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

It's a New Year

I hope everyone had a great Christmas and New Years!!  Ours was sweet and wonderful...had Hannah and Nic here for over a week, the time with them was sooooo nice!!!  It was a wonderful, as well, for we had a new van to take Noah places with us!!  We went to see the lights at the Botanical Gardens in Norfolk not once but twice.  The first night, we made the mistake of going on Military family night, and waited 1 1/2 HOURS to just get in!!  It was fun, though!!  It was Noah and I, Hannah, Nic and Emma.  Nic told constant jokes for the duration, kept us all in stitches...so the time passed quickly and the lights were too short, but WONDERFUL...for those of you who may not know what the "lights" are...here are a couple pics:

They are lights that line a path at the gardens and the cars drive through and look at the various displays.  The Gardens have a "garden theme" throughout with the various seasons...this year synchronized to music at one part...soooooo cool!!  We did take pictures of "us"... here is everyone minus me(even Lucy our dog after her shave that day:)!)...

 Emma and Lucy(Emma had Lucy entertaining people in other cars with her Bichon wave:)!!)

 Noah with his blanket to keep warm while we had the windows open!!

Hannah and Nic snuggling together...awwwwwwww!!!!

I took Noah back the night after, as everyone was busy doing other things...and it was even better...even sweeter.  The weather was warm, I rolled all the windows down(the side windows on this van ROLL down...never heard of such a thing before...but sooooo cool!!!) and we took a LONG stroll through the lights again(no waiting line this night)!!  The sweetest thing was looking in my rear view mirror at him and watching him looking back and forth out of both windows, up and down at all the lights...so engaged with the splendor and beauty...it truly touched my heart!!!
Emma and I took Noah with us to Williamsburg a few days before Christmas...about an hour from our house.  We visited the Yankee Candle Shop there(HUGE store with lots of Christmas stores along with the candles).  Emma took Noah to a spot where snow falls on you...Noah LOVED it!!  Emma and I sang to the Christmas songs on the radio while driving..having fun with each other, and Noah was "splitting a gut" behind us....at one point, Emma and I looked at each other and with tears, I said, "Emma, THIS is Christmas...this is IT!!"...she was crying too.  This was as close to "normal" as we could get...driving...shopping...singing...laughing...having fun...being together...the van has been life changing for Noah and our family......wow....what a blessed Christmas we had!!!!
We are hopeful for great things this year...for our family and for yours...and that the love of our Savior will abide, abound, and will advance throughout us and the places we live...much love to you and yours!!!!  Lisa

NOAH HAS A VAN!!!!!!

The most amazing and wonderful thing happened on Tuesday...Noah was given a van by Chartway Federal Credit Union's We Promise Foundation!!!!! I am still in shock...I keep going out to the driveway to see if it's really real... and just to look at it!!...I cryed...still am, as are our families and friends...TOTALLY overwhelmed...filled with sheer happiness and gratitude!!!  Blessed and loved beyond belief!!! Thank you to Chartway, the We Promise Foundation and all who made this gift happen, we are so incredibly thankful...beyond words, and a with a gratitude that could never adequately be expressed...you have given us back a part of life that was lost to Noah and our family 4 years ago!!  Thank you!!!!!!
 ...  Here's Noah in our driveway with his new van and sign that We Promise made for his "wheels"!:

And here's a picture of Noah IN his van:

Yesterday, Rebecca and I took Noah for a field trip...first to get ice cream and then to WalMart...what a riot we had and Noah was sooooooo happy!!

                        

                 

Yes, a walmart bag draped over him so you would know where he was.  I am trying to journal with pictures, all the places we travel...what an incredible time we are having!!  The van is BEAUTIFUL and traveling with Noah could not be simpler...I can't stop crying!!  but in a good way!!  Many more pictures and details on the blog my sister, Rebecca began...Noah's Wheels... I have started to write a number of times, but am finding it so difficult to relay everything that took place on that most incredible of days in a very reader friendly way, so may tell it when I can think straight again!  It was a day  filled with not only the most wonderful gifts, but with wonderful people, and was an experience that will remain etched forever in my memory as one of the sweetest experiences and days of my life! Noah and our family are very loved and very blessed...wow...I'm speechless....God is soooooooo very good!!!

Our Crazy Thanksgiving

I didn't take pictures, but should have...it was a crazy site!  Hannah and Nic were home from Nashville, and to give them and Nic's family a relaxed day, they spent the bulk of Thanksgiving day with Nic's family in Suffolk...we celebrated our Thanksgiving on Friday.  Hannah invited her best friend and her boyfriend to join us, so there were 8 of us total.  The only room large enough to accomodate our kitchen/used to be dining room table, is the living room.  Now, picture this...the living room is connected to our former dining room which is now Noah's bedroom.  The living room has our couch, my computer desk, Noah's massive stander equipment and my massiver(I know, more massive)elliptical...it is basically an all-purpose room.  We can fit 8 people around this table, but it is tight and ESPECIALLY in this space.  Now...the next hurdle...and the thing we are STILL laughing about...the chairs.  When we bought this unfinished table 22 years ago, we also bought and finished 6 bow back chairs(the set was beautiful!)....3 of which broke and are now gone, and one of the three remaining has very few rungs on the back...in fact  it has one on either side but all the middle are gone.  So, that left us needing 4 more chairs(Noah has his own).  We used my craft room chair, my living room desk chair, a folding metal chair(no, not the kind with a cushion)...and one more needed but none to be found.  I went upstairs and brought down my bedroom set bench(Emma said when I did that, she wanted to crawl under the table). I tried to sit Noah as close to the table as possible, but every time someone would say something funny and we would laugh, so would Noah.  Not a bad thing that he would laugh, but every time Noah laughs, his feet go up in the air.  Emma' job(her and I sat on either side of Noah at the end of the table) became to try and keep Noah's feet from shaking the table....I laugh as I'm writing...over two weeks ago and still such a funny thought!!  But, have to say...I thought it was a WONDERFUL Thanksgiving!!  Who says you need lots of space or fancy things to enjoy holidays and make memories with family and friends...highly overrated. ...hope these holi-"days" will find YOU laughing and smiling... Noah is doing GREAT...still my amazing boy!!   Much love to you and yours!!  Lisa

just a note...the week after Thanksgiving, due to our lack of storage space in our house AND garage, I ordered 4 nice folding chairs on ebay...they fit in my front hall closet...now we'll be ready for Christmas...lol!!(I might even take pictures!!)

Happy 16th Birthday, Noah !!!

Noah turned 16 on October 19th!!  He had had a restless night's sleep the night before, so he had to be woken up to get the day going.  The Meyers family came to celebrate  in the afternoon( Noah Meyers is my Noah's best friend and has been his faithful companion twice a week with his mom, Felicia, since his injury...what an amazing young man with just as amazing mom and family:)!!!). I made Noah's favorite, spaghetti and meatballs and he had an ice cream birthday cake, both which he ate quite a bit of!!!  He got a call from his sister, Hannah, and her hubby Nic lots of birthday shout outs on his sister's facebook and a call from Grandma ...it was a day to rejoice and celebrate another year of life...and to look forward to the next year with hope in our hearts for Noah's continued healing in mighty and powerful ways!  Thank you for loving our boy and following us in his/our journey...Noah, you are one loved young man...I love you, baby boy!!!  Love to you all, too!!...Lisa

No More Wisdom Teeth...But Boy are We Much Wiser!

On Thursday, September 22nd, David and I took Noah to CHKD to have all 4 of his wisdom teeth removed. It has taken me a while to write about it, for it was a procedure racked with some difficulty and weeks of healing. Noah has been a champion, I think I needed more healing than he did after the surgery.
  At Noah's last dentist appointment, we were told that Noah had one wisdom tooth growing TOWARD his back teeth, and would have to be removed.  After consulting the recommended oral surgeon, he suggested that we have all four teeth removed so Noah would not have to undergo surgery and anesthesia another time for these teeth.  We agreed with his advice and his office set up an appointment with CHKD to have them all removed.    We arrived at 8am...the surgery finally happened at about 11am...was over by a little after 12pm...and we left the hospital at 2:30pm.  The whole recovery time was a bit upsetting ...Noah was on pain meds, but we could tell he did NOT feel well at all and because of his inability to keep his mouth closed for the required clotting time, his teeth were bleeding a lot. How did we know this, you ask?  No, blood was not coming out of his mouth, but when I suctioned his g-tube for gas bubbles before going home and for the next number of days, there was A LOT of blood in his stomach!!  I wound up intermittently putting rolled up gauze in his mouth for the next few days, and that seemed to help, but I had to vent his g-tube at least every hour for gas and to make sure the bleeding was subsiding and emptying his stomach when things got bad..  Gross...huh?? He ran a fever for about a day, but the bleeding was the most difficult part.
  Well, I'd love to say that it all ended after a few days, but occasional bleeding spells happened for the next week and a half...a loosened blog clot....sneezing that made the bleeding start(he finally got on an  antihistamine which REALLY helped!!)...it was a tough couple weeks.
 It was so hard to watch Noah be so uncomfortable.  He didn't smile or laugh for days after the surgery...it's funny how even with Noah's limited abilities...when he doesn't smile or laugh...you know he isn't feeling well, and the sounds of his laughter and his beautiful smile are very missed!!  I gave him LOTS of juice bars crushed up and containers of ice cream during the first week...he LOVED IT and ate and ate!!  There is one interesting thing that happened the second day after the surgery that let me know that I would put his food on hold for another day.
  The second morning after surgery, I came over to Noah's food pump and was going to start his feeding, when I noticed him looking up at the food with a furrowed brow.  I continued hooking everything up...Noah HAD to have some food(with surgery and the 1st day after, I had not fed him much at all!).  Again, Noah looked up at his food bag and machine, and furrowed his brow.  I stood there and thought...you know, if I had had surgery, I probably would not be hungry for chicken, peas and cranberries(that's whats in his food)...so I turned the pump off.  I fed him bowls of  ice cream twice that day and bowls of crushed juice bars just as many, and he didn't hesitate once to eat every last bite, not another furrowed brow that day...THAT is how I listen and hear what Noah is saying by sometimes just  watching his face!
  We are now a month removed, and all is well in Noah's mouth once again...happiness is once again a part of his countenance...and ice cream and crushed juice bars are still a part of the daily menu:)!!  WHEW!!
Blessings to you all!!!

A Family Milestone

  Well...we survived hurricane Irene without incident.  An incredibly kind family from church lent us a generator for the storm.  Our lights only flickered a bit on the night of her passing, but we never lost power.  The family came to collect the generator the next morning, as one of their family members WAS without power.  There were trees and fences down throughout our neighborhood, our yard was covered with tree limbs, but NOTHING compared to surrounding areas where flooding and damage was much more severe.  We were/are so thankful.
   Life has been pretty low key...well until I got an idea to take a trip.  My dad turned 82 years old on Monday, and I really felt compelled to surprise him in Buffalo for his birthday:)  I found a couple cheap flights on Southwest and with David's ok and my Floridian sister already being in Buffalo and willing to be my chauffeur, I booked my flights and made arrangements to go.  The longest I have ever left Noah has been to substitute teach for a whole day...about 8 hours...A LONG TIME for me!!  Well, I was scheduled to leave at 5am and return at 10pm...17 HOURS!!!!!  Now, I know, you are probably thinking...JUST THE DAY???  Yes, just the day.  Noah's nights are tough...I would not and could not expect David or Emma to do a night with Noah....not yet.  Hey, this was a HUGE milestone for the Addesa family... for me....for Noah!
 My dad was SHOCKED...my mom cried ....and cried...and my dad kept saying all day long, "This was the best day!".  I have not been to Buffalo in almost 6 years, and have only seen my parents once in the last 4 years, last year for Hannah's wedding.  This meant so much to them...it meant the world to me!!  I am so thankful for a husband and daughter who did nothing but encourage me to go...I love them so!  It was alot of work for the two (David had his Monday meeting at the house and Emma skipped a class at TCC)... and Felicia, Noah's best friend's mom who helped get Noah dressed when she came to sit with him on Monday... at the end of the day we were all very tired...but WE DID IT...and it was the most wonderful day!!! Here's a picture of me, my dad and my sister Rebecca,  and one of my mom and dad:

I will say, when I got home, Noah gave me a HUGE smile...something he rarely does for me( I guess because I'm a "fixture")...I can't tell you how happy that made me...a perfect ending to a perfect day...Love you, Dad!!

My Amazing Noah

First, I must apologize for my lack of writing.  I could say it's been crazy, which it has, but it's ALWAYS crazy!  I have no excuse.  Did you ever want to write a thank you note but didn't.  Then...as time goes on, you still want to write, but you feel so embarrassed that you have waited so long that you may have written it, but never send it?  Well, I have...MANY times.  THAT is how I felt about writing the last week or so on this blog.  The more days that would go by, I would feel more and more badly about not writing, but too embarrassed to write.  Well...I AM going to write...but it may be a long one, so you may want to come back when you have some time, or read in segments(oh, it won't be THAT long:)!!)
Well, Noah recovered from his sinus infection without incident.  He has since had a dentist's appointment where an x ray showed that 3 of his 4 wisdom teeth are coming in  and coming in straight.  One tooth, however, is coming in crooked, sideways TOWARDS his back molars.  The dentist thought that would be causing Noah discomfort and asked if we has noticed him in pain.  The only time we can surmise would be a problem for him is at night when trying to fall asleep...at least we're hoping that's the reason for Noah's lack of ability to fall asleep.
 It has been a very tough month or so with Noah when it comes to sleep.  We DO go to bed late, but HOURS after the TV is off and I have gone to sleep, I am awakened every night(yes, EVERY night) by Noah's moaning.  I vent his g tube, sometimes roll him over, check for him being too warm, and go back to sleep...only to be awakened an hour or two later by his moaning, again.  I vent him, again, and go back to sleep.  Sometimes 3...sometimes 4 times a night...some nights I stay up with him until he falls asleep.  David seemed to think that his sleep pattern was messed up...and yes, with no sleep, it was, but there was no answer to what was wrong, or what to do.  I just couldn't understand why it took Noah all night to go to sleep.  He never seemed in pain, and when I would tell him to go to sleep, that I was tired, he would laugh! Then, after a very restless night and most days morning, too,  I would get him up between 12 and 2 yes...late, but considering our nights, I felt I was torturing my baby by forcing him to wake up...a vicious circle of no sleep vs. sleep... and he would fall asleep in his wheelchair during the day.  I have been extremely tired,  I get up between 8-9am  which doesn't sound early, but on average, I get 4-6 hours of broken sleep per night...so both of us have been sleep deprived!!  Since the dental appointment, I have been experimenting with giving Noah some pain medication...and then the next night seeing if he needs it. With the pain meds, Noah has been sleeping better....much better....not perfect, but compared to the last month....MUCH better!!
We have a consultation with an oral surgeon this coming Tuesday to have the tooth pulled, I am hoping it will be done soon and all will go smoothly. It seems that we will probably go to CHKD for the extraction....we will let you know.   I am also hoping  that after the extraction,  Noah will have better sleep!!
On another note, I am excited!!  While working with Noah and his legs the other day, his right leg, the tough toned(rigid) leg, I told Noah that I was NOT going to be moving that leg and would wait until HE moved it.  Well....I kept my hand on his foot and one at his knee...and before I knew it...the knee was bending!!!!  I was not offering any strength except my hand on his knee and foot, but the leg was bending!!!  Slowly and not too far before I offered assistance to REALLY bend the leg to stretch it...but I can't tell you how exciting that was!!!  I shouted to Noah that HE IS NOW TELLING HIS BODY WHAT TO DO, his brain is connecting to his limbs!! Every time I have one of these moments...it is amazing and wonderful!!  There have been groups of people coming over to pray for Noah's healing every Thursday evening...well, let me say, we have AMAZING friends and prayer warriors, and GOD IS SOOOOO GOOD!!  The other day, I asked Noah, while laying in bed, to poke his dad while he was standing next to the bed.  Noah's arm with his curled hand, started to move towards David.  It went in the opposite direction for a second, and then kept going back down towards David.  Noah's fingers touched David's arm and we both cheered as Noah smiled that he had poked dad!!  HOW INCREDIBLY COOL IS THAT???!!!  Let me tell you, it was not that long ago that Noah could not move that arm no matter how many times you asked him( not having know how OR ability)...that is his more rigid, tone filled side and hard for ME to move...but HE DID IT!!
Have to get Noah to bed, but now that I have gotten something written and soon sent, I will be back to tell you of the earthquake we felt yesterday and the hurricane that's coming our way...stay tuned:)!!
Much love to you, thanks for taking the time to read...hope you and your families are blessed abundantly...thanks for your love and prayers!!!!!  Lisa

First time in Four Years...to the Doctor because Noah is Sick

I am so incredibly thankful to the Lord that in 4 years time since Noah's injury, the only time we visit the doctor is for annual check ups, routine shots or therapy...well, once the ER to put his g-tube back in.  Noah has been one healthy boy all his life, and even since his injury...THANK YOU LORD for healthy children!!!(Emma told me the other day, that she remembers me always saying that while she was growing up...I didn't even remember...)  Noah had been sneezing and breathing strangely for the last number of days, though, and any sounds he would make would sound REALLY deep.  He had not smiled in many days, and even though I had given him benedryl to help his nose (and that explained why he was sleepy and groggy), he was just NOT himself...very quiet...not a smile, a laugh...sort of motionless.  He had trouble sleeping, and yesterday when I tried to suction his nose, he sneezed green and yellow gunk...ewww.  After talking to my sister, Rebecca,  I decided to call the doctor and get Noah on an antibiotic. The call to the doctor's meant a drive to Deep Creek(about a 25 minute drive from our house).

David was going to help me get Noah to the doctor's, but seeing as he was in a scheduled 5 hour meeting at church and although he was willing to drop all and come home, Emma volunteered to come with me. She used to help me take him to therapy, so she's familiar how it works...I love that girl!!  Noah LOVES it when Emma is the one to pull him into the SUV after sitting him on the seat from his chair...he ALWAYS laughs...but never when I do it...it tickles my heart to see how Emma makes him laugh!!  Well, let me tell you...women rock!!  We got Noah into the SUV without dropping him and even hauled his 105lb wheelchair up into the back of the SUV...whew...I mean wow!!  The nurse at the doctor's office could not believe how tall Noah had grown and could understand why I had been so disappointed that I had to bring Noah in(yes, Dr D is a wonderful doctor and/but would not prescribe an antibiotic without seeing him)...a lot of boy to transport...YES HE IS:)!!  I told her that it makes me want to cry to think of having to take him anywhere.  I am 53 and menopausal so I attribute a lot of my emotional angst to my age and season of life, but it is very hard to get Noah places.  Not meant for sympathy or to complain...just reality.  Noah's lungs were clear...YEAH....but his nostrils swollen.  Nasal sprays and an antibiotic...I am VERY glad we went...now he's on the road to recovery with great peace of mind for me!!

Well...the cool thing about all of this.  We got Noah home, started the antibiotics...got him into bed.  When I finally got Noah situated for sleep, I went and layed down.  Then it began.  Noah started laughing...and laughing...and laughing some more.  I layed there and felt like someone had just turned on the most beautiful music!!!  I was tired and thought...you know, when my children were little, I would have yelled, "BE QUIET AND GO TO SLEEP!!"...tonight this was the most wonderful sound to my ears...I fell asleep to the sound of my happy boy's laughter...now that's something that make's me want to cry..but this time in a good way!!  Wonder if he was seeing angels??!!  Love to you...Lisa
EDIT: Lest I let anyone believe that I don't need or appreciate my husband's incredible help and his muscular braun...my arms and shoulders are very sore tonight...but women still rock!!

No AFOs for a While

We took Noah to his appointment last week for a new pair of AFOs(ankle-foot orthotics). Noah's feet were too full of tone and the therapist could only move his feet to a +5 degree of flexibility, not what she needed to cast his feet for AFOs.  His present braces appear to have been made at a neutral position for his feet, but because of Noah's tone, the therapist said she needs the bend of his feet/ankles to be at a -5 to -10 degrees(so she will not have to struggle with Noah's tone to get a perfect cast) in order to make the cast for his AFOs.  Sooooooo........Noah is going to have to be cast before he's cast...to have his feet put in casts to break up the tone a bit and give his feet more bend before he can be cast for AFOs.  Summer is not a good time to cast, for heat and sweat issues, so we will wait until the cool of the fall before getting casts on his feet. Casting does not hold good memories for me.  Noah's left foot(the strong tone side) was cast once while at Kluge when the thought was it would help to decrease his tone a bit.  Only a few days after casting, when the cast was removed to see how his foot was doing, and then to put another cast on, his foot were covered with sores, places the skin had come off because of Noah's strong foot pressure against the cast.  He had to wear moleskin for a week... and never had another cast on his foot.  The thought does make me a little apprehensive, as sores of any kind on someone like Noah can be harder to care for and can so easily become worse instead of better.    His present AFOs have been so good...perfect fit, no red marks on his feet after wearing for hours, they fit him like a glove(made at my favorite place, KLUGE!!), only his toes hang over the edges when he stands...so he WILL need some new ones...it will just be a while...and a wait. Until then, we will have another opportunity for a botox treatment that will hopefully continue to loosen his tone, I will stretch as much as I can, and I will continue to pray that Noah's strong tone will continue to subside and return to normalcy.  David called about the computer today...another answering machine...we will keep trying!!!!   Thanks for checking in with us, and thanks for your prayers...I am convinced that prayers are what keep Noah improving and what keep David, me and our family doing sooo great..thank you from the depth of my heart!!!.God is sooooooooo good!!!!!   Love to you!!!  Lisa

The Botox is Working!

It has been a couple weeks since Botox and there is a noticeable difference in Noah's arms...and even his hands!  The shots were administered in his arms, heels, and even back, but aside from his thumbs...the hands didn't receive botox.  It is much easier to raise Noah's arms...for things like getting him in and out of his chair, dressing him, and putting on his deodorant.  The interesting thing, though, is that in stretching his hands to put his splints on, I have been able to stretch his hands straighter than I can remember...in a very long time!!  When I would put the straps of his splints around his wrists, the strap would go to maybe the sides of his wrist and no further.  NOW, I can get the strap to the top of the right hand(and the right hand has more tone and is bent more  than the other hand.  The therapist once said that Noah's right hand would need surgery to  straighten.) and  can comfortably get it almost to the top of the left hand.  The left hand, surprisingly, has been more relaxed than the right, but doesn't seem to get even quite as straight as the right now...go figure!
  We are scheduled to go get Noah fitted for new AFO's...ankle-foot orthoses(orthosis= brace) next Tuesday. Noah has one pair that were made for him at Kluge in Charlottesville when he was first injured, but his toes hang out over the edge, and our wonderful neighbor fixed them when one of the bolts broke that keep the straps on the brace, so it is definitely time for some new ones.  They can be replaced as often as once a year...so I guess to have lasted 4 years is pretty good:)!!
  I called to check on the computer today...answering machine...maybe wel'll know something next week...I'll let you know when I do!!  What do they say...the best things in life are worth waiting for...I'm believing that saying applies here:)!!  Thanks for checking in with us...Much love!!  Lisabrace)ankle-foot orthoses (orthosis = brace)

Oh what a Day..early June at C...HKD...It was everything I hoped it'd not be...as I remember what a day!!

OK...I just couldn't resist!!  A little levity in writing about a long and trying day!  An appointment opened up for Noah to have his botox with a rehab doctor on Friday...so we were out of the house by 8:30am to get to CHKD by 9:00am(which is a VERY super early hour for our late rising Noah!).  We got there, had Noah in his "room" and waited another almost 1 1/2 hours until they gave him his versed...a medication to relax him.  It's the same med that's given when you have a colonoscopy...you are semi awake, but forget everything after the procedure is over.  We waited another hour with Noah still fully alert until we asked for and received just a little more.  The doctor was afraid of the first versed wearing off, so 10 minutes after receiving the second much smaller dose, she went ahead with the shots.  Noah did fine, not totally relaxed, but very little reaction to the many shots.  The problem came when the procedure was over...Noah was OUT for the next 2 HOURS!!  David and I gave him high powered Mountain Dew in his g-tube....rubbed ice over him...NOTHING woke him up(but my poor baby had goosebumps all over his body).  The nurse told us she needed to get response of intentional looking at her from Noah and awakedness for 15 minutes before she would release him. It wasn't until almost 2:30pm, and a second batch of ice, that we kept him alert for 15 minutes. We got him out of the hospital and to the SUV... David was lifting 155lbs of "jello" into our SUV...his legs got twisted, I untwisted from inside the car and grabbed his shorts to help HAUL him in...we almost lost him to the pavement....he slept all the way home, still asleep as we got him out of the SUV(still a heavy jello boy), and continued sleeping until around 7 that night!!! It is a very difficult thing transporting Noah when he's awake and all conditions are great...extremely difficult, nealy impossible when Noah has surgical procedures.   It was an extremely long and trying day...but we learned an invaluable lesson about versed that day....Noah takes a while to respond to it, but definitely will not give Noah that much EVER again!!  The benefits to his shots will probably not be evident for a few days...I am hopeful that all the effort will have been worth it, and am hoping Noah will get at least a little relief from the tightness in his extremities.  I will say, when Noah was "out",  he was as loose as I have EVER seen him...I thought to myself how wonderful it would be to have his hands and feet like that ALL the time...someday:)!!  Oh what a day....love and blessings to you as we all continue on our journeys:)!!

Botox will have to wait....

Happy 22nd birthday, Hannah...you are dearly loved!!!  Just had to put that in here:)!!

Noah was scheduled to have botox shots yesterday morning at 8am. Shots are administered into Noah;s wrists, hands, arms and heels to help relieve tightness in these areas affected heavily with tone.   At 3am I was awakened to Noah's moans.  I vented his stomach via his g-tube and went back to sleep. I was awakened at 5am to the sound of Noah throwing up.  His stomach was empty...before botox, there is no feeding after 12 midnight, but his stomach was full of gas...I vented his stomach,  and decided to sleep in the lazy boy next to his bed...staying close until I was sure he was sleeping.  He fell asleep around 5:45am... then a little after 6, David woke me up to get ready to go to the hospital. I told David of Noah getting sick and after talking to the doctor, he cancelled the appointment...would have to reschedule. The botox procedure involves anesthesia, so any sickness...known or unknown could make administering it risky.   I must admit...this was a HUGE disappointment, as we had waited a long time to get this appointment, this would be the last appointment with Dr Thorogood before her departure, but most importantly, because the botox would help alleviate at least some of the tightness in Noah's hands and arms, something he and we so desperately need. Not exactly sure why Noah gets sick, this is the second time in the last couple weeks...normally it's once in 6 months...almost went a year once, so it's rare.  The only thing I can surmise is that he gets too warm(although he sleeps with just a sheet and tee shirt lately since it has gotten warm) and doesn't know how to cool down...can't express himself or uncover himself...I think he gets kind of upset and swallows lots of air.  Noah rarely burps and not being able to burp all the air he has swallowed...well...it all makes for one really upset stomach.  Both nights, I took his shirt off and turned on a small fan, and he was fast asleep.  Last night he was again awake until 5am...I slept on the chair again, but he didn't get sick...so tonight, no shirt the fan on...and hopefully he and I will both sleep.

The biggest challenges I seem to have  in caring for Noah are being able to know "what's up" with my boy...the signs are not always so easy to read, and with no voice to tell me or ability to move his hands to show me...often times,  trial and error are all I have.  So I err, but I keep on trying...

No word on the computer...stay tuned:)....

God is faithful...I don't always have what I want, but I always have what I need...and I am so thankful!!!  Abundant blessings to you:)!!!  Lisa

The Girls are Back in Town

I started writing on Friday, but realized that Hannah's arrival home for the weekend was a surprise to her best friend whose graduation she would be attending, so I held off writing, and now it's Monday.  Sorry it has been so long since I last wrote, it has been a whirlwind week or two at our house!
 Emma arrived home from Brazil on April 29th...and we are thrilled to have her back!! Life has definitely changed with her return, and especially for Noah.  Noah has noticeably been laughing a whole lot more since she's been back...and with Hannah's return home last Friday morning, the laughter went to another level!!  Let me just say...I did not plan on having either of my girls home for Mother's Day, and instead...last minute...last week...had ALL of my children with me on "the day"...it was SO SWEET!!! To have the house filled with laughter all weekend was HEAVEN!!
  Hannah and Emma would roughhouse with each other, and Noah laughed hysterically...that was also SO SWEET!! But the coolest and funniest thing happened late on Saturday night.  Hannah had gone to bed, and I was trying to get Noah to sleep, so I turned off the lights in his room and the tv.  I was telling Emma about my swollen ankles, and she said she wanted to give me a foot massage...well massage away!!  So, we both sat on the couch and quietly talked while Noah was in the adjoining room(living/dining room).  At one point Emma and I said a couple things to each other which were personal, but pretty funny...and all of a sudden, Noah, who up to that point was so quiet, began laughing hysterically...and laughed...and laughed...and everytime we would repeat what we had said, he would laugh again.  Let me say, this was something that our crazy Noah, 4 years ago, would have found funny...and Emma looked at me and was happily surprised that Noah KNEW what we were talking about.  Sometimes, I think that because of his silence, you're not always sure what he understands...what he's thinking.  He watches tv shows and because he has watched a particular show's episode several times he will begin laughing even before the funny part comes as he KNOWS it's coming.  What was cool about this time, was it was something unsolicited, non repetitive, not spoken before, not expected...Noah was intently listening to our conversation and was totally engaged and aware of our every word...and laughed like crazy at our funny conversation...it was just another sweet moment of my wonderful Mother's Day weekend!!  Blessings!!