Noah's Hospital Visit

Things around the Addesa house have been pretty standard, uneventful, "normal"...until this last week. On Memorial Day, I saw a black shadow in the lower corner of the vision in my right eye.  I googled, and found that I might be experiencing a retinal tear and should see a doctor ASAP.  Only thing was...it was Memorial Day!  Emma also happened to be out-of-town visiting a friend, so it was just David and me at home.  Several calls to doctors with no response, I called Sentara hospital in Suffolk, and they suggested I go to Sentara Norfolk ER, as they had an eye center in the hospital.   I drove myself, while David stayed behind with Noah.  Five hours later, I was diagnosed with a severe retinal tear, and although there was no ability to laser it in the office, it would need surgery,  surgery would have to wait until Tuesday morning.  I had the surgery, have seen the doctor a couple times since and my eye is on the mend.  If THAT weren't enough of a challenge for one week...on the following Saturday night, 4 days after my surgery, Noah was showing us he was in great pain.  The pain did not subside as the evening progressed, so at 2am, I got him dressed and drove him to CHKD's ER.  It was Sunday morning, so David came to the hospital before going to church for the morning services.  He was going to stay, but I felt his message would be a real encouragemet to people, so he left at 5am, as we waited.  Noah finally saw a doctor who gave him some pain medication, but not "finding" any real physical things wrong with Noah, sent us home at 9am with a script for pain medication.  By 5pm, Noah was again in real pain(shaking, furrowed brow, tongue coming out, and red, sweating face and torso and hot to boot).  This time, David and I took him back.  It wasn't until 1am after multiple tests, that Noah was admitted to the hospital.  He was given a room and spent the next two days getting X-rays, catscan, blood work and various other tests to try to find out why he was in such discomfort.  Noah's inability to tell us what is wrong left us and the doctors simply speculating the cause of his discomfort.  Blood in his g-tube while venting him one of the last nights indicated that he might have a stomach ulcer or irritated gastric lining of the stomach.  SO...two trips to the ER totaling 10 hours and 3 days in the hospital, Noah is now on a gastric medication.  The doctors and nurses were wonderful, so the experience was nice...as nice as being in a hospital with a child in pain can be, but am so glad and very thankful to be home and have Noah happy and smiling again!!!
Being that Noah has not been in a hospital in 6 years since his injury makes me very thankful and happy!!
Hannah flew in from Nashville to be with us...I am loving having her home, so our time coming home was even sweeter!!  Here is a pic of my three amazing, incredible children...

Hope your week was a great one, and that next week will be even better:)!!!  Lord Bless you all!!!  Lisa

An Update...Finally!!

I have attempted to write this post a bunch of times and have decided to just tell you, our family has been blessed beyond measure with the recent addition of Noah's shower, but writing has been very difficult for me.  I think we all have ups and downs in life, be it menopause(just being real) and/or just the realities of life as it is, and my love for Noah, well, the combination, of late,  has been one that does not lead me to want to write about life...just saying.  I think sometimes, though, we have to push through those rough and rocky places we find ourselves in...because there are better things beyond them...even if we don't see or feel them. Keeping you updated about God's goodness, despite my "funk" is one of those better things.  So, no books today, just some pics of Noah's beautiful shower and a HUGE thank you for your patience...and thank yous to those couple of friends for your impatience in urging me on to write...18 pics so hope you make it to the end:)...

1.This is the door into the shower/laundry area(former garage)

 2.Open the door into the shower room

 3. Here's Noah's shower and chair(draped with his huge bath blanket/towel...the most convenient and efficient way to dry it)...notice the ac unit that cools and heats at the top right of the pic...sweet!!!  The string hanging from the ceiling is the pull down to the attic...just in case you were wondering.  The shower is tiled on all three sides almost all the way up...so no shower curtain.  We sometimes get a little water out into the "beyond-the-shower" area...but it's tiled, too...so no worries!!

 4.  The room has a toilet(an added thought for the future:)!!) and...

 5.  a sink.  We added the mirror

 6.  These are my boots for cold days when I have pants and socks on so I don't get too wet(I always seem to squirt myself at sometime during the shower:)!!).  I have only used them a few times, I generally prefer flip flops and rolling my pants up!

 7.  This shower doubles as a guest shower(when Hannah and Nic come home or my sister visits...) so  the guest towels are ready for Hannah and Nic next week:)!!

 8.  LOVE that this shower has an adjustable head for all kinds of shower, AND can come out of the hand held alone or in combination WITH the shower...SO nice to keep warm water showering on Noah while washing him with the hand held shower!!

9.  Then, the shower leads into the laundry room!  Beautiful, too...right?!!

 10.  Having lost our garage to this rennovation, it was so nice to have so much storage space put into this room with cupboards galore and a spacious countertop!!

11.  Opposite the cupboards are the washer and dryer and the old cupboards from our original laundry area that were also over the machines...so glad we were able to reuse them!

12. The laundry room is the room that contains the two windows that you see from outside the house..so nice to have natural light in this space!

 13.  Another window pic

 14.  Behind the windows are our extra frig and chest freezer...AND storage for my amazing compact ladder(using every inch of available space for storage:)!!)

 15. The washer and dryer from a view by the entrance door to this space.

16. This is the front of the space where our garage door used to be...neighbors love that our renovation looks like a part of the house...not a renovation.  I think it looks amazing!!

17. Shows the little walkway to the side door(which has become our favorite entance to the house, now!!)

18.  And a final view of the rooms in relation to the rest of the house.
Well that's my tour...I am still amazed and so thankful EVERY time I walk in these rooms...which is every day!!!  HUGE thanks to all who had any part in seeing this amazing transformation happen!!!  We are such an incredibly blessed family!!!!
  I will tell you, the first few times I showered Noah, it was a challenge to get him in his bath chair, keep him upright and straight while he was in it...I had thought it would be easy breezy...not so much.  BUT...I also have to tell you that I have gotten better, but SO HAS NOAH!!  He really has adapted to the whole routine and it has been a blast!!  I sing and dance and Noah laughs!! It has BECOME easy breezy!!   And although he can't tell me, I truly sense that showers make Noah happy on SO many levels!!  Not only which...he's cleaner than he's been in 5 years...no more baths with a dishpan and washcloth in bed for Noah...heaven!!!!
 We love you...thanks for bearing with me and loving our family!!  May you and yours be richly blessed this Christmas season as we rejoice at the birth of our Saviour...He is So Good!!!
Will leave you with one final pic of my three beautiful, amazing children I took at Thanksgiving...much love!!...

Still Here

Yes, we're still here...and doing well!!

Noah and I go to computer training every Tuesday where I sit and discuss and brainstorm ideas and upload/download things on to Noah's computer with the beautiful and talented therapist, Laura!  It has been and will probably be a number more weeks before the "getting it right" stuff is done, but we're getting there.  A couple days ago I put the computer on and sat it in front of him with all the newly uploaded pics of his favorite foods, movies and tv shows and individual pics of family members.  When the computer opened to the home page, the first thing he went to with his eyes was the picture of his sisters kissing him(that's his opening pic to the family pics).  Then he went to the movies page and he did a very cool thing that he repeated with the tv page, as well. He started with the first movie, chose it with his eyes, which opened it to another pic of that movie and then looking again, it goes back to the movies.  He then looked at the second movie and did the same thing...then the third and fourth...all the way to the end of the top row, then started on the SECOND ROW and DID THE SAME THING!!!  Not random, not the same ones...each individually and in exact order...I can't quite explain how it made me feel?!  Not having had Noah speak to me in 5 years, and this was not really speaking to me, but the order and decisiveness with which he chose each movie or tv show had ME...a bit astonished!!!  What did it mean...well, to me...that he has some real cool stuff going on in that brain of his and I can't tell you how excited it has made me to get going with really "hearing" my Noah!!!!  He still doesn't look at things I ASK him to look at, but just getting him to look and play around a bit has been very cool!!
If that weren't enough GREAT news...there's still more!  About a month  ago, construction was started on Noah's bathroom!!  The funds from Noah's Wheels is being used towards rennovating the remainder of our garage into a shower room  for Noah!!!  A HUGE thank you to all the people who contributed to Noah's Wheels...we'll now be "wheeling" Noah to a wonderful shower!!!   The cost is huge, and the NW funds will cover a large part of the cost, but the remainder is being generously supplied by my incredible brother-in-law, Mark!! My beautiful and incredibly loving sister, Rebecca, was the one who started Noah's Wheels and has pursued this construction project...her handsome and also incredibly loving husband, Mark, has been just as passionate about Noah having a bathroom...we are SOOOOO BLESSED and SOOOOO THANKFUL to them both!!!!  Having a shower for Noah will mean no more sponge baths in bed and no more washing hair over the kitchen sink...it will be the start of a wonderful new increase for Noah's quality of life and I think he's going to LOVE having warm water shower all over him!!! Here are some pics of our rennovated garage, soon-to-be bathroom/laundry room...

 this is a view from our den into what used to be our garage(I'm not showing you my mess to the left of this shot...IT'S A MESS!!)...they just widened it today to accomodate Noah's chair into Hannah's old bedroom, now my craft room...I LOVE IT!!  It makes this section now look like a part of the house, not the way to the old garage,,,yes, I see the carpet and needing a new paint job, but LOVE IT anyway!!!  Remodeling always leads to "other" things, right?!

This is the new door, just up today, to the bathroom/laundry room 

 This is the bathroom door on the right, Hannah's old bedroom/my craft room on the left.  They also replaced the door into the bedroom with a slightly wider one.  When I would take Noah into my craft room with me, I would have to take the door off the hinges to fit him through in his chair...NOW he fits PERFECTLY...WITH THE DOOR STILL ON IT"S HINGES!!  HEAVEN!!

 This is the shower to be, the next pic shows the shower and how it will lead to the laundry room... 

 This next one shows where the sink and toilet will go...

 And here is what will be the laundry room with our extra frig and our freezer...

CAN'T WAIT...it is an exciting time in the Addesa house...and a little dusty and chaotic...but EXCITING!!!

Will have more pics when it's done...Love and blessings to you all!!!

News to Tell You!!

It has been quite a while since writing...sometimes it seems there just isn't much that's all that new or different...but some really cool things have happened that I just HAD to tell you!!
NOAH GOT HIS COMPUTER!!!!!!  It came in the mail, and we've had it on, but am waiting to get together with a therapist to set up all the specifics and adjust it to his chair(I tried in both areas and think I messed things up a bit...what can I say...I'm EXCITED!!). I am waiting on an official time and day, but believe it will be soon!!  Stay tuned....am so hopeful that this will open up a new world for Noah and our family!!!!

Noah went to his first movie since his injury...The Avengers!!  AND...he went solo with DAD!!!  David wanted to see The Avengers and we both thought that Noah's reaction to loud sounds seems to have gotten better, so I dressed him, got him ready, helped David get him into the van, and off they went BY THEMSELVES!!  Even though it was opening day, it was a matinee so he guessed there were about 20 people in the show!!  David said that Noah was a bit jolty during the previews, but other than that, just fine!  Noah held his head up for the ENTIRE movie(THAT says something...he rarely keeps it up for ANY length of time) and laughed with everyone else at the subtle humor throughout the movie.  I put "with" in bold, because it wasn't that Noah was laughing at the others laughing at the humor, but David said that Noah was laughing as soon as the humor was spoken...with everyone else.  Just more reminders that our boy is "in there"...he knows what's going on:)!!!!  I can't tell you how excited that STILL makes me...EVERY TIME it happens...God is so good!!
Have more to tell you, but want to take some pictures before I tell you...know this:  GOD ROCKS!!  love you, Lisa

Computer Evaluation

I took Noah to have his computer evaluation this week!  We met with 3 speech therapists who were very sweet and knowledgeable.  The computer that they and I want for Noah is an eye gazing computer, that recognizes the retinas of Noah's eyes and as he looks at items on the computer screen.  He can "talk" to me by telling me what he wants, needs, feels by looking at pictures and words on the computer....  cool, huh??!!!   They gave Noah a number of things to look at, and I think he did pretty well, not having looked at a computer like this in over a year.  The computer set-up they chose had 60 squares (pretty small when thinking about the average size of a computer screen) showing various items as well as actions. They continued to ask him to find various things, but it's when I asked him to look at the thing that Mom drinks ALL THE TIME(for those of you who may not know me too well...I ALWAYS have at least 1...sometimes 2 cups of coffee with me at all times...I LOVE COFFEE!!)...and his eyes INSTANTLY went to the coffee cup...well, I got SUPER excited!!  HE KNEW...and he showed me with his eyes!!!!!  He glanced on it rather quickly, but the therapists saw it, as well...EXCITING!!!!!  They said the next step is to talk to Noah's doctor and then submit for approval...hoping that all will go smoothly!  Thanks for checking in...love to you all:)!!! Lisa

Quiet Times

Just wanted you all to know we're still alive and well here at the Addesa house:):)!!  It has been very quiet around here, of late, though, and not much is really new.
I had an appointment to take Noah for Botox shots, and had planned on going by myself with Noah, as David had a previous appointment... but Emma volunteered at the last minute to go with me.  I was thankful, as I was ABLE to go by myself, now...we have wheels, after all.  This was, though, the very first time that David had not gone to a doctor's/hospital visit at CHKD with Noah and me, and I was a bit nervous that even with a van and not having to transport Noah to and from his chair... I would be alone.  Parking??  Ramps??  Would it be easy to find a parking space that would allow me to get Noah into the hospital easily or by myself?  There are never disabled spaces available in front of the hospital that I have ever seen, in the afternoon...you have to have very early appointments or be willing to wait for an opening.  Otherwise, you park up the ramps and come down the elevator.  I was a bit unsure about all of that.  As it turned out, the whole look and even the ramp design at CHKD had changed since our last visit, so even though we had to park in the leveled ramps, there was more than adequate handicap parking in the bottom floor of the ramps....SUPER!!!!!  Having Emma there was just a great support to me, and I now know that I CAN do it the next time by myself!!  The appointment was the  smoothest EVER....three hours at the hospital, and home we went.  The last couple times with Botox, we have been at the hospital for 8 hours...yes...8 hours!!  So, this was sweet!!  Noah slept for most of the night, upon our return home.  The difference in his arms is uncertain...I think it's better, but not really sure.  His arms DO seem to be able to raise a bit easier, but it is not a WOW kind of difference.
I was sick a couple times since last writing, really the first times I can remember getting sick since Noah's injury, so I am SO THANKFUL, but Noah had a sneezing jag days after I recovered, and I thought he was getting my bug.  I gave him lots of antihistamines and his sneezing was semi controlled, but he was groggy.  With that said, we had to cancel his computer appointment until mid March(the next available appointment), wanting to make sure that he was not spreading "stuff", but also, that he is also very alert when he has his appointment.
Noah's best friend, Noah, and his mom, Felicia, come to stay with Noah twice a week.  I use that time to run errands and grocery shop.  Lately, Emma comes with me and we hang out together.  Last Wednesday, I planned on taking my Noah to Noah's  house.  Emma was sick, but what is sooooooo cool, is that I could do it myself!  Noah seemed to have a great time, his friend, Noah, and his family, loved having him there...it was wonderful and sweet!!  We're planning on taking him again, this Wednesday:)!!
The money from Noah's Wheels that is remaining will  be used towards building a shower for Noah...how much he AND I will love that!!!!   Noah's shower/bathroom  plans have been completed by the architects...now on to the next step...not sure what that is, but let's just say...exciting, changing times at the Addesa house...!!!!   Love to you all, Lisa          

Computer Update

Welllllll....I finally have word on the computer.  There isn't one.  I  was told that the paperwork that I filled out last February 11th was never submitted??!! I think I need to keep from saying much...but will say that after getting beyond my anger, frustration and huge disappointment...decided that , as asked,we are going to begin the process again.  I am not being given any reasons for why, but have simply been told that Noah will have to be re-evaluated for the computer.  I can and do choose to focus on the greater, positive possibilities that  there are now TWO different  eye gazing computers available as opposed to only ONE having been available since beginning the computer "thing" 3 or 4 years ago...so I may be able to get one like I REALLY wanted for him a couple years ago.!  That is GREAT news!!  The other cool thing is that, now having a van for him...all I had to do was say, "When can we come in?"...rather than having to check with David to see when we could work out schedules to get him there.  Also, if additional visits are required, I will easily be able to do that BY MYSELF...I cannot tell you how incredibly exciting that is!!!  One more REALLY good thing is that our visits will now be at their offices that are only about 3 miles from our house, as opposed to CHKD in downtown Norfolk a 1/2 hour and 15 miles away(with REALLY difficult and challenging parking...even and especially disabled, there are never any parking spaces available...so it's up 4 to 5 levels of ramp parking).  It's all good...
I am taking Noah in for Botox treatments on Monday.  We saw the doctor back in October, and Noah was due for his shots then.  There is only one rehab doctor at CHKD...2 have left within the last year.  That means there is only one doctor to see all the patients AND do botox treatments.  They told us in October that they could not guarantee an appt for botox until APRIL, but would try to fit Noah in when there was a cancellation.  We got a call this week, and again..."When can we come in?"...I CAN DO IT ALL BY MYSELF, NOW!!!!  Botox is important to keep Noah's limbs from being too tight all the time and will hopefully help his muscles relax a bit!!
Just wanted to let you all know...and will let you know what happens from here with the computer...I love God's goodness and his faithfulness to our son and our family!!!  Much love to you all!!!  Lisa