Home Sweet Home

Home Sweet Home
Now that is a smile I would pay for!

Sunday, July 19, 2009

Sunday, July 19

First of all Riley is home and May is back in town. I was surprised because my boy looks the same; just a little taller and I must say a lot cuter or a lot more cute (which ever you prefer).

Thanks Uncle Dave and I do know you come with good intentions and a loving heart.

I certainly was not aware of what you saw when you looked in my eyes or at the moment you noticed.

What was there was exactly what you said along with fear, panic, doubt and any other adjective which falls into this same category.

Not only is Deano getting ready to come home; my boy is now home.

On Friday I spent the day at the hospital and met with the physical, occupational and speech therapist and there was actually one more which cancelled. Along with them I also met with the case worker. It appears our stay at LBM is quickly coming to an end. So I need to learn in as little time as possible how to care for Dean under these new unexpected circumstances. How to get him out of the wheelchair without hurting either one of us; the proper way to walk with him using the walker, how to get him in and out of a car or up and down stairs. Though Dean is certainly getting stronger he still requires care 24/7. Oh, did I mention hygiene; bathing, etc. Overwhelmed; I say scared shit less.

I must say again the staff and therapists at LBM are so accommodating and helpful.

I picked up Riley and May from the airport and then we went to the hospital and Dean and I got into a little scuttle but - wow try doing that with charades. Not so easy especially when you have never played charades.

The device that Uncle Dave is speaking of would give Deano a voice, either via pressing pictures on a computer or typing in phrases with a lot more functions once it is utilized in the home. However this device is apprx. $10,000.00, which is covered by insurance (amount of coverage unknown) and must be approved and at this stage it is not approved for Deano. The protocol goes something like this: the devise is set up in his room and the various speech therapist both observe and assist Deano in the use of this device to determine whether or not it is a viable means of communication for Dean. Provided they determine that it would in fact be beneficial for him a report is written by the head speech therapist and submitted to Dean's case worker and then the case worker will submit and correspond with the insurance company for approval.

This coming week the hospital will be ordering Dean's wheelchair, walker and various other items which we will need for his homecoming. It still has not been determined whether or not he will require a hospital bed. If so, Deano's room will be our old living room and we will then have that 3 bedroom house we always wanted.

Deano has become very emotional and rightly so. He is becoming more aware of his circumstances and I imagine feeling like he is not getting the results which all his hard work has warranted. Especially with the apraxia - the harder you try to talk; the harder it is to talk. Words or no words I could certainly tell he was yelling at me today and very loudly. What I can gather from Deano's sadness is that right now he is feeling very alone. So maybe if you happen to stop by and see him if you could just remind him he is definitely not alone.

A lot to do so I guess we will catch up later.

3 comments:

Unknown said...

Hey Teri,
Hey Teri, how's it goin? I can't put dates to the pictures but they sure look good. Are the ones with people w/o the isolation gowns the new ones or the old ones? Is the infection gone? Gosh i hope so. I imagine that it will have to be gone before he heads home to that new 3 bedroom. How's his swallowing? Do i have it right. that Dean's fuction is there but the messages are going to have to be relearned? The story from uncle Dave seems to tell a tale of him reponding to questions. Only his ability of response not his capability of response is hindered.
He has the ability to nod or shake his head yes or no. So learning speech and the other things are just function?

Dean will work hard! He will be frustrated by how slow things are getting better. This will make Dean work even harder. He will probably lose his cherub like demeaner a few times. My guess is that part of his frustration is being so far from you(LBH) that he doesn't get to see you as much. and riley. and all! Remember that from Dean's perspective he is in a bed all day or in therapy. His days are long and filled with solitude. Not being able to talk or communicate as he once did i'm sure makes it even longer and more frustrating.
It's so hard to be so far away when someone we care about is in need. The isolation that Dean has with all the things that influence him now, no speech, no food, no unaided walking or bathing or all those things we take for granted are just more ways of being far away. Now, being in LBH instead of a place you can visit at lunch each day is another level to it.

Keep in mind, that your healing place is where you and Dean are. It does matter if he's in long beach, venice or ballard it's where YOU are. As tough as it seems now, your road ahead remember where you both were one month ago today. 2 months ago. It will get better but always on...dare i say it.....Namba time! All these things they are showing you seem so big but, i've know folks that do this everyday. It will become as easy for you making breakfast. or lunch. or dinner! man i'm hungry! i think i just talked my long winded way into some nilli wafers and ice cream. About the time you get used to doing it you'll not have to do them anymore.

I'll leave you with a song. I'll show my age alittle. It's an old BEE Gee tune.

If your life gets like a jigsaw, with the pieces out of place,
come on over, put a smile back on your face.

and if all your bad days came at once.
you would know just what to do.

come on over, baby we will see you through


and if you think i need you, come on over



I hope everyone there can hear those words when dean or teri or riley or may needs them to hear them. just come on over

Ricky "If you're not smiling you're doing something else" Elliott


ps: All our hopes! all our prayers! all our dreams!

Mark Brems said...

Just another transition Maria. I can only encourage you to flow with it and not tense up. You need to be fluid so Dean has a safe container to struggle within to regain himself.

Once you're back in Venice, we'll greatly look forward to visiting again.

Much Love,
Mark & Karen

Frankie said...

I hear your fear and frustration. It's so loud that I can feel it.
I know that you do not see it now but you will look back with laughter some day. And laughter is the best medicine. If you make a boo-boo, then laugh about it and go on to the next one. If you get tired, take a nap (together). But don't give up. Put your fear in God's hands. He can handle it. Alabama is praying.