Seizure

   This weekend was good. Samuel was still doing well.  He has been nauseated still off and on, but ever since the mountains he has been more like himself. We were so thankful for the wonderful time and memories with Samuel and our family.  This weekend he enjoyed watching the tractors and concrete truck come to our house! He is excited about his new space! Saturday his buddies Knox and Nash came to play with him and Micah. They had fun with legos! Sunday he was able to go to part of church and after that our dear friends took our family on their familys pontoon boat! It has been years since our family has been on a boat! We enjoyed it so much! Monday, Samuel had a good day and we were all sad to say goodbye to his sweet nurse. She will be working at St. Francis in the NICU. The babies there will be in wonderful care! Samuel even played on his eyegaze! We also had a fun visit with my sister Hope and her baby Chloe Bekah! The day was good.

Monday around 6 we were all in the living room and Samuel's arms and legs became very stiff. My sister, Melody and I were immediately by his side. He had 10 second seizures (petit mal) in March and went on some anti-seizure medication.  After a few weeks of him being lethargic and warn out, we decided to wean him off and see how he did. He did great! no seizures for the past 3 weeks!! We were familiar with these, so we thought he was starting to have them again.
After a few seconds of the familiar stiffness and his eyes staring into space he didn't come back like normal.  Instead he stopped breathing, and his body became limp. Melody quickly gave him oxygen and he was breathing again. But his eyes were bigger than I had ever seen them, his pupils were dilated and then he started blinking continually, like in a pattern. We cried out his name and he was not changing. I ran to get the seizure medicine and tried to dial Tim while running back to him. He was still having it. I quickly picked him up to hold him close. By this point Melody and I were both sobbing and calling his name and praying. I am so thankful for my sister, that she was here. My other 3 children were also in the room crying and scared. This was terrifying. I know that Samuel has a degenerative disease and we have tried to prepare for his going home (heaven). But to actually see before your eyes this happening is so hard. I know God is good, all the time. I praise him for each day, but in that moment it is difficult not to panic.
I was holding him and then his eyes stopped blinking and his eyebrows started to twitch. His eyes were still huge and staring. I decided to call the kids around us and we started to sing to him the lullaby I always sing and my mother sang to me ” Jesus, Jesus, Jesus in the mornin', Jesus in the noontime. Jesus, Jesus, Jesus when the sun goes down.” During this song he finally stopped and looked around. It had been the longest 8 minutes of our life (it felt like hours). Tim walked in and I felt a wave of relief. I really thought we were going to loose him. I feel like I should be more prepared, but I don't know how to prepare.
I passed him to Tim and Samuel looked as though he was going to sleep, but his arms and legs started to move everywhere. He did this for about 15 min. And then he became nauseated and threw up. After all of that he was so tired and still. Tim called his wonderful neurologist, who has seen Samuel since he was 5 months old. He said to give him some more anti-seizure medicine and go to the er if it happened again. He also wanted to see him at 2 today.
Last night I slept near him and he did not have another seizure. He was uncomfortable and needed some extra pain relief.
Today, he was back to being tired and lethargic. We went to see Dr. Morales and he wants to try some different medicine.  We are praying that this will help and not make him lethargic. We also weighed Samuel and he has gained 3lbs. this month!    :-)

Please pray for Samuel. Also, pray for our family. It is so hard to see your child suffering and not be able to do anything to help. We trust in God and His plan, but pray He will
Comfort us. Also, I pray to respond to the scary times with grace and peace. The other kids are ok, but I know it scared them all. They cried and after he went to bed we snuggled and Melody read Anne of Green Gables out loud to us. It was good to laugh and enjoy this together.  We all need the Lord and I am thankful for the peace He has given. Thank you for praying for our family and reaching out to us, we are so blessed!

I want to share this hymn a sweet friend sent to me a couple of weeks ago. I pray that He will still our souls.

Be Still my Soul

Be Still, my soul; the Lord is on thy side Bear patiently, the cross of grief and pain; Leave to thy God to order and provide In every change, He Faithful will remain. Be still my soul; Thy best, Thy Heavenly friend Thro’ thorny ways leads to a joyful end.

Be still, my soul; Thy God doth undertake To guide the future as He has the past. Thy hope, Thy confidence let nothing shake; All now mysteries shall be bright at last. Be still, my soul; the waves and winds still know His voice who ruled them while he dwelt below.

Be still, my soul; the hour is hastening on When we shall be forever with the Lord, When disappointment, grief and fear are gone, Sorrow forgot, love’s purest joys restored. Be still my soul; when change and tears are past, All safe and blessed, we shall meet at last.

Enjoy the pictures from our good weekend.:-)

End of preschool:-(

Today was my baby's last day of pre-school.  He had his party today and end of year program. It was adorable...of course. :-)   Micah is FULL of joy and energy! After the trials in life I am thankful for the joy the Lord has given our family in Micah.

Samuel had a good day today! He had been very happy! He had a visit from his best friend, Knox today. When Knox came in Samuels face brightened up! They played on the trampoline and Knox read Samuel a book and then they played wii. It was so much fun for Samuel! We then decided he had done so well that we would take him to Micah's program. I knew it would not be too long. This was his first outing since Sunday!  He did well, but after an hour he did start to get nauseated so we came on home. I am thankful we were able to enjoy the program and Samuel got out of the house for a little while.

I do miss my girls, but I am SO happy for them! I know they are having a wonderful time at camp!

As I think of these sweet boys today I am reminded of this verse:

Romans 12:10 NASB
”Be  devoted to one another in brotherly love; give preference to one another in honor”

I am thinking about how Micah and Knox love Samuel and do not expect anything in return.  Now that is true friendship, devotion and honor. They are patient, kind and giving even when all he can give them in return is a smile. I am constantly amazed how God uses the simplest of things to teach me. 

Camp

This morning Samuel and I are hanging out hoping to rest some. He had a rough afternoon and night last night. He had been doing well yesterday and I wanted to be able to take my girls to camp and get them settled. My sister, Melody said she would take care of him. I am so thankful for her and my mother, who are able and willing to care for Samuel. I can't leave him with any sitter and he needs someone by his side constantly, so he is a full time job! Also, all of his meds, treatments, quirks and handling him, etc. are tricky, so we need people who are capable and know him well. So we left.  6 moms, 13 girls, 2 boys and one baby caravaned to camp! It was fun to share this experience with friends and know that my girls will have plenty of buddies this week!  We made beds, took pictures, took more pictures, said goodbye several times and by then the kids were wondering if we would ever leave! We finally did, an hour and a half later! I didn't have a signal so I used a friends phone to call home and check on Samuel. Melody told me he had been very sick, throwing up and struggling and I was 2 hours away! It seems like every time I go out of town he gets worse, but I really wanted to be there for my girls,too. This is a struggle that I am dealing with right now. It is very difficult to be with him or near him and be there for my other children, too. I know my girls would have been fine riding with friends, but I wanted to check then in and help them get settled. That's what mamas do!  Tim did come home and help Melody. I was home by the time he needed his night time medicines, so he went to sleep soon after I was home. I held him and told him I was home and we snuggled a little before I put him on his bed.
He slept fine until 4 a.m. and then it was rough again. Tim and I both had to suction him, give his oxygen, medicine and he was still throwing up. His ferrell bag (holds his stomach contents) was full of air from his tummy and had 100cc of fluid, too.  We finally gave him a phenergin suppository and he used it as a laxative... Tim and I had to laugh at this point. We finally got him clean, dry and another suppository and he was calm... For about 30 min.. I ended up bringing him to bed with us so he could snuggle (her always enjoys that) and he calmed down some. He is junky in his lungs and tired today, but he is calm right now. A few people have asked a little more about mitochondrial disease and my friend posted this video last week. It is very informative if you want to understand a little better.

Faces of Mitochondrial Disease youtube.com

Thankful today that my girls are happy and having a wonderful time at camp! Also, thankful that He supplys all of our needs.

Philippians 4:19

”And my God shall supply every need of yours according to his riches in glory in Christ Jesus.”

Extreme home make over! (written Monday morning)

  Tim left CNH Thursday night so he could be home Friday morning for a special project. So my amazing daughters helped me clean, wash the sheets and towels, etc. in the cabin Friday and we left our ”mountain house”. It was sad, but it was time to come back home, another little boy and his family were about to have their turn!

When we returned Friday night the special project was finished!!! We now have a new storage building, everything moved out of our garage and the garage is gutted and ready to transform into our new therapy/school room!!! Wow! It was amazing! This is something we have wanted to do for a long time and thanks to Mr. Joe and his helpers from Rescom and of course, all of Tims planning and work, its now happening! Hurray!!!! We are very excited about having some more room!  Praise God for His provision!
  Samuel has also been doing good!  He was able to sleep most of the way home from NC, so that helped his naseau. He was also able to go to church yesterday, which is wonderful.  He did get very sick when we got in the car after church and last night, but today he is smily and good so far. :-)  he even picked a flower for me today. <3

  Today my girls are going to summer camp for the week and they are so excited so we have been unpacking and repacking! Micah also had bike day at school so we have been crazy busy, probably like everyone else wrapping up school, etc.!  
P.s. Micah is loving legos and he and his friend at school named their lego design a ”blay blay”....so the picture is that.?!   He is so funny! He is always making us laugh!

Thankful that my children are making happy memories!

 

Mr. Ernie's

Today (Thursday) we woke up to another beautiful day! Samuel was doing ok so we floated down the river again. After lunch we were excites to go to Mr. Ernie's farm. Each week he invites the family staying at CNH to visit and take a hayride, see the horses and sometimes ride a horse. Last time we went, his horses were in a different field so the kids couldn't ride, so this time they were looking forward to hopefully riding.   After a long and fun ” hayride” (where Micah took a little nap) the girls were able to brush the horse. They really wanted to ride, but were nervous to ask. Micah walked right up to Mr.Ernie s cousin and said, ” Can I ride em?” He said sure and so they rode...bareback! Samuel was content to sit and watch, but he loved feeding and petting the horse. It was another special day here and we are sad to leave tomorrow.  Here is a link from the camp so you can see Samuel featured!   http://www.campnewhopeblog.com/?m=1

Thankful for giving hearts today and people who love special needs families. God has truly blessed this place and the families who need it.

The New River

Last night was rough for Samuel, so this morning he was not well. The sun was finally out and it was a perfect day outside! After Tim made us breakfast and we did all Samuels treatments and medicine and everything we were not sure what to do. He was miserable. We decided to try his naseau medicine and see how he would do outside. After sitting on the porch we moved to trails. He seemed to perk up, do we thought we would try floating down the rover (without getting wet).  He enjoyed it so much! All of the kids, Tim and I had a great time going down the New River! Its my favorite thing to do at CNH! So relaxing and fun. We went down a few times and by the 3rd Tim and the kids were wet from their water fight!  We finally rested by the river and Tim pulled Samuel in his boat back and forth with the rope for a while. 
A photographer called and wanted to come and take some pictures if our family tonight and I am really excited about having some special pictures of our family here.

After thinking this would be a bad day for Samuel he ended up having a great day. He did get sick a few times, but I am thankful for the sweet time we all had today!

I was reminded and encouraged greatly by this post I am adding atty the bottom.  If you know any ”special mothers” especially those with a child who cannot speak with words or control their movements, this is a precious message for them! It makes me cry with joy and encouragement!

http://theworksofgod.com/2012/05/13/her-children-will-rise-and-call-her-blessed/