Dear Friends, A Letter From Samuel

Dear Friends,

As we speed our way through 2010 I wanted to take the time to say thank you. I’m so glad the Lord has brought so many of you into my life and the life of my family. The many cards and e-mails sent to encourage us or remind us that you are still following me along my journey have helped lift us up many times. In many ways you have been with us for the many challenges and milestones by keeping up with the blog and updates. The Lord has challenged us but put each of you as a relief along the roadside to help encourage us in our lives. Often the goodness and love of God manifests itself in the people around us.
The bible says prayers move mountains. This means that every individual has played a significant part in my life. Your constant prayers for me have brought about miraculous works from the Lord’s mighty hand. Medicine says I should not be here. God says only He decides who He leaves on this earth to bring Him glory and who He takes home to be with Him. Medicine said I would never draw my own breath, yet you all joined yourselves alongside my family and prayed in faith for God to fill my lungs with life giving breath. I breathe today because God saw fit to honor your faithfulness.
God calls us to stand in faith. He always upholds us even in the hardest of times. Even in the times when it seems hard to pray we continue to stand in faith. Faith is the substance of things hoped for, the evidence of things not yet seen. Christ has already won the victory.
I wish I could express my gratitude, but words fail. However, one day the Lord will reward. He will say, ‘Well done good and faithful servant. As you ministered to the least of these, so you have ministered to Me also.’ He will proceed to give you a crown of glory and recompense you for your prayers and faithfulness. He will do a far better job than I could ever do with my meager words.
Through your efforts and God’s good pleasure I continue to make strides forward. Many times we forget to see the blessings in our lives. We forget that life is but a vapor and that God holds the days of our lives in His hands. Even when the trials come and we can’t see our way God is with us. Thank you for standing alongside of me and having the eyes to see past what the world sees and seeing me for all the possibilities God has in store.
God says in his word, ‘Beloved, do not think it strange concerning the fiery trial which is to try you, as though it is some strange thing happening to you. Rejoice to the extent that you partake of Christ’s sufferings, that when His glory is revealed you may also be glad with exceeding joy.’ 1 Peter 4:12-13.
We are to be as a living sacrifice, testifying with each breath given. The Lord has enabled me to speak into the lives of people who would not have heard me as a “normal” child. I have been affectionately referred to by friends and family as a little missionary because God has given me the ability to minister in places that many cannot do so. Thank you for standing beside me and my family as we continue down this road that God has set before us. We all have the same purpose in life; God just equips each of us differently to accomplish that purpose.
My sister will be sending out an invitation the beginning of next week for our celebration of life on June 4th and 5th. Hope to see you all here.

With love,

Samuel Ian, ‘God hears our prayers and answers graciously’

Samuel's 36th Update

Yes, you really are seeing what you think you are seeing. Samuel is pushing up off the bed on his hands and supporting his own head and body weight. He remained in this position for about two minutes and turned towards me when I called his name. How’s that for someone who supposedly can’t move his body voluntarily? Needless to say we were very excited. Our nurse, the Therapist who was present at the time, my parents, and all of my siblings crowded into the room buzzing around like excited bees. It was a tremendous blessing for our family to witness this gracious act of the Lord.

Samuel has continued to gain fluid. Since Saturday he has gained 3 to 3 ½ oz. every day. Nobody can figure out what is going on or what to do about it, so I believe the general consensus is this is just another aspect of caring for Samuel’s daily needs. When the Lord is ready to fix this He will, and if it’s just part of His purpose for Samuel then Samuel will continue to deal with and endure under it.

Samuel has had a number of diet changes recently, the biggest one being that we are now adding fresh pureed carrots to his feedings. We keep telling him there is a whole world of food his taste buds are anxious to experience, but he’s got to get swallowing down before he can explore them. He’s still not interested in the prospect, but we hope someday he will be. As the weeks go on we are going to slowly introduce him to bananas and sweet potatoes. It was quite shocking the first time to see how orange a teaspoon of carrots turned his milk.

Samuel’s lungs have been junky as of late but at this point haven’t developed into anything real major. We’re just watching and monitoring things. Samuel’s temp seems to be regulating a bit more. He’s not constantly one extreme or the other. For the last month he’s fluctuated somewhere in the 97.2 to 98.4 range. This is a very big step in the right direction and will make travel and daily life much easier on Samuel if he can keep his temperature manageable.

And of course we mustn’t forget his exciting news! Samuel now has two front teeth (they came a little early for Christmas) and a bottom tooth that has poked thru. If that wasn’t enough the poor guy has two other teeth rising up under the surface of his gums, and a canine that is quite determined not to get left in the dust! This has sent Samuel’s oral secretions thru the roof however the bright side is that he seems to have no apparent ear infections and hasn’t been running a fever. Praise the Lord!! I’m trying to get pictures of his teeth, but the camera doesn’t want to focus in on them, which is a pity because they look quite cute. Oh well! You'll just have to come see them at his open house birthday party!

All in all things are pretty stable for Mr. Samuel for the moment and we are enjoying some wonderful signs of growth. May the Lord bless you in the warm days ahead.

Kaitlyn

Samuel's 35th Update!!

We are so excited that Samuel’s first birthday is just around the corner! All of us at the Emery household are planning a BIG birthday bash to celebrate the occasion, and you are all invited (but shhhh, it’s a surprise!)! At this point the exact date has still not been finalized but I will let you know as soon as it is.

I hope everyone had a wonderful Resurrection Sunday. Samuel certainly did. He was able to go back to church for the first time since the winter set in! It was so wonderful to have our whole family together in church. Usually Samuel and one of my parents is missing. Now that cold and flu season are over and the weather is warming up we are hoping to be able to continue bringing Samuel to church again.

Since my last update Samuel has continued to struggle with his Edema. He still has less output than input. Samuel’s normal weight gain is a pound a month, but he has gained 1pound 5oz. in 21 days. We would like to see him make strides towards getting some of this excess fluid off his body.

Samuel is having blood draws (1 to 2 x a week) at home and it is up to Daddy and I to get the vile up to Glennon as quickly as possible to minimize any changes that might affect the test results. This is our second week of doing his blood work this way and we seem to be doing fairly well thanks to Daddy’s fleetness of foot and the skill of our nurses. The results continue to come back without much change. His Electrolytes are stable, including his Potassium.

Our nurses, bless their hearts, are not thrilled with the fact that Samuel is having blood work done at home since this naturally entails that they have to do the blood draws (however they’d rather do it themselves than have him go up to the hospital to have it done). Unbeknownst to us the nurses had devised a plan between themselves as to who was going to get stuck lancing him and dripping the blood into the vile. They decided if Daddy came into the room to have them draw the blood before six a.m. (this is our shift change) than it was still the night nurse’s shift and she would have to draw the blood. If Daddy came in after six it was the day shift and our day nurse would have to draw the blood. Daddy came in at 6:01 and our poor nurse who got stuck (no pun intended) with the task was very misty eyed over the process. She did an excellent job though.

Samuel’s teeth have still not popped through yet. We are hoping they come in soon because the pressure is causing him some discomfort. I’m not sure if I had mentioned that Samuel has been getting more control of his neck movements. Ever since he was a few months old we, his nurses, and his OT have done muscle training exercises to help strengthen his neck muscles to hold his head up when he is sitting. So it was such a blessing when Samuel held his head up for close to ten seconds the other day when he was sitting up!!!! It was very exciting! He is also trying to position himself now when he is lying in bed by twisting his head around and moving himself into a position which I personally think looks very uncomfortable but apparently he is fond of. This is just another instance that shows that Samuel has his own personality and ways of doing things! You just have to have the eyes to see them.

As always we appreciate the prayers and hope to see you all soon when we rejoice is the miracle of Samuel’s birth and life! May the Lord bless you and may you be reminded of the beauty of new life as you see the budding trees and blossoming flowers that surround us and sing of God’s amazing works of creation.

Kaitlyn

P.S. Pictures to be posted soon of Samuel and Buttons.