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.

34th Update

Samuel is still struggling with his Edema (I was told Edema is not spelled with an A) and urine output. Before we left the hospital one of Samuel’s Dr.’s lowered his Lasix to help keep his body from flushing out more potassium. Mom is concerned that decreasing his Lasix is causing him to gain back some of his fluids. This is still our main prayer concern. Samuel will be going to the hospital today for blood work and an evaluation, so the Dr.’s will have to decide if they want to raise the Lasix back up.
On a fun note Samuel has two front teeth days away from breaking threw his gums. They are white and swollen and you can clearly see the outline of the teeth! We are very excited as Samuel reaches yet another milestone in his life.
Samuel has also been gifted a real live breathing bunny by one of his nurses. She had tried to convince Daddy Samuel needed a puppy but my Daddy said no. Instead our nurse was at the feed store (around Easter time the feed stores sell baby bunnies, ducks, and chicks) and she fell in love with one of the rabbits we now know as Buttons. She is very sweet and likes to sit on Samuel’s feet. Buttons is living with Samuel’s nurse for now and coming for visits.
I want to thank everyone for their encouraging E-mails, cards in the mail, and prayers. We appreciate every overture of love and friendship. We are also keeping the prayer concerns sent our way in our own prayers and thank you for allowing us to participate in your lives as well. God’s word says to bear one another’s burdens and we are blessed to help bear your burdens as you all help to bear ours. May the Lord bless all of you as you go through your day.
Kaitlyn

33rd Update

A quick update. Samuel arrived home yesterday. My parents decided there was nothing being done in the hospital that we couldn’t do at home, my Mom says we are playing hospital at home. We were originally going to have to do daily blood work, but neither Quest nor JMH would finger stick Samuel (we do not want to have his blood taken through his veins). Instead of driving up to Cardinal Glennon daily his doctors have decided we can just take his blood when he comes in for appointments. He will be heading in for an appointment on Monday and we hope to find his Potassium still doing well and some of his Adema reduced. Samuel has been responding somewhat to his new form of treatment, but we are still dealing with his fluids. We are so glad to have Samuel home!
Kaitlyn

Samuel's 32nd Update

I did not return home from the hospital until about nine last night and had to get Elianna to bed, so I was unable to send out an update. I will do my best to try to put all of the medical madness I learned yesterday into laymen’s terms so that the information is hopefully understandable. My mother and I had a long discussion yesterday as we waded through the information.

The specialist came yesterday after running his tests and thinking over Samuel’s situation and has decided on a course of action. The Renal Dr. thinks that there is an imbalance in a hormone secreted from the adrenal glands. Apparently this hormone signals the kidneys to dump potassium and retain fluids. The hormone basically tells the body that there is not enough fluid in Samuel’s blood and will not let the body release any fluid as a form of self preservation, thus creating the decreased urine output. This hormone, called aldosterone, is thus causing the body not to respond to the Lasix.

The next question was why the fluid in Samuel’s blood is low. The Dr. thinks that there is a possibility that Samuel has low albumen. When there is low albumen in the body this can cause the blood vessels to leak fluid into the surrounding tissue causing the adema.
Why is the Albumen low? Possibly because of low protein. The question is, is Samuel dumping protein, or just not getting enough in his diet. Nutrition came in and said that although Samuel has sufficient calories, he is low on potassium in his diet and proteins. This has led them to change his vitamin and begin exploring the different options of how to add protein into his diet without added calories. We are still waiting to see if the urinary tests show whether or not Samuel is spilling protein into his urine or not.

All of this is really going to be trial and error. Samuel started a new diuretic (like the Lasix) last night in the hopes that it will help reduce the fluids. This new drug inhibits aldosterone, so hopefully it will allow the Lasix to do what it is supposed to.

Until we get some of this fluid off of Samuel we will not be able to bring him home. The adema is still our biggest issue, along with the decreased urine output. Everything else affects, or is affected by, this in some form or another. Once we get the adema under control we will start seeing everything else fall into place.

Thank you for your prayers,
Kaitlyn

Samuel has made progress since my last update and has also had some new developments. His electrolytes and potassium have regulated themselves with the help of his IV. Once this was accomplished they were able to start him on some Lasix yesterday in the hopes of bringing down the Adema. The hope was if we could get his Adema down through the night that he could come home today. Instead Samuel gained weight through the night and put on more fluids. This left the Dr.’s with some questions. Samuel is not putting out as much fluid as he is taking in. A Renal Dr. has been added to Samuel’s case for a consultation and this today he will be getting three doses of Lasix. The Dr.’s do not think that this will take off Samuel’s excess weight, but they are hoping it will maintain his weight and keep him from putting more fluids on his already swollen body. We are reevaluating Samuel’s kidney’s to see if something was overlooked as we try and figure out what is going on in his little body. The Renal Dr. also wants to run some urinary tests tomorrow to find out some more information like is Samuel spilling protein into his urine and so forth.
Samuel has a new trach now. There was some question as to whether or not Samuel’s air leak (all trach patients have this, it allows them to be able to vocalize) has become too large and he needed to move up to the next trach size. This could account for his previously high Bi Carbons. He has moved from a 3.5 to a 4.0 and we are seeing how he does with this. The Dr.’s are still tweaking Samuel’s vent settings since he has gone from having high carbon dioxide to now having low carbon dioxide (not low enough that it is a problem). He is leveling out at a slow, steady rate.
Thank you all for your prayers, after I get back from the hospital tomorrow I will try to get another update out and let you know how he is doing. Right now Samuel’s biggest struggle will be getting that water weight off. The Lord has been very good to us and keeps Samuel’s little body fighting. He is doing fairly well in spite of everything, and holding his own. All of you play a crucial part in Samuel’s life as you pray for him and give our family encouragement through all Samuel’s trials. Thank you for partnering with us in the journey of Samuel’s life.
Through Christ all things are possible.
Kaitlyn