My Children

I love to see God working in my life especially through others. Recently someone posted a scripture. One that I have heard and read time and time again. It got me to start studying that more and more. I want to share that scripture and a couple more and some thoughts I have. The following is something that I found and wanted to share.

Psalm 139:14 reads; "I will praise you, for I am fearfully and wonderfully made; marvelous are your works, and my soul knows very well." In the original Hebrew text, the word 'fearfully' means: with great reverence and heart-felt interest and respect. The word 'wonderfully' means: unique, set apart, uniquely marvelous. WOW! No wonder the psalmist bursts out with exuberant praise in this verse. He realized the great love and concern that went into his unique and very individual creation. The next time you have the temptation to ask the Lord, "Don't you care what is happening to me?" Remember this verse, because the total truth is that He cares with an acute intensity that cannot ever be measured.

For more understanding regarding this subject, let's take a look at Ephesians 2:10. "For we are His workmanship, created in Christ Jesus for good works, which God has prepared beforehand that we should walk in them"

God knew my children long before I had even dreamed of them. He knew exactly how He would make them. Who am I to question that this is not right. That they are not perfect! God made them. Is anything that He does not perfect? No!

Last night a friend of mine's son wrote something very loving and touching to her. I told him that I hope that Abe will love and adore me as much as he loves his mom when Abe is older. As I held him at 2:00 AM feeding him while he was having a really bad seizure and overwhelming peace came over me. I know without question that God has Abe in His arms, under His wing, in His complete protection. To God these seizures are not big things. WHY am I wasting time on praying that God will stop the seizures? God has much bigger plans for Abe's life and these seizures are not going to stop God from working in Abe's life. Quickly my focus and my prayers went to praying for Abe's life, for God's will for Abe's life. My prayers are too small for him. I should be praying big prayers for Abe.

I am so very thankful for each of my wonderfully and fearfully made by God children. I am so very thankful that each day God doesn't give up on me and continues to teach me what He wants me to learn. What I need to become more Christ like. I want the negative, oh whoa is me, burden filled stuff out of my life. That is what I will continue to work towards.

My favorite scripture is Jeremiah 29:11
"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future."

Why am I sharing all this with ya'll? Because I need prayers for me to focus on this. I want to keep my focus right and not let it stray. I don't understand God's plan. Not only for my life but others who are suffering, others who have lost, others who are going through trials and tribulations. If we are walking in the way of the Lord He will guide us and protect us. During that time it may not seem that way but He is. It may take going through the storm, a long hard storm before we see the sunshine. I honestly believe though that He will not leave us, forget us or let us fall as long as we keep our eyes on him and stay within His will.

I love each and everyone of you! I am so very thankful to have you in my life, praying with me!

Miles for Michala t-shirts

Below is what Miles for Michala's t-shirts will look like for Relay for Life this year. Thanks to John for designing them! They will be printed on light blue shirts by Just Right Signs & Print. Short sleeve are $10, long sleeve $12 and sweatshirts $15. Everything above the cost to have the shirts made will go to Relay for Life. If you would like one please contact Debbie at dcurtis@co.newton.ga.us . She needs to get the order in soon so Melinda and Mark will have time to get the shirts made. Thanks so much!

Marlee Anne-ism

Abe was very agitated and Marlee Anne was trying to find out why. He had scratched his eye so I put socks on his hands. She took the off and said he hands were on fire. She said she talked to him and told him why he shouldn't scratch his eye. He settled down and went to sleep. She told me that if I would give him some respect and not put those socks on his hands and burn him up he would do better. She said mom you just have to talk to him and tell him what he needs to do. That girl!!! She is too much!!!

Marlee Anne's prize

Wednesday Marlee Anne got a phone call from Young Americans saying she won a basket. As soon as she got off the phone she wanted to call Aunt Kim because she knew she had done that. Sure enough Aunt Kim had put everyone's name toward baskets and Marlee Anne won one. She was so excited and couldn't wait to get it. I asked Kim if Grace could go up and get it. She said it was too big. Thankfully we had a little warning ahead of time when this big thing came in the house. Marlee Anne was so excited to open it. She started giving Mary Elizabeth, Michala and Abe stuff from it immediately. Her giving spirit came out quickly. I am sending pictures. I didn't notice that Marlee Anne had not washed the paint off her nose. She had just come home from painting at Win's house. I kept forgetting to email this and she kept asking me too. Today she stood beside me until I got it done.

Thankful

I am thankful for today. Right now I am thankful it's over. I am thankful it's behind us. It's hard to explain. I am thankful for those of you that "get it". Those that understand why it's so hard. I am completely exhausted. Thankful I didn't have to lift a finger to make Abe's party happen because if it was up to me he wouldn't have had one. If it was up to Mike we would have had cake and ice cream. Thankfully Aunt Kim and Uncle Papa step in and did it. Thanks to them Abe had a very nice first birthday. I am thankful that Aunt Kim and Emily took pictures so we do have pictures of his birthday. I am thankful to the family and friends that celebrated with us.

Instead of gifts for Abe we asked that everyone bring a blanket for the NICU or a donation towards the rocking chair we are putting in the NICU in honor of all the wonderful doctors and nurses that got us through those first 5 weeks of Abe's life.

We have two beautiful rocking chairs and many many wonderful blankets. Hopefully the nurses in the NICU along with the precious babies will be glad. Not everyone listened to our request for those two things or to the fact that we didn't want to have any wrapped gifts. We wanted this to be a fun and tearless (is that a word) day. That so did not happen. I don't mind crying but I hate being weepy. I was very weepy.

In spite of all the prayers and wonderful well wishes of a seizure free day Abe started with them as soon as he woke up. I was trying so very hard not to give him a Klonopin wafer. I wanted everyone to see him awake and alert for a little while. It didn't take long to realize he was going to have to have some relief. I gave him the wafer and quickly he was having some respiratory issues. I brought his oxygen but no nasal canular. My sweet nephew went to the house and got it. Soon he was showing signs of some low sugar issues or something that his body wasn't liking. I just did not pack well that morning and didn't even have his glucose meter. My precious niece went to the house that time. By this time I was struggling with my emotions and I was sick at my stomach. I wanted to run. These are times when I wish we were at Disney World.

We had a wonderful meal as always that was prepared by Uncle Papa. I think everyone enjoyed the day. Abe's sweet tender hearted daddy prayed the sweetest prayer. I am so very thankful for my husband and children that God has blessed me with.

We received so many nice emails and messages today. We want to thank each of you for those. I am thankful for those of you that said I understand and it's ok for you to feel this way on his birthday. I am also thankful for those of you that said I don't understand and I am praying. A friend of mine sent this and I keep repeating it over and over.

Praying that each new day be blessed,with each one being better than the one before it.

What more should I want? What more could I ask for? That's perfect. Today was filled with so many blessings. This was a day for healing. I know that when the healing takes place God is molding me. It's not always so pleasent during the molding process. Even though I want to be molded into a better person, it's still hard. I keep hearing this song. "He's still working on me to make me what I ought to be. It took Him just a week to make the moon and stars, the sun and the earth and Jupiter and Mars.How loving and patient He must be, He's still working on me" I feel Him working on me and for that I am thankful. I am thankful He hasn't given up on me.

I am not sure whether to share this or not but a high point for the party was a special appearance by Sheetarius. That made my day. It was a much needed laugh for me. Thanks Sheetarius! I just hate that we didn't get a picture of you with the birthday boy. We will have to make sure we get one at Relay.

Tomorrow we are off to the Big Apple Circus with Camp Sunshine. We are all so very excited about that. A day of laughs and spending time with some dear friends. Hope everyone is having a blessed weekend!

Thank you so much for all the prayers for today!!!

Abe's 1st birthday!

This is not how I dreamed Abe's 1st birthday email would go. I thought about waiting but I could really use the prayers now and I know tomorrow will be busy. For those who have been through this ya'll know where I am coming from. For those that don't, thank you for standing there in support praying me through it. Satan and I have been struggling the past few days. He temps, I scream, cry and quote scripture. Around 2:00 this morning I received an email from a precious friend who is not typically up emailing that time of night. I asked her to pray with me about this. You see the problem is that satan keeps throwing up in my face what Abe cannot do and which milestones he hasn't reached. I honestly wish I could have just left this out of this email but ya'll know that's not me. Over the years I have learned it's much better to share my whole heart than just parts of it. So here it is.

I wish so much for Abe but I am wishing for the wrong things. I am wishing for things that world thinks he needs, thinks he should do, thinks makes a perfect child. Well I am human and I think that too. I want him to sit up, smile, laugh, babble, make a mess in his birthday cake, play with bows and presents. OK so that's not going to happen on his first birthday. I want to be ok with that. I want to know that this child God has loaned me to take care of for Him is just what He intends for him to be.

I know that my friend prayed for me. Not long after that it was as if God sat right down beside me. I felt His comforting hand and heard His mighty voice. He said, Abe is just how I made him. He is perfect. He reminded me that He knew all this was going to happen. He knew each step of our journey. He knows each step ahead and as long as we rely on Him and follow Him He is not going to let us fall. He can't control the times I take my eyes off of Him and I stumble like today.

So now here I am praising God in a big way for our precious little baby boy. If you had asked me several times throughout this past year if he would make it until his first birthday I would have said no. There were times when the doctors even said so. I was so very scared! Is Abe a miracle from God? Without a doubt. There were times when we watched his body healed when the doctors said it couldn't be done. They couldn't but God could and He did. So now I am celebrating the baby that God made. The one that is perfect in His sight.

I also want to thank each of you for praying us through this year. Without each of you this journey would have been very lonely. Each of you have played a part on getting us through. We are so very thankful for each of you.

Abe

I hate updating when I am tired because I feel like the update is .... well I don't know. Any way the past few days have been hectic with ups and downs of Abe's seizures and oxygen. However some weird stuff happened. We had a new med, one that we had tried for Abe before but it didn't seem to work well so we stopped. We decided to try it again. It's only used as an emergency med when we need to stop a seizure.

Well let me go back. Monday morning when I took Abe to the peditrician it was because Sunday we had to increase his oxygen to 1 liter. We had noticed throughout the day several times that he was requiring more oxygen than usual. This would happen when he was awake. It was as if he was struggling to get air and then when he was sleeping he was settled, not fighting and breathing better or getting more air in. After watching this on and off for awhile we determined it was a seizure that he was having, getting anxious and requiring more oxygen.

Dr. Patonay sent us to Egleston ER for chest x-ray and for them to see what they thought. The x-ray showed something in the right upper lung. Collapsed lung or pneumonia. So we went home with antibiotic, chest PT and breathing treatments as needed.

When the ER doctor came in the first time she said oh he is having a seizure I will come back when it's over and access him. She wanted to know how long his seizures lasted. I told her any where from 1 minute to 20 minutes before I would give some type of med to stop it. She said well you are only comprimising his breathing more by giving the emergency meds. She went on to say that we know these seizures are very hard to control. Yes mam'. We know they may be causing some brain damage. Yes mam'. She said if we thought he would grow out of them by the age of 2 I could see trying to stop them. She said she wanted me to discuss with Dr. Holt a plan to try to better control them but she did not think I should be giving so much emergency med to him. OK some of this may have seemed harsh and I could have taken it that way but I didn't. For the past months I have been praying that I would get to a point where Abe's seizures would not control my every thought. I HATE the things. I HATE to see him suffer through them. I would love nothing more to get them stopped. However it took me years to get to a point where I said ok I know Michala is going to have seizures everyday. I am right now accepting that they will be a part of our lives, but they will not control us. That took years of battling within me, horrible highs and lows, and a very dear Aicardi mom being honest with me and saying you have to come to a point where you say I am ok with this many seizures per day. Work to get to that point but realize complete control is not possible. That day was a turning point in my life. Talk about peace. Well that's where I want to get with Abe. Every single day is spent with trying to control his seizures. I want to find the place where he has some time where he is happy and alert and not drugged and not seizing. It's there some where. We will find it.

Some children's seizures stop when they are sick. Michala's will do this. Abe's was increasing so I wasn't thinking he was sick. When Mike got home with Abe's antibiotic I gave him some right then. Right before that I had given him Klonipin wafer, the new emergency med. Since then he has had times where he is better. I don't know if it is because the Klonipin broke a cycle or that his body is reacting to the antibiotics. The last time he had a cycle like this was after his last surgery. He was on antibiotics in the hospital and came home on them. His seizures picked back up when he stopped the antibiotic. Could all be a coincidence but I think it's worth looking into.

We are still working on his oxygen level but a lot of that does seem to have to do with the seizures. He has smiled but Mike thinks it's a seizure and I am leaning towards that way even though I don't want to. I do like those seizures better than the screaming ones though.

His gtube site has started bleeding and is irritated. We are waiting to hear back from the surgeon as to what to do about that.

He gained back the two lbs he lost on the Keto diet plus some. He weighs 17.5 lbs now. WOOHOO!!!

Thanks so much for all your prayers!!!

WOW!!!

As I sat down to start typing this email for some reason a very old email from when we were in Iowa popped up. I stopped to read it. We had been in Iowa for 6 weeks. As I was reading it I was reminded how blessed we were/are. While in Iowa during Abe's clubfoot treatment he was fussy from the cast but one thing was he never had any seizures. I realized just how blessed we were not to have that on top of everything else that was going on. He could have easily started his infantile spasms before then. I am thankful!

Well when we started the keto diet back Abe's sugar dropped considerably and his seizures were off the charts. We were giving Ativan and Diastat pretty much around the clock. Monday around midnight I ended up calling the hospital because I was getting scared and wasn't sure what to do. Thankfully the doctor on call took the time to calculate Abe's weight before telling me what steps I could take. This morning Abe had still not had a wet diaper since the night before.

Oh let me go back. Since his sugar was dropping so low it was decided that we would put him on continuous feeds. That was started Monday around 6 pm. He was continuing to have lots of really hard seizures lasting way too long. The ativan wasn't touching it because they were from the low blood sugar we assume. Usually within 5 minutes his seizure stops and he is out from the diastat. Not this time.

We are still not sure what happened with no wet diapers. By the time I talked to Mo this morning I was really worried. She listened to what I had to say and said I will call you back. It wasn't long before she called and said stop the diet and give him a bolus of breastmilk. Within minutes of the bolus he was calming down because his sugar was back up to where it should be or where his body is used to it being. He was still having seizures and still had not wet his diaper. I was supposed to give him another bolus within 1.5 - 2 hours. Still no wet diaper after that. Another bolus 3 hours laters. When I checked his diaper then it was wet. WHEW!!! Talk about relief. We knew that he could have been dehydrated, but we also knew that the diet could quickly make his possible mito disease progress and shut down his kidneys quick. My mind wondered and worried way too much. I was never more happy about changing a wet diaper.

He is still having lots of seizures but thankfully they are not from low blood sugar and ativan and diastat seems to be doing the trick. We don't know our next step. We know that his body gets in dangerous crisis with the diet right now so that's out for now.

I was just saying that it took me years to accept that Michala was going to have seizures everyday. I spent every waking moment trying to figure out what to do to make them stop. Finally a wise mom told me I had to figure out what was an acceptable amount for her. I had to face that we were not going to get complete seizure control. Boy did that make a difference in my life when I accepted that. A peace that I had been longing for. That's not to say I don't cry and hurt each time she has one but I do not waste my day and miss out on the blessings because I am drowning in it. So I am not there with Abe yet. I want better control. I would love complete control and that is still my prayer. I have learned over time that if my prayer is not answered right now then there is a reason. God's timing is always better than mine. We will continue to take this minute by minute and see which direction is best. I really thought this would be his miracle. I was hoping. For whatever reason right now it isn't. We will get him settled back down and regroup and discuss which direction to go in now. What to try next.

Thanks so very much for your prayers during the diet. I wanted to give it an honest effort and his body quickly told us it was in danger and it was time to stop.

Lots of stuff!

Tomorrow Abe has an appt with the surgeon for post op for his gtube. I think this is the visit where I have to take the gtube out and then put it back in. Some added prayers that I don't freak would be nice. I still can't figure out why it's freaking me out.

Abe's strap on his shoes is breaking. He has to have an appt with the orthodist to have it measured and ordered before they will send new ones. We are not in position right now to drive to Iowa for followup because Abe is really not in the condition to do that at this time. We have started the application process for Shriners Hospital and hope to get him in there to see Dr. Westberry soon. Dr. Westberry practiced with Dr. Ponseti for a year so we hope to be able to use him for followup. We are a little concerned that Abe's right foot may be relasping so it needs to be checked soon. Please pray all this will go smooth and that he is not relasping.

Yesterday Abe had about 10 infantile spasms as opposed to the usual 100s that he has per day. He had 3 grand mals. His tone is still so much better. He watched TV which he has NEVER done. I was holding him at 5 this morning and Mike walk over and said hey Abe and he turned and looked right at Mike. He had a really small grand mal today and about 5 spasms so far. We have decided to wait about starting the keto diet back. We are going to give him a few good days hopefully. Please pray his progress continues and he continues to have better days with his seizures. He hasn't smiled but he is babbling and squealing.

Thanks so much for your prayers!!!