Procedures

Beckett's procedures went smoothly today, and he is now sleeping peacefully in his little bed. It was a busy morning, and we are glad that it is behind us. We are so thankful that it all went as expected with no complications. We will get the results back from the biopsies on Friday.

Thank you so much for your prayers. We are very thankful for them. We are all hoping to get a good night's sleep tonight. Good night!

In a world where every ounce matters...

Beckett gained about 7 ounces over the last 2 weeks! I was very pleasantly surprised when I put him on the big, cushy scale at the clinic. We now live in this world where a few ounces make a huge difference and can cause a lot of stress. The amount of weight he gains (or loses) determines if he will require continuous feeds through an NG tube. He still has fallen off of his curve, and needs to continue gaining at this rate in attempts to gain some ground. We are so thankful that he gained such a good amount of weight! Woo Hoo! Go Beckett!

His procedures (placing ear tubes, endoscopy, colonoscopy) have been scheduled for 8:00 Monday morning. Please pray that it all goes smoothly. Pray also for clarity in the endoscopy and colonoscopy. Pray that the doctors will see what they need to see, and the pathologists will be very attentive and get the information they need from the biopsies that will be taken. Through the scopes we are hoping to gain peace of mind by ruling things out or clarity on anything else that may be going on in his little body so that it can be treated. I guess what we are hoping is to gain is more knowledge. I am hopeful that everything will look good and healthy. We will slowly get different reports back from the pathologists over the following weeks. We are thankful for the timing of this and that the two different specialists were able to coordinate so that it we could get multiple things taken care of while he is under anesthesia this one time. Thank you for your prayers, and I will let you know how it went on Monday.

GI Update

I thought it was time for a quick update on Beckett's health.

First, let me say that we are so thankful for our new situation with the motility specialist at TCH. We are very confident that Beckett is getting great care. They follow him very closely and are very proactive. We are seen at the clinic every other week for weight checks and to discuss his feeding, growth, and digestive health. They feel his belly to make sure he is staying cleaned out and not developing blockages. I have met other parents who have children with similar motility disorders, and they go several months between appointments, and unfortunately become sicker in the mean time. We are blessed to have a doctor and staff who are following our little one so closely and providing very detailed care. It has been stressed in research from the major pediatric hospitals all over the country, that there is no cure for this rare type of constipation and motility problem, but it can be maintained by medicine and different treatments. We are so thankful that are doctor is doing a great job with Beckett's "maintenance" and he is not suffering from blockages and vomit that would result from poor maintenance.


Beckett will be getting tubes placed in his ears a week from today. He just finished another round of Flagyl (the antibiotic for his colon), and another round of antibiotics for yet another ear infection. So after a 5th round of meds for his ears, and a 4th round of Flagyl for his colon, it became a very easy decision for all his doctors that B needs tubes! Hopefully, the tubes will end this cycle and his colon will get a break from all these infections! At the same time, Dr. C will do both an endoscopy and colonoscopy to see how everything is looking on the inside. I was--and still am- slightly concerned about the "prep" for the scope, but they assured me it wasn't too bad. Please pray for Beckett as he will again be under anesthesia for the ear tubes to be placed and the scopes.


Beckett's weight gain has slowed. He has gained just over a pound since his six month check up. Weight gain is such a rollar coaster for this little guy. It was something that I always took so for granted with Brant. I never realized what a struggle just growing could be. So we have bumped up the calories per ounce on his formula once again. He is tolerating the more caloric mixture of his Elecare, so we are thankful for that. He also has learned to drink from a sippy cup! He takes half of his daily feedings from a sippy, and the other half from a bottle. I figure he needs a little variety. :) He is learning a lot of new things. He can now get from the laying position to the sitting position all by himself. He can also kind of "army crawl" and pull himself along. He prefers to crawl towards things that are not toys, such as remotes or wires, so I have a feeling he is going to be my child that gets into things. :) He is absolutely amazing to watch. He smiles and babbles and flirts with everyone. So while growth continues to be a struggle for him, he is learning new things and continuing to develop well. We are very thankful for that.


Thank you for your prayers. Specifically, please pray for the procedures he will be enduring next Monday, and for some good weight gain. If he does not gain well, he will be put back on the continuous pump night feeds through an NG tube. It is hard not to be anxious about it, but we know that God already knows what will happen, and he is holding little Beckett in the palms of his great and might hands. Thanks for checking on us. Happy Monday!

Brant is 4!

A couple of weekends ago, we celebrated Brant's FOURTH birthday! We are so proud of our sweet Brant. He continues to amaze us every day with his loving and kind personality and abundance of little boy energy. We are so thankful for our little man and how he is growing up. We are looking forward to being four and all the new excitement that brings. Hopefully, four will hold a little more stability then three for Brant. In the last year, he has become a big brother, had a sick sibling, moved to a new city, and grew in ways I never imagined from it all. That is a lot of a changes for a little guy, but you would never know it! He has been so resiliant taking it all in with a sense of adventure! He told me just today that it was "good to be home." I love that he now enjoys this house as his home and feels comfortable here. He also tells us often how he loves his baby for reasons such as, "because he is so ticklish." He still gets excited over little things. I am so glad he loves the simple things in life. A few of his favorite things: Cars , trains, boats and trailers, his "deep sea" [boat], his bass boat, Mickey Mouse Clubhouse, Special Agent Oso, Curious George, swimming, riding his bike, swinging, fishing, Sour Patch Kids candy, puzzles, school (though he would never admit it), purple, and all of his family.

This year, he had a birthday that just kept going...one weekend, our family all got together to celebrate Brant with a "Cars" themed birthday party, and the following weekend, Kyle took Brant to see "Cars 2" with a couple of his buddies and their dads. I think it was the perfect way to celebrate his birthday.

Happy Birthday to Brant! We love you soooooo much! You are growing into an incredible young boy, and we are so proud of you!

Galveston and Blessings

Please enjoy their first matching brother outfits. :) hehe! Now every time I dress Beckett in that outfit, Brant has to run and find his so they can match. So precious!

A couple of weekends ago, we made the quick trip to Galveston. With the way our car was loaded down, you never would have known we were going on a one hour car drive to a weekend long trip. We packed up enough stuff to travel across the country for a couple weeks! That always tends to happen, and that is why I drive an SUV. :) Everytime we discuss downsizing, I think of my inability to pack lightly, and we stick with the big vehicles...Anyways, back to our weekend getaway.

The kids, especially Brant, really enjoyed the beach. He played in the "wav-es" and built sandcastles with his daddy. He is so blessed with such a sweet daddy who loves to spend so much precious play time with his son. He went fishing in the ocean. Kyle actually caught something! We also spent a lot of time swimming in the pool, which is one of Brant's favorite activities. Beckett saw the ocean and smiled, but was not all that interested as it was naptime. He is not really a great traveler. I think it is much like traveling with a brand new baby...not necessarily the driving part because he no longer sleeps most of the way...but the actual being out of your regular environment part. It is harder to be up all night when you are not home, for some reason. He really did seem to enjoy the swimming pool and watching his brother and cousin play. He is definitely getting ready to want in on the action. Even though it may be difficult sometimes, we are so thankful for the opportunity to travel, and the fun we had with our family while we were there. It was great to spend time with my sisters and parents. It is really quite rare that we are ever all together, and we always enjoy each other when it happens. I absolutely love having sisters. We really had a wonderful time, and only one of us (I won't mention names), got sunburned! So a very nice little trip full of wonderful memories.

On another note, we have been blessed in some wonderful ways this month. We can definitely see God's provision in our lives during this exhausting time. Thanks to our generous families, we have been able to hire someone to help me two nights a week. This allows me to get a full night's sleep. Before the night help, I had slept 5 hours straight (or more) less then 8 times in 8 months. Complete exhaustion. There is something to be said about consolidated sleep, and when you are not getting any, things get tough. So, our precious families have decided to help us so that I can get a 7 or 8 hour night a couple times a week. Thank you so much! We feel so blessed to have family that is willing to help us in this way. And another huge blessing: a group of girls from a Bible Study at a church that we had not yet even visited, offered to give of their time to help me during the day. I met one of the young ladies through a mutual friend. She, along with her Bible Study group of about 8 girls, decided they wanted to volunteer to help me throughout the week so that I could get errands done or take a nap or clean or do whatever I need to get done. They take turns calling and setting up a couple hours to come spend with the boys, so I can have some time each week. What a wonderful blessing! I am so thankful for the service these girls are providing for our family. It has been a huge help! This is such a wonderful praise and we are so thankful to God, our Provider. While Beckett has not been healed, we can still see God moving. We know that he is taking care of us, and that he is holding our family in His hands. His provision for us is amazing, and we are thankful to Him.

We've Come a Long Way

After his first X-ray at 2 weeks old...the beginning of the process in a search for answers.

Our 8 month photo shoot...Gotta LOVE that smile!






Look how much he has grown! After arriving home from a recent weight check!


We've come a long way!

Back when Beckett was turning six months old, I meant to do the typical "Happy Six Month Old" post. I fully intended to post some six month pictures, stats, and accomplishments. However, I never did--obviously. To be honest, six months was a little tough. We are so thankful for his first six months and for his precious smile, and take neither for granted, but it was a hard six months, including a couple of hospitalizations, a couple of feeding tubes, a minor surgical procedure, blood tests, x-rays, invasive procedures, and weekly or bi-weekly check ups at the pediatrician's office. And countless sleepless nights.

Honestly, at 6 months, it did not feel like we had made much progress. We were still feeding a baby all night long. We were still struggling to gain weight (well him, not me. Ha!) Our baby cried during the evenings and would only sleep in my arms. He seemed so uncomfortable, and still so new. We still did not have any solid diagnosis as to why he was so chronically constipated. We knew he was diagnosed with Failure to Thrive but did not know why he wasn't growing at a typical rate. And let me tell you, I don't think parents want to hear their children called a failure to -- anything. So constantly hearing a failure to THRIVE is hard and does hurt, as thriving is something that is supposed to come so naturally.

But now, here we are, 2 short months later, and ready to do a Happy 8 Month Old Post! We have come so far and learned so much about our little boy. He is doing so much better, and we are so proud of our little man!

To start with, he is hitting his developmental milestones within a normal range. He babbles and smiles at everybody! He is quite the little flirt. He is sitting up and rolling both directions. He is SLEEPING in his own bed all night (with the exception of waking up for feedings) most of the time. He takes naps in his bed, too! He grabs at toys and will reach for something if he really wants it. Everything seems to go straight to his mouth, which is wonderful, really. He also waves by flapping his arm up and down. Precious! We are so thankful that he is learning new things every day and so aware of the world around him. It is amazing.

As noted by his pediatrician at his last appointment, we have come along way where his health is concerned as well. We had a check up and discussed that he has made progress, and we know more about how to care for him. It was a very positive appointment, and a helpful reminder of how far we have come and how much we have learned. We now know the cause of several of his GI problems, and we are receiving treatment for them by one of the few motility specialists. We learned that he does have that abnormality of the nerves in his colon. The pathology was clear that the nerves are present, but not what they should be. This could be either an immaturity that will mature over time, or it could be the way he will always be. Only time will tell. Either way, we are thankful for knowledge because now we can help him. He is now able to stool nearly every day, and this helps him feel so much better! Also, we know that he has Delayed Gastric Emptying. We had the emptying scan done that actually measured how long it took for his 4 ounces of formula to go through his stomach. It was a very concrete answer to what we had assumed for a long time. His stomach is definitely slow to empty, so now he is on the appropriate drugs for that as well. His spit up has decreased substantially as now food is actually emptying into his small intestine at a more appropriate rate, thanks to the medicine. We have heard of adults who have DGE, and report that the medicines change their life. And they live successful, healthy lives. So now Beckett has these new and specific diagnoses that can be treated and maintained daily. We do have to put a bit more thought into his daily feeding than most parents of eight month olds, but it is all very manageable. Over the last two months, we have learned that while yes, he does have these difficult problems, they are very controllable at this point.

We are thankful for the progress that has been made over the last two months in both Beckett's health and his development. We still have some questions and test coming up in the future, but when you look back, we have really come so far already. I can't believe he is eight months old! Thanks for reading!

On the Road...

The funniest things always happen while we are in the car...

Cue Beckett fussing.

Brant begins to sing "Jesus Loves Me" in sweet attempt to calm his baby brother down.

Hmmm...what should I sing for him next?

Well, how about "Amazing Grace?"

Oh, okay. Amaaaaaazing Graaaace...--Uh-oh. I don't have that one anymore.

You don't have it any more?

No. I guess it got swallowed up.

Swallowed up?

Yeah. Swallowed up...by like, "ABCD" or "Away in the Manger" or some other "muscic." It's swallowed up and I just don't have it any more. But I do have "ABCD." How bout that?

And by some miracle, the singing works, and the fussing stops.

What a precious heart to want to calm his brother. I have been amazed in so many ways as I watch Brant care for his brother...a brother that demands a lot of attention and more of mommy's time and energy than anticipated. He has shown a great maturity in many of the matters where Beckett's health is concerned. He is a very preceptive little boy, and I think he knows when Beckett is having a hard day or things are hard. I think he understands that we work very hard to take special care of his brother. I am proud of him. He genuinely loves "his baby," and I am so thankful for that. It has been so neat to watch the relationship between the two boys, even at such an early age. Beckett loves to laugh at his brother and learn from his brother. They both laugh until they have to catch their breath. It is precious. I pray often that Brant continues to love and care about his brother--without carrying the burden of his health--, in a situation that would be so easy to resent his brother for having more needs than many babies. I pray that God will guard his heart from feelings of anxiety and resentment. We try our best to protect him from what he doesn't need to know or feel, but he is aware. We know God is taking care of him and always has. We know God is in control.

And so I pray for my sweet Brant.