Tag Archives: fun

Super Saturday

Rarely do I post twice in one day, but today has been amazing! Braxton tried to WALK today!! And he played catch with me!!

He’s been taking a few steps holding our hands, but today he walked about 20 feet with me!! We caught him a little bit later on video:

So incredibly exciting!

And if that wasn’t enough, Braxton sat with me for a good 30 minutes rolling a ball back and forth. He just laughed and laughed the entire time! Dad caught us playing a little bit:

 

Moments like these are so incredibly precious to me.  For a long time, we thought moments like this would never happen, so to finally see such progress is so amazing.

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Bittersweet Memories

Today, we had the opportunity to re-visit the place where this journey all began. St. David’s Hospital held it’s annual Neonatal Intensive Care Unit (NICU) Reunion and this is the second year I’ve been lucky enough to take Braxton back to visit.  It’s nice to celebrate and see other families and their success after having spent time in NICU.  But there seems to be a flood of emotions for me that comes with this wonderful event. Most babies who spend time in NICU are there because they were born prematurely, but not Braxton. Braxton was full term and at 8 pounds, he was a giant compared to the other NICU babies.  We felt out of place from the start. We were NOT supposed to be here. This is NOT how the story was supposed to go.  Day after day we walked by the teeny tiny fit in the palm of your hands babies to visit our 8 pound 21 inch long baby boy who no one could give a definitive answer as to why he was being kept, and yet just like the teeny tiny babies, he was fighting for his life.

Braxton was in NICU for 3 weeks and 3 days, definitely the toughest 3 weeks and 3 days of our lives.  The initial neonatologist who admitted Brax was convinced Braxton had a terrible genetic syndrome that would quickly end his life, from that day on Braxton has been defying all expectations and continues to stump the medical community.  We are now 16 months into this journey and still know nothing more than we did those first few weeks of life.  As I look back to those first weeks, I remember all of the nurses who worked with us and cared and loved Braxton so much.  The nurses were amazing.  My first night released from the hospital, we drove to the hospital where Braxton had been transported to and sat there for several hours and the nurse in charge of Braxton that night was so patient and empathetic. She answered all our questions as best she could, offered us advice and encouragement with stories of other babies who’d come and go in the NICU.  She helped me get through all the wires so that for the first time in 36 hours I could hold my precious baby boy. We laughed as we watched Joseph try to change Braxton for the first time. Poor guy was terrified of all the wires and used about 10 wipes for his first ever diaper change.  I cried as I held Braxton because I had no idea what the future would hold for him.  We finally left and went home to try to get some rest before we’d come back to see our baby boy.  This was our life for 3 weeks. Wake up, eat, get dressed go to the hospital, come home to be with Aileen, try to explain to her why she couldn’t go see her brother, try to love on her and make sure she knew we hadn’t forgotten her, then back to the hospital to visit and say goodnight to little man, home to bed to wake up and do it all over again.

Every day we went to the hospital and as our nurses changed, I was happy to see Braxton in such capable hands.  They all knew what was going on with him, if the doctor came by while we weren’t there they’d call and update us, they listened, they talked, they cared.  I’m so thankful for all of them.  While NICU holds many sad memories of what might have been, what could have been, I’m also reminded that they did everything they could to make sure Braxton stayed alive.  And I don’t think we ever thanked them enough.  I’m fortunate to be able to see them again and catch them up on what Braxton has been going through and to be able to thank them again for doing so well with him.  Bittersweet. So many memories, so many emotions, and so many blessings.

The event was really great. This year, Aileen was able to go with us and she definitely had more fun than Braxton, but that’s ok.  The kids were able to wear costumes so that was pretty fun.  I put Braxton in some Longhorn PJ’s that happened to have a Bevo hood, so he was Bevo 🙂 Aileen wore her vampire princess costume and thoroughly enjoyed all the goodies they had, cotton candy, games, face painting, balloon animals, and cake.  I saw a few of the nurses who worked with Braxton and they were all happy to see him doing so well.  Albeit emotional, today was a great day and I’m so grateful that St. David’s puts on this event and I look forward to next year and every year after.

Bevo Braxton

Where’s Braxton?!

Bevo Crawling

Bevo Braxton crawling through the living room

Bevo Braxton

Braxton crawling around

Bevo Stampede

Bevo stampeding through the house!

Face Painting

Aileen had her face painted at the NICU Reunion for her baby brother

 

// Edited to add this photo courtesy of St. David’s 🙂

NICU Reunion

Having fun at the NICU Reunion

 

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Pumpkin Carving Adventures

So last night we finally decided to carve up some pumpkins! I can never get the darn things to keep more than a week so I save the carving for just before Halloween. The kids had so much fun! Aileen and Braxton helped scoop out the “guts” and then Joseph and I carved the designs Aileen picked out. I did also buy a Glow-in-the-Dark painting kit so Aileen could paint a pumpkin, it’s still a work in progress.

Braxton enjoyed crawling around us and using the pumpkin as a teether. Poor kiddo has a mouth full of teeth trying to come through and he’s chewing on everything! Three teeth FINALLY broke through in the past couple weeks, but his gums are still swollen 😦 Anywho, it was fun to have him nearby and engaged. He didn’t seem to mind having his hand in the pumpkin guts either. He played in it a little, but when he started shaking it around mom decided he was done haha Sorry, but we have enough bugs trying to get in, I don’t want pumpkin attracting anything else! (Side Note: I could never truly live in the country. Kyle is just outside Austin and is semi-country so there are a ton of bugs and spiders crawling around. I could only imagine true country living. Gives me the heebie jeebies!! Ick!)

Here’s a look at our pumpkin carving adventure.

P.S. I’m obsessed with collages (if you couldn’t tell) – Photogrid app for iPhone and Android 😉

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Sunday Funday!

The rain ALMOST spoiled our plans for today. It was pouring down rain this morning and I came pretty close to staying home instead of going to Church like I wanted.  Seems like there’s always something holding me back, so I made the choice to go despite the rain. Besides, a little rain never hurt anyone, right?

Well, I am SO thankful I went! We went to PromiseLand Church in San Marcos just down the road from us.  Joseph and I have been talking about going back to Church and with the move we finally decided now was the time. I spent some time researching churches nearby and found one we could try. Then, I remembered one of my very good friends had mentioned the Church she goes to now had a location South. When I learned it was in San Marcos, I visited the website and stumbled across the link for a blog the pastor set up for his special needs daughter, Made Meaningful. I read just about every post and the tears just kept streaming. I was so moved and so inspired, I knew this is the connection we needed to help us through this journey.  As I mentioned in a previous blog [He qualifies the called], Joseph and I wholeheartedly believe God has been present in our lives since Braxton’s birth. It’s high time for us to re-connect with Him and thank Him for the many blessings bestowed upon us.

Got up, got dressed, got the kids dressed and off we went. The music was great, the sermon was great, the people were great. Aileen went to a class with other kids and Braxton stayed with me in Church. He did really well. Actually, fell asleep about halfway through. Lots of people stopped to comment on Braxton and how cute he was [it’s the eyelashes I tell ya. He’s gonna be a heartbreaker.] When I went to get Aileen from class, I noticed a sign…”Special Needs” above a classroom in the student center. I peeked in and saw the pastor’s wife and daughter. I was thrilled. Thrilled that a Church actually had a designated area for special needs children and thrilled to have the chance to speak to the pastor’s wife, Erica. As I told her how we found the Church and their story and told her about Braxton and our story, something just broke inside me and tears just started rolling. I have no idea why, but I just cried. I pulled myself together and spoke with her for a minute  and met their 3 children and then we went back over to the Church to meet her husband, Pastor Robin.  They are such nice people and I really look forward to  being a part of the church and getting to know them and everyone there!

After Church, I promised to take Aileen to a fishing event, and it was so fun! It was sponsored by Core Health Alliance and they were raising money to actually build an accessible fishing pier on Lady Bird Lake to make fishing accessible for all. They had several community booths set up for information on making homes accessible and other fun things like Frozen yogurt stands, taco stand, local radio station booth, and of course an area for fishing. They had a large pool set up with catfish and allowed kids to try and catch the fish and then release them back in to the pool. Poor Aileen, it took FOR-EV-ERRRR!!! But, she finally caught a fish! She was so excited. Once the kids caught a fish there was a booth set up to give out fishing trophies and free fishing poles. You would have thought Aileen won a true fishing tournament. She was extremely excited to get a little ol’ plastic fish trophy.  She had so much fun and to see her eyes light up with excitement really made it all worth it.  It’s amazing how we as adults forget to be thankful for the little things.

Overall, it’s been a GREAT day! We’ve had so much fun this weekend! Now, to prepare for the week. Aileen has to get ready for school tomorrow and Braxton has a few appointments this week. Tomorrow we see GI to finally get the results from the Gastric Emptying Scan and hopefully some more answers as to why Brax isn’t eating. Wednesday we follow up with the ENT to check on Braxton’s ear tubes and then we see the Orthopedic doctor for the first time to rule out any hip/spine issues that could cause any issues later on.  Check back for updates and hope you all have a great week too!! 🙂

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Fun Times Ahead!

Good Morning and Happy Saturday!!! Fun-filled weekend planned for myself and the kiddos. Dad is working, so it’s just us.

Today, we will be attending a luncheon with U.R. Our Hope at Iron Cactus – yum! – Since I’ve finally worked up the courage to share Braxton’s story, I figure it’s time now to start getting more involved with organizations for special needs children or kids with rare/undiagnosed syndromes like Braxton. I think all this time worrying about Braxton, I didn’t realize MY own NEED to find people who can empathize and know exactly what it’s like to be in our shoes. “You waited HOW LONG to see that Dr?” “OMG, Me TOO!!” I didn’t realize how important those conversations are to help me through my frustrations. I’m very excited to start paying it forward and finding more ways to be involved. 🙂

Then, as you know, mom is a UT graduate so there’s this little ol’ rivalry game today, so after the luncheon we’re rushing home to catch the rest of the game. Hook ’em Horns! \\m// hehe

Tomorrow, I am planning to take the kiddos to check out a new Church since we’ve moved. I did a little research and turns out the pastor of that church has a daughter with special needs [I believe she has a form of hydrocephalus – water on the brain] so again, I think it will be good for us to find some additional guidance through our journey from people who have shared our experiences. Looking forward to it!

After Church, I found out about an event close to downtown Austin for special needs kids. There will be fishing in Lady Bird Lake and other games/entertainment. Hoping it doesn’t rain so I can take the kids!

Probably will be pretty exhausting, but should be tons of FUN for the kids and I – and that is totally worth it! 🙂

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