Wednesday, August 3, 2011

What a Difference a Year Makes

Dear Friends:

I am so sorry that it has been 6 months since my last post.  I WILL do better with keeping you all updated on the happenings of the Williams family.  We are all doing well and have had a lot of changes take place lately.

As I reflect over the last year, I am amazed.  Exactly one year ago today, Emory had his open heart surgery.  If I went into detail of everything that led up to his surgery, you would be reading a book, so I'll refrain from that today =).  The day began with us getting up very early after sharing a "couch" in Emory's hopsital room at Egleston.  We spent time with Emory praying over him and then my parents and our pastor (Pastor Al) arrived.  We walked down several different hallways and then went to a small area where we sat and waited.  This area was not an official waiting room.....it was just a side room off the hallway and just before you walked through the doors to go back into the surgery area.  The nurse came out and we had to hand Emory over to her.  We just passed him on with his blanket and she carried him back in her arms.

I think that part was harder for Claude than it was for me.  Honestly, I was nervous, but also so relieved.  I mean, they were going to stop his heart and that would make anyone nervous.  But, Emory had struggled so much before the surgery with eating, breathing, reflux, weight gain, etc. that if it meant that having open heart surgery would make those things better, I was all for it.  Plus, I had really just adopted the attitude of "giving up" meaning that I knew I couldn't do anything about it or for my son.  It was all in God's hands and the hands of the doctors.

Thankfully, Claude was able to be at the hospital or with Emmitt and Eli every step of the way.  It's funny how God orchestrates things.  In early April, just before Emory was born, Claude found out that his contract was not going to be renewed and he was without a job.  Emory was born May 6, released from the NICU June 6, hospitalized July 23, hospitalized again July 30, and had open heart surgery August 3.  During all of this, God not only provided EVERYTHING we needed through family, friends, meals, etc., but He also arranged it for Claude to be available....much more so than if he had been working full time. 

Emory stayed in the hospital for 8 days, which is longer than usual for babies who have just had open heart surgery.  He had some fluid on his lungs and some breathing issues which had to be taken care of before they released him.  When we took him home, we went home with several meds such as Lasix, Coreg, and about 3 others I can't remember the name of right now.  We also had a pulsox machine that the medical supply company brought to us.  Thankfully, we only used this a couple of times.

In the months following surgery, Emory was able to come off the feeding tube at the end of October.  He also has dropped all of his meds with the exception of taking Prevacid on an as needed basis.  If you were to see him now, you would never know that he had had surgery.  He is crawling, cruising, standing up independently for about 10 seconds, babbling, etc.  At our last cardiologist appointment in May, the doctor said we didn't have to come back for a year. 

He just recently had ear tube surgery as a resultof fluid build up that was causing hearing loss.  He wasn't having a lot of infections, just a lot of fluid.  But, he handled that surgery with excellence.  Our 3 year old, Elijah, has had ear tube surgery twice and Claude never let me go back with Eli.  He was afraid that mommy would get too emotional.  But, with Emory's ear surgery, Claude was at home with the movers overseeing the loading of the moving van (I'll save that for another post), Emory did fantastic.  He squirmed a little bit when they put the mask on his face for the anesthesia, but it was almost like he knew what it was and was used to it.

At our last cardiologist visit, Emory did still have a heart murmur, a small hole in his heart, that the dr. said should close on its own.  For now, we don't foresee any heart surgeries in the near future.  As I said before, if you look at Emory, you would never know what he had experienced and you would never think that anything was wrong with him.  However, he does still have some delays and issues with eating, speech, weight gain and motor skills - all of which is a result of the DiGeorge Syndrome.  As time goes on and as he gets older, he may or may not have similar or additional issues.  We just go one day at a time.  We are currently trying different table foods at all of our meals and he is making some progress but still chokes a lot.  He is also still on infant formula due to a severe milk protein and soy allergy.

We've just moved to Rocky Mount, NC.  In fact, we've not even been here for a week.  Claude has joined the church staff at Englewood Baptist Church as the Minister of Reaching where he will oversee the evangelism and sports ministries.  But, I'll have to blog more at a later time to fill you all in on that.  For now, we are enjoying our miracle baby who is so full of life and laugter.  Emmitt and Eli are doing great and the 3 of them play great together.  We are a little on the tired side from moving and unpacking boxes, but this too will pass.  Until next time.....

Blessings,

Twila

Tuesday, February 1, 2011

Car Seats

So, I get these emails from Toys R Us, Wal Mart, Target, Joanns, Michaels, Family Christian Stores, and the list goes on.  They all come at least once a week and have their weekly ad in the email as well as possible coupons.  I received one from Toys R Us advertising a trade in event that if you bring in an old item, you can get a percentage off a new item.  Well, I guess I knew this day would come that we would need a new seat.  I mean, after two other boys, the car seat we have is pretty gross.  And, poor little Emory may be rear facing until he's 2 at the rate he is gainig weight. 

All that is fine, but as I looked in the garage tonight at all our old stuff, I told Claude we needed a new seat and why and I was surprised he would be ok with it.  I just hate spending the money when I know it's going to be our last child.  Then again, he weighs less than 15 pounds and he won't grown into the front facing car seat and booster seat as quickly as the other two did.  So, I'm on the hunt now to find the best seat at the best price.

Tomorrow I have my final post op appointment and hope to have time to look at the car seats at Toys R Us before picking up the boys from preschool.  As far as that garage is concerned, we've got to have some warmer and dryer weather on a day without kids in order to clean it out.  February is consignment sale month around here and I'm already making preparations.  March is going to be our yard sale month.

Sorry if this post has been boring, but could you please do me a favor?  If you have any words of wisdom on car seats, please let me know.  Thanks!

Have a great Tuesday,

Twila

Friday, January 28, 2011

Pulmonologist Visit

On Monday, we saw the pulmonologist for the first time for Emory to have his second round of rsv vaccine.  The appointment went verry well, Emory had his shot....it burned a little and he cried some, but not anything too terrible.  After he calmed down, I got him dressed and we headed back home.  Sometimes the worst part about those appointments is the drive down there and back =).  We will go back in a month for another round of rsv vaccine (his final round for this year) and then will follow up 3 months after that.  The dr. did say that he still heard Emory's heart murmur a little bit.  That confused me but thankfully we have a nurse in the family that helped me to understand that better.  Basically, Emory still has a small hole in his heart that is using about 5% of his energy whereas the previous one was using about 95% of his energy.  Our cardiologist said that hole should close on its own and he is not currently concerned about it.  Overall, everything went well.

From day to day, I really don't think much about Emory's history, his heart surgery, his time on the feeding tube, etc.  My thougths are usually directed solely towards what needs to be accomplished for that day.  But then when I go to these appointments, I really begin to realize the extent of what Emory has been through in just 8 months of life.  I mean the questions the nurse asks when we first go back to the room, then the questions the dr. asks when he gets back there, etc.  As we were weighing Emory, the nurse said "Our file on this little guy is really thick and we haven't even see you all yet".  I was like "Yeah, he's had a lot take place since he's been born".  It's like a reminder and a flashback so to speak.  Please don't hear me being negative, it's just kind of a weird feeling.  I look at him and play with him everyday and don't think twice about things.  But, if he coughs the wrong way, breathes heavy, has a slight fever, etc. I'm on high alert and the "Momma Bear" thing kicks in really strong.

I'm very thankful and can only give God the credit that we have not had any illness this cold and flu season (knock on wood).  I hope and pray it will stay that way for all ours sake, but especially for Emory.  Speaking of, he is waking up from his nap wanting to play.  Until next time......

Twila

Saturday, January 22, 2011

Today Is A Special Day

I'd like to take a minute to preface this blog post....I began this post late in the evening of Wednesday, January 19th and here it is Friday, January 21st late in the evening again.  Maybe I won't get interrupted or fall asleep sitting at the computer =).  So, keep that in mind when you read the blog post from below.

Today's A Special Day....when I hear that phrase, I hear one of my former pastors, Dr. Ron Stewart, saying it on the local radio station in Knoxville, TN.  He would always give a reason as to why it was a special day.  And, after years of recordings, he put them all in a book.  For me, today (Wednesday, January 19th) is a special day for many reasons.

On this day 21 years ago, I gave birth to a very healthy baby boy at the young age of 16.  Three days later, I signed adoption papers and allowed case workers to place him in the home of two wonderful Christian parents.  I called him today to wish him a happy birthday and as I hung up the phone, tears came to my eyes - not tears of sadness but tears of joy.  Although I had no part in raising him, I'm proud of him and all his accomplishments!  He is close to graduating from college and will be attending graduate school soon after.  I could not have asked for him to have had a better life and I praise God for his parents and his family!

Now, jump ahead 21 years......If I would have known all of the challenges that the last 8 months were going to include, I may not have decided to have another child.  However, God knew every detail and gave us the exact amount of strength and grace when we needed it for all that Emory would face.  I'm hear to tell you that that little dude has overcome so much and is doing very well.

Emory had his physical therapy appointment this morning.  He continues to reach milestones and gain weight.  He has gained 9 ounces in 2 weeks and has grown 1/2 an inch in 1 month.  He is sitting up independently and we are working with him on learning how to crawl.  He is smiling and laughing.  He is doing well with his eating and has learned how to hold a small bottle by himself.  He has improved to refluxing about 5% of the time rather than 95% of the time.  He has energy to play like most normal babies his age.  Granted, he still has some milestones to reach and is still developmentally behind a month or two, but he is doing so much better than he was.  Please don't misunderstand me, I'm not saying that to be negative or to label him, I'm simply being realistic as his mom who sees these things every day.  Knowing what his diagnosis is, all of these things such as delays, weight issues, digestion issues, etc. are normal.

I've hesitated in writing my next thoughts because I don't want to sound insensitive and don't want to make things about me, but I really just don't know how to better say it.  On December 31st, one of Emmitt's friends, Elizabeth, lost her battle with cancer.  She had been diagnosed in March 2010 and in December 2010 had been told she was in remission.  Upon returning home from a vacation taken during the week between Christmas and New Years, God called Elizabeth home.  I mention that to you because on that evening, New Years Eve, Claude and I had no plans to go out.  We didn't have any guests over.  It was just another night where I cooked, cleaned the kitchen, bathed the boys, put them to bed, did some laundry, etc.  It was just another nightly routine and I was not happy about it.  All I could do was think about what else we could be doing, why we didn't have a date night, why I had to cook, why I had to bathe my kids, why I had to clean the kitchen yet again, etc.  Then, after watching the ball drop in New York and ringing in the new year, I logged onto facebook to post my status as "Happy New Year".  And, that's when we saw the news of Elizabeth.  It was at that very moment that God quickly convicted me of my thoughts and  filled me with the spirit of gratefulness. 

So, today is a special day because of my family.....Claude, Emmitt, Eli, and Emory.  I didn't think it would take me 21 years to be married and have a family, but as I said before, God knows every detail.  Those tears I cried earlier were simply because I am so amazed at what He has blessed me with.  The mere fact that He chose me to be "Mom" of the "3 Eboys" is more than I would have ever imagined.  I mess up every day (sometimes every hour), but ALL of my boys are truly blessings and God's gift to me!

So, I leave you with this question.....Is today a special day for you?  If so, why?

Much Love,

Twila

Thursday, January 6, 2011

Picture Christmas Cards

Dear Family and Friends:

If you receive a Christmas picture card from us late, I do apologize.  We participated in the Living Christmas Tree this year which consumed a lot of time.  Following that, I had surgery the week before Christmas and that took some time as well.  So, the cards had been put on the back burner till now.  Hope you enjoy them.  All of our pictures were taken by Hope Cox with Daisy May Photography.  She does work in the East TN/Kentucky area and does a fabulous job!  Visit her website at http://www.daisymayphotography.net/.  She does a fabulous job and we have always been pleased with her work!  Until next time......

Blessings,

Twila

Sunday, January 2, 2011

Dear Friends:

I write this blog post tonight with a heavy heart.  Our dear friends, Peter and Jessica Cooke, lost their 5 year old daughter last night....Jesus called her Home.  She was diagnosed in March 2010 with cancer but had completed all of her radiation and chemo and had received clear reports on all of her recent tests.  With that in mind, this was a terrible shock to her parents, their families, their church family, and their friends.  Emmitt and Elizabeth were good friends and always had a blast together!  Please stop right now and take a few minutes to pray for Peter and Elizabeth Cooke as well as all of their family members....I know they would appreciate it.

In Him,

Twila