Happy Birthday to Beckett!

Happy Birthday, Beckett! You are ONE today! We are so proud of you and all you have accomplished over this last year. You are an amazing little guy and quite the trooper!

A little about you--

You love music of all kinds...especially Praise Baby! If you are upset or fussy, we just pop in Praise Baby, and it miraculously helps you calm down. You and daddy enjoy playing the guitar together. You really love TV--maybe a bit too much! You like to dance, dance, dance! (This is very cute and I hope to post a video of it soon). One of your favorite pastimes is picking up the crumbs off of the kitchen floor and handing them to me. You also like to play with your cans of Elecare! You have recently discovered the dvd drawer and could stand there forever pulling out the movies one by one.

You have learned so much! You have learned to crawl on your hands and knees and you have gotten your first tooth! You are pulling up to a stand and may cruise a step or two...especially if there is a remote control in your view. You go for any electronic...cell phones, phones, iPads, baby monitors, remotes. That remote control is how we got you to crawl!! :) (Something I never would have done with baby #1 because remotes are not toys, but, well...it worked and you are crawling!) You like to splash, splash in the bath tub, but prefer your baths to be pretty quick. You really like your bottle now, and will absolutely not except formula from anything but a bottle. Sippy cups just tend to get thrown back at me now, although there was a point in your life where you did take it. Not quite sure what changed your mind... You drink 6-7 bottles a day of your Elecare. You have learned to sleep a 5 to 6 hour stretch at night! Whoo Hoo!

You are about 16.4 lbs and 28 inches tall. Your clothes range in size from a 0-3 month to a 9 month just depending on the brand and what style of clothing it is. You wear a size 2 diaper when you wear a sposie, and we have moved up to the "infant" rise on your cloth diapers.

Your smile lights up the room....really. You melt people's hearts. Your have such a big big personality. You show your excitement by laughing, panting, and kicking your legs! Your laugh is absolutely contagious, and you laugh until you have to catch your breath.

You love your big brother so much that you cry when he gets out of the car in the mornings for school. You love learning from him, and he loves to teach you new things. He was so excited to run in your room yelling "Happy Birthday!" this morning! He loves you!

We all love you so much!! You are a beautiful boy and we are so blessed to have you. Happy 1st Birthday, Sweet Beckett!

Welcome to Holland

A year ago today, I signed Brant up for extended day at school so that I could rest and sleep ALL day in preparation for welcoming Beckett into the world the next morning. I knew it would be my last chance to rest for a long time...I just didn't know it would be this long! If only I would have known the extent of my upcoming sleep deprivation, I would have taken much more than a day!

Tomorrow is Beckett's birthday, and we are so excited! We feel so blessed to have him as our son. He has brought nothing but good and priceless changes to our family. We are so thankful to be his parents!

To be honest with you, I can hardly remember his birth day...or week. We looked at pictures and watched videos from the day Beckett was born last night, and it felt like I was watching something for the first time...never having experienced it before, or maybe it just feels like a dream. Who knew that it would take one month and a feeding tube for him to be as big as he was on that first day of life. Who knew that this year would test us and "grow" us in huge ways. But then no one knows what each year, each day will hold. Only God. And as a sweet friend said, "He's got this."

That day feels worlds away.

And perhaps it is because we have entered a different world this year. We have new knowledge that I never imagined acquiring. I have learned about medical conditions that I never knew existed, and my heart has grown. I have watched my baby cry when there was nothing I could do to help, and my heart has ached. I have strapped my baby down for test after test, and my heart has longed for answers. I now know all about home health companies, feeding tubes, too many floors of the children's hospital, too many medicines, too little sleep. I have met moms who are going through painful heartache, moms who face much bigger giants than we do. Click here for more on this all too familiar world. My world has grown and changed this year.

This month has been a long month (explaining my complete lack of blogging) as we have been spending a lot of time doing further testing. We made 5 trips to TCH this month for appointments and tests each one followed by weeks of waiting. We are currently waiting for more results. I have realized as Beckett's first birthday nears that our sweet baby has some special needs. My little man cannot eat birthday cake or anything thicker than liquid for that matter. I have to explain this at each nursery drop off, grocery stores, restaurants. I get looks of shock when people learn how old he is. And he cannot poop (sorry, but it's the truth) without his twice daily Senna (ex-lax) and miralax. So yes, considering our baby cannot eat, poop, or grow (and his sleeping isn't great), which is what babies are expected to do, I suppose he has some special needs. His digestive system does not work as it should. We still do not know if this is something he may "grow out of" or if this will be a life-long battle for him, but for now, I think this essay sums it up well.
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Welcome to Holland
by Emily Perl Kingsley c1987 All rights reserved

I am often asked to describe the experience of raising a child with [special needs] - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It is all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I am supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing to remember is that they haven't take you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. (emphasis mine)

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around...and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandt's.

But everyone you know is busy coming and going from Italy....and they're all bragging about what a wonderful time they had there. And for the rest of you life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.

BUT...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.
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I think that essay describes a lot of how this first year with Beckett has felt. He is amazing, beautiful, precious, and unexpected. We do not feel that we are really in Holland, but we are not in Italy...maybe Switzerland?

And while there are days that I miss Italy-- because I am tired and it is hard to watch everything be more of a struggle for your child than typical--, and I may feel surprised that we are here (wherever that here may be) I am comforted by the fact that this does not surprise God one bit. While landing in Holland or Switzerland may come as a shock to me and the thousands of other parents who are here for some reason or another, it does not shock our God. Our all-knowing Father planned this for my family's life.

Psalm 139:13-14, 16 says For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful. I know that full well....Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.

And I find comfort in that. Have there been days of tears and hurt? Yes. Do I fully understand why my child is facing ongoing health complications? No. But being wrapped in God's love has brought peace to those days. Landing here (wherever that might be...for any of us, really) was not a mistake.

This year has been hard. Watching my baby go through test after test, all the waiting, wondering why he is not growing, but I do believe the pain will go away. Because I am not fighting this battle alone.

This is what the Lord says to you: 'Do not be afraid or discouraged because of this vast army. For the battle is not yours, but God's....You will not have to fight this battle. Take up your positions; stand firm and see the deliverance the Lord will give you, Judah and Jerusalem. Do not be afraid; do not be discouraged. Go out to fave them tomorrow, and the Lord will be with you. 2 Chronicles 20:15, 17

I also know the pain will go away because this world-- not Italy, not Holland, not Texas-- is NOT our home. It is not our final destination. Revelation 21:3-4 says And I heard a loud voice from the throne saying, "Look! God's dwelling place is now among the people, and God himself will be with them and be their God. He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away." As a Christian, the pain will go away. Because this place is not meant to be our home.

"Great and marvelous are your deeds,

Lord God Almighty.

Just and true are your ways,

King of the nations.

Who will not fear you, Lord,

and bring glory to your name?

For you alone are holy.

All nations will come

and worship before you,

for your righteous acts have been revealed."

Revelation 15: 3-4

A tooth! A tooth!

See that little glimmer of white on his bottom gum? Yes, it's his first tooth! It broke through on September 9. Yay! And let me tell you, there was a lot of hard work put into that one little tooth breaking through the gums...a lot. It is definitely worthy of a celebration!

We are celebrating the "little things" (and this literally is LITTLE) while we wait. Please continue to pray for Beckett's health and for the doctors who are treating him. It appears as if his c.diff has returned, or there is something else going on in his colon. His poor colon just can't catch a break! Also, we are so thankful that we were able to see the geneticist nearly 3 months sooner then expected! God answered that prayer with a big YES, and we saw this specialist a little over a week ago. We are now just waiting--yes, waiting, AGAIN--for results from some blood work. Please be praying for our family during all of this waiting. I truly believe God is working in my heart during this time of waiting, and He must definitely want me to learn patience, which has never been a strong point of mine. He is teaching me to surrender to Him and trust Him. I am learning not to live in a state of anxiety, but to remember that our God already knows exactly what is in Beckett's (and everyone's) future. He planned it out perfectly for our son, and designed our sons for His purpose. I find great comfort in knowing that God He is taking care of sweet Beckett and the rest of us!

I am your creator. You were in my care even before you were born. Isaiah 44:2a (CEV)

Waiting Once Again

Here we are. Waiting once again.

I spoke with Beckett's new nurse at Cincinnati Children's Hospital Medical Center today, and we discussed his case history. She gave me an idea of how the process worked as an out-of-state patient and some scenarios of what we can expect to happen. It definitely gave us a better picture of how this could all play out. She has now passed Beckett's chart on to the doctor they feel best fits our needs, and we can expect to hear back from them next week with a plan of what needs to happen next. More than likely, we will be headed to Cincinnati sometime this fall. It is rare that they review a case and decide that everything is being done exactly how they would do it.

We had a busy GI day today as we also had an appointment with our doctor at TCH. Once again, they were not too pleased with Beckett's rate of growth. He is gaining, which is a praise, but we do need him to gain more! So please keep praying that he will grow! They bumped his formula up to a toddler Elecare formula, now concentrated to 30 calories per ounce (as opposed to the typical 20 calories per ounce in infant formula.) That means we will be flying through these little cans of formula even quicker! And he gets to try vanilla flavored formula which should add some excitement to his day and a nice change of pace to his taste buds!

I am thankful that his GI team at TCH is very understanding about our second opinion with Cincinnati, and they are willing to help in any way by doing any necessary blood tests, stool tests, etc. The NP actually looked a bit impressed that we were working with CCHMC...like she knew I had been doing my research. They are also looking forward to our appointment with the Geneticist here at TCH, as that will help look for rare metabolic disorders that could be causing his failure to thrive.

It is a definite possibility that his lack of weight gain is in direct correlation to his motility disorder, but they agree that it is good to investigate or rule out other possibilities.

So this week, we wait. And honestly, I am quite nervous about it. In a week, we could have new information or be on a path that will change my little boy's health and quality of life. This has been quite a process already, months quietly in the working, months of searching for just the right place to take him, months of waiting for him to "prove" his need for more intervention. And now here we are, a week out from the possibility of more help and more answers.

Over this next week, my prayer is that I can wait with purpose. I can use my time to praise God and love God with all of my heart. I can use my time to teach my boys about God's love and God's truth. I can spend my time in prayer for my family, our dry and "thirsty" state, and those around me. I do not want to spend my time in a ball of anxiety- nervous, exhausted and on edge. I do not want to live in worry while I wait. This is all much easier for me to say then to actually do.

Please pray for the doctor who is doing the final review of Beckett's charts and tests. Pray for patience and wisdom. Pray that they might find the underlying root to his difficulties if there are any and that they would have some solutions to help him grow and thrive. Pray that nothing would be overlooked. Please pray also that all travel arrangements would line up easily in the even that we need to travel. Please pray for our hearts while we wait.

Thank you so much for your prayers.

Facebook, I'm in

Well, it look as though the time has come...I must join Facebook. I am probably one of a handful of Americans-- or people across the world with Internet access-- without Facebook, and I, honestly, am quite content with my decision. I didn't really feel like I was missing out on too much. And, as an added bonus, I think it really helped my time management skills (or lack there of) to not have it. However, in this technological age, apparently it is necessary in order to keep up with your child's school. Yes, people, my number one reason for getting Facebook is to know the preschool schedule, field trips, etc. Otherwise, my sweet son might miss some big event, and we would never even know it. :) And I guess we can't have that. (Actually if we never knew the difference, it would probably be okay, but ya know...) I don't want him to miss out on fun stuff because his mama is stuck in the dark ages. So, "Facebook, I'm in."

Next Steps

Our sweet little guy is nearing his first birthday. In some ways, time has absolutely flown by, but at the same time, I can't remember my life before him. He has been an amazing addition to our family, and we are so thankful that he is doing as well as he is. It absolutely melts my heart to watch his big brother love him in huge ways. His smile and laugh really do have the ability to light up a room. He is precious, and I feel so blessed to get to be his and Brant's mother.

As his birthday draws near, we still have some unanswered questions regarding his health. Many of the "what-ifs" over the last year revolved around how he was doing at magic number one. The doctors have wanted to give him time to catch-up and gain some ground before looking at more possibilities. There is a protocol to follow, and I do understand and appreciate their approach. I think they believe in giving kids who have a sort of rocky start to growth and digestion a chance to recover and thrive before subjecting them to more testing. Many children do tend to "take off" after the appropriate medical intervention and of course, that is still our hope for Beckett. When he was first hospitalized with the diagnosis of failure to thrive, we all thought that once on the proper special formula and reflux meds, he would grow and chunk up. To be quite honest, I think he has surprised the doctors as he continues to be a "little puzzle." His formula intake is good, and he exceeds their minimum calorie count every day. We are still looking for an explanation as to why our son doesn't grow at the typical rate and why his digestive system basically doesn't work. We have learned that sometimes there is no "why," but we want to give it a search first.

So, after months of research and prayer, we have decided to contact a team of doctors at the Colo-rectal Center for Children at Cincinnati Children's Hospital Medical Center. This is the number one rated children's gastrointestinal department of all the children's hospitals in the nations. I guess we figured if we are going to get a second opinion, why not go to the top rated place? This is the only colo-rectal center for children in the nation, and they have helped countless children with severe idiopathic constipation, Hirschsprung's Disease, and other GI disorders. I have heard many positive stories from other mothers. So I emailed one of the lead doctors, and they are interested in helping us with Beckett. We have sent all of his medical records and radiological images to Cincinnati, and we are waiting for the team to review his case, and decide if they have any ideas of how to help Beckett. They will then decide if we need to pack up and head to Cincinnati so they can treat and care for our little guy. Of course, the doctors there could also decide that there is nothing they would do differently with their treatment then what is already being done. From my research, I do know that if there is no other diagnosis (such as Hirschsprung's disease), they treat with the same medications as our doctors here. It could be up to 6 weeks before we hear their review of his case. We are just looking forward to having another set of eyes review Beckett's history to ensure that we are doing everything possible for him.

We are thankful for our doctors here and the great job they have done "maintaining" Beckett. We are blessed that he has been watched very carefully and has avoided infections such as enterocolitis (a serious infection of the small intestine and colon which is often a complication of Hirschsprung's Disease or severe, chronic constipation.) They have been steady and helpful throughout the course of the year, constantly reminding me that it is a marathon, not a sprint. We have to troubleshoot and try new and different things slowly in order to get a better idea of what is going on. It can just be so hard as a parent to have patience when it comes to your child's health care. While we think TCH has done a good job of keeping Beckett GI system moving (he now vomits very rarely and has a bowel movement every 1 to 2 days), we are looking to Cincinnati for the possiblility of a larger umbrella diagnosis that might cause his list of problems or for an unlikely oversight of Hirschsprung's. We also would just like to hear from another set of doctors about how they would treat our son's motility disorder in order to possibly have some options.

In addition to the doctors in Cincinnati reviewing Beckett's case, our doctors here are beginning to look into more possible explanations for his slow growth such as rare metabolic disorders. After he turns one, and we see where he is growth-wise, his GI team will consider what needs to happen next, if anything. For now, our pediatrician has decided to refer us to a geneticist to get the ball rolling with that set of testing. Our appointment with the geneticist is not until the end of November, but he is on a waiting list should something become available sooner. We are hoping for sooner.

We spent some time deciding if we wanted to share all of this information here, but ultimately what we need right now is prayer. We are juggling a lot in this next phase of Beckett's health care...trying to learn why? Please be praying that as the doctor's in Cincinnati review Beckett's medical history, they would be careful and wise. I pray that God would make any important and pertinent part of Beckett's records jump out to the doctors. I pray for patience while we wait for these next steps to take place. I pray that we will feel confident in the answers we get, while at the same time, having the wisdom to know when to keep looking. I pray for peace. Please pray that Beckett would just miraculously start gaining weight and digesting his formula on his own (without drugs). We believe in prayer, and we are so thankful for all of your prayers for our family. Thanks for checking on us and praying for sweet Beckett and the doctors as this next phase of diagnostics begins. Thank you.

P.S. I apologize for the wordiness of this post...I am one tired momma, and sometimes I can't get all my thoughts together. Thanks for understanding. :)

A Farewell to the Puppies (and something I enjoy)

His favorite new trick...

Little man on the loose! Determined to get out of that chair!

Beckett's puppy room has seen us through many sleepless nights. Nights that felt as though they may never end. Nights filled with pacing in circles to keep him calm. Nights worrying about what would happen next. Nights of holding him upright in the rocking chair so that he would sleep calmly. Nights learning to work a feeding pump. Nights where he wasn't allowed to eat in preparation for the next day's procedures. Nights filled with tears. Nights of prayer. And then also, days of prayer. Days of thanks. Days of wonderful firsts...first smiles, first laughs, first rolls, first peek-a-boos, first babbles, first discoveries. Days of sunshine! It has been good to us. The puppies have been the predictable part of every day since his birth. I had fun spending a lot of time and energy picking the puppies and finding people to help make the bedding and curtains. (Thanks Mom, Jonnie, and Misty). I painted. I decorated. Yes, the puppy room has been very good to us. It has seen us through this year of ups and downs and up again. I will always love Beckett's first bedroom. But it is time to bid it farewell!

I have decided that we are going to kick Beckett's second year off with a bright, fresh start. I have found the perfect thing to fit Beckett's fun and silly personality. It is wonderfully cheery and absolutely precious. It still has a lot of brown in it, so I will be able to ultilize many of the same basic, core parts of his room. Also, decorating and painting is just something I enjoy doing. It is fun for me...a hobby. I love a new project-filled with paint colors and fabric swatches and everything crafty. So it is kind of for me, too. :) I think it should be fun.

In order to give the puppy room the proper send off, I attempted to take B's picture in every sweet spot in the room. However, now that he is growing into quite the little boy, he is starting to not be so compliant with my photographing. How very male of him!

I hope you enjoy the attempted pics with sweet Beckett, and then the ones where I clearly gave up fitting him in the photo. (And if you know anyone who might LOVE a puppy room, just let me know... :) )

Pictures of Brant's room...coming soon. It still needs a few finishing touches. And maybe a new coat of paint. We'll see how crafty I feel in the coming weeks!