Is now a good time to scream?!

This is what 7 weeks in the hospital look like....each bead represents a procedure or a difficult part of this journey..beads of courage. He has two more weeks of beads to add today!

Nine weeks today. Nine weeks of a speaking about nasal drainage, temps, diarrhea, retchiness, urinary output and pain. Nine weeks of dealing with  occupational therapists, physical therapists, speech therapists,  doctors, interns, residents, students, social workers, child life specialists, radiologists, housekeeping staff, respiratory therapists, volunteers, "in hospital" teachers, patient care representatives and dieticians, nurse practitioners and nursing assistants and the nursing staff...

Nine weeks of saying the same thing over and over...and over...I don't even know what I think anymore, what I know anymore...what is important anymore in Elijah's care. I just would like to scream for a minute if you don't mind. Okay. Good.

A new nurse today...a nurse who knows it all. A nurse who contradicts everything I tell her. She has been doing this job awhile and I know that she holds a bigger picture than I do of the whole bone marrow transplant process. But, he is my son...he is my little boy and I have earned the title of expert on him. Listen to me and I will listen to you..we can put our heads together to give Elijah the best of care..but it takes two. Meet me in the middle and we can go from there...

Elijah is doing well today. But, his nose drainage has turned thick and yellow. That is if you talk to me. It is clear and runny if you talk to the nurse. I had a feeling that I was going to get this so I kept the kleenex to show the doctor...funny how you just know when you need to do something like this. I bet you are just as sick of hearing about nasal drainage as I am?!! Thanks for sharing in my pain...

So, I wish I could just go into a padded, sound proof room and let out a nice scream. If there was a sink in there, I would try to dye my hair as well...

That is life in cell block 4121 for today...

Grateful for a sense of humor that has still held strong..and a thankful heart that takes over most of the time! Grateful for friends who encourage me, laugh with me...and love me no matter what....

I don't want to be a complainer..a grumbler. God has heard our prayers and given us the grace to face all the bumps in the road that have come our way. He has been kind and gracious and patient with me. I want to extend that same grace to this nurse..to the staff that I interact with each day. God has given us many opportunities to share our faith here at the hospital...and I do not want my pettiness to stand in the way of a chance to share the message God has given us...God is faithful. He is the same yesterday, today and forever...as He loves us without limits. He has given us new mercies everyday as He supplies our every need.

All about Elijah..

Outside of Elijah's room, I post some basic information about working with Elijah. The child life specialist at the hospital originally wrote something up..but that was before he was admitted. Things change pretty quickly with him...but his underlying needs remain the same..Most people take the time to read it before they enter the room. It has been very helpful. This is what it says:

           Please read before working with me!    I am Elijah and there are some things I’d like you to know before you work with me today:

I do not like clapping and cheering! Please don’t say “yay..” or cheer even if I am doing something great...You can encourage me by being very calm when you tell me I did a good job.

Three words: quiet, predictable and calm are really good to remember when you are with me.

I have some stuffed animals that are my good friends.  SOMETIMES, I like them to help me when I am getting my blood pressure and weight. Meow is my favorite stuffed animal. But I have many more that sometimes are on “time out.” My animals may not be around, especially when I am not feeling well.

It helps me to have a schedule of what is going to be happening next. If you can, let us know when you will be coming so that I can know what is coming ahead.

If I am really upset, don’t use a lot of words when telling me what you are going to do. Just get it done.

If there are a lot of people in the room, try and allow just one person do the talking. I get so overwhelmed with a lot going on at once.

I change my mind often…please be patient with me. But, if I continue to change my mind…you can tell me to make a final choice and stick with it.  I just might be seeing how far I can push you.

Do not ask me if I want to do something that HAS to be done. If I don’t have an option, don’t give me one. Do give me choice about things that I can control!

You can pretty bet that I am going to say “No” to any open ended question. Are you in pain? Do you want to me to listen to you?” I am going to say NO. If you really want to know how I am feeling, do NOT say “Do you have any pain today?” I will say NO.

 I love numbers, letters and elevators! I am a super smart kid whose preferences change all the time…but my needs stay the same. So just when you learn some of the basics about me, I might change things up! But one thing will remain the same…I need a calm and predictable environment with the ability to control some things in my world.