Friday, August 17, 2007

5th Month Recap

If you are new to our family, here are a few short updates of our "new life".
1st month recap 2nd month recap 3rd month recap 4th month recap

Dan seems to be doing well for the most part.
What a difference from 5 months ago. Exactly how his entire life has changed is very much on the forefront of his mind. He enjoys talking about the past, especially with his college buds, but the future can be difficult to talk about at times. Dan knows he want to finish college at Cedarville University. WHEN is the big question.

Physically he is eating almost anything we set before him, enjoys talking with the care nurses, really gets animated when friends visit, love watching the CUBS or ESPN, and is generally in a good disposition most of the time.

His only problem areas are: his in and out of bed transfers to his chair [only dad is able to do these - and not too well at times], he has to say "Watch the tubes," as bumping them causes pain to his trach; not being able to move independently around the house; not having any "wheels" to get out around town; setting off his vent alarm when he snoozes; his spasms which can set off his whole body from just touching his arm; the occasional light-headed feeling; being bored with nothing to do or places to go; not being able to use a computer on his own as he did at RIC. [We are trying to find a few handicap control devices for the computer AND a laptop for him.]

We hope to post information regarding Dan's up coming Diaphragmatic Pacer System [DPS] testing and surgery, which is scheduled for next week. The above link has great information about this newer "breathing" procedure.

Life literally changes for us every 15 minutes.

The care of our son Dan is still in fast gear, and there is a new phone call or subject being addressed almost every 15 minutes of our day. [Silly of us to think it would slow down.] It starts about 9am goes like this: what do you want to wear today? do you need deep suctioning?, "don't bump my tubes" business call, insurance coverage concerns and phone calls, "is anyone visiting today?", real estate call and selling home issues, "what, no nurse today"??, when can you folks see this van we have for sale for $$$, "what time do the CUBS play today?", i have another ranch house to look at, business call, "whats for dinner" [yikes, it's 6 pm already], what meds is he still getting? GO CUBS, when can we get the PACE bus to approve us and stop here, "can u fix my arms - they're sliding down again" [when do we get the power chair?], Mr K. can you fax us this authorization form? what are the costs of new construction vs another total handicap makeover of existing? when is the lift to get Dan in and out of bed being delivered? future medical needs, business call, phone call on how to get to our home, "I'm ready for bed", don't forget to pick up milk and Kleenex at the store on your way home, and on and on it goes till about 11 pm each night. There is also getting up once or twice overnight, if Dan clicks or we hear any noises on his room monitor.

Please forgive our lack of communication or replies, to your email or phone calls [you'd better call Bill back when he says "I'll call you back in 5 minutes" LOL], we are just swamped or too worn out at times or busy with Dan's care. I'm sure it's just an organization thing, but that's just where we are right now.

Thanks for all of your efforts to reach out to us during our time of great need.

Psalm 6 (New Life Version)

2 Be kind to me, O Lord, for I am weak. O Lord, heal me for my bones are shaken.
3 My soul is in great suffering. But You, O Lord, how long?
4 Return, O Lord. Set my soul free. Save me because of Your loving-kindness.
5 No one remembers You when he is dead. Who gives You praise from the grave?
6 I am tired of crying inside myself. All night long my pillow is wet with tears. I flood my bed with them.
7 My eye has grown weak with sorrow. It has grown old because of all who hate me.
8 Go away from me, all you who sin. For the Lord has heard the sound of my crying.
9 The Lord has heard my cry for help. The Lord receives my prayer.


Anonymous said...

Just want to send you guys a hug. This is hard. God must love you so much to let you go through this. I'm sure He hassomething very special in mind for you.

Anonymous said...

Boy, do I wish I were near to you guys. I know the no nurses thing and now I have none at all. (no offense to any nurses out there). You will also find some that know something about vents but not the condition that causes the person to be on a vent. Dan is injured not sick. God is gentle but has so much planned for you. He has already taken you right where you are which is so much more then most people can fathom going. Hang on for the, let's say, very interesting ride:) I do not have your number but here is mine again. I do not care if it is public because I can answer questions for anyone if I can. Wide shoestrings make great tying devices for the tubes and they are cheap!Dan looks MARVELOUS!!!!
937-599-4348 or
Beth malarkey MOM to Alex c1-c2 0% of any function to standing!!!!(in a frame right now)
P.S. Are you guys talking to Mary Jo Elmo at Dr. Onders office????

Anonymous said...

you are missed here at CU.

Anonymous said...

Dear Dan and Family,
We continue to pray for you. Thank you for your updates. May God continue to give you the grace and strength you need daily. In His Grip of Grace, The Basile Family

elj377 said...

Praying for the right organizational system to help with all the feelings of chaos! We love you all and pray for you often! Hang in there!

Anonymous said...

Hi Dan,

I miss seeing your face at RIC. I need to spend some time with you and check in on how things are going. I pray for you daily.


P.S. Go Cardinals!!!