into seemed almost irrelevant. I felt like really, I had done all the work getting her here. The midwife caught her and cleaned her up, and it seemed like that was about it. Most of the credit went to God who made her, and who made my body in such a way that it could keep her safe and fed while she grew, then get her out when she was ready.
And when it was over, I know every mother understands this feeling- I felt like we had just gone through the hardest thing ever, my little one and I … yet there in that recovery bed, it was nothing but the sweet smell of newborn skin, warm snuggles, relief, and the sleep of happy exhaustion.
In this bed, we also have exhaustion, joy and relief. The pains of brain surgery and everything that went with it were far greater than a mere eleven hours of labor. And so, the recovery will be slower, for my little one and for her mother.
This time, the world of medical professionals is anything but irrelevant. We lay here in an enormous hospital (19000 employees!) We have to be careful how we move in this recovery bed- there are wires everywhere- wires that help her care team monitor her heart, lungs, blood pressure, oxygen level, tubes that keep her hydrated and medicated as needed- wires and tubes that are making her recovery from epilepsy possible.
Fifty years ago, Aggie’s story would have been so much different. The technology that pinpointed the problem and made it possible for them to get the tumor out of her simply was not there. Fifty years ago, we would have had very little hope for her future. It is likely that we would have been helpless as she got progressively worse and finally died.
Here in this recovery bed, I do not feel responsible at all for the miracle that took place. I am praising God not for the way my body works, but for the way this hospital works, for the medical professionals of all kinds who devote their lives to research and healing. I am praising God for the gifts and skills he gave to these people, and for their willingness to use them to serve others. I am praising God for people who can handle giving screaming children IVs, emptying bedpans, and drilling into skulls, so that my baby can have a future.
There are different kinds of gifts, but the same Spirit. There are different kinds of service, but the same Lord. There are different kinds of working, but the same God works all of them in all men. I Cor 12 4-6
There was some pain mixed with the joy of that day. Aggie’s labor was definitely the hardest . My body ached from 11hrs of back labor with no drugs, and my heart ached for Josh who was in Iraq instead of there snuggling her with me.
When Aggie was born, the medical world that she was born into seemed almost irrelevant. I felt like really, I had done all the work getting her here. The midwife caught her and cleaned her up, and it seemed like that was about it. Most of the credit went to God who made her, and who made my body in such a way that it could keep her safe and fed while she grew, then get her out when she was ready.
And when it was over, I know every mother understands this feeling- I felt like we had just gone through the hardest thing ever, my little one and I … yet there in that recovery bed, it was nothing but the sweet smell of newborn skin, warm snuggles, relief, and the sleep of happy exhaustion.
In this bed, we also have exhaustion, joy and relief. The pains of brain surgery and everything that went with it were far greater than a mere eleven hours of labor. And so, the recovery will be slower, for my little one and for her mother.
This time, the world of medical professionals is anything but irrelevant. We lay here in an enormous hospital (19000 employees!) We have to be careful how we move in this recovery bed- there are wires everywhere- wires that help her care team monitor her heart, lungs, blood pressure, oxygen level, tubes that keep her hydrated and medicated as needed- wires and tubes that are making her recovery from epilepsy possible.
Fifty years ago, Aggie’s story would have been so much different. The technology that pinpointed the problem and made it possible for them to get the tumor out of her simply was not there. Fifty years ago, we would have had very little hope for her future. It is likely that we would have been helpless as she got progressively worse and finally died.
Here in this recovery bed, I do not feel responsible at all for the miracle that took place. I am praising God not for the way my body works, but for the way this hospital works, for the medical professionals of all kinds who devote their lives to research and healing. I am praising God for the gifts and skills he gave to these people, and for their willingness to use them to serve others. I am praising God for people who can handle giving screaming children IVs, emptying bedpans, and drilling into skulls, so that my baby can have a future.
There are different kinds of gifts, but the same Spirit. There are different kinds of service, but the same Lord. There are different kinds of working, but the same God works all of them in all men. I Cor 12 4-6
Friday update
Yesterday was another hard day, but better than the day before. She had to wait until 3 pm for her MRI. That made just about two days with no food and very little drink. Add to that some steroids (for inflammation), sedatives and the side effects... and you have one scowly little girl! Around 230 she just wanted mommy snuggles (she had strong opinions about exactly where I put my head, where I put each hand, and demanded that keep my eyes closed too.) She finally fell asleep right before they came to get her for the MRI. I asked patient transport if I could just stay in bed with her- so we rode together down to radiology! (Going down an elevator in bed is a very strange sensation!) She tried in vain to shoo everyone she saw out of the room and kept begging to play her computer games. They gave her some meds to calm her (again) and she finally gave up- saying "FINE mommy. I'll just never never never do the cake game again. Never never again." She fell asleep, but every few minutes woke up saying "never never never again."
It is nice to have Lorraine here. This is them watching Tom and Jerry and having Popsicles together. The smile is still forced... but it is a smile!
The nurses are so great here! This is Lorraine learning how to put the leads on her sister! (for monitoring heart, lungs, etc)
The neurosurgeon posse came in early this morning and removed her head wrap. Her hair is matted and gross, but it is still there! We are happy they didn't have to shave much of her head!
It is nice to have Lorraine here. This is them watching Tom and Jerry and having Popsicles together. The smile is still forced... but it is a smile!
The nurses are so great here! This is Lorraine learning how to put the leads on her sister! (for monitoring heart, lungs, etc) 
Aggie got moved out of ICU around 730 last night, down to a pediatric floor (a private room with more space, fewer tubes, and slightly less noise.) They let Lorraine ride in the bed with her to her new room too!
Of course they had to check her vitals again and get her all reattached to the monitors down there. She was SO ready for bed, but it seemed like the nurses kept needing to do just one more thing... I finally left around 930- I told her I was going back to the room to get a craft we could do together tomorrow (she had asked me to do crafts earlier in the day.) She said, "No mommy, I don't want to you go. You'll just have to do a craft ALL by YOURSELF. Humph."
Before long our feisty little girl seemed to settle down to sleep. Just when the nurse and Josh let their guard down, she sat straight up in bed and ripped the IV port out of her ankle. What followed will probably be known by the nurses and all the patients on the floor as THE GREAT IV WAR OF 2009. Josh called me around 11pm hoping my voice would help soothe her out of hysterics. It eventually did, and she slept the rest of the night.
The neurosurgeon posse came in early this morning and removed her head wrap. Her hair is matted and gross, but it is still there! We are happy they didn't have to shave much of her head!
And now, here's the picture you've all been waiting for....
Lorraine sure went white this morning when she saw this! But it's really not too bad considering what they did!
Lorraine sure went white this morning when she saw this! But it's really not too bad considering what they did!
She got out of bed, got cleaned up and dressed, and is now watching a movie with her sister. She is really tired and glassy-eyed, so we keep watching those eyes and thinking we just saw a seizure... but so far, not a single one!
Thursday, July 16, 2009
ornery!
"You can leave now."
Aggie dismissed her neurosurgeon with those words this morning. She is just plain ornery. Of course, she hasn't eaten in two days (they still won't let her because she is waiting to get her MRI). She's sick of her bed, sick of her IVS, sick of this room. She even took a swing at me once.. followed by an "I'm sorry mama!" and a meltdown!
But this is a good sign! It's spunk! And no seizures so far!
Thank you for your prayers- she got fantastic sleep last night and is no longer hallucinating (it was the meds thank God.) If she ever gets this stinkin MRI done, she will then be transferred out of ICU to a more comfortable room, where we plan to shower her with love and give her all the chocolate milk and pancakes she can take.
Wednesday, July 15, 2009
prary for rest...
Aggie is finally resting and has been for almost an hour now.
She had a rough time since she got out of surgery- we are not sure if it was pain, anxiety, or some sort of reaction to the anesthesia. Whatever her problem was also included hallucinations. She would talk to us some, but more often cried out saying things we couldn't understand, reaching for things, in general just plain not happy. She'd sleep for no more than five minutes at a stretch then do it all over again.
Her vitals are good, her body seems to be working as it should otherwise. We are hoping the problems are all related to the drugs.
We are breathing much easier now that the surgery is over, but we are still waiting to see what happens with her seizures. Time will tell.
Despite her unrest this afternoon, somehow she still seemed to get out one "chicken butt." Our funny little Aggie is still in there... she just needs some help through this rough spot in her recovery. Please pray for rest and peace for her tonight. Maybe tomorrow we will see that big Aggie smile again.
She had a rough time since she got out of surgery- we are not sure if it was pain, anxiety, or some sort of reaction to the anesthesia. Whatever her problem was also included hallucinations. She would talk to us some, but more often cried out saying things we couldn't understand, reaching for things, in general just plain not happy. She'd sleep for no more than five minutes at a stretch then do it all over again.
Her vitals are good, her body seems to be working as it should otherwise. We are hoping the problems are all related to the drugs.
We are breathing much easier now that the surgery is over, but we are still waiting to see what happens with her seizures. Time will tell.
Despite her unrest this afternoon, somehow she still seemed to get out one "chicken butt." Our funny little Aggie is still in there... she just needs some help through this rough spot in her recovery. Please pray for rest and peace for her tonight. Maybe tomorrow we will see that big Aggie smile again.
She's out!
Aggie is out of surgery and in ICU- they got all the tumor- more later, need to snuggle her!
She's in surgery!
Aggie and Dr. Bear, waiting for the fun to start! The doctor was kind this morning- she listened to Aggie's heart, then Dr. Bear's heart, and reassured them that they were both ready for surgery!
Aggie looooooves her daddy! And her mommy, and her "little Eldie Eldie - he's a cutie baby cuties baby cute!" She reeeeeally liked her "pre-medicine" this morning!
She was taken in to the OR at 830 this morning for prep and anesthesia. Surgery began at 10:06. Now we wait. They gave us a pager so they can update us every hour or two- we expect the surgery itself to be at least 4 1/2hrs.
Aggie looooooves her daddy! And her mommy, and her "little Eldie Eldie - he's a cutie baby cuties baby cute!" She reeeeeally liked her "pre-medicine" this morning!
She was taken in to the OR at 830 this morning for prep and anesthesia. Surgery began at 10:06. Now we wait. They gave us a pager so they can update us every hour or two- we expect the surgery itself to be at least 4 1/2hrs.
We're praying for you little Peter Pan!
Please pray with me
I have no fancy words for this morning, only a cry from a mother's heart:
I know she's Yours, Lord.... but please don't take her.
I know she's Yours, Lord.... but please don't take her.
Tuesday, July 14, 2009
the last night of normal
Tomorrow will definitely be one of those days we mark time by- this will be our last day "before Aggie's brain surgery-" everything else will be in terms of "after Aggies brain surgery."
How do you spend the last night of normal before brain surgery?
We took Aggie on a walk to the lake this afternoon. We let her run around a bit, and I gave her a good (last?) wrestling match. We had a feast later in the hotel room: fried chicken and chocolate milk and a good amount of candy. We were blessed with company too- Mary Anne, Annette, Grammy and Bump and Lorraine came late this evening. They got to squeeze in a few last tickles and snuggles and hugs and even brought Aggie some cotton candy from the fair!
I can't help but notice- She doesn't feel the weight of these moments. She has no desire to soak up these experiences, to store them away somewhere just in case things never go back to normal. She's not breathing in the fresh air deep enough- not enjoying her last evening with hair like I would if I were her. She is just being a kid- bouncing from one thing to the next, going on as normal and taking those every day blessings- the sunshine, the wind in her hair, the running and playing- for granted.
She knows what is coming tomorrow, yet she is sleeping soundly. And why should she worry? God who gave her joy in the sunshine today will hold her close in the valley tomorrow.
How do you spend the last night of normal before brain surgery?
We took Aggie on a walk to the lake this afternoon. We let her run around a bit, and I gave her a good (last?) wrestling match. We had a feast later in the hotel room: fried chicken and chocolate milk and a good amount of candy. We were blessed with company too- Mary Anne, Annette, Grammy and Bump and Lorraine came late this evening. They got to squeeze in a few last tickles and snuggles and hugs and even brought Aggie some cotton candy from the fair!
I can't help but notice- She doesn't feel the weight of these moments. She has no desire to soak up these experiences, to store them away somewhere just in case things never go back to normal. She's not breathing in the fresh air deep enough- not enjoying her last evening with hair like I would if I were her. She is just being a kid- bouncing from one thing to the next, going on as normal and taking those every day blessings- the sunshine, the wind in her hair, the running and playing- for granted.
She knows what is coming tomorrow, yet she is sleeping soundly. And why should she worry? God who gave her joy in the sunshine today will hold her close in the valley tomorrow.
it's a go!
It's official- the surgery is on for tomorrow morning. We will come at 7am, sedation at 830am, and the surgery will take 3-4 hours.
Here is Aggie getting the "sticky things" on her head- they are guides for the surgeon and the MRI people. She is getting her MRI done now.
She got to watch Tom and Jerry during this part so she was happy as can be! Tonight we just plan to spoil her a little :)
Here is Aggie getting the "sticky things" on her head- they are guides for the surgeon and the MRI people. She is getting her MRI done now.
She got to watch Tom and Jerry during this part so she was happy as can be! Tonight we just plan to spoil her a little :)
She sure is a trooper!
Lord dismiss us with thy blessing
Lord dismiss us with thy blessing
Fill our hearts with joy and peace
Let us each thy love confessing
Triumph in redeeming grace
Oh, refresh us
Oh, refresh us
Traveling through this wilderness!
Monday, July 13, 2009
our shield
As we were going up the elevator to our first appointment this morning Aggie said, "When will we get some cotton candy?" I thought she was just being goofy, but Josh said "she thinks we are still going to the fair."
(Ok honey that's not what I needed to hear right before we go to hear the details of your surgery! I'm having a hard enough time keeping the tears back!)
"There's an owie in Aggie's head that causes her seizures, and the doctors are going to fix it."
That's what we are telling her and the other kids... and really I would probably be just fine knowing only those details too! But we got the meat of it from the surgeon today, and it was actually less stressful then I thought it would be. (Maybe because I've been having ugly visions of brain surgery since last October? ) They are going in right above her ear on the right side. They think they can get the entire tumor without causing damage... and the seem optimistic that this will stop her seizures, though it is not a guarantee. Recovery will take at least a week, one night in the ICU, followed by an MRI, followed by recovery in another area of the hospital, then home with some activity restrictions for several weeks -no swimming! :( and minimal rough-housing- anyone who knows how crazy our house is knows what kind of a challenge that will be!
We left at 6am to get to Cleveland this morning. Here is Aggie sleeping in the van (she actually slept until 830!)
She finds rest and comfort in the little things: her pillow, her blanket, her buddies... I am finding some rest and comfort in this Word from God:
He is our shield. 
(Ok honey that's not what I needed to hear right before we go to hear the details of your surgery! I'm having a hard enough time keeping the tears back!)
"There's an owie in Aggie's head that causes her seizures, and the doctors are going to fix it."
That's what we are telling her and the other kids... and really I would probably be just fine knowing only those details too! But we got the meat of it from the surgeon today, and it was actually less stressful then I thought it would be. (Maybe because I've been having ugly visions of brain surgery since last October? ) They are going in right above her ear on the right side. They think they can get the entire tumor without causing damage... and the seem optimistic that this will stop her seizures, though it is not a guarantee. Recovery will take at least a week, one night in the ICU, followed by an MRI, followed by recovery in another area of the hospital, then home with some activity restrictions for several weeks -no swimming! :( and minimal rough-housing- anyone who knows how crazy our house is knows what kind of a challenge that will be!
We left at 6am to get to Cleveland this morning. Here is Aggie sleeping in the van (she actually slept until 830!)
She finds rest and comfort in the little things: her pillow, her blanket, her buddies... I am finding some rest and comfort in this Word from God:
He is our shield. Lord, shield me tonight from fear and worry, from anxiety about Aggie's future, from grief about her condition, from sadness about being away from the other kids. Fill my heart with hope for the future, faith in You, confidence in Your love for us. Give me rest and peace tonight, and equip me to do the works of love that you have prepared for me tomorrow. Hold us close to you Lord.
I ask this not only for myself but also for Aggie, for her daddy, for the other kids, and for all our dear friends who share this burden with us. Amen.
quick update-
I am trying to keep this short- I have an excited toddler waiting for me to come join her in the pool here at Holiday Inn in Cleveland.
We met with the neurosurgeon today- we are reassured and hopeful, and if all goes well the surgery will be Wednesday or Thursday this week. She has to have another MRI the day before so that they can do some mapping, so that is scheduled for tomorrow afternoon- tentatively, assuming things fall into place for surgery wednesday. (if not, thursday, if not thursday, next week.) It sounds like other than the normal risks of brain surgery, the biggest concern this doctor has is her peripheral vision in her left eye- she may lose a small bit of it in the lower corner, but probably won't even notice it.
So we're moving forward, hoping for a call from the Ronald Mac Donald house (there's a waiting list), and in the meantime- we are going to go for a swim! More later!
We met with the neurosurgeon today- we are reassured and hopeful, and if all goes well the surgery will be Wednesday or Thursday this week. She has to have another MRI the day before so that they can do some mapping, so that is scheduled for tomorrow afternoon- tentatively, assuming things fall into place for surgery wednesday. (if not, thursday, if not thursday, next week.) It sounds like other than the normal risks of brain surgery, the biggest concern this doctor has is her peripheral vision in her left eye- she may lose a small bit of it in the lower corner, but probably won't even notice it.
So we're moving forward, hoping for a call from the Ronald Mac Donald house (there's a waiting list), and in the meantime- we are going to go for a swim! More later!
Sunday, July 12, 2009
hanging in there...
We got out of the hospital as planned on Friday night- stayed at the hotel before the drive home. An extra blessing there- they gave us a free upgrade to a suite with an in room jacuzzi- Aggie LOVED it- she took at least an hour bath that night, then another in the morning before we left. She felt so good to be unhooked from everything!
We are in Hastings now, heading back to Cleveland tomorrow (Monday) morning for our appt with the neurosurgeon at noon. THEN we will finally know the date of surgery. We are hoping and praying it is SOON- this in between time is pretty stressful and exhausting. It is amazing how much energy it takes just to hold my insides together...
So tomorrow at 6am we hop back in the van to head to Cleveland- where there is not only hope for our Aggie, but also high speed internet! I will post again as soon as I know anything! Please keep praying - that all the details will fall into place- that surgery can be soon- that God upholds us as we wait!
God has been faithful to us and will continue to be faithful.
We are in Hastings now, heading back to Cleveland tomorrow (Monday) morning for our appt with the neurosurgeon at noon. THEN we will finally know the date of surgery. We are hoping and praying it is SOON- this in between time is pretty stressful and exhausting. It is amazing how much energy it takes just to hold my insides together...
So tomorrow at 6am we hop back in the van to head to Cleveland- where there is not only hope for our Aggie, but also high speed internet! I will post again as soon as I know anything! Please keep praying - that all the details will fall into place- that surgery can be soon- that God upholds us as we wait!
God has been faithful to us and will continue to be faithful.
Friday, July 10, 2009
a rough morning
Though I got a pretty good night's sleep, it is noon and I am whipped. This morning started with small clusters, followed by another large cluster that stopped only seconds before they gave her the resuce med- just like yesterday, except this time she lost bladder control. (that's the first time that has happened.) When she came out of it she was VERY upset about being wet.
After we got her cleaned up, they had to put more lotion on her EEG leads and reapply some of them. To Aggie- pure torture. She screamed and screamed again, though they say it shouldn't hurt, we are not sure if she is just afraid or if she is extra sensitive (due to the seizures). They apply the lotion or whatever it is with a huge syringe that goes in the leads (not in her at all) so it looks like they are coming at her with a giant needle and stabbing her repeatedly in the head.
THEN they had to prep her for the PET scan- and this time the IV needed to be in place before she was sedated. To Aggie- more torture. And not just a little- they could not get it. Two attempts by one nurse, a blown vein, two more attempts by another nurse... still they could not get it. They ended up just taking her down without it in, hoping someone down there can get the job done. Because Eldon is so unpredictable, Josh is the one staying with her for the test... which of course gives me some time for a pity party and maybe a nap. It is nice to have a baby to snuggle!
This is what it looks like without the wrap (they only put the wrap on so that kids will not try to mess with the wires.) She was pretty whipped by this point, but still trying to be brave!
Things are going to get better here pretty soon... Aggie is probably happily passed out by now, and after she wakes up they will unhook her and let us go! (hopefully before it is dark tonight!) We are staying in the hotel tonight, depending on how she's doing we may go out to eat or let her buy a toy or something special. It is going to get better.... It may get worse before it gets better, but it is going to get better!
After we got her cleaned up, they had to put more lotion on her EEG leads and reapply some of them. To Aggie- pure torture. She screamed and screamed again, though they say it shouldn't hurt, we are not sure if she is just afraid or if she is extra sensitive (due to the seizures). They apply the lotion or whatever it is with a huge syringe that goes in the leads (not in her at all) so it looks like they are coming at her with a giant needle and stabbing her repeatedly in the head.
THEN they had to prep her for the PET scan- and this time the IV needed to be in place before she was sedated. To Aggie- more torture. And not just a little- they could not get it. Two attempts by one nurse, a blown vein, two more attempts by another nurse... still they could not get it. They ended up just taking her down without it in, hoping someone down there can get the job done. Because Eldon is so unpredictable, Josh is the one staying with her for the test... which of course gives me some time for a pity party and maybe a nap. It is nice to have a baby to snuggle!
This is what it looks like without the wrap (they only put the wrap on so that kids will not try to mess with the wires.) She was pretty whipped by this point, but still trying to be brave!
Things are going to get better here pretty soon... Aggie is probably happily passed out by now, and after she wakes up they will unhook her and let us go! (hopefully before it is dark tonight!) We are staying in the hotel tonight, depending on how she's doing we may go out to eat or let her buy a toy or something special. It is going to get better.... It may get worse before it gets better, but it is going to get better!
Eldon and I are going to go get some lunch now!
Thursday, July 9, 2009
making it fun!
This afternoon and evening have been quite light seizure wise.... which means Aggie for the first time had the energy to cause a little trouble! She is just getting sick of this room, sick of her bed, sick of being attached to all those wires!
Here's Aggie doing crafts- her bumble bee is hanging on the wall by the TV so she can see it!
One of the nurses gave Cruious George a "silly hat" so that he could look like Aggie! I thank God for the medical professionals who work every day in this place of sadness and still are able to find ways to bring pieces of joy to the kids here! 
Here's Aggie teasing her daddy- calling him the "big bad wolf." And I can't tell you how many times Aggie has said to me and others "Guess what?" What? "CHICKEN BUTT! hahahahahaha!" Leave it to Aggie to make a party wherever she is! Aggie was supposed to have her PET scan today, but there was some confusion with the scheduling so she will have it tomorrow. She had her neuro-psych consult today so that can establish some sort of baseline to compare with however she is six months post surgery. They interviewed tired and pathetic Aggie (not to mention Aggie low on sleep and high on seizures) but that's the one we had to work with at the moment!
Tonight I am on the night shift at the hospital with Aggie. Tomorrow morning she will have to fast for her PET scan at noon. We are hoping to be discharged after that. She will be so relieved to get those things off her head! We will likely return to Michigan for the weekend and come back for surgery- but we probably will not know the actual date until Tuesday!
It looks like this will be a "fair week" we will never forget- though we won't be spending it at the fair!
the monitor
This is the TV screen in our room - video of Aggie with the EEG in the background. This is also what they see at the nurses station, and the entire thing is being filmed (audio and video).
When we see her have a seizure we push a button- this marks the video and also signals all the nurses to come in case there is a problem.
Do you see the darker areas on the screen above, where the lines go up and down really fast and make a big black spot? Apparently that is her brain getting excited- at that moment she was in the middle of an argument with her daddy "NOOOO daddy- I AM PETER PAN! You are the crocodile!"
Videos from yesterday
Aggie chatting with me yesterday. She does like having at least one of her little playmates here with her!
Today we are just waiting... waiting for the doctors to tell us what is next. She will still have to have a PET scan and a neuro-psych consult at some point, then surgery sometime next week. We are waiting to see when those things will be and will make plans from there. We are having no problems getting seizures on record, including the nasty ones. The one she had this morning was so nasty they gave her oxygen. They were about to give the rescue medicine when she came out of it.
I asked her doctor if there is anything else we need to do for her before surgery to keep her safe (nighttime monitors, etc), and she said "No- just enjoy her. You can't fix her, but we will."
I sure do like how that sounds.
traveling part 2
We stayed at the Cooks Sunday night and got to see some of Josh's siblings and the little cousins. It was a normal night for the kids: While I tried to make sure Aggie didn't fall off the trampoline and Marcus didn't fall into the river, Seth got in a scooter wreck and was stung by a bee! (He's fine!) I wonder if a body ever runs out of adrenaline? Mine has to be about used up!
Soon it was time for goodbyes... 
Lorraine, Seth, and Marcus are staying with Grammy and Bump for now. As busy as we are at the hospital with Aggie and Eldon, we sure miss our other three!
The kids spent the evening eating marshmallows and getting filthy, and so went to bed exhausted and happy.
Soon it was time for goodbyes...
Lorraine, Seth, and Marcus are staying with Grammy and Bump for now. As busy as we are at the hospital with Aggie and Eldon, we sure miss our other three!
It always amazes me how my arms just ache for the children that are away!
Don't worry Marcus, we will be back for you soon! (I like to pretend that's what he was sad about, not that we made him put down his snack to take a picture!)
Don't worry Marcus, we will be back for you soon! (I like to pretend that's what he was sad about, not that we made him put down his snack to take a picture!)
traveling adventures
I intended to post these pictures sooner but better late than never!
Last Sunday we were sent off with lots of love, gifts and prayers from our White Creek family! The drive to Michigan was actually quite smooth. We stopped in Coldwater to stretch our legs and met some old friends from our other church family (oops, I didn't mean to imply that you are OLD Julie!!)
Julie brought snacks and even Christmas presents for the kids!
We were so happy to see Eveline and Diane too!
Marcus was a little shy....
The kids got to run around the park a little bit too. All in all the trip to MI was not so bad- perhaps we are becoming better travelers?
We are blessed to have so many family members and friends who love us and help us bear our burdens.
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