Sleeping well

Boy, Lil Will loves to sleep with his mouth open, I have to admit, he got that from his mama!! HA!

Chicken and Chicken veggies, pretty good!

Today, Lil Will ate chicken and chicken veggies, he loved it. (didn't smell too good to me!) He is getting better at sucking and swallowing. We are going to work very hard to help him eat by mouth so we can get rid of that darn NG tube. We claim victory right now. God is amazing and if He can bring us to where we are today with Lil Will, He can and He certainly will lead us as we continue on this journey. All Praises to our King!

Lil Will relaxing...

Lil Will loves to move his little body all over his bed. He just sleeps wild!

LAUGH AT YOUR ENEMIES! GOD HAS ORDAINED IT!!!

O Lord, our Lord how majestic is your name in all the earth! You have set your glory above the heavens. From the lips of children and infants, you have ordained praise because of your enemies, to silence the foe and avenger. Psalms 8:1-2

The Lord gave me this scripture when we were in ICU right after the doctors gave us their grim report, and we took a picture of Will laughing and we put it in a frame. So this scripture speaks volumes to us. Like my wife posted yesterday we have been in some dark moments and in some dark places, but God has caused us to smile and laugh right along with our son. He has ordained praise from our lips, which has cause the enemy to shut his mouth!

Thanks be to God, who gives us the victory through our Lord Jesus Christ. Therefore my brethren, be steadfast, immovable, always abounding in the work of the Lord, knowing that your labor is not in vain in the Lord. 1 Corinthians 15:57-58

Happy 1/2 Year Birthday, Lil Will!

And many physicians didn't think Lil Will would see two weeks old, oh, BUT the God we serve! Hallelujuah! I spent some time this morning just praising Him for His goodness! I was reading this morning and the title of my lesson was "Refusing to Be Afraid of the Dark." Some important things I was reminded of was that we often wonder why God allows bad things to happen to us. He doesn't. Things happen but in the darkness is where God can truly work in our lives. In the darkness is where we can walk closest to Him and He has our undivided attention. Daniel 2:22 says, "He knows what is in the darkness and the light dwells in Him." During these past six months, we have been in total darkness. He has truly used this time of darkness to teach us how to lean on Him, to show us He is the light, and that all things are possible through Him! We are thankful for the lessons, for growing up in the Lord and knowing without a doubt that He is the light, the only light we all need when we find ourselves in darkness. Glory to His name!

And out comes the feeding tube...AGAIN!

What are we going to do with this lil one? It seems like at least once a week he pulls out his NG tube. This weekend he did it on both Sat and Sun. On the floor they do not like to restrain kids BUT, his daddy put sock on his right hand, attached tape to it to keep him from pulling/tugging at his tube. Lil Will is strong!

Hmm, Hmm good!

Lil Will is eating 10 to 15 spoons of food daily. He gets food delivered by room service. He has eaten peas, squash, peaches, apricots, bananas and rice cereal. He doesn't like applesauce too much. He loves to smack his lips even when he is not eating. It is so cute!

I love my swing!!!

Lil Will's nurse Ashley put him in this swing and he absolutely loves it. He rocked and rocked and then of course, in true baby fashion, fell asleep!

Busy Day

It has been a very busy day for Lil Will. First thing this morning he had a four hour test to determine what kind of peritoneal cavity he has and how effective his dialysis is going. Next, they put a catether in him to get a twenty four hour urine sample(I could not watch). Next, they sedated him to do a hearing test. Let me tell you about this son of ours, he laughed at their sedation meds and kept smiling. They finally had to get a stronger sedation and they were finally able to do the hearing test. Next he had an ultra sound of his heart. Oh, this morning I went out to get a cup of coffee and this boy pulls out his feeding tube AGAIN. He has very fast hands. So they had to put that back in. Next, he had his bath, then he had to suffer through me and his moma changing out his trach. His day started at 3:50am and did not end until 6:30pm. Needless to say he has been sleeping for quite some time.

Tammi and Tracy...How ya like my hair now?

My daddy slicked my hair back, don't I look handsome?? =)

Look at me!

Happy early half-year Birthday!

My meemaw and grandaddy were in town to celebrate Father's day and my 1/2 year birthday. Meemaw made me a cake but I couldn't eat it, I did get my finger in it, of course, with grandaddy's help!

Look at me, I am so relaxed!

Tummy Time!

Lil Will had some tummy time yesterday! He loved it! He slept for hours, now if his daddy can just get him to sleep at night! =)

Lil Will the night owl

This boy sleeps all day and is up all night. This will definetly have to change in the next couple of weeks. The good news is we will be leaving Children's Medical Center in the next couple of weeks heading to Baylor Our Childrens House. This is the final phase of our journey home. We close on our new home next week so Lil Will will have a brand new home to begin his life with his family and friends.

And they finally meet!

Since Lil Will's birth, he and his cousin Jayden have not been able to meet. Jayden just recently turned 2 years old and since Lil Will has been in the ICU, Jayden was too young to come see him. Jayden had seen alot of pictures of Lil Will and even has a picture of him above his bed, so he knew his name. It was a wonderful day! Jayden was able to get in the bed with Lil Will and give him lots of kisses!! This was also the first time since Lil Will was born that our entire family was able to fellowship together! (Meemaw, Grandaddy, Uncle Dennis, Auntie Tammy and Jayden) What a blessing! God is so good! He is ever faithful and will always do just what He says He will do! What a mighty God we serve!

Me and my cousin Jayden...

Jayden gets to visit Lil Will. He loves his cousin and loves to say, "William."

Early, Early, Early Saturday Morning....

Lil Will woke up this morning around 4 AM, he needed to be suctioned. William suctioned him and then we noticed that Lil Will had removed his feeding tube! He just hates to feel that tape on his face, so he is always tugging at it. We have to change the tape every day. Oh, gee, now we have to put another one in....ugh! So, the nurse asked me if I wanted to put the new one in, I said, "I guess!" BUT, of course, I chickened out! Before the nurse changed the tube I got the camera so I could FINALLY get some pictures of our angels face without anything on it! Oh, how precious it was to see his little face. He tolerated the placement of the new tube well, so I thank God for all of our blessings no matter how big or small.

We did it!!

Well, we just changed out his trach! I was so scared. William held the old one in place and I had to count to 3 so he would know when to pull out the old one so I could place the new one. I just couldn't get past number 2, I was crying and kind of shaky. William finally said, "Sweetie on 3 I am taking it out!" He did and by the grace of God I was able to insert the new one without any problem. Lil Will didn't even drop his O2 sats below 95. So, from here on out, William and I will change his trach ties 2 times per day and his trach will be changed out every Thursday. Of course, we are supervised by the respiratory nurse or respiratory therapist. So, today I accomplished a major hurdle, I have been dreading the day we had to actually change out his trach. I didn't share with anyone but I was terrified and didn't know if I could do it. BUT, of course, God showed me, yet again, that I can do ALL things through Him who gives me strength. All praises to Him!

William learns how to give meds and shots!

Look, my daddy gave me my meds! He even gave me one of my shots!

Finally!

Finally, we have been scheduled to begin our Peritoneal Dialysis training! It takes 2 weeks and we begin on next Monday. Right now I am overcome with such joy, and adoration for our Father. This progress has been all Him. He has kept us through the many storms we have weathered in the past 5 and 1/2 months. I know the path is not always going to be smooth, there will still be rough patches but one thing I do know for sure is that He will continue to lead, guide, and carry us along the way.

Look, I am sitting up!

Pictures......

The first picture you see on the header is Lil Will at 3 days old. The second picture was taken when he was a month old and the last picture was taken Mother's Day weekend. God has brought him a long way. He is here with us today because of God's grace and His mercy. God continues to strengthen him daily and we are so truly blessed to be one of His children.

OMG! I did it!

This morning I began learning how to give Lil Will his meds AND I even gave him his Lovanox shot! The meds are just given through his feeding tube BUT the shot, OMG, I had to give it to him in his "chunky" thigh. By the time this is all over, I will be a nurse! This morning he has been full of energy, smiling and trying to flip his body over. His daddy says he is on red bull for babies! HA!

Lil Will's Blog is HERE!

Finally, Lil Will's blog is ready. There are few finishing touches that need to be done but for the most part it is ready to go. Today he is doing great, he is sitting in his boppy pillow sleeping. Yesterday he was able to try baby food for the first time! His daddy fed him bananas. William says he liked them. The speech therapist wants us to feed him 10 to 15 small spoonfuls per day. William and I are getting ready to be "tested" on our trach care know-how tomorrow. We feel pretty confident but I am nervous about changing his trach for the first time. I know God will walk with us through this, He will make sure our hands are steady and that we do not do anything wrong. Everyday God is just continuing to heal Lil Will and show us how to feel more comfortable caring for him. Positioning him with his vent line so he can have tummy time, or sitting him in his bouncy chair. It can be very intimidating. We are learning how to control his vent, the vent is not breathing for him, it is just inflating his lungs, more like a CPAP machine. He rest much better with the vent. Thank you for continued prayers, we love you all!

Our Story

I was going to be 40 soon and we both knew we wanted to have children. I was concerned that it could take a while for us to get pregnant. Boy, God had a plan for us! We were blessed to conceive the first month we tried. WOW! We were so excited when we found out the news. Would the baby be a BOY or a GIRL? Who would he or she look like? Would they play sports? What would they become when they grow up? All things as a parent you think about when you about to bring a bundle of joy into the world. I had weekly OB check ups as well as Maternal Fetal Medicine check ups since I was “AMA” (advanced maternal age) to make sure both me and the baby were fine. Despite our efforts our beautiful baby boy was born with Down Syndrome and severe heart defects. What a blow! Not so much the Down’s but the heart defects that is life threatening. Not to mention you think you are going to have a healthy baby and suddenly your world as you know it is forever changed. Our Lil Will has been hospitalized at Children’s Medical Center since 12/30/08. During this time, we have experience tremendous sorrows, triumphant break through and amazing miracles everyday! Through it all we know the Lord has kept us, He has strengthened us, He has blessed us and He has grown us up in Him! This blog is a way for us to continue to share our story believing it will meet a need of someone that of whom only God knows.
To God be the Glory for the great things He has done!

About Us

About us, where do I begin? William and I are an example of how awesome God is and He can do what no one else can do. Each of us believed that God had our soul mate specifically for us. I had signed up for e-harmony back in 2002 but never paid for it. I always had reservations and finally in January 2007, I did it! It was weird, who meets anyone online? Well, around the same time William had seen an e-Harmony commercial and decided he would sign up for 30 days. God matched us on February 17, 2007! Our e-harmony communication was very easy! In fact, we breezed through it pretty quickly and went to open communication. This is when you can continue on e-harmony or share your personal information with your match. William shared his email and the rest as they say is history! We were engaged on May 30, 2007 and married on February 2, 2008! We are completely blessed beyond measure! What God has for you is for you, if you only believe!

Lord prepare us

Hi all,We are on the seventh floor at Childrens Medical Center in Dallas, finally out of ICU, we believe for the last time. God has given us a lot of insight into Will's diagnosed condition. Which I will not go into detail at this time. What I can say is that his diagnosed PAH is not as severe as they first expected. This has been the major concerned for quite some time. His heart is fine and he still produces urine so his kidney's have not totally failed and we get some pretty good pee pee diapers occassionally. Trust me, he has no problem in the poop area, PEEYOU!!! Today has been a busy day for him. He had speech therapy come in and work with him on sucking and eating. He did very well with eating from a dry spoon. Tomorrow he will be able to taste some baby food for the first time. His physical therapist came in and gave him his daily work out. He had him stand on his legs for a little while, he is still not holding his head up, but this is expected since he has been laying on his back for the majority of the past five months. He had a hearing screen today, they will bring in another machine to diagnosis his hearing, but Sequita and I know he hears just fine. If he hears some one behind him he turns his head to see who it is then he cuts his eyes back the other direction as if to say, "Oh, it's you". He has had some wonderful visitors the last couple of weeks. He says thank you to Melanie and Steve Davis for stopping by on Saturday. He really enjoyed his time with Glenda and Melissa Thursday before last. His cousin Jayden stopped in for the first time and laid hands on him and kissed him. He is always excited to see his Uncle Dennis, Aunt Tammy, Grand Daddy and Memaw. They were all here on Saturday. Nothing like family being together. WIll decided to sleep through most of the visit with the family. Sequita and I took CPR training on Saturday and we will be finish with his trach training by the end of this week. Then we will move on to his dialysis training. So we are looking at three to four weeks and he will be out of Childrens Medical Center of Dallas. On June 28th we plan to have a six month birthday party in his room. Maybe let him dip his feet in the cake or something. Just a small update on what is going on with the little one. Sequita is working on his blog, so that should be up and running soon. We will send the web address as soon as it is finish. I have attached some pictures so you can see how far the Lord has brought Lil Will.Be blessed