Is That Your Final Answer?

As many of you may know, we have been having Brayden tested periodically since he was born for Hepatitis C. His birth mother contracted HepC when she was carrying the twins, and although the transmittal rate is extremely low, Brayden was considered high risk becuase of his exposure.  See, during the pregnancy the twins underwent a placenta ablation surgery in order to correct the Twin-to-Twin Transfusion that was threatening their lives.  During this surgery they were exposed which leads to the high risk.

The first 3 test were negative and then last October, a day that I will never forget, the doctor called with some devastating news. Brayden's Hep C test had come back positive. David & I did a lot of research and I even contacted a hospital in Sydeny, Australia that specialized in Mother-to-Infant HepC transmissions.  We were told to wait and they would retest 6 months later for confirmation.  Our doctor told us that it was very unlikely that the test would change but there was a .006% chance.  GOD DEALS IN THE .006% MARGINS!!!

Early last spring we were tested again, another day I will not forget.  When Dr. Mazade walked in he had tears running down his face.  Of course, my heart sank and I expected the worse!  His voice cracked as he tried to mumble "It was negative."  He said that in all the years of his practice he had never seen a child test positive and then come back with a negative.  But it was definitely a negative.  However, he said that we still were not out of the clear until we received a test confirmation. The dr. wanted to wait another 6 months and we would retest again in October.  Last week, we got the results of his final test.  STILL NEGATIVE!

God's timing is so.....undeniably orchestrated.  I am a worrier! Yes, I know that is a lack of faith and I really struggle with the battling voices.  The Word grounds me and speaks over the voices of the enemy but sometimes i succumb to the anxiety of the unknown. Will Brayden be ok? Will he grow up and be happy? Will he be able to walk and run and play with his friends?  The unknown.  But then I remember that my obligation is not be sure Brayden grows up to be happy or to have friends but to grow up with the Word of God hidden in heart and a love for His Savior.  Then I see the visible hand of God moving in my little boys life. Protecting, providing, and healing!  It is amazing at how quiet the voice of the enemy grows in the shadow of The Almighty.  I am thankful, and humbled, that God has allowed me to see His Sovereignty and Providence!  We are completely overjoyed for this news and just wanted to share!!

David, Kelli, & Brayden Jackson

Hello

Just a quick update on some things since it's been awhile...

Made it to the G.I. Specialist, who ran a few tests and took a few images and found nothing of concern in Brayden's bowels. He said there is no tethered spine, so that is good, and he feels that Brayden is just one of those kids who will have some constipation.  We told him we give Brayden "half a cap" of Miralax everyday, and that seems to help things move thru, so he told us to keep doing that and we should be okay.  This was great to hear, as he said the laxative won't hurt his system, and as long as it works, we should be good to go.  We haven't heard from the Oncologist yet, so we probably need to follow up on that just to cover the bases.

Since our last post we've had a few things going on that we probably need to relay...

A few weeks ago we had a little accident where Brayden fell into some water and I had to revive him with CPR...we were rushed to the hospital in Palestine, and then ambulanced over to Dallas, where we were able to get stabilized and on the road to recovery.  I don't really want to relive all the details, but let's just say it was a traumatic day and one I hope to never experience again.  Thank you Jesus for gifting us our boy back that day, and please watch over him and keep him safe...in Jesus name.  This incident has caused us to take a step backwards in our progression with Brayden to get his right arm and leg to work "properly." Our neuro-therapist thinks this may have injured the brain some, and we will need to take extra care in our rehabilitation efforts moving forward.  Needless to say, my guilt has been overwhelming at times, but I have to remind myself to be thankful that we dodged a bullet, with Jesus as our ARMOR, and not consume myself with the "what migh've beens."  It's hard, and I told Kelli the other night -- this incident has left a scar on me that will never heal, and thankfully it is a scar that could've run deeper, but it will be there until Jesus takes me home.  Okay, so enough with the bad stuff...let's focus on the BLESSINGS we have been given.

Brayden is getting to be such a big boy...see the pictures below.  He is saying more and more words everyday, and he loves to be outside and he loves being around other kids.  He has never really been shy, but he really seems to come out of his shell when he gets around kids his own age.  We are so excited about that, as social skills are one of those things I think each parent worries a little about.  He has finally begun to say "hi" and it's so cute -- he says it really high pitched, and I guess I need to capture it on video and post it so you can appreciate it.  He says "thank you" anytime you give him something...which is alot, so he says it alot.  He was taught by another little boy (Justin) how to say "yee-haw" and the "yee" part he also says really high pitched, so that's been fun, but he hasn't seen Justin in a while, so he isn't saying it nearly as often as he used to.  Otherwise, B is doing all the things B normally does...he plays like a champ (as I'm sure most 2 year olds do), goes thru phases of good eating and bad eating, he sleeps so good (usually), and he loves to be outside and explore. He still has some delays, and we are still working on straightening out his right arm and leg, but all in all, this little boy is a trooper and has been such a blessing to me and my family -- g'parents included...he has his Mimi and Nana wrapped around his little finger...and I am so happy for that.  I love that our whole family has come together around this little boy and loved on him from the word "go."

By the way...BRAYDEN TURNED 2!!!  On Sept 19, Mr. B had his 2nd Birthday, but due to Daddy having to be in Detroit for close to a month now, we haven't had a chance to get his Bday Party put together.  So, I will be in town this weekend and will try to get that put together. 

Kelli, Patricia (Kel's Mom) and I got to take a quick vacation to NYC.  I was there for work, but Kel and Tricia came up the last weekend I was there and we had a great time checking out a lot of the things NYC has to offer.  We stayed at Hotel Mela, which was a block away from Times Square. We saw the Statue of Liberty/Ellis Island, Billy Elliott (on Broadway), Central Park, Freedom Tower, the largest retail store (Macy's), Coney Island (in the rain), and just about every square inch of Times Square...I'll try to find some pics to post as soon as possible.

Lastly...Kaysi and Robbie are getting married this weekend (Oct. 2)!!!!!  I am honored and humbled they asked me to perform the ceremony, and I am nervous and excited all at the same time.  I am just praying the Lord would allow me to remember all my lines and "cues" so it runs smoothly, but at the end of the day -- they will be married and that's all that matters...screw up or not.  :)

That's pretty much it...enjoy our most recent pics of Mr. B:

Brayden loves to be outside, and this is a pic on our deck in the backyard...and yes -- Boys will be boys!

This is Brayden as he's out to dinner with Kelli and Patricia (Mimi) -- he loves chocolate pudding!!!

This is Brayden and his new buddy -- Justin.  Justin is the one who taught Brayden to "Yee-Haw!!"

We got B a Monkey Backpack that uses his tail as a "leash" ... B loves it and wears it all the time.

Okay, so isn't this the cutest pic ever!!  He doesn't normally get to bang around on our "gadgets," but Momma relented and he is one super excited boy -- LOOK AT THAT FACE!!!!   :)

Mr. B ... just being Mr. B

Another dinner pic...but you can see we are trying to teach him to eat with a spoon (or fork)...he loves to "dip, dip"

 

MRI Results

We got our MRI results on Friday and it was a mixed bag of good and not so good results. 

As far as the cyst on his spinal cord is concerned, it has not grown any larger and is not constricting the growth of his spine.  So, that's good as we don't want to see the cyst grow, nor do we want it to contrict his growth.

However, (and I'm laying it all out here...so just be warned you may not want to know some of this) he did see that Brayden is constipated and his kidneys and bladder were pretty distended, so he's concerned about how Brayden passes "waste."  We have been referred to a Gastro-Intestinal (GI) Specialist and a Urologist to have his kidneys, liver, bladder, intestines, etc. checked out to see what's going on in there. This has pretty much been a problem with B since he was born.  If any of you have seen his pics from birth, there are a few with him that his belly is really distended and this is from him not passing his food the right way.  The good news is that we have him on a pretty steady regimen of Flax Seed Oil and Laxatives that as long as we continue to put those in his food, he will have a bowel movement everyday.  The problem the Dr. wants to find out more about is to see if this is a result of the cyst on his spine and the hole in his brain not allowing for proper communication to occur between B's brain and his other organs to process his food.  So, please lift this up in prayer...as we are back to praying for his bowel system (we used to pray that he would poop, as it was so hard for him, now we just need to pray for his entire system, that Jesus would set it straight). 

Going forward, the concern is that B may not have control of his bowels, to include bladder control, which at his age is very tough to determine.  This could lead to any number of things, from just having to maintain the laxative/flax seed regimen, to him having to wear diapers into adulthood...not fun.  So, again, we will hope to see these 2 Dr's as soon as we can, and we'll update you as to how this progresses.

All in all, the Neurologist said he was pleased with the results and is hoping for good news from the GI and Urologist.  He said he doesn't feel like he needs to see for another 12 months, which is a good sign.  Of course, he said if we see any negative developments to get in immediately, but at this point, he thinks things are going well. 


Anywho...Kelli had to go to Lubbock for work this week, so we shipped B over to Mimi and Papa's...here are a few pics of their first evening together, playing in the sprinkler!!

MRI

Yesterday was Brayden's MRI to image the cyst on his spine.  We checked into the hospital at 8:30am and we left at close to 3pm.  It was a tough morning and resulted in a long day, but he made it through like a champ and by about 5:30pm we had our little boy back.  Anytime you put a 21 month old under anesthesia, it's a scary process.  His momma was in the room while they put him under (they only let 1 person in the room), and that whole thing shook her up pretty good.  It's tough watching your baby go limp as he's crying because he's scared.  The above pic was before he knew what was going to happen and you can see him cheese it up for the camera behind his pacifier.  Anywho, he made it through okay, and the nurse said he did a great job, so we are proud of our little man.  He had a hard time coming out from the anesthesia, but we got some juice down him and got him home to "sleep it off."  Not sure he slept too much, but resting in his crib did him some good and by dinner time he was back to his old self. 

We sure do love that little guy and watching him experience pain and fear is not fun for us, but we are hoping his results come back with good news and that our Lord has removed his cyst for us...but only His will be done in our lives.

Thanks!
DD

New Pics

Hi...wanted to get out a couple new pics of Brayden, on the day before we go to the Dr for his next MRI. Please pray we get great results, and that his cyst has been taken away!!  We trust in the One who can do that on His own...Jesus.

Thanks!!

:)

Yeah, we know...

We aren't very good at keeping this thing up to date anymore, mainly because we're so busy trying to keep up with Brayden!

In the past month this little man has decided he wants to walk, so he is up and around and getting into everything he can get into!  Hopefully in some succeeding posts I'll figure out how to post video's 'cuz this little guy is blowing and going.

Since our last post we have been getting acclimated to Kelli going back to work part-time.  This was an adjustment at first, but many THANKS go out to my mom, "Nana," for helping to watch Brayden for 2 days of the week, and we have Christy from Wyldlife babysit for the other day Kel is at work.  We are also looking into some programs that could allow Brayden to get some "teaching" during the day, even prior to going to preschool.  Given his low birth rate and prematurity the State allows for him to qualify for educational access as early as 3 years old, so we are trying to get on the ball before that time so he, and we, can be ready when that time comes.  We also feel that he is a little behind the ball when it comes to social skills with other kids as the only time he is really around other kids is at Church, when he is in the nursery.  So, we're exploring a few options to see how we can help develop those skills necessary to transition to a school setting as he gets older. 

On a side note, I had to travel to Chicago for a class at work, and while I was there Kelli was able to come up for an extended weekend that we used as our Anniversary Trip since we couldn't get away in January.  This past January we celebrated 10 years of marriage and delayed our "trip" to February where we had a really good time together in Chicago.  We were able to see the Blue Man Group and Les Miserables as "shows" while we there.  We explored the Shedd Aquarium and Millennium Park as some local attractions, and we even made it out for dinner and a movie the first night Kel was in town to allow us a little date before we got into the meat of the weekend.  We also ventured out to Giordano's with a co-worker of mine to enjoy some deep dish pizza famous in Chicago, and we met a fraternity brother of mine to enjoy Piece, another pizza place, and Hot Chocolate which is a really swanky restaurant and hot chocolate bar...that's right...they serve many "flavors" of hot chocolate - really neat place.  Needless to say, we were both pretty exhausted from our Chicago trip, but we had a blast and got to do a bunch of fun things.

This is my last semester in graduate school, and it couldn't get here sooner!!  I'm ready to be through with this experience, as it's been good, but very taxing on my free time.  Counting down the days until May when I can finally say I'm a "Master" of something.   :)

Anywho, that's all I can come up with for now, but hopefully we'll have more extensive updates in the NEAR future.

Thanks for stopping by,
DD


Mr. Man got a swing for Christmas and we have just recently been able to get outside and enjoy it.  Thanks to Papa and Mimi for helping us get it up in the tree, as Brayden loves to get outside whenever he can and swing!!

Kel and I ventured out to Carter's to get Brayden some 18 month clothes as he's right in the middle of 12 month and 18 month clothes, but we don't have enough 18 month clothes.  So, while we were there they had this table that let Brayden play with Lego's and he LOVED IT!!!  You can see the sheer joy on his face as he get to play with the Lego's.  We sure do love our sweet and smiley little boy.