Monday, April 07, 2008

Ronald McDonald House

Having fun & resting!


Abe's first casting!




Here are pictures right after Abe's first casting.


St. Louis






Our only stop on the way to Iowa that was more than a very quick potty break was in St. Louis to see the arch. It was so beautiful! I was so glad we took the time to stop. Here are some pictures from that stop.


Friday, April 04, 2008

Abe's clubfoot journey begins

Here are some pictures taken of Abe's feet the night before we left for Iowa.






Granmama

I will never know how we accomplished this. Mom does not like pictures made. I love that we got her with all 4 of the children though.


My wish!






If I had one wish for Abe it would be for him to have a happy life. So far so good I think! We have been loving all this fun time with him. I wanted to share some pictures with ya'll. I just noticed these are with his feeding tube. He took his feeding tube out Wednesday morning at 9:00 AM. I told him I would give him 24 hrs to show me he could do it. So far so good! I will get more pictures with his tube out and him laughing.


Wednesday, April 02, 2008

God's grasp

The other day while we were out and about we heard a song that talks about God's grasp. It hit me hard as I listened because I was thinking of those days and nights at the hospital that I was so mad at God. No matter how mad I got he never let go of me. It kind of reminds me of when a child gets mad and will not listen to what you are saying. You may have the child by the arms and they are struggling to get away. If you can just calm the child and surround them in your loving arms they will relax, surrender and be at peace. How many times have I struggled with God and once I will say ok you are in control He will surround me with His loving arms and I will feel His overwhelming peace.

The day that I wrote the post about my battle I had emailed some very dear friends of ours http://cyndiakadisneyqueen.blogspot.com/2008/03/baby-abe-and-kelli-are-home.html . I wanted to share something Marc shared with me.


Spiritual Vision Through Personal Character
"Come up here, and I will show you things which must take place …" (Revelation 4:1).
A higher state of mind and spiritual vision can only be achieved through the higher practice of personal character. If you live up to the highest and best that you know in the outer level of your life, God will continually say to you, "Friend, come up even higher." There is also a continuing rule in temptation which calls you to go higher; but when you do, you only encounter other temptations and character traits. Both God and Satan use the strategy of elevation, but Satan uses it in temptation, and the effect is quite different. When the devil elevates you to a certain place, he causes you to fasten your idea of what holiness is far beyond what flesh and blood could ever bear or achieve. Your life becomes a spiritual acrobatic performance high atop a steeple. You cling to it, trying to maintain your balance and daring not to move. But when God elevates you by His grace into heavenly places, you find a vast plateau where you can move about with ease.
Compare this week in your spiritual life with the same week last year to see how God has called you to a higher level. We have all been brought to see from a higher viewpoint. Never allow God to show you a truth which you do not instantly begin to live up to, applying it to your life. Always work through it, staying in its light.
Your growth in grace is not measured by the fact that you haven’t turned back, but that you have an insight and understanding into where you are spiritually. Have you heard God say, "Come up higher," not audibly on the outer level, but to the innermost part of your character?
"Shall I hide from Abraham what I am doing …?" (Genesis 18:17). God has to hide from us what He does, until, due to the growth of our personal character, we get to the level where He is then able to reveal it.

Later that day I received this from the sister of a dear friend of ours.

I do want to share with you an excerpt from a book, Praying through Life's Problems, by Stormie Omartian. This excerpt was written by Joni Eareckson Tada:

I know God has the answers. Thirty-five years of paralysis has been like a classroom for me as I've discovered the richness and depth and wonder and sweet satisfaction of all that the Word of God contains for people who are suffering. God has His reasons - a refined faith, a stronger character, and a purified heart are just a few answers to the question "Why?" But when you're hurting, and your heart is being squeezed like a sponge, or you're feeling numb and you don't know if your emotions are upside down or right side up, a list of sixteen biblical reasons that all of this is happening can sting like salt in a wound. The bleeding doesn't simply stop when someone ticks off answers, although they may be good and right and true. When you're grieving over the loss of your body or other personal struggles, answers don't often reach the hurt that's down in your gut and heart. When a person is suffering like I was when I was first injured, you're like a child who's been hurt and you turn to your big, strong father and say, "Daddy, why?" Now, I don't think it's very daddy-like for the father to look down at his child and say with cold detachment, "Well, child, I'm so glad you asked that question. You see, my plan for you in all of this is 'such and so." No, a child who's hurt wants her daddy to reach down and pick her up and press her against his cheat and say, "There, there, honey, everything's going to be okay. Daddy's here."

That's our heartfelt plea, isn't it? We want assurance. Better yet, we want fatherly assurance that there is an order to our painful reality that somehow transcends our problems. We want assurance that our world is not splitting apart at the seams. We want assurance that our world is orderly and stable and somehow safe. We want God to be at the center of things, to be in control. He must be at the center of our suffering and He must be good. He must be our "daddy" - warm, kind, and compassionate. This is our cry when we ask "why?" The problem of suffering is not about something; it's about someone. And so it follows that the answer is not something, but someone. And God, like any good daddy, doesn't give answers as much as He give Himself.


One day He will give us the key that will unlock everything and it will help us make sense of it all. Until then, leaning on the Man of Sorrows is enough.



It is this weakness that keeps driving us, driving us to God by the overwhelming conviction that we've got nowhere else to go. There is no help but Him. There is no hope but Him. Abraham Lincoln

On my bed I remember you;
I think of you through the watches of the night.
Because you are my help,
I sing in the shadow of your wings.
My soul clings to you;
Your right hand upholds me. Psalm 63:6-8

The Lord is close to the brokenhearted and saves those who are crushed in spirit. Psalm 34:18

I have gone back to all of this so many times this week. I still have a hard time understanding WHY it has to be children. Not only my children. WHY Cindi's child? WHY Mary Beth? WHY all the other ones of our friends who have lost their children? WHY Emma? WHY do all hers and Michala's sisters have to struggle through life? WHY all the children we have seen diagnosed with cancer? WHY do their little bodies have to fight? Because it takes that to make hard hearted or stubborn people like myself see what's important in life. I am not sure the answers. All I know is if God is trying to teach me to rely on Him more or teach me something, PLEASE do not let me miss it. I do not want my children's lives to be in vain.

I asked one of my encouragers this week why God was picking on me. She quickly said God is not picking on you, He picked you. My prayer today is that I am worthy to be picked.

Marlee Anne - isms

I have been trying to find time to post about my sweet little girl. She has been such a huge help. She loves her brother dearly. She wants to touch him, kiss him and talk to him ALL the time. Even when he is asleep. She holds him while he is being tube fed, knows how to unhook it and it just a great help. She has even changed his diaper, which daddy hasn't done yet.

Well most of ya'll know how she is about being/acting older than her age. Some of the things she says just cracks me up. Other things she says just melts my heart. Each night I had to call her from Abe's beside so that she could talk to him. Every night she told him that people all over the world were praying for him and he would get to come home soon. One night she had a great revelation and told him that she knew what was wrong with him. If he would tell the doctor to fix that bone in his foot that isn't quite right that it would make him all better. That childlike faith amazes me. Well we are about to fix his feet and are praying he will be all better.

The other day we were lying in the bed and she said mom you want to milk him. If he wakes up she will say I think he wants to milk. I crack up everytime. She knows that I am breastfeeding him. For some reason she has always called it milking. So if you ever call and she says I can't come to the phone cause I am milking Abe you know what she means.

One day I was checking placement of his feeding tube. She wants to know everything that I am doing to him. She wants details. So I told her I was checking to make sure it was still in his belly so that the medicine and milk wasn't going some where it wasn't suppose to. She said yeah like in his foot. I explained to her like in his lungs but she just invisioned it possibly going in his foot.

The day of Abe's birth she was in the delivery room with us. The nurse had told her she could sit up behind my head on the table. She did but quickly said oh no I can't see. Well Dr. Rippy said come down here. She quickly jumped up and got right up next to him. Mike said well maybe not quite so close. She moved back a step. While waiting for Abe to make his appearance she was talking to the baby nurse while she was getting everything together for Abe. The nurse told Marlee Anne that she could help her give him a bath when he got there. Marlee Anne said what about his belly cord. The nurse said well that's ok we will be careful. Marlee Anne said it can't get wet you know. Once things got going Marlee Anne said oh mommie I can see his head. I told Marlee Anne she was such a great encourager. Then she said OOOOOHHHH mommie that's a lot of blood. I told her OK that's enough, no more play by play.

I know there are so many more Marlee Anne - isms I want to share but those are the ones that quickly came to mind. I will share more as they come to mind or as she comes up with them.

Monday, March 31, 2008

15 years ago





My big girl is 15 years old. I still cannot believe it. What a beautiful girl she is. She has shown us more love than we could have dreamed of. She has taught me more in 15 years than I could have learned from anyone else in a lifetime. She has the most patience, is the most thankful, always happy, laughing and smiling. The blessings have far out weighed the trials. I am so very thankful for her willingness to fight through those tough times. I am so thankful God has blessed us with her this many years. I can't wait to see what the future holds for us. Thank you for sharing this journey with us. It's my prayer that Mary Elizabeth in some way has blessed and touched your life.




Thursday, March 27, 2008

My battle

Man tonight I am holding Abe and typing this. I have a battle raging from within me. Yes today has been a wonderful day but still the anger rises. I honestly do not believe that I am above this. I do not believe it should happen to someone else. I just do not want it happening to me. I feel like God is picking on me. Why me? Better yet Why Not Me? I am having a hard time accepting the fact that the one that allowed this to come into my life is also the ONLY one that can carry me through this. Because of that I will depend on Him. I will count on Him to carry me through because over the past 6 weeks, yes Abe is 6 weeks old today, I have come to realize that no matter how mad I get at God He is going to continue to be there to carry me through this. No Matter What I WILL give Him the praise.

Tuesday, March 18, 2008

World's Greatest NICU Doctor

That's something HUGE for me to say because I love Dr. Parks so very dearly. He is still at the top of my list. He came as soon as he heard our new baby was in the NICU too.

I do have to admit that our love for Aunt Dr. Helen (her name for Abe to call her) grew quickly. Abe came quite attached to her. She even took the time to call and check on us the day after we came home. I know she probably does that for all her patients. Abe and I like to think it was just cause it was us. Possible too to smooth things over with Marlee Anne. She was a little upset with Dr. Williams for keeping us there so long. It didn't take her long to realize that Dr. Williams is pretty wonderful to help make Abe well and get us home.



I don't have pictures of them with Abe but Dr. Adams, Dr. Cornish, and Dr. Piazza were all very special to us. Mo, Carrie and Andy were all pretty great too. I haven't forgotten about the nurses cause we could not have done without all of them. I am still working on that post.





These pictures of Abe with his Aunt Dr. Helen were taken the day we were going home. When I came back from lunch one of his nurses told me she had put his journal in his bed. My first thought was that was bad to put it in the bed with him. When I walked in his room I saw in his bed, in the spot where he should, was his journal. I walked back up to the nurses station and all the nurses are laughing and grinning. I said ok where's my baby. They all pointed to Dr. Williams. She had Abe sitting in her lap. I went back to the room to get the camera and grabbed these shots.






Monday, March 17, 2008

My little leprechaun


St. Patrick's Day was spent in the hospital. I wanted Abe to be dressed all in green. My mom's friend knitted us shamrocks. I tried to convince the KNICU knitters that I knitted them. No go there.


Monday, March 10, 2008

Mary Beth!

OK not many people can relate to this I don't think cause I got some looks at the hospital when I shared it. We all have to gain comfort wherever we can and I gained a lot of it from this little computer named Mary Beth Bovine.


That early Saturday morning when we walked into Abe's room in the NICU I saw a computer with a name on it. Over the next few days I noticed more of them. After a while I started paying more attention to their names. It never failed when we were about to receive some news on test results or if I was just having a hard time with things, I would look up and sitting right outside the door in the hall was Mary Beth Bovine. May be a strange way for God to remind me that He and His angel were right there with me but it worked. I always got a special peace that I needed right then and there. There were several times when Abe was about to have a procedure done or times when I couldn't hold him that I would stand beside his bed and he would smile. I thought of Mary Beth and her being small enough to climb in that bed beside him and kiss him. She was making him smile.


This memory was shared not so much for ya'll to know this happened but for me to never forget it did. For me to always remember that God is still using this special little girl in my life.


Saturday, February 16, 2008

NOT AGAIN!

The nightmare all over again. Never did I think that this would happen to Abe. Almost 15 years ago it was the same thing with Mary Elizabeth. The nurse had just come in and taken Abe down to the nursery for a bath. It was 2:15 AM and she said they would be back in about 30 minutes. It was 2:30 AM and I heard them call a code blue. I knew in my heart it was Abe. I waited 15 more minutes and then walked down to the nursery. They finally came in and told me it was Abe. They left me in that room all by myself while I called Mike and told him Abe had stopped breathing and Angel II was on there way to take him to Egleston. Not long after that he was at the hospital with me. On the ride to Egleston I was numb. How could God allow this to happen to us again. I was so not ready, so not prepared for this. I wanted to take my healthy baby boy home with me. I would soon find out he wasn't a healthy baby boy and he wasn't coming home for awhile.

As we walked back to see Abe for the first time in the NICU feelings I thought were gone came flooding back to me from 15 years ago with Mary Elizabeth. It was a weird feeling mixed with horror, fear, disbelief, but also peace and comfort knowing he was in the best place possible to find out what was going on. I was so not ready for this. I wasn't sure that I could handle this.

One of the hardest things for me on this journey was that I kept comparing things that Abe was doing to things that happened with Mary Elizabeth. Was this the same thing happening all over again? We knew what we wanted to take place as far as test. We knew which doctors we wanted there for him. Of course that's a chance happening because we would get whoever was on call. From the minute all this began I saw God's hand the entire time. My dear sweet friend recently told me that God knew this day would come long before Abe was formed in my womb. I have to remind myself of that. I did continue to see the path that God had planned ahead for. The doctors that say Abe including the neurologist and endocrinologist were doctors we wanted there. The nurses he placed in our path to take care of Abe and me were definitely put there by God.

I know that I will continue to have thoughts of this journey that I want to share. They just may be here and there as they come to mind. Thanks for sharing this with us and for your continued prayers.

Thursday, February 14, 2008

Abe's birthday!

I am sitting here in awe looking at this precious angel that has appeared in my life less than 8 hrs ago. I don't see how God loves me this much to bless me so. I stand, well sit amazed!

2 hrs later I wrote this - Who would have thought I would have fallen in love again on Valentine's Day. I never thought there would be another man in my life. This little man has quickly stolen my heart. I honestly didn't think I would love another like this. I now understand the special bond between mom and my sister and their baby boys. I never understood it but now I do. It's truly a love like no other.

Wednesday, February 13, 2008

Marlee Anne is packing for the hospital!

It has hit Marlee Anne that the baby will be here tomorrow. She has been excited each night when I start having contractions and she thinks that night might be the night. She has had her bag packed this whole time but with night stuff not real sure of what to take. Today she is packing fun stuff for us to have there. Little games for us to do together, coloring book and crayons, crackers for me and Granmama, and she wanted to know if the baby could have some gummy bears. She is so sweet! She has packed him one of her special blankets along with a toy that is Michala's. She asked Michala's permission though.

It's hard for me to believe that today is my last day with just my three little angel girls. Soon we will have a new addition. I am excited about this new adventure. I can't wait to hold him in my arms. Thanks so very much for all your prayers. Hopefully it won't be long before we have the blog filled with pictures and lots of fun stories.

Sunday, February 10, 2008

Big Apple Circus!


This group reminded me so very much of the Krytos that we loved at Disney. They were absolutely amazing.





WOOHOO!!! We made it. Today we were invited to the special Camp Sunshine day at Big Apple Circus. This is always a very special time for our family. The girls can actually see what's going on and really love it. Mary Elizabeth laughed the entire time, Michala clapped and screamed, Marlee Anne was amazed the entire time.

This circus is really very amazing. If you ever have the chance to go see it do it. The performers are incredible. It was so funny to listen to all the adults laughing. The coolest thing is some of these families lives have been so filled with tears going through cancer treatments and watching their children suffer. Too look around and see smiles on their faces is absolutely wonderful. The oohs and aahs and gasp are incredible too. The last act almost put me into labor. Well I said almost. No I am still here with this precious little one getting ready to make his presence.

Each time we have the opportunity to do something with Camp Sunshine we are so blessed. To see other families that have been through the same things as you, to see how far we have all come and to have the chance to rally around those newly diagnosed families or those families battling this nasty disease once again is truly a gift. I know that may sound a little strange but it's true. It's a family bond that is so very strong.

The Camp Sunshine staff, volunteers and family are amazing themselves. They work so hard to make sure there are activities to keep us all connected. They continue to support us all in whatever way they can. They are all such blessings.

When we walked into the tent, Grandma from the Big Apple Circus asked Michala if she brought her a tuna sandwich. Michala just thinks Grandma is the best. Maybe she reminds her of her granmama. LOL!!! Marlee Anne went up to Grandma and told her we watched her on TV. She knew right away it was the Food Network. It was the Dinner Impossible episode called Circus Juggle. If you have the chance to watch it do. It was really good.

Jeff Foxworthy, who Mike and I have admired for quite some time, was the honorary ringmaster. We saw him at the Punchline years ago. I wish I remembered what year that was. He just stood around afterwards talking to a group of us. We thought then he was a great guy. Since then we have had several opportunities to meet him. One of those time was at a Camp Sunshine Christmas party and Michala pinched him on the booty. When Jeff turned around Mike apologized and blamed it on me. Today after the show Jeff came up and took a picture with the girls. Marlee Anne got his autograph and of course had to talk to him about EVERYTHING!!! Yes Lori we made sure to tell Jeff what a geek Mike is and he is going to be the first adult to win the million dollars on Are You Smarter Than A Fifth Grader. Jeff was very excited about that.

Thanks Camp Sunshine for a wonderful day out filled with lots of fun, love and laughs!


Note regarding pictures... you cannot use a flash and I couldn't get the settings on my camera right until intermission so I only got pictures of the last half of the circus. I am very pleased with the pictures I did get for the girls' scrapbook.

Saturday, February 09, 2008

A few cards!

I typically don't share craft projects I do on the blog. I said I would get better about that. I have a view cards I thought I would post. Nothing big but just something that was fun to work on.






I forgot to take a picture of the first Target mailbox I did. That was a lot of fun. Marlee Anne & I made it for her best friend Mackenzie. She already gave it to her to she could enjoy it longer. I will see if her mom can take a picture of it for us to post.

Thursday, February 07, 2008

Just one more thing!

You can take that subject line however you would like. Right now I feel like a camel. Even though I really don't know much about them I see them as being fairly tough guys. Able to with stand a load. I imagine them though taking about all they can take. What will break their backs, their strength, their endurance & their spirit? What will be the final thing that does them in? Probably nothing huge I imagine. I am thinking just a toothpick. A little splinter. Just something really small.

Well to get on with the news I got today. The baby has an enlarged kidney. The ultrasound will not show the reason for this. Once the baby is born they will then ultrasound his kidneys and see what's going on. There are a couple of things that it could be. A blockage and his kidney just not emptying. Or bladder reflux where the bladder backs up into the kidney.

We are claiming that it's NOTHING!!! Even though I feel knocked down at this moment. Mike had a meeting he could not miss so I was by myself at the appt. I was blown away when I heard these words. My rock wasn't there and it was tough. I was once again reminded why God brought Mike and I together. Well even though I am feeling this way now I KNOW without a doubt that I serve a God that is in the miracle business. I know without a doubt that this baby can be born without anything being wrong.

I don't even want to go into the fact that I am sure there's an easy fix. Send him to a pediatric urologist. I can hear the laughs and sighs of unbelief now from our friends that understand the "one more thing" attitude I have right now. Of course we don't have a pediatric urologist on The Hopkins staff right now. Why not add it right?

I have to admit my No Matter What Happens attitude is being greatly tested right now. I don't understand why God allows things. Good and bad. Each day I am so overwhelming blessed by the most amazing family that I could never even have dreamed them up. I wouldn't have dreamed them up because looking at them through my eyes like those of the world's I would have missed all the blessings. Thankfully I see them through God's eyes. I see the perfection he has created. OK so I will give him credit for all the wonderful blessings in my life. However right now he is allowing this. I hate this! I do not want this.

I know it's not obvious but I honestly have been praying since I left the doctor's office about this. I thought that I could get these thoughts out where they would make sense. It seems like I am rambling. I just figured this would be the easiest way to share this news than to try and explain while I was crying on the phone with those of you that have called to check.

On a side note they did not weigh the baby. Right now we are just waiting to see when he will decide to make his appearance. Unless of course the OB decides to induce. I see him again on Monday. Tuesday is Abraham Lincoln's birthday so Mike thought it would be neat if his little Abe was born that day. We shall see!

Right now just please pray that this is just a glitch in the ultrasound. Please pray that everything is fine with our precious baby. Please pray for peace for Mike & I. If you have read this far thank you for wading through my thoughts and allowing me to share them with you.

Wednesday, February 06, 2008

Still pregnant!

Well yes here I am sitting with my sweet baby still in my belly. I am 11 days away from my due date. You would think this is my first child. Just waiting on the contractions to get stronger and more steady. Tomorrow I am back to the specialist to check this little guy and make sure everything is still fine. Also to check his weight.

Today Mike said you know we are about to have a baby. I laughed and reminded him that the reason God gives the baby 9 months to grow is to help us prepare to be parents, whether for the first time or fourth time. He said I know but we are about to have 4 children. What were we thinking? Those are his words now as I am about to give birth to this baby.

We are both so excited to meet this little guy. See how the girls react to him. See how they all grow together. We are excited about the love and excitement he is sure to add to our home.