Mar 31, 2008

Ethan - The final installment

I will admit, I have been procrastinating writing this last post about Ethan. It is NOT because he isn't doing well, He is .. It is not because I haven't enjoyed the comments from you, I have .. It is because I have ENJOYED writing about my baby and remembering these last four years and I kinda do not want to let go. Strange huh? I have NOT sat down and taken it all in.

I don't ever want to forget. NEVER! God taught me so much these last 4 1/2 years and He is NOT done. He has opened doors because of our experience and I will admit I am a little scared. BUT GOD!

Ethan is doing so well!

He had the surgery July 13, 2007 in Dallas and things went so well, it was weird. We got to the hospital at 6am and our church family was right there waiting for us to pray. So was Dr. Wright. Remember the lady I told you we met at church after DeClan's dedication? She was there and she told me God is in the room, Jesus is already here and Ethan will be alright. Ya'll she HAD the voice of God. I have seen her many times since the surgery and her voice is not as deep as it was that day. She was right .. Jesus was already at the hospital waiting for us. (Chills)

The surgeon came in a gave us the "lowdown" on the whatifs and whatnots about Ethan. He gave a very vivid description of where he could cut, where he would open and how deep they would have to go in to get some of the tumor out. He always said he knew he could not get it all, but he would try to get as much of it as possible.

He also told us that Ethan's tumor had grown even more and that it had begun to press against his brain stem and today July 13 HAD TO BE THE DAY or there would so much more damage. oooooo, I want to cry right now. Jesus!!!!

The anesthesiologist came in and described what she would do for Ethan and how everything should go. D and I were numb, so numb. She left and we prayed with Ethan ONE .... MORE .. TIME ... and then they wheeled my baby down this long hallway .. Only Jesus, the healer could perform a miracle at that moment.

We were told we would be kept informed every hour and it would be a long day. By 1:30, they called to tell us the surgery was done and they got most of the tumor out! What? It is over? We spoke to the surgeon, he explained what happened and for the very first time, he smiled. Oh sweet Jesus, he smiled.

We saw Ethan for a short time in recovery. He looked good! No shaved head! He knew who I was! He wanted water! He looked good! They moved him into ICU and D and I did not leave his side, until my sister called to tell me, Austin had a fever. huh? Yeah! I had to go home and tend to him. It was good for D, because he was able to "take over" and take care of his firstborn son.

Before we knew it, Ethan was moved into a regular room and enlisted for physical therapy, which by the grace of God, he only needed 1 session. Did ya hear me? One session. They canceled the outside sessions.

Ethan went home in 4 days and we huddled over him like hawks. He kept a headache for a week or so, but eventually he came into his own and was back on the saddle again.

He started school in August ON TIME and he is doing VERY WELL! We are working on his comprehension and reasoning skills, but God is sooo good! His health is great and he will have MRI's every 3 months. His memory appears to be in tact.

Because of Ethan's brain tumor and the life he has had for the last 4 1/2 years, these wonderful, precious people gave Ethan this and we are headed there this summer! This is a wonderful gift! I believe God is giving us a new ministry to work with as a FAMILY.

God is also giving us a book to write from this journey so we can help other families who need somewhere to turn for support and/or information.

We are SO grateful to God for what He did. Sometimes it feels like we CANNOT praise Him enough for what He did!!!!!! We thank Him daily.

I so appreciate the time you have spent with me this last month. I pray you have been blessed by Ethan's journey and what GOD did, not US, but God.

Please come back by soon ...... You never know what God is up to!

Mar 29, 2008

I love music, but I really love words, meaningful words to music. It is something about meaningful words for songs to the Lord.

My song for today is by Larnelle Harris. This time the song is singing to me from God. In the hurriedness of my days, I admit I do not spend as much time with the Lord as I should. This songs speaks and reminds me to STOP and spend some time with my Lord.

"I miss my time with you"

There He was just waiting, in our old familiar place
an empty spot beside Him,
where once I used to wait
to be filled with strength and wisdom
for the battles of the day
I would have passed him by again if i didn't hear Him say

I miss my time with you
those moments together
I need to be with you each day
and it hurt's Me when you say you're too busy
busy trying to serve Me
but how can you serve Me when your spirit's empty
there's a longing in my heart wanting more than just a part of you
it's true I miss My time with you

What do I have to offer
how can I truly care
my efforts have no meaning
when your presence isn't there
but You will provide the power
if I take time to pray
I'll stay right here beside him
and You will never have to say


I miss my time with you
those moments together
I need to be with you each day
and it hurt's Me when you say you're too busy
busy trying to serve Me
but how can you serve Me when your spirit's empty
there's a longing in my heart wanting more than just a part of you
it's true I miss My time with you

Mar 28, 2008

Volcanos ... it's what for lunch ..

I prepared lunch for my youngest two sons today. An exotic menu of pasta and fruit, because we like to live dangerously around here. Austin eats through his first serving in 2 minutes and bellows from the table .. "Mooooommm, could I have some more Fettuccine Volcano please?"

I'm sure you know he means Alfredo, although I am NOT particularly proud that we could have used the noodles for a volcano project. They were tooo gummy to me.

You think he was trying to tell me something?

I try to make every opportunity an educational experience ...

Mar 26, 2008

Will somebody tell my body Spring Break is OVER?

We've been home since Saturday. We got home mid-morning, ate breakfast and CRASHED for 2 1/2 hours.... Ok, perhaps 4 hours. We got up and attended the Saturday evening services at our church for Easter (which was wonderful!) and came home to sleep some more.

I have unpacked 2 out of 4 suitcases and washed clothes so people in my house could have clean items to dry off with and have clothes to wear to work and school, but major laundry ... I am waiting until the pile gets really high. (sigh)

Someone at my church blessed me with a $500 makeover opportunity and I spent Monday evening getting a "redo" ... clothes included!!!!! (I'll blog more on this later, when my "after" is closer to BRAVO's Tim Gunn perfection! (SMILE) I had a BLAST and learned a lot about fashion, staple items, beauty tips that don't cost a lot and what MY body shape should really wear. I even had my eyebrows arched! For the first time .. ever ... in my life .. and I am almost 40 .. yeah I know, 40!

Tuesday morning I attended bible study where I presented Ethan's entire brain tumor journey. I was SO nervous, BUT GOD guided me through. I pray women were blessed by what God did in our lives! Ethan joined the children's choir and they had practice last night since they will be singing Sunday ... two services ... on my wedding anniversary ...

And today ... I HAVE to buy groceries. I bought just enough before we left to last until we left for vacation. I shudda though more about what happens when we get home ... hehehe

and so ... I need a few more days .. just a few more days .... I will be back later this weekend for the final installment about my baby ... ETHAN.

Mar 16, 2008

I'll be back soon ...

I am taking a break for a week or so ... we are Spring breaking it!

I would love to post some really inspiring, thought provoking entries while I am gone, but frankly I am all worn out from the 12 hour drive with three boys ....

M_I_C_K_E_Y M_O_U_S_E EEEEE .... see ya real soon ....

Mar 13, 2008

Ethan - Part 11

June was upon us before we knew it. I was all over the map emotionally. I started blogging more and one day wrote this.

June 19 - We were now faced with a very difficult decision, who would perform Ethan's surgery and where would we go? The date had been set by our surgeon, but we wanted to be sure. REAL SURE. We had appealed and consulted with so many. After prayer, speaking to our pastor and more prayer, God revealed and confirmed .... Children's Hospital, Dallas. Dr. Bradley Weprin.

That weekend, God "showed out" and did this.

God also gave us our 72 hour prayer for Ethan. He was prayed for a day before, the day of and the day after every hour for 72 hours by people ALL OVER THE WORLD!!!!!!!!!

Our God IS an awesome God!

Mar 12, 2008

Ethan - Part 10

There were many days after the surgeon told me that surgery would be around the corner for Ethan that I was numb, just numb. It certainly did not help that I was 9 months pregnant, very emotional, Thanksgiving and Christmas were around the corner as well as the annivesary of the deaths of my parents. (Thanksgiving my mom, Christmas my dad).

I realized I would have to get out of this FUNK and LIVE life.

So I "manned up", sucked it in and moved forward slowly and took each day a day at a time. We enjoyed the holiday season and before we knew it, it was 2007 and time to face the music. After speaking with a few of the professionals working with Ethan, we decided to speak to our "other opinions" and delay the surgery.

In January of every year my church has a time we call Solemn Assembly where we fast and pray for one week. D and I always participate and last year was no different, but this time our prayers were different. More detailed. More specific. More open. More honest. Not that we had not been honest in the past, but I know I really came clean and laid it ALL on the alter. I did not hold back or try to make my prayers pretty, I just prayed and prayed and prayed.

God began to answer our prayers about the decisions that lie ahead. These are the doctors we have consulted with during Ethan's journey. When you work with these teams, you have to send current MRI scans, doctor's notes, and a suggested donation to the research foundations for review and consultation of the information. A small price to pay for very valuable information from VERY highly respected pediatric physicians and surgeons.

Ben Carson - Johns Hopkins
Keith Black - Cedar Siani
Hrayr K. Shahinian - The Skull Base Institute
Baylor - Texas
Neurosurgeons for Children -Texas
Vanderbilt - Tennessee

Guess what? Everybody said the same thing. The surgery was needed, but it did not have to be "today". There were differing opinons about when and where, but all agreed it would be necessary, especially if Ethan's tumor continued to grow. We would have to watch him closely.

Ethan's MRI in February revealed a little growth, and by May even more growth and time to move forward with the surgery. The date was set Friday, July 13, 2007.

Mar 10, 2008

Ethan - Part 9 ..

October 2006, early afternoon.
I gathered Ethan and Austin to go get the results for Ethan's MRI. I planned to take the boys to Chuck E. Cheese after the what had become routine follow ups with Dr. Bradley. D wanted to go with us, but I told him it would be okay and it wasn't worth him taking a day off to be in the doctor's office for 15 minutes.

We arrived at the hospital, valet parked (I am 8 months prego by now) stopped to look at the train display and took the elevator up to see the surgeon. We were called back very quickly and told to take a seat in the office.

Dr. Bradley came in, spoke to Ethan, turned on the light on his desk, put the scans on the screen, sat down, turned around to me and said .. " we have a problem. " He reminded me about our first visit with him 3 years prior that if at any time the tumor grew or moved, the recommendation would change from wait to let's get this thing out. I told him I remembered that conversation unfortunately, very well.

The main reason they did not take the tumor out when Ethan was initially diagnosed in June 2006 was because of the location. It was deep inside his brain, near the brain stem. They couldn't even test the mass to see if it was cancerous because of the location. The surgeons said that it was too risky to go in and that they would control the seizures with medicine. To do anything different would endanger Ethan's quality of life.

Their biggest concerns for my then 6 year old son were memory loss, some vision loss, paralysis and speech issues. It was better to try and get him seizure free than operate. Dr. Bradley had always maintained that if the tumor started to grow at any time, he would move forward with the surgery. If we waited to too long, he may not be able to perform surgery at all.

He said, we are at that point right now. I could not move. What did you say? He repeated, we are at that point. Ethan's tumor has grown and we are now at a point where we have to take it out. Has he had any seizures? No, I said. Blurred vision? No, I said. Headaches? No, I said. To everything he asked me, NO was my answer.

I could not believe we were at this point. Ethan had NOT had a seizure in a year and a half. He was doing better than ever in school. He was playing basketball. He was asking a ton of questions about things. He was HAPPY! NOTHING on the outside demonstrated his tumor was growing. ooooohhhh, but on the inside a storm was brewing.

I cried and tried to stop because Ethan had no clue. All he knew was that his mommy was falling apart. I didn't want to scare him. Boys can be soooo adoring towards their mommies. I had to get it together. The doctor told me it would be okay and that his assistant would make the arrangements and call us with a date. Date? Date? What do you mean date? Dr. Bradley said more than likely they would wait for the baby's birth (November 2006) and schedule the surgery for Christmas break, early January.

His assistant took me to her desk and talked to me, trying to calm me down. She talked about some other children who had this same surgery and were doing well. She gave me a few tissues and then discovered I needed the whole box. Each time she would tell me about a child, I would cry even more. She finally stopped and said .. " Ethan will be in good hands". Dr. Bradley is the best.

We finally left the office and came home. I couldn't even think. I didn't even call D. I called OUT to the Lord!!!!! We got home and Ethan wanted to watch TV. "Yes, of course, I said, anything you want." I would let him literally hang the moon if he wanted. All I could do was stare at him and stare at his head. Eventually, I called D and broke the news. Nothing I said made sense. D is the calm, level headed person in this marriage and this situation was no different. He said, honey, God WILL take care of Ethan. He knows what we are facing, Ethan's tumor did NOT catch Him by surprise, He is an all knowing God and He WILL take care of Ethan.

Wow, wish I had thought of that. Of course, I knew it in my head, BUT my heart .. all together different. So, I cried more and called my Pastor. I screamed, I mean left a message with his administrative assistant and when Pastor called back, I screamed more and tried to clearly explained what had happened. Again I was met with a calm headed, level headed response to my outbursts. My Pastor prayed with me and told me to keep him apprised of the situation.

Once D got home, I replayed the whole day for him and cried more. It made no sense, no seizures in over a year and a half. The thing we wanted the most and now this? We had gotten comfortable with our somewhat return to normalcy and now we were facing the removal of the tumor and losing the Ethan we had come to know again.

D and I prayed and prayed some more. We always pray for discernment. The next day we decided to call all the pediatric specialists and surgeons around the country who had provided second, third, fourth and fifth opinions for us .... AGAIN!

Mar 7, 2008

Ethan - Part 8

Over these last 4 1/2 years we have had to learn our way THROUGH the storm. We didn't know anyone who had been down this road before us and it was clear God was and IS using us to tell Ethan's story. I often say that God allowed me to be a reporter years ago because I would need the investigative gifts for this journey with Ethan.

Thank God for the internet. We began to study and stay on the computer trying to find solutions, other doctors, families we could talk to, chat rooms, whatever we could find to help our son Ethan. Natural remedies, the epilepsy foundations, support groups, but most of all, we STAYED on our knees to pray, praise and beseech the Lord.

Ethan would have several good days and then one bad day. We charted his seizures and when you looked at the calendar you would just want to hang your head, because there were so many days with multiple seizures. I would always write BIG on the days when he would NOT have a seizure to overshadow the bad days.

Most of the time he would have a seizure and go 3 to 4 days without one and we would pray that this would be the series that they would stop. Then the other shoe would drop and he would have a seizure and sometimes have a lot of them in one day.

At one point, he was having them so frequently, that the docs had us check into the hospital for a 4 day stay so they could watch Ethan 24 hours a day on video surveillance and could see what his seizures looked like. (Remember I said he would never have them while we were in the presence of the docs and I could not explain them that well.)

We spent 4 days in the hospital and they took Ethan off of his meds. All of them. I was kinda glad because they would be able to see what these meds were doing to him. This particular time Ethan had gained A LOT of weight and was slow and sluggish. He wanted to sleep and never wanted to play.

During the hospital stay they got what they need after Ethan had a series of major seizures in a very short span of time. FINALLY! FINALLY! The nursing team called the doctor and he came to us the very next morning.

He changed Ethan's meds immediately and said one of them was the main cause for his sluggishness and weight gain. This was in January 2006. Ethan's LAST seizure was February 12, 2006!!!!!!

I remember it like it was yesterday. He was out of school and we were on our way out the door to go shopping. Just as I opened the front door, he fell behind me. He was out of it for a while and when he came to, he said, ok mom, I want to stop having seizures. (Stab me in the heart, I felt so bad for him). I said yes, baby mommy and daddy want you to stop having them too.

Days kept going by, no seizures. More days, no seizures. When we hit a whole month, I must have emailed the whole world. Didn't you get your email? :) We could not believe it. A whole, two months, Lord, Lord, 3 months and before we knew it we would celebrate 6 months with no seizures!!!!!!!

We made it to 8 months free of seizures and Ethan continued to have MRIs every 6 months or so and we expected the October check up to be no different.

and they hit me ... smack dab between the eyes ......

Mar 6, 2008

Party over here .. oowa, oowa!!!

Ultimate Blog Party 2008

Welcome! My name is Jai and I am a stay at home, work from home mom of 3 boys. I have been happily married for 12 years and I am excited about the party this week!

Blogging has been so much fun and I wish I had started sooner. My friend Chrystal got me started a year or so ago, but it took me 4 months to hit the "publish" button. I wanted everything to be so perfect and we don't have a digital camera, so I thought my blog would look so "blah". I use the old fashioned way of taking photos and have occasionally added them to the blog. Can't wait to get my digital camera and more training on this bloggin' thing this year! Watch out!

I learned that I could use the blog to keep my inlaws posted on the boys (my they grow up so fast!) and then after a while so much started going on in our lives, I started using the blog to update friends and family on my son Ethan's brain tumor journey. By the grace of God he has been HEALED and we praise God each and everyday for this miracle God gave us!!!! Hallelujah!

I am glad you stopped by. There are recipes for you to try, testimonies for you to read and prayers for you to pray (if you feel led).

There is some jazz playing in the background, I just don't know how to set it up so you can hear it. (SMILE) You will have to click on the link to hear from one of the Christian Jazz artists we like around here.

I am still a work in progress.

Come back by real soon .. I am in the middle of a series about my son Ethan.

Have a blessed weekend!

Recipe Swap

Lysa TerKeurst, Proverbs 31 ministries, is having a recipe swap today. I am joining in on the fun AND getting some recipes for the ****** household as the season begins to change.

Salisbury Steak

1 lb ground chuck
1 packet onion soup mix
1/4 cup of water
1 can beef broth
1 package brown gravy mix
Red and/or green bell peppers

Mix ground chuck, onion soup mix and water together. Form into patties. Brown patties on medium to low heat, cooking each side for 10 minutes. Add broth and gravy mix, and simmer w/ lid for 20 minutes, until gravy thickens. Add sliced bell pepper just before serving.

Serve w/ twice baked potatoes and sauteed spinach. (See below)

Twice sweet baked potatoes

6 sweet potatoes, cleaned
4 tablespoons brown sugar
4 tablespoons softened butter
4 ounces softened cream cheese
1/2 teaspoon ground cinnamon
1/4 teaspoon ground nutmeg
1/4 teaspoon ground ginger (optional)
1/2 cup pecans
marshmallows (small)

Preheat oven to 375 degrees
Place sweet potatoes on cookie sheet and bake for 1 hour or until soft.
Split potatoes down the middle and remove the inside to a medium sized bowl. (use a melon baller if you have it)
In another bowl, add brown sugar, butter, cream cheese, cinnamon, nutmeg and ginger and mash and pecans and mash with a fork. Dash of salt to taste.
Add this to the sweet potato pulp, meat, you know, the inside of the potato and put the mixture in the potato skins.

Bake for 15 minutes, add marshmallows on top for 1 min or until golden brown.

Sauteed spinach - My kids can't get enough

Frozen spinach
2 slices turkey bacon
1/2 can chicken broth
1/2 purple onions
1/2 white/yellow onion
Salt to taste
1 tsp EVOO (Extra virgin olive oil)

Place EVOO in a saute pan, skillet, whatever you have on hand, add 2 slices of turkey bacon (cut or torn), and white onion. Saute or stir on low to medium heat for 7 to 8 minutes. Add frozen spinach and saute (cook) for 10 minutes on low heat. Add chicken broth and continue to stir for 5 minutes. Add purple onion and salt to taste and cover for another 5 minutes. MMMMMMM

BooMama had a soup carnival last year and I entered these.

Lastly, a quick and easy salad. - Hubby's favorite!

Strawberry Spinach Salad

2 bunches fresh spinach
1 1/2 cup of strawberries, sliced (slither size)
1/2 cup sliced pecans, walnuts or almonds
1/2 Feta or Gorgonzola cheese (crumbled)
1/2 can drained mandarin oranges (optional)

Mix all ingredients and serve with poppy seed dressing. Sometimes, we add a grilled chicken breast!
Yummmm ..

Praying for Spencer ...

My friend Amy's son needs prayer.

If you feel led, please pray for this young man and his family. Thank you!

Mar 4, 2008

Ethan - Part 7 (?)

The ****** household caught that awful flu/cold/bug AGAIN and I am behind in my writing, so please forgive me ..... this is long again ...

The last 4 1/2 years have flown by!!!
I would have NEVER said that WHILE we were IN the moment. Ya know? When Ethan was first diagnosed, my world and everything around me seemed to move so slow. VERY SLOW!

Ethan's seizures increased, he began falling with each seizure, his meds changed, he had a week long hospital stay to chart his seizure activity, his grades began to slip, he gained weight, his started having memory loss, he didn't know how to tie his shoes, he wanted to sleep ALL THE TIME, he started moving slower, he lost interest in cars, video games, movies, and LAUGHING, he forgot words and started using his own version of sign language, he needed to be watched every minute except when he was sleeping, his speech was altered, his writing became illegible, he didn't want to play, his friends didn't understand why he wanted to watch Barney while they were watching power rangers, he couldn't swim, he couldn't play football and on and on and on ... we had to rearrange the house, we couldn't have a coffee table, we tried to make everything in the house soft and anticipate seizures so we would be ready.

D and I were very tired and often speechless.

We had to do almost everything for Ethan. EVERYTHING! Of course, we didn't mind, he IS OUR son, but I don't think it dawned on me how much we WEREN'T doing. Ethan was NOT living the life of a normal 6 year old. We would drive around on Saturdays and see all the parents at the soccer fields near our house or hear about my co-workers having to take their kids to baseball or football practice and games over the weekend and silently think .. when can Ethan play? The spelling bees and speech meets .. we did not do that either. Ethan did not sing in the children's choir at church ... there was no way I would have him sing and have a seizure in the middle of a song. D and I began to shelter him ... perhaps too much ...

Ethan learned to read at 3. I remember like it was yesterday. He was in Awana and the instructor told them NOT to go ahead in the book, but Ethan LOVED Awana. One Tuesday night while we were looking at the book together, I remember thinking, this boy has memorized this book. OOOO, that is sooo cute. The next night was Awana night and when D and I went to pick Ethan up, one of my friends who was helping in the class told me how excited everyone was because Ethan had been reading, really reading the book. I was like .. uh huh .. then they showed me and I was floored!

The learning continued throughout his preschool and kindergarten years. Ethan excelled at most everything he did. He could name ANY and EVERY car or truck on the road. Can you imagine a 3 year old saying Dodge Viper, Lamborghini, yellow corvette? It was wonderful and scary at the same time. He loved school and soon was invited into the Talented and Gifted class for 1st grade.
Then the seizures started and Ethan went from T&G to Special Education within 2 years. He also had to leave his private school and go to public school. His doctors wanted him to have all the services he needed to improve his quality of life. We were scared .. but we prayed.

Fear and Faith CANNOT live in the same space.

The transition was not easy, but smooth. God gave Ethan some wonderful teachers and staff at his new school. This year will be his last year at this school and if all goes well, Ethan will enter junior high next year and a new journey will begin. JUNIOR HIGH .. eeeshhh

One thing I learned is that I needed to be an advocate for Ethan at school. I needed to know how to be the best advocate for him and how to advocate WELL for him, NOT tick everyone off in the process. I wanted him to learn at his pace, but I also wanted him to have the regular schoolwork sent home as well... even if that meant we did double work. Many times I would be told, he can't learn this, this IS above his abilities and each time .. Ethan, no God would prove Ethan's critics wrong. I also wanted a safe environment for him. His new school provided a "buddy" for him and the whole school would wrap their arms around him. I have never heard so many people whisper ... we are praying for him .. we are praying for him. The whole school knew who Ethan was before he ever set foot in the building and MANY had said God does "DO" miracles and He is up to something big for Ethan.

I totally agree ....

Mar 3, 2008

Miracle Mondays

Beth over at A Mom's Life is hosting Miracle Mondays. My new friend Amy suggested I join in on all the "fun" (yes it IS fun to tell what God has done in my life !).

This was right up my alley because I am in the middle of a series (who knew it would come to this) about Ethan. I have a few more entries to write about his/our journey, but God is STILL working on Ethan and I am reminded EVERYDAY that God healed Ethan and I will NOT to keep quiet. Hallelujah!

After you read more about Ethan, come back for the rest of the story this week .. and then go by Beth's for MORE miracles from our Lord!