May 22, 2013 · 9:30 am

The Waiting Game…Again

I’ve always said that patience is a virtue I don’t have…but apparently someone begs to differ. Here we are waiting, yet again, in the surgery center of Dell Children’s Hospital. We’ve been here too many times. If you missed the last post, Braxton isn’t having surgery, but he is having several imaging studies that required him to be put completely under so it had to be done in the surgery center.

We arrived at 6:15 am, checked in and did all the registration stuff and did the first round of waiting for a nurse to take us back.

A clinical assistant took us back around 7:30 to get weight and vitals. Braxton is 28.4 pounds! o_O That explains my mom muscles ;)

Braxton's "Let get this show on the road" face

Braxton’s “Let get this show on the road” face

The radiology tech came in at about 8:00 to go over the tests being done today. He’s having an MRI of the Brain and full spine (which is actually 3 separate MRIs). He told us this part would take about 2 hours in addition to the time for anesthesia to take him back and put him under, place a breathing tube and IV. He’ll have his EEG after the MRIs

The anesthesiologist came in soon after to go over putting him under and to discuss his health history and all that good stuff. And then we waited some more.

A nurse finally came in and said they were ready, but waiting on the ophthalmologist because she had to do an exam and sign off before they put him to sleep. Somehow the doctor didn’t get the memo. They ended up calling her and she reported it would be at least an hour before she could get here. Instead of making us wait, she just cancelled. *sigh* I was actually looking forward to her part because I’m hoping his tear ducts are big enough now for something to be done to help. Unfortunately, that will need to be rescheduled. Another unfortunate part is that we will be back in August sooo she’ll just get moved over a few months.

Finally, after speaking to all the nurses and doctors they took Brax back a little after 8:30 to get started.

And he's off... :(

And he’s off… :(

Soooo, now here we are…waiting….yet again. If all goes well, we should see him again in about 3 hours. Maybe longer depending on how long the EEG takes. Thank you all for the prayers and well wishes, we will update as we get more information.

Trying to eat daddy’s nose
Braxton kept roaring like a tiger while we waited

 

// UPDATE //

Well, I thought I’d more updates throughout the morning, but they didn’t call me after each procedure like they normally do.  It was about noon that they finally paged us and took us back to a recovery room to see Braxton.  As we arrived, the tech was taking off the EEG headwrap and electrodes and Brax was crying. I saw his paci at the foot of the bed and gave it to him and he calmed right down and went back to sleep.

Braxton in Recovery Room

Braxton in Recovery Room

The nurse let us know how he did during the studies and let us know there were no issues with anesthesia.  We waited in recovery for a few minutes and then they took us over to a room for further monitoring.

Going to post-op room

Going to post-op room

The nurse came in and checked vitals again. They gave us discharge instructions and told us the reports would be sent to our doctors within a few days, so we could get them early next week. We tried to give Brax a little Pedialyte just to see if he was too nauseous from the anesthesia and to see if he would keep it down.  Thankfully he did.  The nurse removed his IV and told us we were free to go.

Rockin' the "wet" look courtesy of the EEG goo

Rockin’ the “wet” look courtesy of the EEG goo

 

We are at home now and I thought for sure Brax would want to take a nap, but apparently that’s just mom.  He is crawling around and playing like his normal self.  He does sound a little hoarse from being intubated, but he’s doing great.   Working on feeding him now, but only half a normal feed for now, just to be sure.  I should be able to give him a full feed later today…poor kid, I’m sure he’s starving.

 

Thank you all again for your prayers and well wishes!

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· 12:27 am

A Big Day Ahead

Well, tomorrow….actually, in just a few hours we are scheduled to be at Dell Children’s Hospital, and naturally I can’t sleep.

Thankfully, Braxton is not having any invasive procedures or major surgery, but he will be under anesthesia and anytime that’s necessary I’m more than worried.

Before we had a diagnosis, we saw our neurologist who decided Braxton needed an updated MRI of the brain and an EEG. He originally schedule the EEG in office, but they decided it would be easier to do both procedures at once and turned it over to the hospital.

Then, we had our appointment with the geneticist which gave us a diagnosis. At that appointment we discussed somewhat “the next steps.” We discussed some of the signs and symptoms that are common to Rubinstein-Taybi that had not yet been found in Braxton. One such symptom was a tethered cord or other abnormality of the spine. From previous visits with our Orthopedist, we knew Braxton had a mild form of scoliosis, but the doctor was unable to tell if there were any vertebrae missing or pieces of vertebrae missing. An x-ray also does not show the actual spinal cord to see if it was abnormal. Therefore, the geneticist told me I should call and let the orthopedist know our new diagnosis and that Braxton may be at risk for these things. Our Orthopedist decided to err on the side of caution and said an MRI of the full spine was necessary. Thankfully, we were able to get that scheduled at the same time as the EEG and Brain MRI.

I also called our Ophthalmologist, because she mentioned that if Braxton happened to go in for any imaging or procedures, that she could possibly check his tear ducts again to see if they have grown enough for her to be able to probe them or insert silicone tubes (NOT the glass tubes I mentioned recently). She was also able to coordinate her schedule and will be seeing Braxton tomorrow after his MRIs are done. It’s a very quick procedure and he may have some discomfort after, but he did ok the last time he had this done, so I anticipate no complications.

So, why can’t you sleep, mom? Well, because I’m a mom. And we worry. All the time. Seriously. All the time.

Also, because I have strict guidelines to follow regarding feeding times. Since Braxton has to be under anesthesia, I have to cut off food and liquids at a specific time so he doesn’t have any reaction to the anesthesia or throw up while he is under. I’ve already given him his last formula feed for the night. He is allowed clear liquids until 3 am so I’m staying up to give him some Pedialyte so he won’t be dehydrated from not being able to eat until sometime tomorrow afternoon. If I fall asleep, there’s no waking me up in 2 hours and then I’ll feel terrible about it in the morning. Then we have to be up at 5 to be at the hospital by 6. I figure that I will be sitting around waiting for 4 hours tomorrow, I can sleep then. Ha! Who am I kidding, I won’t sleep at the hospital either. For now, I’ll watch my little man as he sleeps ever so peacefully. I will definitely update again tomorrow (later today) as we work through all the different procedures.

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May 21, 2013 · 10:40 am

Typical, Yet Far From Typical

Big Good Morning Smile from Brax

Big Good Morning Smile from Brax

Here lately, Braxton has made some significant progress.  As he is getting older, he is “catching up” on some things, yet far behind in others.  I catch myself thinking, yup that’s what a toddler is SUPPOSED to be doing.  Or saying things like, boy it’s like we have a real toddler around here! (Obviously, he’s real, but he’s not at all been a typical toddler until recently) Braxton will be 2 years old next month (I can’t believe it!), but developmentally, he is still at about 10-11 months I’d say.  For instance, he is crawling fantastically and pulling up to stand and trying to cruise, which is typical for a 9 – 10 month old.  Once he really starts walking, I’m certain he will make so much more progress.  He’s getting pretty good. Here he is during a Physical therapy session doing some assisted walking…he took 30 steps while I was there for the tail end of the session.

Toys all around him.

Toys all around him.

Braxton is also doing really great with exploring his environment.  One minute he’s at the patio door and the next he’s in his therapy room with all the toys in the middle of the floor.  Yup, typical toddler leaving a path of destruction behind him.  For a long time, Braxton just sat next to us, slept, and pretty much did nothing. We’d play with him and there was no registered emotion.  Now, I walk in to a room and he’s pulled toys off the shelf, emptied toy bins, and crawling over to another toy and playing all on his own.  When we sit and play with him, he is actually quite interactive and will laugh and smile the whole time.  Especially when sister plays with him. He likes to pretend to knock her over and when she exaggerates the fall, he thinks it’s hilarious.  The sound of laughter fills my home and heart.

Are you talking to me?

Are you talking to me?

Braxton now also knows his name.  Just one other thing we don’t realize actually has to be learned.  I would call him all day long and get nothing in return. But a toy goes off and his head whips around. At first, I figured he was being a typical toddler by ignoring mom and only paying attention to cool toys, but it’s just taken some time for him to learn we’re talking to him and not the wall.  In the past couple weeks, I have called his name and he turns around with a big smile on his face. Or if he’s across the room, he turns around, sees me, smiles real big, and crawls as fast as he can over to me.  It’s the sweetest thing, but it’s been a long time coming.  I never thought it’d be almost 2 years before he understood much of anything.  He knows his name now, and that’s huge.

Another typical toddler thing he’s doing is dropping things on purpose and then crying dramatically to sucker mom into picking him up.  I have sat and watched him literally stick his pacifier over the edge of the play pen, swing it around, and then throw it.  He then stares at it, and then goes in to full on crocodile tears and drops to the floor just to make sure mom knows he’s really upset.  I just laugh.

Braxton is doing so well and I just love watching him develop.  Each and every accomplishment is celebrated in our home.  I am often so overwhelmed with joy that I just cry thinking of all the things he is doing that no one ever thought he’d do.  I’ve read the reports, I’ve talked to our therapists..they were all really worried at first, and so were we. And now, we all rejoice with his progress.  He never ceases to amaze us with his courage and determination.  Some days, in some moments, he’s just like any other typical toddler, although in reality he is behind and  so far from typical.  One thing is for sure, he is one extraordinary little boy who is going to continue to defy the odds and surprise us all.

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May 15, 2013 · 11:42 am

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.

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May 12, 2013 · 3:43 pm

A Special Mother's Day Gift

Reblogged from According to Aileen:

  • Click to visit the original post
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"The moment a child is born, the mother is also born. She never existed before. The woman existed, but the mother, never. A mother is something absolutely new."

I have been so blessed with 2 incredible kids. Aileen will be 7 and Braxton will be 2 next month. There are plenty of hard times, but the good times always, always outweigh the bad.  

Read more… 151 more words

Happy Mother's Day to all of my fellow mommy friends! Here is the post I wrote over on sisters blog along with video of her reading a book she wrote for me. Braxton may not say much, but his sister says plenty for the both of them. I am so blessed and incredibly loved by these amazing kids. Braxton tells me he loves me in his own special way, and while I long for the words, I'm content with simply knowing what's in his heart for me.

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May 9, 2013 · 8:39 pm

Whatever It Takes

At the beginning of the year, I really started worrying about communicating with Braxton.  At 18 months he had zero words and really no way of communicating with us.  I decided then that I really wanted us to learn sign language because we weren’t certain if Braxton would always be non-verbal.  I took a class in high school and I did baby sign language with Aileen and watched “Signing Time,” but unfortunately a lot of it didn’t stick with me since we were also speaking and didn’t really NEED to sign.  I began talking to our Auditory (AI) therapist who sees us in home a few times a month.  Then, we met with our early intervention coordinator and ended up increasing our monthly visits with AI so she now comes once a week to meet with us.  She mostly plays with Braxton to help us learn how he is communicating and she signs constantly while they are playing, so we asked her to help us learn.

Not too long after, we learned that one of the other Auditory therapists was planning on teaching a sign language class and it would be open to parents and other educators. [She was also going to be doing this completely VOLUNTARILY! I'm always thrilled when I learn people are so willing to give of themselves for something they are so passionate about regardless of compensation.  I'm so grateful to the woman teaching and the educators going the extra mile to come to class - after all, they are the ones who will be working with Braxton when he goes to school. This is great for a mom to see! It's scary to think about putting Braxton in public school at 3 years old, but when I see that the people who will be working with him are genuinely invested in the kids, it puts my mind at ease.] Anywho…We started the class in Mid-March and we only have a few classes left now.  I have learned so much and am truly surprised by the amount I have retained.  Now that we know Braxton will most likely NEED sign language, I’m glad my mommy intuition made me want to learn and that we asked for more visits and resources. Aileen is even learning with us! She thinks it’s very cool to learn and is always excited to show off her skills.  Here is a video after our first class of Aileen:

She’s gotten a lot better and actively asks questions and tries to fingerspell which is fantastic! She’s truly the best big sister ever!

Through the class, we are learning Signing Exact English (SEE).  SEE differs from American Sign Language (ASL) in that it is an exact representation of the English language, so there are signs for different tenses and different pre- & suf- fixes.  It was explained to us that SEE is beneficial to a child because when they learn to read and write they will be able to read/write the exact way they have been signing because they have a grasp on grammar and syntax of spoken English.  ASL is a language in and of itself, and it has it’s own rules about grammar and syntax so when it is written out, it doesn’t translate exactly, which can confuse students.

Our hope is that Braxton does learn to have some verbal language, but if he doesn’t, we want him to be able to express himself.  We are also open to him using Alternative and Augmentative Communication (AAC) which is communicating through a technological device.  This can be an iPad or some other “talker” device. There are so many options and apps out there today, so it is no easy choice.  We are working very closely with our Speech Therapist and when Braxton is ready, we will try out different apps and devices to find what works best for him. For now, we are using an iPad with him just so he is familiar with it.  He is getting a lot better at handling it and actually touching the screen with his hand instead of using his head or trying to eat the iPad instead! A few of his therapists even use them with him during their sessions.

Braxton “reading” a story on the iPad
Braxton touching the screen to move on to the next page
Braxton watching the story
Braxton using an iPad in therapy
More iPad in therapy

We are willing to do whatever it takes to help Braxton be successful.  Sign language, picture cards, Communication devices, anything and everything available.  Braxton is definitely finding ways to communicate with us now, and while he still doesn’t have any words, we are learning his cues. We have learned so much already on this journey, not just about all of Braxton’s medical issues, but also more about ourselves.  We’ve learned how strong we can be and how to be better parents for Braxton.  We look forward to the road ahead – Braxton is going to continue to surprise us all.

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May 2, 2013 · 10:06 am

Full of Gratitude

We are now 2 weeks post-diagnosis.

Most parents will see life as life-before-kids and life-after-kids, and to some extent, we do too. But, for now, we’re definitely seeing life as life-before-diagnosis and life-after-diagnosis.

While nothing has physically changed, our mind state seems to have shifted.  2 weeks ago, our diagnosis was met with trepidation.  We were still uncertain about what the future held for our son, and sure, I still don’t really know, but I’m much more hopeful than I was in life-before-diagnosis.

2 weeks ago, the only people I knew with any relation at all to Rubinstein-Taybi Syndrome (RTS) were the few people who had contacted me via our blog to ask if Braxton had been tested for it.  When we received our diagnosis, I contacted each of them and told them their hunch was right and thanked them for bringing it to my attention.  That day that I wrote about our diagnosis and the new journey that lie ahead, someone commented on the post and told me they passed the blog on to a friend and that friend in turn contacted me and told me she knew several people with RTS.

Just 3 days later, she added me on Facebook and posted a status welcoming us in to the RTS family, and within a few hours I had new messages and friend requests from SEVERAL other people who had children or family members with RTS all willing to reach out and connect with me.  And just like that, I was hooked in to a fantastic support network with people all over the world ready and willing to walk with us on this journey.  Within a few days I have personally added and talked to 42 individuals who have some experience with RTS on one level or another.  I also found a Facebook Group with over 600 members.

I am repeatedly amazed at the advancements technology has made.  10 years ago, I would not have imagined getting “connected” so quickly.  I seriously don’t know how I would have handled this journey without technology.  The ability to reach out to others, write about life, instantly connect with people who share my experiences, is to some degree unfathomable…yet, here we are, and that’s exactly what has happened.

I’ve spent the past couple weeks researching and taking in as much information as I can.  Memorizing the stats and characteristics and probabilities of this, that, and the other, not because I believe those figures completely describe my son, but because I now I have a new responsibility to educate others and create awareness.  Rubinstein-Taybi Syndrome is pretty uncommon and almost none of our physicians know anything about it.  It’s now my job to tell them what I know based on research, and Braxton’s job to teach them the reality.

The reality is that most of the research is outdated.  The prognosis seems so grim from the research available, but I’ve learned from REAL people that the possibilities are endless.  Every child continues to write their own story, and I have no doubt Braxton will do the same.

Individuals with RTS are supposed to be almost completely non-verbal. I’ve spoken to parents who say their kid will talk your ear off.  And parents who say their child doesn’t have many words, but they are excellent with sign language or a communication device. Non-verbal? You’d never know that spending one afternoon with Braxton.  He has been babbling like crazy in the past few weeks.

You’d be surprised to learn that many of the children with RTS have a passion for “typical” activities.  I’ve spoken to parents who have children who are playing baseball, swimming, running, wrestling, cheerleading…things you’d never guess if you just took the research as fact.

One thing I’ve confirmed is that the feeding difficulties usually DO resolve.  Many of the parents I’ve talked to say their child did not need a feeding tube forever.  Most say by 5 or 6 their child was eating very well.  Braxton is making strides toward that goal, and I’m certain he will be a great eater in his own time.

I’ve also learned that Braxton’s lovable social nature will never go away.  I see pictures of 13 year old boys still willingly sitting on mom’s lap, content with mom’s hugs and kisses and my heart smiles knowing that I’ll still be able to hold him close as he grows older.

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Making monkey sounds with mommy is hilarious

I’ve also ‘met’ a woman who is in her 30s and living completely on her own.

Are these things true for all children? Probably not.  Experiences vary greatly, but it’s nice to know it’s not as scary as the research makes it out to be.

Are there still hard times ahead? Absolutely.  The lifelong battles Braxton will have to face aren’t going anywhere.

The good thing is we are already monitoring everything that may present challenges, so we are proactively preparing.  Some days will still be more difficult than others.  Again, not every day is good, but there is something good in every day.  And for the days that aren’t so good, I hold on to hope.  I remind myself of these positive experiences of other families.  I reach out to the new support network I have to find the “seasoned” mom to help me through.  I cannot express enough how truly thankful I am to have such a network in my reach.

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The possibilities are endless, and Braxton intends to prove that.

So, so much gratitude.  My heart is full again.

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