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
Wednesday, August 3, 2011
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
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
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
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
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
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
Wednesday, December 29, 2010
Williams Family Christmas Newsletter - "Part One" (quite lengthy)
Dear Friends:
As I sit here at the end of Christmas Day 2010, I am overwhelmed at how blessed our family is! I realize that I haven't blogged in awhile, that many of you didn't know we had a blog, and many of you may not have even realized all that has taken place in our family this year. It has definitely been one crazy busy year. I mentioned to one of my Mom to Mom leaders about not having time to blog and her response was, "Well when would you have time to?" All I could do is agree and laugh.
I've had Christmas picture cards printed and a little bit of time to do them, but knew that the newsletter had to be written first....and I honestly have not been able to sit down and do it. Every time I thought about the last 12 months in our lives, more specifically the last 7 months, I became so overwhelmed with emotions of the ups and downs. I really have just taken each day as it comes, faced it head on, and kept going. If I stop and think too much about everything, I either cry from the stress or cry tears of joy. So, I guess I'll start with our oldest.
Emmitt, age 4, is one pretty amazing kid! He goes to preschool at our church 4 days a week and is just learning so much! He is quite the social bug at school and is a permanent sponge. He is our child who hears, sees, and remembers everything. When he learns something new, his face just lights up and his eyes almost pop out of his head. He will turn 5 in February and will go to kindergarten next year, which is so hard to believe! He loves going to church and just when you think he isn't listening to the Bible story, will come home later and tell you EVERY detail. He has had a great time this year with Christmas and is enamored with baby Jesus. He has really taken on the role of "big brother" more so lately than ever. He is very protective of his two brothers, wants to teach them how to do things, and takes charge when necessary. He also likes to suggest "plans" to me and then follows it with the phrase "How 'bout that mommy? Is that a good idea?" Some days I laugh and some days it becomes a frustration and a battle of the wills. Santa brought a Wii to our family this Christmas and he is quite the "athlete" in bowling, golf, baseball, and boxing. He has so much energy!
Elijah, age 2, marches to his own beat. I jokingly say that there is a planet in the solar system with his name on it because he orbits his own little way. He goes to preschool at our church 2 days a week and loves going to preschool and church as well. He does and says everything his brother does but also has his own uniqueness to his personality. Eli is my "momma's boy" more so than Emmitt, but they both always make sure that mommy is taken care of. Eli is our child that any time he hears music of any sort, he starts moving (just like his daddy). Then again, he moves a lot when there's not music =). He is very soft spoken but also very animated! Elijah is my child that tells me all day long, "I uv you mommy". All in all, Emmitt and Eli are both very active and wonderful boys!
Now I don't think I can type such a short paragraph about Emory. Emory, age 7 months, was born 6 weeks early on May 6, 2010 weighing in at 7 pounds and 5 ounces. Feel free to look at previous blogs to catch up on anything I miss. Since both Emmitt and Eli were born 4 weeks early, I knew that Emory would be early to. However, I was a little surprised at the time of his arrival as well as in shock at his diagnosis to follow. When Emory was less than 24 hours old, we were told that he had Tetralogy of Fallot (a tet baby) and that he would need open heart surgery by the time he was 9 months old. Within a week of that diagnosis, we were told that he had DiGeorge Syndrome. Not knowing much about that at the time and just wanting to get him home, I didn't think a lot about it. But, thankfully Emory was born early and God placed in that NICU a team of very intelligent and very caring neonatologists. You see, they did bloodwork on all the babies often and when Emory's calcium level came back so low, one of the doctors ran what they call a FISH test which breaks down the chromosomes of the blood. If a child has 2 or more anomalies, they automatically do this test. This test showed absence of part of the 22nd chromosome, which is DiGeorge Syndrome. It falls under the umbrella of VCFS and has many different levels of severity to it. If you would like to know more about it, you can go to http://www.22q.org/ or http://www.vcfs.org/.
Emory was in the NICU for a month and came home on June 6th. Once home, we were instructed to follow up with a GI specialist, an endocrinologist, his pediatrician, his cardiologist, an immunologist, and when the time came, a craniofacial doctor (when he gets his first tooth). Just before he left the hospital, they removed his NG tube (feeding tube) and he was eating good on his own. Well, within a week of us being home, he began refluxing severely. We visited a GI specialist and he wasn't much help. Between June 6 and July 22, we were back and forth to doctors, had an upper GI, the reflux was getting worse, Emory was not gaining any weight, etc. We had gone to TN to see my parents on July 16 and when Emory continued to get worse we were able to get an appointment with another GI specialist (our second opinion) on Thursday morning July 22nd. Thankfully, he admitted Emory into the hospital for observation. They concluded that he had severe reflux, needed a different formula, and sent him home on July 26th on the feeding tube. That helped some, but not completely.
Later that week on July 29th, we had our usual appointment with the cariologist (we were seeing him every 2 weeks). After hearing us voice our concern, doing an echocardiogram, and examining Emory, he sent us straight to the hospital to prepare for open heart surgery. Needless to say, we weren't expecting to hear that on that day. After arriving at the hospital, we were kind of in a holding pattern waiting to get a spot on the surgeon's schedule. On August 3rd, Emory had his open heart surgery just before he turned 3 months old. Although that was an exhausting time for us, Emory was such a trooper and I'm so glad he had that done at such a young age. During the surgery they fixed the ASD and VSD and the surgeon said that the hole in the VSD was "huge".
Following that visit to the hospital, we came home on the feeding tube but within 6 weeks were showing some improvement with bottle feeds. From August until October, the doctor appointments have been many, we've had one other hospital stay, several medicines to be given daily, etc. But, on October 29th, we saw the cardiologist and he told us that we didn't have to come back for 6 months! That was such good news to hear!
For now, Emory is off all medications. He sees a physical therapist every two weeks and is doing well with that. Developmentally and physically, he is behind about 2 months. However, he is eating great, keeping his food down, holding his bottle, grabbing his feet, etc. Our two goals right now are to get him to gain weight and to get him to sit on his own. We continually follow up with all of his various doctors and they do bloodwork often. His latest bloodwork came back great! To look at Emory, you would never know anything was wrong with him or even suspect what he has already experienced in such a short time. We are often asked what his prognosis is for the future and we really don't know. The immunologist told us that she has never seen any case of "22q" the same and that all children are different. So, the months and years will be able to tell. Thankfully, the more we learn about his diagnosis, the more we can understand the "root of the problem" when we notice any abnormality or delay in Emory. One thing I have learned is that if we have to make a run to the emergency room, I should just take an overnight bag and prepare to stay.
Things I am thankful for......
Emory is holding his bottle on his own most of the time
Emory is grabbing at toys
Emory is eating jar baby food
Emory smiles at us
Emory knows us and responds to us
Emmitt and Eli have adapted so well to everything through all of this
Our prayer now, and you can join with us, is for protection against illness for Emory, for Emory to gain weight, and for him to reach the growth milestones in a timely manner.
Obviously, I wrote this letter/blog post at two different times. And, at this point in our Christmas newsletter, I would update you on Claude and I and what we are into these days. However, you've read enough for now and I've taken up enough of your time, so that will come later in "Part Two". Claude wants to submit a blog as well, so we'll let that be "Part Three" so to speak. We would love to hear from you throughout the year. Feel free to contact us through email or facebook. Should you want our home address or phone number, you can request it then. I realize that this is getting out after Christmas - I had surgery on the 17th of December and everything has been delayed this Christmas season.....all the baking, the Christmas cards, some of the activities, etc. I guess it's better late than never.
We are thankful that things have slowed down just a bit regarding all of our doctor appointments. We are very thankful that God has taken us on this journey together as a married couple, as parents, and as a family. We may not understand it all, but we are thankful. God has truly blessed us beyond what we deserve or would have even thought of. We pray God's blessings on you and your family in the coming year.
In Him,
Claude, Twila, and the "3E boys"
cdubcu@gmail.com
twirla777@gmail.com
http://www.claudewilliams.com/
Emory was in the NICU for a month and came home on June 6th. Once home, we were instructed to follow up with a GI specialist, an endocrinologist, his pediatrician, his cardiologist, an immunologist, and when the time came, a craniofacial doctor (when he gets his first tooth). Just before he left the hospital, they removed his NG tube (feeding tube) and he was eating good on his own. Well, within a week of us being home, he began refluxing severely. We visited a GI specialist and he wasn't much help. Between June 6 and July 22, we were back and forth to doctors, had an upper GI, the reflux was getting worse, Emory was not gaining any weight, etc. We had gone to TN to see my parents on July 16 and when Emory continued to get worse we were able to get an appointment with another GI specialist (our second opinion) on Thursday morning July 22nd. Thankfully, he admitted Emory into the hospital for observation. They concluded that he had severe reflux, needed a different formula, and sent him home on July 26th on the feeding tube. That helped some, but not completely.
Later that week on July 29th, we had our usual appointment with the cariologist (we were seeing him every 2 weeks). After hearing us voice our concern, doing an echocardiogram, and examining Emory, he sent us straight to the hospital to prepare for open heart surgery. Needless to say, we weren't expecting to hear that on that day. After arriving at the hospital, we were kind of in a holding pattern waiting to get a spot on the surgeon's schedule. On August 3rd, Emory had his open heart surgery just before he turned 3 months old. Although that was an exhausting time for us, Emory was such a trooper and I'm so glad he had that done at such a young age. During the surgery they fixed the ASD and VSD and the surgeon said that the hole in the VSD was "huge".
Following that visit to the hospital, we came home on the feeding tube but within 6 weeks were showing some improvement with bottle feeds. From August until October, the doctor appointments have been many, we've had one other hospital stay, several medicines to be given daily, etc. But, on October 29th, we saw the cardiologist and he told us that we didn't have to come back for 6 months! That was such good news to hear!
For now, Emory is off all medications. He sees a physical therapist every two weeks and is doing well with that. Developmentally and physically, he is behind about 2 months. However, he is eating great, keeping his food down, holding his bottle, grabbing his feet, etc. Our two goals right now are to get him to gain weight and to get him to sit on his own. We continually follow up with all of his various doctors and they do bloodwork often. His latest bloodwork came back great! To look at Emory, you would never know anything was wrong with him or even suspect what he has already experienced in such a short time. We are often asked what his prognosis is for the future and we really don't know. The immunologist told us that she has never seen any case of "22q" the same and that all children are different. So, the months and years will be able to tell. Thankfully, the more we learn about his diagnosis, the more we can understand the "root of the problem" when we notice any abnormality or delay in Emory. One thing I have learned is that if we have to make a run to the emergency room, I should just take an overnight bag and prepare to stay.
Things I am thankful for......
- If Emory had not been born so early, we would not have received his diagnosis of the DiGeorge Syndrome so early; therefore, not knowing "the root of the problem".
- Emory was taken care of by some of the most qualified neonatologists in this area as well as some of the most caring nurses in the NICU.
- God placed us in an area where the children's hospital is in the top 3 in the nation regarding cardiac care.
- The surgeon that performed Emory's open heart surgery is the chief of surgery at that hospital and took great care of us on that long day. On one of our return hospital stays for something else, he saw me in the hallway and remembered us....quite impressive!
- The Emory Children's Clinic (our "22q" doctors) is one of only 5 in the nation that deals specifically with DiGeorge Syndrome and God allowed us to live close enough to it for our appointments.
- Our church family, Pastor Al, Dr. Steve Odeh, and our Sunday school class....we could not have gotten through all of this without the help of everyone there (you know who you are)
- Prayers of pastors, churches, friends, etc. all around the world....literally!
- The support of our family....all of them, but especially my parents.....my mom has come in and taken over care of Emmitt and Eli, house cleaning, laundry, cooking, etc. several times and we couldn't have done it without the help of her and my dad
Emory is holding his bottle on his own most of the time
Emory is grabbing at toys
Emory is eating jar baby food
Emory smiles at us
Emory knows us and responds to us
Emmitt and Eli have adapted so well to everything through all of this
Our prayer now, and you can join with us, is for protection against illness for Emory, for Emory to gain weight, and for him to reach the growth milestones in a timely manner.
Obviously, I wrote this letter/blog post at two different times. And, at this point in our Christmas newsletter, I would update you on Claude and I and what we are into these days. However, you've read enough for now and I've taken up enough of your time, so that will come later in "Part Two". Claude wants to submit a blog as well, so we'll let that be "Part Three" so to speak. We would love to hear from you throughout the year. Feel free to contact us through email or facebook. Should you want our home address or phone number, you can request it then. I realize that this is getting out after Christmas - I had surgery on the 17th of December and everything has been delayed this Christmas season.....all the baking, the Christmas cards, some of the activities, etc. I guess it's better late than never.
We are thankful that things have slowed down just a bit regarding all of our doctor appointments. We are very thankful that God has taken us on this journey together as a married couple, as parents, and as a family. We may not understand it all, but we are thankful. God has truly blessed us beyond what we deserve or would have even thought of. We pray God's blessings on you and your family in the coming year.
In Him,
Claude, Twila, and the "3E boys"
cdubcu@gmail.com
twirla777@gmail.com
http://www.claudewilliams.com/
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