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......

• 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 taking his bottles well
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/

Update

Be on the lookout for our Christmas newsletter coming soon!