Monthly Archives: May 2013

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 ūüėČ

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… ūüė¶

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.

 

// 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!

8 Comments

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

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.

20130522-002513.jpg

3 Comments

Filed under Kids and Family, Life, Special Needs Child

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.

1 Comment

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

A Special Mother’s Day Gift

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.

According to Aileen

‚ÄúThe 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.‚ÄĚ

 

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.  Life is full of so much love and happiness with these kids.  We went to church this morning and then to get groceries. We are spending the rest of the day cuddled up watching movies….that is a great day for me.

This year, Aileen wrote me a special book for Mother’s Day.  I read it and barely held back the tears, but then I had her read it to me out loud and couldn’t contain myself.  So many happy tears. I love this little girl so much!…

View original post 44 more words

Leave a comment

Filed under Family, Kids and Family, Life