Friday, May 18, 2012

"there's a battle ahead of you"

Edmond's seizures have decreased to 4-5 episodes a day. He was up to 20 before we started the topamax. And the ones he is having now are quick, less than 10 seconds long and come in clusters of 3 in a row at a time. The topamax has made him jittery or restless it seems. We are hoping this is not a longterm side effect. We will have to look into other treatment options if it becomes too much.  CCS is trying to deny him services, but i'm not worried about it, I know he qualifies, it's absurd that they are even trying to deny him. My neurologist is working on making sure they accept him as a client. CCS is California Children Services and our first line of service in regards to any equipment needs he will have now or in the future. Edmond is quickly approaching his 1st year birthday which we are all excited about. He is so beautiful and handsome and cuddly and kissable. We love him to pieces. Giving him his medication is a little more involving since he takes two and one has to be mixed into food, the other is liquid. I am expected to return to work full time on June 11th, and I am a little anxious about how my mornings will be trying to get Edmond's medication in him daily before I leave, and then I can give him his night dose when I get home from work. Breathe in, breath out... here we go... back to my crazy job.  Um, PRAY FOR ME! 

I recently received an email from a close friend of my family who was looking in her prayer
journal and came across a word that God had given her-- for me --back in 2009 and wanted 
to remind me of it in regards to all that we are going through with Edmond. 

 The word was... “There’s a battle ahead of you and its going to get so intense that at times you will feel like giving up- but you must hold on, and ENDURE the battle. Verily I say unto you, at the end of the tunnel the Lord will give you Victory and all glory will be given to His name. Therefore, ENDURE the battle“!! Read Psalm 20

I remember at the time that I was given this "word" from this woman I wasn't happy about it. My dad had recently passed in 2008 and I was up to my elbows in grief and weariness wanting a break from life's difficulties. I found that break in marrying my husband and in becoming pregnant with Eden. These two joys have sustained me through so much pain. I still dont understand why God is doing what He is doing, but I'm still trusting him and enduring this battle that I am praying He fights for me, because I cannot fight this kind of battle, it is too great for a parent's heart to bear really. We all have something hard to bear, I still believe God will help us if we allow him. 

Psalm 20
May the Lord answer you when you are in distress;
may the name of the God of Jacob protect you.
May he send you help from the sanctuary and grant you support from Zion. 
May he remember all your sacrifices and accept your burnt offerings.
May he give you the desire of your heart and make all your plans succeed.
 May we shout for joy over your victory 
and lift up our banners in the name of our God
May the Lord grant all your requests.
 Now this I know:
    The Lord gives victory to his anointed.
 He answers him from his heavenly sanctuary
    with the victorious power of his right hand.
Some trust in chariots and some in horses,
 but we trust in the name of the Lord our God.
 They are brought to their knees and fall,
but we rise up and stand firm.
 Lord, give victory to the king!
    Answer us when we call!

Wednesday, May 9, 2012

Edmond is doing so much better. Yay!

Edmond turned 10 months yesterday and is doing so much better. He is on a secondary medication that has significantly decreased the seizures since Friday. Hopefully they will disappear again and give him a real break. Still asking God for supernatural intervention, daily. Still believing God is with us and for us and watching over our son everyday.  Edmond had really good alert time today while getting physical therapy. The therapist and I talked about how well he is starting to grasp, this is a huge milestone for him. He is also focusing a great deal more over the past few weeks as well as tracking too. I even caught him looking at one of his hands briefly the other day, that is a huge deal too. In other good news, I found this little medication dispenser that has a bottle nipple on it, and using it today made it super easier to give him his Keppra. Wish I had known about this months ago, but glad to have it now. I also found a swimming program that we can take both Eden and Edmond too at the Janet Pomeroy Center. Eden's already started going and she loves it. We can't wait to get Edmond in the water.

I finally brought myself to look up other websites for children with lissencephaly. This was a huge step for mommy, and I'm proud of myself (pat on my back). Reading about mommies and daddies going through the same fears and hopes that we are was good for me. We are all... just living life like everybody, one day, one step at a time.

Friday, May 4, 2012

New Medication

Edmond started Topamax today in addition to his twice daily dose of Keppra. Topamax is a sprinkle pill, so we sprinkle it in his food and feed it to him. I often have to remind myself that adults who have seizures say that they dont feel pain during their episodes, they are just weak afterward and feel like they had blacked out suddenly and don't remember the seizure. (Please correct me if anyone reading this has seizures and this is inacurrate, this is what I've been told). Although the seizures are hard on Edmond's body, they do not cause him pain, it's almost harder on us to watch him go through them. We need continued grace for him in the aftermath of the seizures. He had 7 seizures on Tuesday, 20 plus seizures on Wednesday, and today only 6, but still convulsions. He also threw up during one of this seizures because he was in the middle of a baby food feeding. Dehydration can become an issue when vomiting accompanies his seizures so we have to be watchful of his fluid intake. Fortunately he has been taking bottle well ever since this vomit incidence and soiling his diapers well too. Vomiting can also lead to aspiration and infections so while he is having this seizure storm we need to be vigilant about helping him to be comfortable and safe while having seizures, turning him on his side... etc. He is still eating well when he has awake time, so that has been good. He is doing better today. Hoping to get the seizures under control soon.

Tuesday, May 1, 2012

The seizures have started again...

Praise... the God of all comfort, who comforts us(I) in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.   2 Corinthians 1:3

Edmond has been having seizures for the past week. On Monday morning, (yesterday), he started convulsing as well while having them. We upped his dose on Friday and then again on Sunday night so that he is on the maximum dose of Keppra for his body weight at 4.5ml twice daily. Thank you for your prayers. We have a doctor's appointment tomorrow with his neurologist, I'm sure they will want to discuss adding other medicines to his treatment regiment, I hate doing this because I know it will dope him up, but if we don't stop the seizures he will be sleepy all the time anyways. Edmond continues to grow and eat very well, thank God for that. He has been extra sleepy due to his recent increase of breakthrough seizures. 

Edmond showing a little dimple with his Lola Vernie
It's difficult times like these that we have to remember past encouragement we have received regarding Edmond. There is one particular event that I cling to often and I'd like to share with you. 

When we first received the news about Edmond and were sitting stunned in that ICU hospital room, God put the most unusual person on my heart to call and come and pray for my son. It was my ex-boyfriend's mother Sally. I hadn't really been in touch with Sally since I had dated her son, over 5 years earlier. Growing up as a pastor's kid, I know a great network of pastors and leaders that could have crossed my mind and I could have wanted to call to come and pray for Edmond, but nevertheless, I felt God putting it in my heart to have Sally come. I got her number from a mutual friend and left her a voicemail the next morning from the ICU room simply asking her to come and pray for my son. Sally lived in the neighborhood next to the hospital so I was sure it wouldn't be hard at all for her to come by. To my surprise I didn't hear back from her until 2pm that day. When she finally called, she said she was in Russian River at a women's retreat with her daughter and just happened to drive away from the site on a short break and was able to get reception on her phone which showed she had a message from me. She said she felt strongly that she needed to come directly to me, so her daughter and her just kept driving away from Russian River and straight back to San Francisco, leaving all their stuff behind at the conference. 

I was a little surprised at how quickly she had made the decision to leave the conference and come to the hospital, especially since it was a 3 hour drive. I soon discovered why Sally had felt so strongly that she needed to be with us. Upon arriving to the hospital, Sally showed me a text message that she had received from a Christian lady who she had met in a church in Hawaii, THREE WEEKS earlier. Three weeks before we knew anything was wrong at all with baby Edmond. The text message said, and I quote, 

"In this assignment you are to pray a true intimate eternal relational encounter over baby’s family!! God is calling them!! Attention!  Baby is already covered!! Keep praying for baby’s family!!"   

Sally said to me that she had been praying for the baby and family described in this text message for 3 weeks, asking God to show her, who is this family? who is this baby? When she saw that I had left her a voicemail, which was completely out of the blue, and that I needed prayer for my son, she immediately remembered the text message and scanned through her messages for it to read it again, and knew that this text message was for me and my family and that is why she felt the urgency to come and pray with us for baby Edmond. At the time Adonis and I cried and thanked God for his timely word of encouragement. "The baby is already covered" she said. I hold onto this word in times like these, I was ready for God to completely heal and restore Edmond that very day, my faith was so encouraged by this event. Although it has been 7 months since that day, we continue to believe that God has a plan for our family and it is a good plan, no matter how hard days are and how hard things seem. I know God's got our back. We continue to believe that Edmond is, "already covered." We continue to covet your prayers of faith. God is in control.