God is so good!

I don't know how else to put it. Sunday I was blessed to get to sit out in the evening with a sweet friend of mine. Just to have some time just to visit meant so much.

Monday I woke up and the world hit me. I don't know why but it just did. It hit hard too. The thankfully a dear friend called and said hey is it ok if I came over. She didn't know I was having a bad day. I thought I would cry. In Iowa at the Ronald McDonald House there was always someone coming and going. Always people around. Once we got home it was once again me against the world. Really no different it was just that my mind didn't have time to dwell on life in as much detail. I knew this visit was from God because the timing was perfect. It was so peaceful and relaxing. Nothing was expected of me. I didn't have to share or I could if I wanted to. I could cry or not. Just whatever. All was well. I was blessed!

Then today at lunch Mike and I had the priviledge to attend a meeting about building the Miracle League in Covington. We were there for the opening of the one in Rockdale and we are excited about this possibility. It was nice to get dressed and go out and see some special people in our lives.

Tonight was my jewelry party. It was a small turnout but Lori did a wonderful job. I think she is ready to get going on her new business adventure. It was so nice to spend time with family and friends. Marlee Anne is always so excited about a party and this was no exception. I was a little worried she would be disappointed but she was very happy with it. She worked hard helping me get the house in order and fixing the snacks.

Marlee Anne loves Andrew. We often joke about them one day growing up and getting married. Well I have to share pictures with you.

FEAR

WOW! I have been struggling with fear for several weeks now. Each time thoughts of the future come to mind I become fearful. I pray because I know I need to stay here in today and not let my mind wonder. I need not be fearful.

I have started participating in a new online bible study and this is one of the scripture that has been shared. 2 Timothy 1:7, "For God has not given us a spirit of fear, but of power, and love, and a sound mind." I am so thankful for that promise.

Sunshine - that wonderful vitamin D

OK my friend said ya'll wanted to hear the good stuff too so here goes. The doctor told me the fastest way to increase my vitamin D was sun. Today I thought I would sit in the sun for a little while. Marlee Anne went out there with me so I didn't have much quiet time but during the quiet time I had my thoughts were happy.

First off I had to laugh when Marlee Anne asked what I was wearing. It was a bathing suit but..... well what can I say, I just had a baby. LOL!!! Now I can use that line up until Abe is how old?

As I sat outside I laughed because I sat in an adirondack chair and propped my feet up in another one. Not the best laying out situation but the only one I had readily available. I thought back to the days when my mom and I would lay out in the back yard in those tri folding chairs where the metal got so hot it would burn you if you touched it. We would either have, now don't have a fit, either you will gasp when I tell you or you will laugh and say oh I remember doing that. OK so we either had crisco and/or baby oil with iodine. We had some good tans though. If I could have vit D in reserve from way back then I would be good to go.

Marlee Anne kept saying mommie does it feel good. All I could get out was uh huh. It was very nice and relaxing, even the 500 times she and I pitched the ball back and forth.

She wanted to put water in her sand box to play in it. I told her we couldn't do that and I reminded her why. I told her if daddy got caught he could lose his job. Then we would lose the house cause we couldn't pay for it. She said I thought we bought our house. I said yes we did but we still have to pay the bank for it. I said we would have to go live with granmama. She wanted to know why we couldn't live with Aunt Kim. She sat quietly for about 2 seconds, which is about her limit to not say anything, and said I know. She said I will give my money to daddy to help pay for the house. I said well you are saving that money for a playset. She said well you know mom I will have the biggest playset ever in Heaven. I can wait. This is more important. Sometimes that girl!

I came in to get a shower and as I was getting out of the shower I heard laughter filling the house. First Mike's laugh, then Michala, Marlee Anne and Mary Elizabeth's. They were all playing. I love the sound of them being so happy.

Once again I am reminded how very blessed I am.

Mary Elizabeth

The other day Marlee Anne asked me who was the sweetest in our family. I immediately said Mary Elizabeth. I have never in my life met a child or person as sweet, precious and patient as she is. Now don't get me wrong she has her moments of being upset, mad and demanding, but they are very few. Also if you take the time to tell her why you cannot get to her right then and there she understands and waits. I am amazed at how much she understands. I know that one day we are going to be shocked at all she tells about us all.

Mary Elizabeth loves her baby brother. He loves her too. He can start to fuss and she will sing softly to him or sometimes just tell him what she thinks and he stops to listen. It's wonderful to see the love affair they have going on. Here is a picture of her being so proud to hold him.

Marlee Anne

What a proud big sister she is! She has always been good with the girls but she is so very good with Abe. She loves him so much. Sometimes too much! LOL!!! Each night when we take Abe's shoes off for that one short hour we all ooh and ahh over them. Last night Marlee Anne asked could she use my camera and take some pictures of his precious feet. After she took some she said oh mom this one is perfect, you have to put it on Ebay. I said Ebay. She laughed and said oh I meant the blog. So I had to share some pictures she took along with a

picture of she and Abe.

Praise You In The Storm

OK I have no idea what happened to this post. Jessica can tell you that it really was here at one time. I basically wanted to share this song with you and have posted the lyrics at the bottom.

Abe was admitted to Egleston when he was 2 days old. The next day Mike was driving up to the hospital listening to a CD Kim had made for him. He told me about the Casting Crowns song Praise You In The Storm. Yesterday while we were going over records for his surgery it was really hard for me to re-live those first 5 weeks of Abe's life while we lived at Egleston. When she asked if genetics suspected a mitochondrial disease my heart stopped, yet some how I got out the word yes. When she asked if he had delayed development I thought you can tell that from where you are sitting without even examining him. Still I smiled and said yes.

On the way home as I cried I listened to this song. The first words are, "I thought by now you would have reached down and wiped away our tears". Instead I realized my tears continue to flow. It's still raining. Most times I hide the battle that rages within me. Fighting to get through each day. So ready for the rain to end. I will continue to praise HIM in this storm. I have learned over the past 15 years how to grieve. I know the stages. For some reason this stage is lasting longer. I know I have been here before. I have made it through once, no twice, no more times than that. I will make it through again.

I think I have shared this before but sometimes it makes me so mad that the one person who has allowed this in my life is the ONLY person that can get me through it. For that I am thankful. For that I give God the praise.

Praise You in This Storm
words by Mark Hall/music by Mark Hall and Bernie Herms

I was sure by now,God, that You would have reached down
and wiped our tears away,
stepped in and saved the day.
But once again, I say amen
and it's still raining
as the thunder rolls
I barely hear You whisper through the rain,
"I'm with you"
and as Your mercy falls
I raise my hands and praise
the God who gives and takes away.

Chorus:
And I'll praise you in this storm
and I will lift my hands
for You are who You are
no matter where I am
and every tear I've cried
You hold in your hand
You never left my side
and though my heart is torn
I will praise You in this storm

I remember when I stumbled in the wind
You heard my cry to You
and raised me up again
my strength is almost gone how can I carry on
if I can't find You
and as the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
and as Your mercy falls
I raise my hands and praise
the God who gives and takes away

Chorus

I lift my eyes onto the hills
where does my help come from?
My help comes from the Lord, the maker of heaven and earth
I lift my eyes onto the hills
where does my help come from?
My help comes from the Lord, the maker of heaven and earth

Chorus

Abe's surgery

Today we met with the anthesiaologist department at Scottish Rite. It took a long time to go over all of Abe's history. She said even with just one of those things they would not do his surgery at the day surgery center. It will be done in the hospital at Scottish Rite. We discussed his doctors all being at Egleston but she said they could contact them if they needed to. She said to pack a bag and plan to stay. However she is hoping that he is in and out of there and we will be home the same day.

We are waiting now to hear from the office about the date of his surgery. They also have to get in touch with Abe's endocrinologist to discuss him going so long without anything to eat. They are concerned about his sugar dropping.

I will let everyone know when they schedule his surgery. Thanks for your prayers!

Abe's appt

Today we saw the pediatric opthamologist for Abe. He has decided that Abe needs surgery on his eyes ealier than later. He says it's too dangerous to leave the staph infection especially with the skin around Abe's eye being so red and broken and it's not clearing up with the meds. They will be unclogging the tear ducts. I wasn't expecting to have to do it so soon. Right now it's scheduled for July 24th at the out patient center. The doctor doesn't think that the anesthesiologist will let us do it there though because of Abe's medical history. He thinks they will make him do it at the hospital. Which we prefer. However it may be at Scottish and all of our doctors are at Egleston. We will meet with them on Friday to see what they say. There is a possibility the date and location will change. I know it needs to be done and I understand all that. I hate to have Abe put to sleep right now. I honestly hate something else having to be done to his precious little body. I keep thinking it's not fair. I really don't understand! Please continue to keep us in your prayers.

Michala's new outfit

Michala is really into taking her clothes off and her diaper. I know I know I should try to potty train or schedule train her! HA!!! When I find some extra time I will be sure to put that right in there. LOL!!! Well I have looked every where for something her size that she could not take off. Our wonderful & talented neighbor came up today and brought Michala this beautiful new outfit. Michala is so very proud. It's her favorite color too. She tried a couple of times to pull it off but I think when she realized it wasn't come off too easily she gave up. I just wanted to share a picture with ya'll.

Praising God!

No Lupus or any of the other rheumatoid disease. My vitamin D level is extremely low. The doctor sent the prescription in with my results. I will take it once a week for eight weeks and then check levels again. The pharmacist said not to start taking it until I could talk with Abe's peditrician because this med will elevate breastfed babies calcium. I am so very thankful to know what it is and have a plan! Thanks to all of ya'll who stood right there with me praying me through this! All the other test came back normal along with my cholesterol too. YAH HOO!!!

A dear friend called the other day to talk to me about all this and said once we knew what it was it would be easier to handle. The relief I felt when I read the letter was amazing.

Today I have a burning in my joints that is new and strange. Another symptom of vitamin definiciency probably. I refuse to believe I may be getting older. LOL!!!

Thanks so much for all your prayers! I am so glad we didn't have to wait 2 weeks wondering.

Just a reminder

A reminder of what Abe's feet looked like to begin with. We thank God for our Ponseti Miracle!

Is she becoming a girl?

Marlee Anne is far from being a girly girly. Last night she asked me to paint her finger nails. I got a shot of her holding Abe's head this morning and thought I would share it. Mainly a memory I want to hold on to. It was fleeting because she really wanted the polish taken off this morning. I talked her out of it for a little while I think . Just had to share.

Cast off

Well the day is finally here. It didn't take as long as I thought it would. He was getting cold and scaring me so I just ripped those suckers off. Marlee Anne said mommie you are strong. LOL!!! I just cried when I saw his beautiful little feet. Thank you Dr. Ponseti, Maria & Joyce! Thank you God for blessing us with these wonderful people in our lives. Thanks to 7 amazing weeks in Iowa. I am so very thrilled with it all.

His legs are much skinner than I was expecting. I was hoping to start giving him his growth hormone injection each night in his thigh again. I think that will have to wait a little while.

He is now wearing his shoes and sound a sleep. I so hope that's a good sign. We wore him out. I hope that he will be comfortable in his shoes and not have a hard time with them.

Thanks so much for supporting us on this first part of our clubfoot journey. On to the next phase. I have attached some pictures of his precious little feet and in his new shoes. He now owns the most expensive pair of shoes in our family.

The night before

Well tomorrow is cast off day. As I held Abe tonight thinking about his precious little feet I got so very excited. I can't wait to see them.

Prayers please

Over the past years we have seen evidence of the power of prayer. I am not as good about asking for prayer for myself as I am asking for my children but I need them now please. For the past 7 weeks or so I have been in a great deal of pain. Mainly my joints and muscles and an extremely worn out feeling. Not like I normally feel. Nothing I could really put my finger on or explain. I kept blaming it on not being able to get enough rest, missing the comforts of home and all that had been going on. Well it continued to get worst and was really bad this weekend so I gave in and went to the doctor. They took 4 vials of blood to check for lots of stuff. One thing that she suspects is Lupus. PLEASE pray that it's not that. I do not know the other things she is testing for except for my vitamin D. She thinks that may be low. We are hoping it's just that and that's what is causing my pain.

That same day I had to take Abe back to have his eyes checked. One is much better but the other one is still really bad. We are taking him next week to the pediatric opthomologist to see why these meds are working for it. We were hoping that we could take him to Dr. Lambert who saw him in the NICU or to the girls opthomologist but they are completely booked for 2 months and he needs to be seen as soon as possible. I am sure this doctor will be fine but ya'll know how I am with change. Please keep Abe in your prayers for complete healing of his eyes.

On an exciting and nervous note we take his cast off tomorrow. Once his cast are off he will go straight into his shoes and brace for 23 hours a day. All of our clubfoot friends have been encouraging us and trying to prepare us for how tough it's going to be the first couple of weeks in his shoes. Hopefully our sweet spirited guy will just go with the flow and do great with it. I can't wait to see his precious little feet and get him a real bath.

After his cast come off we will take him to be weighed and measured and to get a couple of his immunizations.

Thanks so much for your continued prayers.

Abe's eye culture

Abe's eye culture came back as MRSA - staph. Please pray that we have caught it early. The peditrician thinks he probably got it when he was in the hospital. He is on stronger eye drops that we are praying will take care of it. I have struggled with this since the office called about it. I want to say oh so what just one more thing but today it has hit me hard as why one more thing. Life is not simple and no one ever promised it would be but man just one break? Thanks for your prayers!

New Life

After Mike got home from work I was desperately trying to get a nap. Marlee Anne came running in the house saying mommie mommie. She and Mike had found a birds nest and she wanted to know if I wanted to take some pictures of the baby bird. My first thought was NO I want to go back to sleep. Before I could say it though I was out of the bed. I told her to let me get my camera and I would be right there. Here are the pictures of the new life in our back yard. Thankful I made myself get up and go outside.

Thank you!

Thanks so much for the prayers. When we got there we were told that on May 20th the office called our home and cancelled Abe's appt. I asked who they spoke with and she said mom. I told her that I was not at home on the 20th because I was in Iowa. She said well that's strange because if someone had called to cancel then they should have made a new appt. They had not because she looked to see if Abe had another appt. Thankfully the appt was with Dr. Holt who has been Mary Elizabeth's neurologist since she was 3 and she is also Michala's. They went back and asked if he would see us and he said yes.

So the appt went well. First Dr. Holt said leave Abe on the seizure med, then he said well let's let him grow out of it, then his final decision was to wean him. It will take about a month to get him off of it completely. PLEASE pray that Abe doesn't have any seizures. Dr. Holt felt confident about taking him off it since he had a clear EEG.

Thanks again for your prayers!

Abe's appt

WHEW! I am already feeling beaten and worn this morning. I think I am just tired but another appt and it has hit me hard for some reason. Today Abe has another appt at Egleston. It's with the neurologist. I am not sure how to ask you to pray other than a safe trip to and from and a good visit. I really have no idea what will happen or even what I want to happen. I would love for him to take Abe off the seizure med but the fear seeps in that he may have a seizure without it. I am not sure if they will do an MRI and/or EEG or just have us wean him from the meds. They may even say stay on the meds a little longer. So just pray please. Thanks so much!

God is good!

I am honestly not sure what this email would have been titled or how it would have gone until I talked to Shannon and Mike tonight. Shannon said isn't God good. I thought ok if she can say that after being in the hospital with her sweet little baby for 7 months then I can say that.

Sometimes all the doctor appts hit me really hard. Mike and I live our lives as though our children are true blessings, true miracles on loan to us from God. We try not to see their disabilities. Some days for me that's really hard. Especially days like today when our family is torn. Marlee Anne cried as she left with her daddy and Michala. She really wanted to go and be a helper but she didn't want to miss going to the doctor with Abe. Hopefully that will not happen often cause we have always done this as a "family unit" and that's how we work best.

They got to Shriners in South Carolina and Marlee Anne said DAD where's Michala's wheelchair. She said we have to go back home. He said oh no I will carry her. He forgot to get it out of the van. He drove mom's car and I picked her up to sit with Mary Elizabeth for me. Then he gets back home and the door is latched (we had to do that because Marlee Anne has a tendancy to sleep walk and will open the doors), he doesn't know it's latched and tears the sensor off the door. Something else happened too but I can't remember what. Not really the best of days.

Michala's appt went good. They want to look into getting her a prothesis again. They want us to wait a year and see if we can get better control over her seizures. Right now the hard seizures that she has knock her down. If she was standing and walking around it could really be dangerous. Since we have started going back to her neurologist in Huntsville we are hoping for better control.

I had my morning all planned out. I had some errands I needed to run while in Conyers and on the way to the doctor I realized I left the returns at home. Oh well! Great way to start the day.

Got to the peditrician and started crying when we weighed Abe. He has gained 5 oz. GOD IS GOOD! He does have an infection in both eyes. His tear ducts are under developed and it is causing them to clog and get infected. They did a culture and gave him eye drops. Just like Mary Elizabeth uses. Another connection to her?

All in all it was a challenging and wonderful day. We are blessed! Thanks so much for your prayers for safe travels and good visits.

My little sweetheart!

OK each day I fall in love with this little guy more and more. He has the sweetest disposition and is so very precious. These pictures were taken after having blood drawn and being stuck three times. He is showing off his boo-boos.