Monthly Archives: August 2015

An Unexpected Setback

Braxton had a follow-up Swallow Study today and we got some unexpected news.

A few weeks ago we followed up with our Sleep Doctor/ Pulmonologist and I mentioned to the PA that Braxton had recently started making a strange noise while he was eating, like he was clearing his throat and then swallowing his food. I didn’t think much of it until we were at the appointment and something told me I should tell the doctor about it, considering Braxton’s history of aspiration (swallowing liquid into his lungs). The PA was concerned enough to talk to our main pulmonologist who decided we should order a new swallow study. She also listened to his lungs to make sure they were clear, and they were.

Here is a video of what we were seeing:

 

We didn’t make any feeding changes and I made sure to talk to our Speech and Occupational Therapists, we were all stumped. Our Speech Therapist thought it could have something to do with all the ear trouble we have been having this summer since the ear and throat are all connected. It would certainly make sense if swallowing was hurting his ears and he was trying to relieve the pressure or whatever it is he was feeling. He still seemed to be swallowing normally and wasn’t showing any signs of aspiration, so we continued with our current feeding regimen.

IMG_2347Today we finally had the swallow study. I went in not expecting much of anything, but we may have a new issue to worry about.

During the test the speech therapist and the tech kept saying they saw Braxton regurgitating the food which is part of the reason we are seeing multiple swallows and the throat clearing. There were also a couple instances where it appeared he *might* be aspirating again. He was surprisingly calm and cooperative the entire time, so aside from the Barium not being so tasty, he did exactly what we would see at home. Once completed, we sat in the waiting room while the speech therapist and tech reviewed the recording to discuss their findings and recommendations with us. It took much longer than it has in the past.

 

The speech therapist finally came out and let us know that while she is not able to give us an official diagnosis, what she was seeing appeared to be an esophageal dysfunction. When you eat, your esophageal sphincter opens to allow the food to pass and then it closes so that air does not enter. Braxton’s upper esophageal sphincter is sometimes opening properly and other times it is opening and closing before his food gets to the esophagus. And there are times that the esophagus regurgitates the food which gives him trouble with swallowing. She also noted that even when everything works properly he is taking two or more swallows per bite.

So, now we need to figure out what exactly is going on with his esophagus. We’re looking at some kind of structural anomaly that we haven’t seen before. The speech therapist said she’s never seen what she saw today with Braxton. She also called in another radiologist who also said she’d never seen this. (Of course! Braxton has always been quite the medical mystery).  The plan for now is continue with oral feeds, but she was insistent that we proceed with caution since we don’t know what is really happening. We will need to cut back on his food and give him smaller bites since he did seem to tolerate that better than the larger bites. She will also be making a recommendation for us to get back in to the Aerodigestive Clinic so that our ENT, GI, Pulmonologist and a Speech Therapist will all be able to see him at the same time so we can all discuss what’s going on and formulate a plan.

I’m really not sure where we go from here, but obviously, this was not the news we were expecting. This could explain why we have had some difficulty getting Braxton to move up to thicker foods and different textures. Cutting back on feeds will certainly be a setback we didn’t expect. But, like all things, I know we will make it through.  I hope we can get some answers and clarity very soon. And to think I almost didn’t even bring it up to the doctor!

I am doing my best to stay away from Dr. Google today and patiently waiting for a follow-up with our doctors. Braxton and I enjoyed some time outside this afternoon on his new swingset. His sweet smiles and laughter filled my heart, and for a moment all was right in the world.

 

IMG_2346

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Welcome Back, Team Braxton!

The past few years, I have been writing a letter to introduce Braxton to his new daycare and elementary school teachers. This year, we are fortunate to have our same team of teachers and therapists, so instead of an introduction letter, I’ve written more of an update letter to let them all know how wonderful Braxton has done over the summer. I must add that we are SUPER lucky because his teachers also follow our blog and Facebook page, so they’ve gotten to see some pretty amazing things all summer! I really couldn’t have asked for a better team. Without further ado, this is the letter I am sending to our teachers and school therapists.

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Welcome Back, Team Braxton!

The Summer sure feels like it has flown by! I hope that you all had a wonderful, much deserved break. We are so excited for school to start again and look forward to another amazing year together. 🙂

Braxton has had a great summer of growth and excitement! One of the fun things we did this summer was go up to Dallas to meet up with other families with children who have Rubinstein-Taybi Syndrome. It was really incredible to meet other children and see where they are and what we have to look forward to in the future. We know that every child is different, but we have such high hopes for Braxton now and a little bit better idea of what we might expect and goals to add to our list. With your continued support, I know we will help Braxton reach his full potential.

I am writing this letter to you to update you all on the progress we’ve made over the summer, in lieu of calling a staffing or new ARD. I am, of course, more than happy to meet to further discuss or make any changes to our IEP, if necessary.

Gross Motor Skills

Braxton’s walking has gotten MUCH better over the summer. He is walking quite well independently, but does still require handheld assistance in new or busy environments to keep him going in the right direction. As you know, he is still fascinated by doors and windows and  will wander in that direction if not holding on to someone. He is also doing well going upstairs with standby assist, if there is a railing. Coming down he does need to hold on to someone if he needs to walk downstairs. He can scoot down all by himself though! I have also noticed that his endurance has increased and he can walk longer distances without taking a break. Braxton has also done pretty well on uneven surfaces (grass, gravel, rocks). We have been working on jumping on the trampoline and I have seen Braxton try to initiate jumping on flat surfaces.  He hasn’t come off the ground yet, but he bounces up and down. He has recently also started propelling himself forward on riding toys! Intense plasma car races are in the near future. 🙂 He also really enjoys playing catch and throwing a ball overhead. We’re working on kicking and he can do it as long as he has some help keeping his balance. Over the summer Braxton graduated to once weekly private physical therapy instead of twice a week.

 

Fine Motor Skills

Fine motor is still a work in progress, but we ARE seeing progress! Braxton can now build a block tower up to 3 blocks on his own with minimal tactile cues. He can build up to 6 if he has some help keeping the other blocks together. We have really been targeting that pincer grasp as well and he is doing better, but does still try to grasp using his whole hand. When we cue him to hold his fingers back, his pincer is beautiful. We have also worked on chunky block puzzles and he is doing better with taking the pieces out and putting them back in to their correct place. Occupational therapy is still twice a week and we will also be starting Hippotherapy back up in September.

Speech and Communication

This is where things have been REALLY exciting for us this summer!! Braxton is doing so well with the full size iPad and Speak for Yourself. He is making 2-3 word utterances without assistance. His favorite thing right now is to ask for hugs and kisses. He very deliberately will say “Want hugs” or “want kisses” and expectantly turn to you for his hug or kiss. He also says “Give ___” where the blank is filled in with a toy he would like. The other day he also said “you, you, you, my, my, my, food.” after he threw his spoon, which I took to mean that he wanted me to feed him. Sure enough, he ate just fine after that. He also said “sleep, sleep, sleep” repeatedly just before climbing in to my lap and falling asleep. I’ve learned that when he appears to be stimming or fixated on a word, he is often actually trying to tell you something so you may need to help guide his hand to find what he wants to say. We are so excited to see his progress and have been actively trying to incorporate the use of the talker more in to his daily routine to express wants/needs, feelings, schedules, etc. Modeling is extremely important in helping him to interact with his peers and be an active participant in class, so I hope that we will be able to use it more throughout the school day.

Aside from using the talker, Braxton seems to be learning other ways of getting our attention and communicating with us instead of just whining or crying. He climbed in to the bathtub to ask for a bath, he pulled food out of the pantry and brought it to me (instead of just sitting in his chair and crying), and he’s taken my hand and led me to toy he wants.

He also seems to be understanding more and following directions better. I can call Braxton from another room when it is time to change or eat and he will come when I call him. He understands what it means when I say it’s time to go somewhere and goes straight to the front door and gets excited. He also gets a little upset when we don’t leave right away. (We’re still working on that patience thing).

Feeding and G-Tube

Braxton can now feed himself!!  He is able to hold the spoon, scoop his food, bring the spoon to his mouth, and back to the bowl. He does need help when it comes to the last bit of food and scraping the bottom of the bowl. Also, a word of caution! He does still want you nearby. If we leave he gets upset and will throw his spoon or the whole bowl of food. He also likes to throw his spoon when he doesn’t want to feed himself, but instead wants YOU to feed him. So, I’d try to stay out of the line of fire, so to speak. 😉 He does still need his G-tube for liquids, so be sure to give him 2-4 ounces of water after lunch and/or after you come in from outside since it is still so hot out there. He has recently started making a sound like he is clearing his throat and we’re seeing multiple swallows, but he is eating normally and our therapists/doctors are not seeing anything to indicate that we need to stop oral feeds. We have a swallow study scheduled for the first week of school to be sure there are no changes.

Hearing and Vision

Braxton’s ear had some fluid build up in June and his right ear tube started leaking. After a couple weeks his ear tube came out but the drainage did not stop. We visited with the ENT who removed the other tube since it was out of the ear drum and just sitting in the canal. Since the right ear had been draining almost 3 weeks, the ENT cultured the ear and it turned out to have been a staph infection. We started some new ear drops, but within a week of finishing the drops the draining started again. After a trip to the doctor we learned his left ear was now infected and the right ear still had fluid. We began an oral antibiotic and resumed drops in the right ear. He seems to have cleared up, but we have not yet followed up to be sure. As a result of all of this, Braxton has not worn his hearing aids in over a month. 😦 He seems to be hearing well enough to understand and respond to directions and his communication device.

For vision, we did follow up with our ophthalmologist this summer and she said his vision still appears to be normal and again confirmed the CVI diagnosis. We have been working on identifying colors over the summer and he consistently finds the requested color when asked about 80% of the time. Sometimes when we hold up two blocks and ask him to pick a specific color, he looks right at it and grabs the other block while laughing or smiling, so we know he knows the colors and is playing with us. Our communication program also recently had an update that allows us to change the colors of background on the buttons as well as, the “desktop” screen. Instead of the black background, we can now change it to another color. I haven’t tried to change that yet to see if it helps with him finding his words, but it is an option we have now.

 

I’m sure there is something  I am missing, but I think I hit all the highlights. Overall, Braxton is making progress by leaps and bounds right now! It such an exciting time for us to see Braxton’s personality continue to emerge and be able to see him show us what he knows and comprehends. We’re really looking forward to this year working with all of you again and can’t wait to see what new things Braxton will learn. Thank you all so much for the work you do and the continued support you have given Braxton and our family. We really couldn’t ask for a better team! Please feel free to contact me if you have any questions or if there is anything you would like to discuss further.

 

All the best,

Braxton and his parents 🙂

 

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So will he ever speak?

When Braxton first got his G-tube at 2 weeks old, inevitably the first question I was asked after explaining his tube to family, friends, and strangers was, “So will he ever be able to eat by mouth?” For the longest time my response was, “I don’t know,” and we genuinely did not know. Once we started working with a Speech Therapist and making progress, that “I don’t know,” turned into “Yea, more than likely he will be able to eat like you and me, but he’s still learning.” Nearly 3 years later and you would never know there was a time he couldn’t eat. He still uses his tube for liquids, but he eats all of his meals by mouth. He still only eats purees, and we continue to work toward table food, but he IS eating.

Our journey to communication has been similarly riddled with questions and uncertainty. When we learned of his hearing loss, we quickly began learning sign language. Family and friends asked “Do we need to learn sign language, too?” I don’t know. Braxton did not pick up sign language as quickly as we had hoped and it seemed almost pointless to make our family learn, too. Instead, we encouraged them to continue speaking to Braxton just as they would any other child. That constant exposure to language was still just as critical. We hoped for verbal language, but were never sure if it would come.

When we finally received the diagnosis of Rubinstein-Taybi Syndrome  (RTS), we learned from other families that many of the children are non-verbal and use sign language or a communication device to speak. There are many who have at least some words and a few who are very verbal. Where would Braxton fall on that spectrum? I don’t know.

By that time, we had already started on the path to high tech Augmentative and Alternative Communication (AAC), and the diagnosis confirmed this was the path we needed to pursue, always holding on to the hope of verbal speech. We saw little progress at first, but we saw enough to keep hope alive and to continue this path. The dream has always been (and will always be) verbal speech, but the goal is communication. Communication using whatever means necessary.

As we have worked on using Speak for Yourself, a communication app on the iPad, quite heavily in the past year, the inevitable question has become “So, will he ever speak?” I don’t know.

I don’t know if he will ever speak.

I don’t know if we will ever hear his precious little voice.

I don’t know if I will ever have the chance to tell him to stop talking. (I don’t know that I would ever want to say that after waiting so long to hear him).

I don’t know what the future holds. We simply hope for the best.

 

Here’s what I DO know…

I know that by pursuing AAC we are giving him a way to communicate with us NOW.

I know that AAC is giving him his best chance to succeed.

I know exactly when he wants hugs and kisses, because now he can tell me with his talker.

 

I know exactly which toy he wants to play with.

 

I know that he likes to read.

I know that he likes to be outside.

How do I know? Because he can ask for it himself using his communication app.

 

To see this explosion of communicative skills grow right before my very eyes is nothing short of a miracle. Today, he was roaming around the living room with a slight whine and I tried so hard to find out what was wrong. He had just eaten not long ago, he had a fresh diaper, and he was playing with his toys. I looked around to see if a toy was broken or not working as intended, but nothing. I sat down and rhetorically asked what was wrong. Braxton saw his talker and walked right over to it, turned it on and hit “sleep” repeatedly. Then he climbed on to the couch where I sat watching him, laid himself down in my lap, pulled my arm around him and closed his little eyes.

Braxton Asking to Go to Sleep

 

The dream is verbal speech, but the goal is communication. Braxton just purposefully and successfully communicated to me that he was ready to go to sleep. Because of AAC, we can check that goal off our list.

Braxton now has a way to communicate and interact with the world around him. He can tell me what he wants, he can tell me what he likes, he can tell me that he loves me, he can tell me anything he wants, because we have provided a means to do so. Speak for Yourself has given Braxton a voice. A voice he is learning to use quite well!

So, will he ever speak? I don’t know. I haven’t given up on verbal speech. I would still LOVE to hear his voice, but I LOVE that I now have a way to know what’s going on inside his beautiful mind even more. One day, maybe he will verbally talk to us, but for now, he’s communicating and I couldn’t ask for anything more than that.

 

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