Sunday, November 22, 2009

Cant keep them apart!

*Beth*

Thank you for using Picture and Video Messaging by U.S. Cellular. See www.uscellular.com for info.

Think the new puppy is gonna be Gages!
*Beth*

Thank you for using Picture and Video Messaging by U.S. Cellular. See www.uscellular.com for info.

Tuesday, November 10, 2009

Fwd: Fw: Gage Elliott update

---------- Forwarded message ---------- From: pam elliott <pk8124@yahoo.com> Date: Mon, 9 Nov 2009 05:32:14 -0800 (PST) Subject: Fw: Gage Elliott update To: beth elliott <bethelliott_78@netzero.net>, brandi davis <nurse0503@yahoo.com>, erica jones <taylorbeachbabeprincesserica@yahoo.com>, Faye Davis <nhisgrace04@gotricounty.com>, Freda Sawyer <fsflowers@live.com>, teri holliday <terireaves1120@yahoo.com>, Wendy White <witehouse21@mchsi.com>

----- Forwarded Message ---- From: Kimberly E Hough <houghmtw@yahoo.com> To: cheryle ange <

Gage Elliott update

---------- Forwarded message ----------
From: pam elliott <pk8124@yahoo.com>
Date: Mon, 9 Nov 2009 05:28:25 -0800 (PST)
Subject: Fw: Gage Elliott update
To: beth elliott <bethelliott_78@netzero.net>, brandi davis
<nurse0503@yahoo.com>, erica jones
<taylorbeachbabeprincesserica@yahoo.com>, Faye Davis
<nhisgrace04@gotricounty.com>, Freda Sawyer <fsflowers@live.com>, teri
holliday <terireaves1120@yahoo.com>, Wendy White
<witehouse21@mchsi.com>

----- Forwarded Message ----
From: Kimberly E Hough <houghmtw@yahoo.com>
To: cheryle ange <cheryle.ange@ncmail.net>; sandra ange
<sandra.ange@ncmail.net>; lisa askew <lisa.askew@ncmail.net>; cindy
askew <ASKEWCI@ecu.edu>; Billie carol Larry Askew <l.askew@mchsi.com>;
Kim Furlough Barber <kimbmtw@yahoo.com>; tim susan barber
<sleepurr@gmail.com>; Cindy Coburn <labmtw@yahoo.com>; LORI COPELAND
<loricbiggs@yahoo.com>; Kittie Davis <kittiemtw@yahoo.com>; Pam
Elliott <pk8124@yahoo.com>; beverly furlough
<beverly.furlough@ncmail.net>; Lisa Gurkin <lisa.gurkin@ncsecu.org>;
jay hardison <HismanJ@aol.com>; Rhonda hardison
<rhonda.hardison@ncmail.net>; suzanne holland
<suzanneholland@hotmail.com>; linda hough <lchough@embarqmail.com>;
terry donna kelsay <tlkdrk@earthlink.net>; barbara leary
<barbara.leary@ncmail.net>; vickey lilley <vickie.lilley@ncmail.net>;
lwhite17@nc.rr.com; Vickey Manning <friendsoffamilies@yahoo.com>;
chrissy mckimmey <chrissy.mckimmey@ncmail.net>; jackie nobles
<jackie.nobles@ncmail.net>; beth pearson
<beth.pearson@ncmail.net>; jodie rawls <jrawls@martin.k12.nc.us>;
Dawn Riddick <bdcriddick4@yahoo.com>; kimberly sawyer
<kimberlysawyer@embarqmail.com>; diane snelgrove
<diane.snelgrove@ncmail.net>; joyce snell <joyce.snell@ncmail.net>;
casey spear <cspear@ecps.k12.nc.us>; Pam spruill
<paspruill@ecps.k12.nc.us>; amber stotesberry <asberry_21@yahoo.com>;
jennifer stotesberry <jennifer_stotesberry2001@yahoo.com>; mavis west
<mavis.west@ncmail.net>; vannessa whitley
<vannessa.whitley@ncmail.net>; tracey sanders winslow
<tswinslow@hotmail.com>; Melissa Young <melissay_mtw@yahoo.com>;
brenda brinson young <byoung@bankofdelmarva.com>; mom@inteliport.com;
kellie.brabble@ncmail.net; janet.ambrose@ncmail.net
Cc: debra avery <debra.avery@ncmail.net>; mom@inteliport.com;
kellie.brabble@ncmail.net; janet.ambrose@ncmail.net
Sent: Sat, November 7, 2009 4:51:37 PM
Subject: Fw: Gage Elliott update

From Aunt Kim  about 12 hours from the last time I wrote to
you......Gage's fundraiser from the Futrells/Jessica/Ram
Resturant/Friends of ML and Beth/ Elliott Family went really well.  It
was scheduled to be from 2-5pm but at 340pm all the pork was
sold/gone-Bless the Lord. They are going to use this money collected
to provide for needed equipment/supplies/etc needed in Gage's care
that is not covered by insurance or other agencies. This community
really turned out, and helped.  Donations of cakes/cookies/desserts
from individuals(if I start to name them I will miss someone) and Papa
and I bought about 7-8 pieces of 14 layer choclate cake--wow.... I do
not know the exact amount dollar amount raised but thank you for your
generosity and thoughtfulness and please continue to keep Gage and his
family in your prayers......THANKS TO YOU ALL>>>>>>>>>>>>>>>>>GOD
BLESS YOU

His sister, Taylor, Ryan and Cody (his brothers) were out there in
support.  Gage was there too,,, Ryan-he is the brother who gets mad at
anyone who hurts Gage-me included-was sick last week and Nana had to
take him to the MD.  Well she asked him what was on his list for Santa
this year.  He sat there in the car, and without smile looked at her
and said "Nana, really all I want is for Gage to get better".  My mom
if you know her about broke down and needed a Valium injection.  He
never did add anything to his list.  Wow.....

I held Gage after his feeding completed today and he is such a strong
willed little boy. I know he has to get some of this from the
Elliott's side. I see Gage move his mouth and wonder what is he saying
or thinking?  What would he tell me?  Probably to chill out.  I know
that the Lord does not put any trials or tribulations in our lives
that he doesnt give us an outlet or release for---we are to LEARN
something from every event in our lives.  And as I often wonder, and
sometimes scream loudly what could this be, I know that the Lord is in
Control and I am not;  I have to have faith and trust that his will
will be done;  however, I dont understand it and am not mature enough
in the faith to accept it without some tears/yelling.  Our family is
being tested and torn, and we all have Gage's best interest at heart.
Sometimes it is so hard not to take my frustrations, anger,
bitterness, and impotency about the situation out on everyone in my
path--whether they have a degree or not.  This is my cross to bear how
irritable and aggravated I am.  I pray about this.  As the news we
receive from other MDs is not favorable the more angry I become b/c as
the health care professional why cant I do something. I am verbalizing
my failings as a Christian and ask for pray, and also pray that
whatever I do I continue to keep Gage's needs #1 and not my own. To
not think of the hurts I incur but to help Gage in all the ways I can.
That my friends is my biggest desire. People came over to see Gage
today, and I wanted them to see him and know he is real and he is
hurts and he sleeps, eats, etc.....There is a promise That "Weeping
may endure for a night, but joy comes in the morning."
Psalms......Isnt that wonderful,,,,,,,

--
Beth Elliott

Gage Elliott update

---------- Forwarded message ----------
From: pam elliott <pk8124@yahoo.com>
Date: Thu, 5 Nov 2009 05:31:12 -0800 (PST)
Subject: Fw: Gage Elliott update
To: beth elliott <bethelliott_78@netzero.net>, brandi davis
<nurse0503@yahoo.com>, erica jones
<taylorbeachbabeprincesserica@yahoo.com>, Faye Davis
<nhisgrace04@gotricounty.com>, Freda Sawyer <fsflowers@live.com>, teri
holliday <terireaves1120@yahoo.com>, Wendy White
<witehouse21@mchsi.com>

----- Forwarded Message ----
From: Kimberly E Hough <houghmtw@yahoo.com>
To: cheryle ange <cheryle.ange@ncmail.net>; sandra ange
<sandra.ange@ncmail.net>; lisa askew <lisa.askew@ncmail.net>; cindy
askew <ASKEWCI@ecu.edu>; Billie carol Larry Askew <l.askew@mchsi.com>;
Kim Furlough Barber <kimbmtw@yahoo.com>; tim susan barber
<sleepurr@gmail.com>; Cindy Coburn <labmtw@yahoo.com>; LORI COPELAND
<loricbiggs@yahoo.com>; Kittie Davis <kittiemtw@yahoo.com>; Pam
Elliott <pk8124@yahoo.com>; beverly furlough
<beverly.furlough@ncmail.net>; Lisa Gurkin <lisa.gurkin@ncsecu.org>;
jay hardison <HismanJ@aol.com>; Rhonda hardison
<rhonda.hardison@ncmail.net>; suzanne holland
<suzanneholland@hotmail.com>; linda hough <lchough@embarqmail.com>;
terry donna kelsay <tlkdrk@earthlink.net>; barbara leary
<barbara.leary@ncmail.net>; vickey lilley <vickie.lilley@ncmail.net>;
lwhite17@nc.rr.com; Vickey Manning <friendsoffamilies@yahoo.com>;
chrissy mckimmey <chrissy.mckimmey@ncmail.net>; jackie nobles
<jackie.nobles@ncmail.net>; beth pearson
<beth.pearson@ncmail.net>; jodie rawls <jrawls@martin.k12.nc.us>;
Dawn Riddick <bdcriddick4@yahoo.com>; kimberly sawyer
<kimberlysawyer@embarqmail.com>; diane snelgrove
<diane.snelgrove@ncmail.net>; joyce snell <joyce.snell@ncmail.net>;
casey spear <cspear@ecps.k12.nc.us>; Pam spruill
<paspruill@ecps.k12.nc.us>; amber stotesberry <asberry_21@yahoo.com>;
jennifer stotesberry <jennifer_stotesberry2001@yahoo.com>; mavis west
<mavis.west@ncmail.net>; vannessa whitley
<vannessa.whitley@ncmail.net>; tracey sanders winslow
<tswinslow@hotmail.com>; Melissa Young <melissay_mtw@yahoo.com>;
brenda brinson young <byoung@bankofdelmarva.com>; mom@inteliport.com;
kellie.brabble@ncmail.net; janet.ambrose@ncmail.net
Cc: debra avery <debra.avery@ncmail.net>; mom@inteliport.com;
kellie.brabble@ncmail.net; janet.ambrose@ncmail.net
Sent: Thu, November 5, 2009 2:43:12 AM
Subject: Fw: Gage Elliott update

From Aunt Kim who has a cold and is whiny.....you see I am a BAD
patient myself. I do not like to be sick but that is neither here nor
there. So to dispel the rumors I Do not have H1N1, I do no have the
seasonal flu-i just have an aggravating cough that wakes me up at 1am
and will not let me go back to sleep so might as well get up and do
something. I will be dead by lunch but whatever. I got this stuff from
the kids in the schools I am seeing to prevent THEIR getting sick so
all is well.    Now onto Gage...He has an appt today in greenville
that Papa is taking him to with Beth and Papa had no clue what it was.
I was rather rude and short due to my lack of sleep yesterday
afternoon with Papa and I will pay for that but I will let you know
about that. Friday, Meme, and I take Gage to Duke to a new MD who will
let us know Developmental about milestones he may meet or not,
equipment we may benefit from---purchase if we have the
money/funds/etc/insurance
coverage whatever. For instance while we were at Duke Beth informed me
we were approved for a long applied for piece of equipment thru CDSA
however that gov agency has no money.....WHAT??? So we dont get it.
This is what we deal with.  I work in this system and I am frustrated.
Everything has to be reported as income so we will deal with this and
discuss this on Friday, but it will work out.  So this will be
interesting. I am very interested to see this MD.  Mr Buddy Futrell
and his wife and Tiffany at the Ram in Plymouth, NC are hosting a
Benefit for Gage on Saturday Pig Plate----which multiple donations of
food/desserts-Beverly Furlough's church, Debra Avery, and Aunt Natalie
Elliott Family of course have kicked in to help both physically and
with food with the event.  We are humbled by Mr Buddy and his wife and
all involved and appreciative beyond belief in the outpouring of
generosity and love shown to the Elliott Family.  You know we have
lived
here all our lives and see these people daily in passing, and it is
humbling to say the least.  So if I see you and cannot say a word do
not think It is b/c I do not care it is because words cannot express
the depth of my emotions. All I can do is pass it on when I am able to
someone else in need without questions.  People ask me all the time
how do we do it and I think now that some days the world pushes me
back two steps back, but the Lord pushes me forward one step and then
vice versa.  Some days the Lord carries me forward 2-3 steps forward
when I cant walk, and dusts me off and says OK lets go again...I think
that's when people like the Futrells and Tiffany and I know My Aunt
Natalie is there. She is ALWAYS there to dust us off and say lets
go......but then again I am her favorite niece. Thank you all and God
Bless. Our Family has been blessed with Gage he is a special Little
Sugar Plum. Please Wash Your Hands Alot and Get Flu Shot.........Going
For cough Drop....I hate to be sick.....still going work....this makes
me aggravated to be sick...Aunt Kim

--
Beth Elliott

Saturday, October 24, 2009

Got my hair cut!!

*Beth*

Thank you for using Picture and Video Messaging by U.S. Cellular. See www.uscellular.com for info.

Monday, October 19, 2009

Saying mama!!

*Beth*

Thank you for using Picture and Video Messaging by U.S. Cellular. See www.uscellular.com for info.

Sunday, October 18, 2009

Saturday, October 17, 2009

Dressed n camo. . Waitin on daddy to come get us to go huntin!
*Beth*

Thank you for using Picture and Video Messaging by U.S. Cellular. See www.uscellular.com for info.

Tuesday, October 13, 2009

On the way home:)

*Beth*

Thank you for using Picture and Video Messaging by U.S. Cellular. See www.uscellular.com for info.

Wednesday, October 7, 2009

Dreading his G tube surgery. .

Well the day we have been dreading is almost here. we make our way to Duke tomorrow to wait for surgery on Friday:( its gonna be a 5-10 day stay. praying everything turns out for the best even though I have very mixed feelings about this whole thing!!

Monday, September 21, 2009

The Cardioligst Report!

We Went to the Cardiologist on Wed.. . . the much dreaded visit went actually good! The med change to reverse his enlarging heart has worked:) She gave him a clean bill of health and said she didnt have to see him for a year!! Its a great feeling!!!!

Wednesday, September 16, 2009

Got some great news today. . . .

I had been dreading the visit to Gages cardiologist today. Last visit showed thickening of his heart, and was explained all the risks of that. They changed his meds hoping it would reverse the damage. . . . . and today it showed that it worked.

Tuesday, September 15, 2009

The Governor Morehead School for the Blind. . .

We had an awesome 2 hour visit today with Nann from the school of the Blind. She will start coming out on tuesdays To work with Gage. I am so excited for what she has to offer him:)

Tuesday, September 8, 2009

P.S. He doesnt lik being called "SCRAWNEY"

I think it is funny that since we saw Dr. Rice on Wednesday and he told Gage that he was scrawney, Gage has been eating up!!!! :) It has been all we could do to get 20 ounces in him......on a good day, (they want 33-34 ounces a day) but the past few days he has been drinking anywhere between 20-25 ounces!!!! YAY!!! I just pray that he continues to eat this much and more!!!

The Feeding tube is a go......:(

On Wednesday Gage, Aunt Kim, and myself headed to Duke for Gages 2nd opinion on his feeding tube. I really liked the Dr., and he made me feel more at ease with this whole thing. Other surgeons that I have come across seem to have no personality or bedside manners, but Dr. Rice was very informed, talked quietly, and had alot of information to offer to us. He was not as concerned about Gages aspiration as he was about his nutrition. He commented that Gage was Scrawney!! Gage weighed out at a mere 17.6 lbs! He wanted to put in a nose tube temporarily, but we got out of that this time. The surgery is scheduled for Friday Oct. 9th. It will be done in Duke. Gage will have to go to the PICU for at least a day, then to the step down unit for a couple more days. He will not be able to have the surgery done by scope, because of his small size. There are a cople of tests that the Dr. wants done pior to the surgery, so on Sept 21-22, we will make our way back to Duke for the tests and Pre-Op. On the 22nd we also have an appt with Gages new Geneticist (Dr. Rice spoke highly of her) to hopefully get some questions answered about his syndrome. So, in the meantime we have to get cleared for surgery by some of his other specialists, which means more appts to cram in. I will keep you all posted as this all begins to unravel!

Below is Aunt Kims email that she sends out.....

From a very tired and Aunt Kim.... We liked this doctor alot. He is a pediatric surgeon for Duke and specializes in this surgery. I have checked his medical license of course so no surprises there. Papa got up at the break of dawn to get Beth and Gage to my house. He is a early bird like me. Beth and I had to park on level 4 of the parking garage because it was packed. She had control of the stroller as we went up the esculator with Gage and all went well until we reached the top and she said "Mama is getting better at this boy" and she ran into the side of wall at the top. Very funny. I was holding Gage reading him my mystery novel about a kidnapping which it seemed to me he understood when this young lady and her son came up and starting talking to us. Her 4yo child had cerebral palsy and couldnt walk so she totes him because the stroller weighs so much. She was commenting on Gage's curly hair when Gage in true Gage form lets out a LARGE stool to be heard around the world.....he gets that from Beth's side of the family. We laugh until the smell, when I hold my breath and extend him out to Beth to take to the bathroom. I guess Gage did not like the comments about his hair huh? Anyway after 10-15pounds of that he returns and we wait. The MD was very nice and we discussed alot of options. He was very concerned about Gage's weight 17.6 lbs today and blood pressure. He also wanted to make sure that we understood that.......here i tear up again......He questioned Gage's life expectancy and wanted us to know that it was limited, and that the feeding tube would be for comfort only. We know that based on Gage Dx and his other complications that we have been blessed with the time we have with him, but to hear it out loud is not pleasant. He said on 9-22 the Genetic MD will give us more on Life expectancy but the outlook is not good based on his condition and other dxs.....It is so easy for even me as a nurse to say "well, enjoy this, be grateful, you have this".....but when you are sitting in a room holding a precious little boy who is looking up at you and someone is telling you that the time is short/limited-only comfort measures...it is NOT pleasant. I rationally know that what he is saying is true, and I know that the Lord is with us in that room and will be with us through this surgery and through each and every day until he takes Gage to be with him but....I still feel my heart break into a million pieces and I feel the air leave my lungs to the point that I dont even realize I am holding my breath so that I dont completely lose it...I see in the doctors eyes their sorrow for what they have to say, and I see the residents look down at the floor trying to look anywhere but at Gage. I know on some level that we are not the only ones they have had to say this to, and they will say it to someone else after us. I pray.




The MD wanted to place a tube in his nose to feed him with until after the surgery but Beth promised to feed him as much as possible until the surgery to maintain his weight. He is going to have the surgery on Oct 9th and will be in ICU and then the floor for a couple of days. He will have to be cut to have it placed and not use the endoscope because he is so little...it is safer. We have to go Sept 21 and 22 for testing and Genetics and Neuro and pre op. So we have arrangements to be made-hotel, jobs, who goes and who stays....When we arrived back to Plymouth just to end the day, Gage decided to have about 2-3min hard seizure....I suppose this was just to keep me on my toes...Please continue to pray and thank you for all you do and you have done.....it helps knowing there are people praying for us as we travel and deal with these MD appts. I know that this valley in life the Lord will take us through and the sunshine is just ahead...I have to believe that OR have myself committed to the insane asylum. Love Aunt Kim

Monday, August 31, 2009

Sunday, August 30, 2009

Feeling Better........:)

The past day or so has actually been kinda quiet around here. Gage is finally starting to feel better, and is getting back into his routine! He did have a pretty bad seizure Sat. evening. This time he would scream out in between the eye rolling, and the crunches. It pains me everytime he has this type, because the scream is his "it hurts" scream, and I cant take the pain away from him. I say a little prayer everytime he goes into a seizure, praying that God takes this from him! I wish it was me that this was happening to, not my baby boy! I do feel helpless, most of the time, sitting there watching him, and being able to do nothing but comfort him. I rub him (so he knows I am there), and tell him everything is going to be alright! BE ALRIGHT???? When is this going to happen? When is all this going to stop for him? I know its in the Lords hands, and in his own time my questions will be answered! I just have to find enough strength, and faith to get me there!

Pam, Gage, and I got up and went to church this morning! I know it is just a small step, but.... it is a step! There has been alot of built up anger inside of me. The Devil has been making me question my God, and my faith! I know I have to push past him, and do what I feel is right in my heart, for me! Im not a selfish person, and I always put needs of others before my own....... but this is something I am doing for ME!! I thought I had come to terms with things, but inside I havent fully! I feel alone, depressed, mad, a overall emotional wreck, and there is nobody that can do, or say anything to make me feel better! I have to do this for myself!

Friday, August 28, 2009

Seizures in his sleep......

Well, this morning started like most. Gage decided to wake up at 5:30 this morn. (I think daddys alarm is waking him) and I go get him and put him in the bed with me! This is my favorite part of the day, and I think it is his too. He LOVES TO SNUGGLE!!!! Just a few minutes after he falls back to sleep I feel his body start going into what I call mini crunches, and sure enough he is having a seizure while he is sleeping! This scares me to death knowing this, because how many is he having throughout the night that I dont know about? I am a very light sleeper (since having Gage), and the smallest little anything, and I am up and in his room checking on him, but with this he made no noises at all. Aunt Kim came and took his blood pressure early this morning (she has to take it a couple times a week and send results to his Nephrologist because of his high blood pressure and thickening heart) and he seemed zoned out for a couple of minutes, and then he started babbling. So now, is he having absence seizures also? We go at the end of Sept. to see his Neurologist, and his new Geneticist, I will have LOTS of questions to ask!

*Beth*

Thank you for using Picture and Video Messaging by U.S. Cellular. See www.uscellular.com for info.

After his surgery.

*Beth*

Thank you for using Picture and Video Messaging by U.S. Cellular. See www.uscellular.com for info.

The day he came home from his head surgery. He was so happy to be leaving:)

*Beth*

Thank you for using Picture and Video Messaging by U.S. Cellular. See www.uscellular.com for info.

Just some random pics

*Beth*

Thank you for using Picture and Video Messaging by U.S. Cellular. See www.uscellular.com for info.

A Special Poem.....

I have shared this with many of my family and friends before, but wanted to share with anyone who came across my blog. I found this poem on http://www.livingwithtrisomy13.org/ (they also have some other inspirational reading) when we first learned of Gages condition, and now I reference it ALOT. I almost have it memorized, and when the day seems to be getting tough, I just repeat the lines over and over.

Heaven's Very Special Child

A meeting was held quite far from Earth.
It's time again for another birth.
Said the Angels to the Lord above,
This special child will need much love.

His progress may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.

He may not run, or laugh, or play,
His thoughts may seem quite far away.
In many ways he won't adapt
And he'll be known as handicapped.

So let's be careful where he's sent
We want his life to be content.
Please, Lord, find the parents who
Will do a special job for you.

They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love.

And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is Heaven's very special child.

By: Edna Massionilla
December, 1981

Thursday, August 27, 2009

The past couple of days.....

Thursday of last week Gage had some immunizations at his 15 month check up. He almost immediately started running a fever, and with fever comes increased seizures. Friday he woke up and the fever had broke and all semed to be going good. Saturday-Sunday I could tell he just wasnt feeling all that great, and was running a small grade fever. Monday I called the Dr. to let them know that now he was also coughing pretty bad. We went to see the Dr. and they wanted to do x-rays to rule out pneumonia because (of his history of pneumonia and his aspiration). Thank God, it was not pneumonia, it is just viral and will have to play its course. My poor baby was one sick little boy. Both of his eyes were matted shut, and constantly running, he has a runny nose, a horrible cough, and still fever. He did wake up today feeling a little better. He has been cooing some and rolling on the floor, so hopefully the worst is over. We were also informed that Wednesday Sept 2 he will have his second opinion about his feeding tube in Duke with Dr. Rice. That is also his Aunt Kims birthday, so she will be spending her birthday with us at the Dr. all day. Sorry Aunt Kim :(

The Beginning....

4-26-09

My name is Beth Elliott, and we live in Roper, NC. On May 20,2008 at 32 weeks gestation God graced my family and I with a beautiful baby boy named Milton "Gage" Elliott. Right away the doctors were concerned by different morpic features that Gage presented, but the ones that were of importance right away was his congenital heart defects and his difficulty eating. He was diagnosed right away with micrognathia (small jaw), and stayed in NICU 8 days until he was sent home feeding with a haberman nipple.
While Gage was in NICU they ran a chromosome test, and the results showed that he was Mosaic, and had a unbalanced translocation 2;13. We were informed that he was the only known case ever reported with this specific chromosome disorder and that his prognosis was unknown. We were paired with a Genetic specialist to follow him unaware that she was just the first specialists of many to come.
Gage was being followed by a feed team where they determined that he aspirated his milk, and every bottle would have to thickened by Thick It. With this he developed reflux and was sent to a pulmologist. He was followed by a Cardiologist for his ASD, and PDA, and later to find he also had a VSD, none of them will require surgery as of now. He requires OT and PT because of contractions of his hands and development delays. He sees a Urologist for his undescended testicles. At 6 months old he had Craniostynosis repair, and days later started having seizures which lead us to being seen by a Neurologist. He also developed Hypertension after the surgery and is now being followed by a Nephrologist. Gage has been on several medications to try to control his seizures, and on April 18 was air lifted to Duke due to uncontrollable seizures.
While in the hospital my sister-in-law, which has been God send to us and also a pediatric nurse of 20 years, received a call from our Geneticist and told her that a skin biopsy that was done on Sept 17 2008 had just come back and results show that Gage has Mosaic Partial Trisomy 13. Immediately we all break down because we have done research on this condition before and 80% of the time the prognosis is not good.
It wasn't until we were released from the hospital and I was able to continue my search that I stumbled across www.livingwithtrisomy13.org. It has given me and my family lots of hope to see and hear the stories of kids that are living with this rare disorder.
I am still trying to learn as much as I can about this syndrome, and I vow to inform as many people as I can about this. I would appreciate if someone could lead me to some resources that are out there that I am unaware of. I have ordered 2 books from the web site already. I appreciate any and all information that anyone can give.

6-16-09
Hello to all! Well, Gage is 1yr old now, and everyday that goes by he continues to have stride in his progress. We celebrated his birthday with lots of close friends and family, and although it was a nasty rainy day, it was such a joyous occasion!
Since I last wrote in, there as been a lot of changes with Gage. I believe the doctors have finally seemed to get his seizures under control. There has been a few slip ups with his eyes rolling back in his head, and occasionally a stiffness of his arm, but NOTHING like he had been going through. We have a lot of people praying for our little man, and all I can say is there is a lot of power in prayer!!! There is not a day that goes by that I don't thank the Lord for blessing us with another good day!
He has FINALLY started cutting teeth, and now has 3. Both bottom and one top one. He has had the hardest time with them. He has been really cranky, and runnig low grade fevers, but I think the worst is over with that.
Gage is showing us his true acrobat skills. He loves to be on the floor rolling all over the place. Front to back, back to front. He is also starting to get up on his knees and scoot! I don't think it will be much longer before he starts crawling. He still doesnt have full head control but is making some good progress with that. We have PT and OT that comes out to the house now that gives him a real good work out! We are also excited that Speech Therapy is going to be starting real soon. I swear he says mama from time to time, and he coos to me all day long.
The doctors are still concerned about his eye sight. We have been waiting for his neurologist to clear him so he can have an ERG done, and we finally got the ok to go ahead with that test. We are looking for it to be done some time in August.
Well, I think that about sums things up for now. I will keep you posted as things continue to change.