Tag Archives: siblings

Happy Tubie-versary!

Today marks 3 years since Braxton’s very first surgery, which was to place his G-tube.  Braxton was just 2 weeks old and still in NICU when it was placed.  You can read all about the Day Braxton Became a Super Tubie from last year’s post.

We have come a very long way in 3 years.  I still remember everything about the day we were told he would need a tube and the day of surgery. When his button was first placed, we honestly had no idea how long Braxton would need his tube and the doctors could not provide anything other telling us he would need to have it “long-term.” We have had many struggles with eating over the past few years and we are very grateful that Braxton has had his tube all this time.  His tube has allowed us to feed him even when he is sick, give him medicine when needed, and make sure he gets the nutrition he needs to gain weight in a healthy manner.

Braxton climbing in to his chair getting ready to eat!

Braxton climbing in to his chair getting ready to eat!

Braxton is finally eating by mouth, something we weren’t sure if he’d ever really be able to do.  He is eating about 30-40 ounces of pureed foods every day! He gets about 1100-1300 calories per day and we supplement with a multi-vitamin to make sure he is getting everything he needs nutrition wise.  We haven’t had to use his tube for food in quite some time, which is a magnificent feat! Braxton even tells us when he is hungry now, which is HUGE for a tube-fed child! Because children with feeding tubes are usually kept on such a strict schedule, they do not know or understand what it means to be hungry.  Braxton still does not speak, but he will “tell us” he is hungry by going over to his feeding chair, climbing in, and he will sit there until we notice him. If it’s not quite fast enough for him he will start to whine/cry to let us know “hey! I’m really hungry over here!” He’s eating every 2-3 hours right now and his schedule was every 4 hours before, so he is really understanding what food is and what it means to be hungry. He truly enjoys eating now, and that is fantastic!

We still use Braxton’s tube for fluids because he isn’t quite drinking anything by mouth yet.  We have been working on straw drinking in therapy and he has drank up to an ounce! We’re working on different flavors and increasing that volume.

So, we truly know now that Braxton will not need his tube forever, but it’s still not going to be taken out soon.  We want Braxton to be fully drinking on his own and eating “table food” before we remove his tube.  We are making significant strides in the right direction.

Braxton, Super Tubie!

Braxton, Super Tubie!

The other day, I saw a post on the Feeding Tube Awareness Foundation’s website about an interview with siblings of children who are tube-fed and found their perspective very interesting! Since special needs and things like tube-feeding really effect the whole family, the FTA group brought in this sibling perspective.  This inspired me to talk to Aileen about her brother’s tube and see what she knew and what she thought about his g-tube.  I recorded the conversation and thought it would be great to share in honor of his tubie-versary!

Enjoy!

 

 

 

 

 

 

2 Comments

Filed under Family, Kids and Family, Life, Special Needs Child

Siblings Have special Needs Too!

This is copied over directly from Big Sister’s Site – I felt it was important enough to cross-post the entire entry.

Big Sister, Aileen

Big Sister, Aileen

 

 

Aileen: “Mom, Why didn’t you tell me?”

Me: “Tell you what?”

Aileen: “Why didn’t you tell me that when you had Braxton, you wouldn’t spend any more time with me?”

 

 

 

Ugh. Talk about a punch to the gut. Or a slap to the face. Or anything else you can think of that’s incredibly painful. I’m already hard on myself as a mother, but when your almost 7 year old says this out of nowhere, you sink to an especially low place.

I don’t at all think that I’m a bad mom, nor do I think I’m perfect (obviously). I’m only human, and we all make mistakes.

This conversation happened last week, and up until then, everything had been going great.  We had been struggling with Aileen acting out because she felt left out of the picture with all of Braxton’s issues, so we truly made a concerted effort to REALLY involve her more.  I signed her up for T-Ball even though I had no idea how I would fit it in, and so far it was definitely a great decision.  I try really hard to give Aileen my complete, undivided attention when brother is sleeping.  I make a HUGE deal out of her accomplishments and all the things she gets to do that little brother doesn’t get to do.  And still, she hit me with this.

Really, what it comes down to, is Aileen is only 6 and doesn’t truly understand that I’m not “ignoring” her on purpose.  It’s also the “nature of the beast.” The feeling of being the forgotten child is almost inevitable when you have a “typical” child and a child with complex medical needs.   As parents, we fail to see that BOTH kids actually have special needs.  Braxton has all of his medical needs and Aileen has a need to feel important and special in any way possible.  It’s easy to become consumed in the constant string of appointments and therapies and phone calls to this doctor or that doctor and our poor “typical” kid is left to fend for themselves because we think “Oh, they can take care of their self, they don’t NEED me like my other kid does.” But, the fact of the matter is they do.

Siblings have an overwhelming need to feel appreciated and recognized.  It’s easy to get lost in the shuffle, so parents have to make a true effort to remind them, they too are special and wanted and loved.  Sure, it’s silly to say that, but to a 6 year old, they NEED to hear that. Even if you had 2 perfectly healthy kids, the older child still needs reinforcement that mommy and daddy don’t love her any less than they did when it was just her and no baby around.

This is all still new to me, and I’m learning everything as I go.  There is definitely no manual, but here are some of the things I’ve learned from Aileen about recognizing the special needs of siblings:

  • Dedicated time without siblings – it’s important to take time out of each day to sit with your child and give them your undivided attention.  Schedule 15 minutes a day (or longer if you can). Maybe right when they come home from school to talk about their day and just hang out. Maybe before bedtime to talk about the day and read an extra bedtime story. Make sure the other sibling is in bed or taking a nap so your sibling child has your full attention.
  • Mommy/Daddy Dates – Make a date with your child! Yes, a date! Arrange childcare for the other child and take your kiddo out somewhere special where it’s just you and them. The park, a picnic, a movie, out to eat – let them choose!
  • Extracurricular Activities – Sign your kid up for a sport, dance class, gymnastics, anything at all! I wasted too much time thinking well we don’t have time for ___ because Braxton has this or that. Or caught myself telling Aileen we couldn’t do something because of Braxton. Well, naturally there would be resentment there if it’s HIS fault she can’t do something.  I try really hard to avoid phrases like that now so she doesn’t resent him.
  • Involve them! – This one is easy to forget. Siblings usually take great pride in being “big helpers,” so let them! Ask your therapists to include them in a session or ask your therapist to teach your sibling a special exercise that he/she is responsible for making sure little brother/sister does everyday.
  • Praise, Praise, and More Praise – Always, always, always praise your child for doing something great. Whether it’s helping you out with their sibling or doing great in school.  Do not forget to celebrate their accomplishments too! We also make a big deal out of getting to go spend the weekend with grandma. Brother doesn’t always get to go because he has appts or needs special care, so it makes Aileen feel extra special when she gets to do something cool without her brother.
  • SibShops – This is one I’ve looked in to, but haven’t been able to do. SibShops are special workshops for siblings of children with special needs.  They allow kids to meet other siblings so they can share their feelings about special needs and anything else on their mind.  The workshops have lots of activities to help support siblings and foster relationships between one another. Most of the ones I’ve found say they start at age 8, so it may be a while before I get Aileen in on one, but I’m for sure going to do it.
  • Pen Pal – This is something I literally JUST signed up for.  A couple of teens who each have a sibling with Rubinstein-Taybi Syndrome (which is what Braxton has) have been Pen Pals for years and have become great friends. So much so, that the young man’s parents allowed him to fly down to Texas (from Massachusetts) to escort his pen pal to prom. How cool is that?! Well, they decided to take it upon themselves to create a system of assigning Pen Pals for siblings of kiddos with RTS. I asked Aileen if she would be interested and she was so excited, so I sent over her info.  She was matched up with a little girl in California, so we are now anxiously awaiting that first letter! I can’t wait to see how this turns out.
  • Cards for Siblings – Another thing I JUST signed up for! I found Alayah’s Cards 4 Siblings on facebook. A few moms got together after one of their daughter’s started feeling left out that her brother was constantly getting attention and receiving so many gifts.  Their goal is to send the siblings something to make them feel special too!  A card on their birthday, a letter every so often to remind them of what a great big sister/brother they are, just something simple.  And I know that that small gesture can go a long way.  Please visit their page and consider sending them donations of cards and other supplies!
I constantly have a camera on Braxton, so every once in a while Aileen gets the spotlight too, and she totally hams it up

I constantly have a camera on Braxton, so every once in a while Aileen gets the spotlight too, and she totally hams it up

Trust me, I do NOT have this all figured out.  Even doing all of the above, I still hear the occasional “you  love baby brother more than me” and it stings a little bit more each and every time and sends me in to a ball of tears.  In the past few months, I’ve really put forth an extra effort to do all the things I know to do, and we have seen an improvement in Aileen’s behavior and attitude at home, which is fantastic! We still have some rough days, but I will keep learning from Aileen as we continue on this journey together.

If you have any genius ideas, I’d love to hear them! I’m willing to try anything! Share them with me in the comments.

5 Comments

Filed under Family, Kids and Family, Life, Special Needs Child

My Sister is Awesome!

A few weeks ago, I started a second blog for Braxton’s sister, Aileen.  Partially to help curb some of the behavior problems we’ve had recently due to some sibling jealousy(brother has a site, why can’t I), and partially because she’s completely awesome and hilarious and I wanted to post many of her stories, but they didn’t have a place here…now they do! 🙂 You can visit her over at According to Aileen: Life Lessons From My Daughter – Here are a couple posts you should read to see what an amazing sister she is 🙂

World’s Best Big Sister – Aileen playing with Braxton and her deciding to be an advocate for tube feeding without any prompting from mom 🙂

Faith, Hope, and Love  – Our weekend of fun

I know I’ve mentioned it before on this blog that Aileen has been really great with Braxton.  It continues to get better as Braxton gets older and is able to do more with her.  Braxton really enjoys playing with his sister now.  Aileen took over his Sit ‘N Spin yesterday, and as she spun around and made crazy sounds he watched and just laughed and laughed.  We all played catch together, and Aileen played alone with him and let him crawl over her and even helped him work on climbing up the stairs.

This past week was Spring break for Aileen, and Braxton got to join in on some Spring break fun.  We took Aileen to a Jumpy Place and let Braxton sit in a bouncy house while Aileen jumped.   He laughed as she bounced him, but wasn’t too sure what to do, so he just sat in the same place, but it was fun to see them together.  Yesterday, the kids played together and we went to the store to buy some clothes to wear to Church for St. Patrick’s Day and bought a couple movies too.  It’s been a fun weekend 🙂 Now to prepare for the back to school week ahead.

Picture overload of my two little loves enjoying each other:

2 Comments

Filed under Family, Kids and Family, Life

Moments We Live For

As a parent, it’s usually a constant battle to get your kids to get along, but in the rare moments that they do, it’s absolute heart-warming bliss! The moments may be far and few between, but I know that every parent lives for these moments and carry them with us always.  Aileen and Braxton are just now truly beginning to interact with one another and it’s so awesome to finally get to see that.  Braxton’s developmental delay is about 4-5 months and with his hearing loss he isn’t speaking very much at all so when big sister tries to talk to him or play with him he doesn’t react all the time.  In the last couple of weeks he’s responding to her much better.  Aileen can play with a toy with him or make silly noises and he’ll just laugh and laugh…truly the sweetest sound ever. And now that he’s crawling she can really get down and play with him and let him chase her around. So fun!

The kids and Me

Mommy and her two little loves ❤

Last night was one of those fortunate nights.  🙂 I had the kids in my bedroom watching a movie before bed, Aileen and Braxton were just in their own little world.  At one point Aileen had Braxton COMPLETELY busting up in laughter. Thank goodness for technology! Gone are the days you have to hunt down a video camera and by the time you find it the moment has passed…whipped out my phone and captured several videos of Aileen getting Braxton to laugh. Good belly laughs too! Edited them together for a video that’s sure to put a smile on your face!!

Enjoy! 😀

And then they fell asleep…

Sleepy Heads

Worn out after playing together

1 Comment

Filed under Family, Kids and Family, Life, Special Needs Child

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

 

Leave a comment

Filed under Family, Kids and Family, Life, Special Needs Child