Samuel's 28th Post

Hello again everyone. Samuel has been doing so well over the last month; we had gotten him up to 8 hrs off the vent, but he has started having some difficulties the last two weeks. Since the last update Samuel has started having an elevated heart rate. The reason for the increase in his heart is unknown, especially since he has not been storming.

In addition to the elevated heart rate Samuel has had some issues with his stomach being distended. There is nothing different in his feed schedule, so this too remains a mystery to us. Samuel also had a period last week where he went 36 hours without a bowel movement which is not a big concern but is unusual. We were advised to seek medical attention if he went 24 more hours, but as Daddy said he was a good little boy and obeyed his parents by going to the bathroom.

Samuel has had a fever all week ranging from 99.0 to 102.3, depending on which day it was. The rest of our family has been sick in relays and we have had a nurse shortage which means we are trying our best not to expose Samuel by wearing gloves, masks, and pumping germ-x on our hands, but the reality is he is at risk for us getting him sick.

All of these things are unusual for Samuel and we are not sure what to make of it all. We are monitoring him and waiting to see what’s happens. If things don’t resolve he may need to have some testing done, but we are not rushing to that. At this point he is normally very tired and spends lots of time sleeping, which is good for him since his body seems to be in upheaval. My Mom has started giving Samuel her fresh milk instead of her frozen milk so that he is getting all of the good antibodies her system is putting into his milk right now since she has been sick. I think this has played a part in him not getting very sick.

Apart from all of these things Samuel has been doing well. As I said before he has been making strides towards working himself off the Vent for longer periods. He is now 21 pounds and 26 ½ in. long. Samuel and I have just finished up Lamplighter’s series Boys of Grit Who Became Men of Honor. We enjoyed reading about great men in history who had a difficult childhood, whether that be a physical handicap, a poverty stricken family, slavery, or any number of other things and rose above their circumstances and what people expected of them and became great leaders in society. We are getting ready to start a book called Ishmael which is an amazing story that our family loves and found very inspiring. Samuel has become a big book fan and has encouraged his sister Elianna to love reading since he gets to snuggle with everyone and read. Now whenever anyone is reading to Samuel Elianna normally climbs up next to brother in whoever’s lap he happens to be listening in. She is a rough page turner though, so you have to be careful.

Over the last month Elianna has really warmed up to brother. She has always associated Samuel’s name with being nice and sweet. She strokes her face to sign ‘be nice’ (Elianna has been learning some sign language) and whenever you talk about Samuel she will stroke her face, but now she has started becoming very interested in him personally. She loves to give him kisses and pat his chubby legs (his legs are three times larger than her skinny little ones). You have to watch her interest in his equipment though. She finds brother’s tubes very intriguing.

As a side note I wanted to tell everyone that the Lord has really blessed us in the last few months with our nurses. We have had two permanent additions to our nursing family that have been a wonderful addition. The Lord has given us nurses who have eyes to see past Samuel’s condition and actually look at Samuel himself. One of Samuel’s nurses who has been here from the beginning spoils him rotten, which we are personally fine with. She fauns over every coo he utters and will hold him for several hours at night.

One of the new nurses we have came in and did not know what to expect when she saw Samuel. She had been given his charts and told he was completely unresponsive. On the day she came in to train she met Samuel’s other two nurses, the one who was going to train her and the other who was making her shift change. His one nurse had just put him back in his bed (she had been holding him for a while) and he was quite put out about it. So when his other nurse came in she started telling him how much she missed him and he turned his face away from her. She then proceeded to go to the other side of his bed and repeat her words of love and he turned away again. The new nurse who had come in to train asked if she was seeing what she thought she was seeing. Samuel’s nurse smiled and said “oh yeah, watch this.” She went over to the other side of the bed and proceeded to ask Samuel in a sympathetic and pitying voice if he was being mistreated and no one was paying attention to him. Samuel then began to make a pathetic whimper. Our new nurse said his charts were wrong because he was a very responsive baby. Our point is you have to have eyes to see, because we have had nurses who see all of this as part of his condition, a spasm, his posturing, and not as him responding to us.

I am trying to get Samuel’s DVD up that I have promised to everyone, but am having a few glitches and minor difficulties that have to be worked out. I promise the moment I have it ready I will let everyone know.

Samuel turned eight months old today and we are all so thrilled the Lord has chosen to give us eight wonderful months with him. He has been such a tremendous blessing to us and so many others that I feel so blessed to be able to share with you all just how wonderful he is. Samuel continues to make strides and defy the medical fact that he should not be here.

May God richly bless you all,

Kaitlyn