Category Archives: Kids and Family

The Sweetest Word

For 6 years I have waited.

I have prayed.

I have dreamed.

In my dreams, I hear your precious voice. I feel the joy in my soul and pride in my heart with every spoken word. But, sadly, I awaken to see you sleeping and I know that it was just a dream. Sometimes, I  wipe the hot tears of sadness from my face as I squeeze you tightly and wish one more time, that one day, I will awaken to the sound of your voice.

Last night was different. As I lay next to you knowingly wide awake, the two of us, I heard it. The first word. It was just 3 little letters in a brief, fleeting moment. It was slow and deliberate. I quickly pulled out my camera and asked you to say it again. You spoke the word, beamed with pride, reached out for a hug, and then slowly drifted off to sleep.

As the video replayed, my heart leapt from my chest and I felt the familiar feeling of hot tears rolling down my face, but this time…this time, they were tears of joy. Never has the word “Mom” sounded so sweet and meant so much. This time, I cried myself to sleep happier than ever.

Lest I think it was a fluke, today, I have asked you time and time again, and every time I hear you say “Mom”, my heart melts.

You have had many sounds for so long, but today was the first time they held meaning. The first time you looked directly in to my eyes and said what I have been longing to hear. The first time they were more than a button on your iPad. As I listened to your baby sister coo and babble, my heart hurt thinking she would reach this milestone before you. You have worked so hard for so long, and today, that hurt was replaced with a renewed hope that soon, we will hear all of the words you have been waiting to speak. All the words we have been waiting to hear.

 

[The following is compilation of videos I have taken from last night and today. The first video is from last night, when Braxton first said “Mom.” The other clips are from throughout the day and include us talking and making other sounds so you can see the differentiation between his sounds and the very deliberate, “Mom.”] ❤

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A Letter to Health and Human Services and Texas Legislators

Dear Health and Human Services Commission (HHSC) Director and Texas Legislators:

I am writing to you today as a parent, therapy provider, and concerned citizen regarding the significant delays Texas Medicaid is currently experiencing with authorizations which are drastically affecting continuity of care and quality of life for my son and thousands of Texas children. These delays seem to be a direct result of recent legislation passed to decrease funding to the Texas Medicaid program by approximately $350 million (Rider 50). While the proposed budget cut is currently on hold due to a court injunction, it would appear HHSC has implemented these cuts in the form of delaying authorizations in effort to save the program money.

As a provider, here is just one such example. I received an authorization September 15, 2016 at 7:15 pm via fax. Our office submitted this authorization request on August 1, 2016 – 46 days ago. This letter is dated September 1, 2016 and the authorization period begins on August 15, 2016. The Texas Medicaid Provider manual states that services will not be compensated for without an authorization and authorizations will not be backdated, so therefore, we as providers, must tell our therapists that they cannot see their patients until authorization is received or we risk not receiving payment for services rendered. In this case, our therapist has not seen their patient since the evaluation was performed on August 1st. Now, here we are 46 days later and we find out that 15 days ago our authorization was approved and backdated an additional 15 days, so our patient has missed a month of therapy because we were not notified in a timely manner. Furthermore, our request was for two visits per week and the reviewer denied our request suggesting our patient only required one visit a week due to “slow progress toward therapy goals. “ This is only one example of many we have personally experienced and the countless more we know other patients and providers to be currently experiencing across the state. On average, our authorization requests are taking 4-6 weeks to be approved, if no additional information is requested. If Texas Medicaid & Healthcare Partnership (TMHP)  requests additional information, the delay is an additional 2-3 weeks, at minimum. Per the TMHP manual, we cannot submit authorization requests more than 30-days prior to the expiration of a current authorization rendering us unable to be proactive and submit requests 4-6 weeks in advance. As a result, with the current timeline of approval our patients are experiencing 2-3 week lapses in therapy service, and sometimes greater.

These delays are detrimental to the health and well being of our patients. One month without therapy can cause significant regression for chronically ill and long-term disabled children. To add insult to injury, our patients are experiencing regression and loss of skills due to authorization delays and when our request is reduced to once a week visits instead of twice a week, our patients do not have adequate service to reach their prior level of skill nor continue to make significant progress toward goals. Progress is slow because our therapists have to take several steps backward to get our patients back to where they were before there was a lapse in treatment. And then attempt to make progress toward the goals previously set.

The authorization delays directly coincide with the time period in which the court issued an injunction to delay implementation of Rider 50, which would reduce payment for therapy providers. Thousands of children across the state are experiencing lapses of 3 weeks or greater, which, in turn, is undoubtedly saving the state a great deal of money. This seemingly underhanded attempt to implement the budget cut despite court rulings is gross negligence and directly impacting the lives of our children. For many children, therapy is required to maintain current level of function, to decrease the chance of contractures or serious injury, to ensure safety in the environment, to improve and strengthen fine and gross motor skills, to teach speech, to correct speech deficits, to ensure safe feeding, to improve quality of life by teaching skills that will allow children to interact with their peers, and for so many other reasons. Therapy is a cornerstone of ensuring proper development in children.

Additionally, providers have tried to address these concerns with TMHP reviewers and we are told that authorizations are going to nurse review and there is no time period for which they must be approved. Meanwhile, parents are calling TMHP and the Medicaid Ombudsman’s office and being told that authorizations should be approved within 3 business days. As a result, our patients assume it is the providers delaying the authorization and we are losing the trust and rapport we have worked hard to earn from our patients.

The lives of our state’s most vulnerable citizens seem to constantly hang in the balance while legislators and state departments toy with policies looking to save money all while harming the lives of children. It is clear that the powers that be do not understand the needs of special needs community nor do they know how to meet those needs. As a result, children across the state are currently without the necessary services that would improve their quality of life. This issue needs to be rectified immediately. As it stands, the state is currently profiting off of the steady decline in health and absence of service for our children, which is simply abhorrent, to say the least.

I hope your respective offices will look in to the matter and ensure corrective action will be taken. My son has a life-long disability and depends on therapy services to provide him his best chance at success in life. The issues I continue to see with Texas Medicaid provide me with little hope for his future. I know that one day soon, his service will be denied, as it has been for several of our chronic patients, because what we see as leaps of progress, you deem to be “too little” progress. While Texas is historically a pro-life state, the state places little value on the lives of the disabled, which is evident when legislation passes that can directly harm their lives. It is unfortunate when families like ours rely on the Texas Medicaid program, even as a secondary insurance (as we do), because without it we simply could not afford the staggering costs associated with caring for a disabled family member, only to have that crucial support ripped away due to systemic downfalls and budget cuts.

As you prepare for the next legislative session, it is my hope you will have greater consideration for the lives of your most vulnerable citizens. They are your sons, daughters, nieces, nephews, grandchildren, and they desperately need you to speak up for them in these matters because they deserve the right to a full life. They deserve access to quality healthcare, to programs that enrich their lives, to services that will enable them to become successful tax-paying citizens. We, the families, the providers, the taxpayers, hope for a resolution – sooner rather than later.

Sincerely and with hope,

A Texas Mother looking out for her son and the lives of all Texas children

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To The Strangers Who Became Part of Our Family

Five years ago, four people entered our lives as strangers. I knew nothing about them, I knew nothing about what they did, I only knew that our doctors in NICU wanted us to see them all. We were new to this world of therapy and special needs. We were still convinced there was nothing “wrong” with our little boy and didn’t see what all of the doctors saw. I was hesitant to let them in our home and trying to fit them all in to our schedule was stress upon stress.

The first to arrive was our Physical Therapy Supervisor, Mary Elizabeth. She was kind and patient. Most importantly she gave me hope. I remember her telling me that “on paper” she expected to see a child doing far worse than Braxton. It wouldn’t be until years later that she told me that in the early days she wasn’t sure Braxton would make it and she wasn’t sure what she could expect from him. Nevertheless, she never let that show. She never gave up on him and she guided us on this journey. She never treated him like a terminally ill child. She helped us build the rest of our team and ensured Braxton received the medical care he deserved. I’ll never forget how with one phone call a Genetics appointment scheduled in November was moved up to August to start us on our diagnostic journey. When the switch finally flipped for Braxton and again when we got our diagnosis and learned Braxton was definitely not terminal, she continued to make sure we were on target developmentally and set goals to get Braxton to reach higher and higher.  At that first visit she told me it would be her partner, Gil, coming to work with Braxton.

Braxton working with Gil on our playset

Braxton working with Gil on our playset

When Gil arrived,  I was hesitant because apparently I had seen too much Oprah and I’ll admit I was worried about having a male in my house when my significant other was away. But, that was pretty foolish. Gil is a Physical Therapy Assistant, but let me tell you, he has been an invaluable member of our team. “Assistant” is so misleading. With the years of experience he’s had, there is no one else I would have wanted on our team. He was so gentle and patient with Braxton. And in his spare time he likes to dress up as a Superhero – who doesn’t want a superhero on their team!? We made S-L-O-W progress at first, but Gil always pushed Braxton forward. I have a 5 minute video of Braxton TRYING to roll over. And video of Braxton up on his hands and knees rocking back and forth TRYING to crawl. Five years later and Braxton is knocking Gil over as he rears up and smacks him in the chest wrestling with him. He is walking independently, climbing stairs – well, climbing everything really! The progress he has made is truly amazing.

Braxton with Gil and Mary Elizabeth

Braxton with Gil and Mary Elizabeth

Aileen Feeding Braxton for the first time

Aileen Feeding Braxton for the first time

Shortly after Physical Therapy started, we still did not have a Speech therapist on board and Braxton needed help with feeding. I had no idea that Speech therapists could work on more than speech! Mary Elizabeth came to our rescue and called in a friend and colleague. Lesli didn’t have any openings at first and I remember that she came out on a Saturday to do Braxton’s evaluation. Within a few weeks, she had a space open up for Braxton (or she made one!) and we began working on bottle feeds. With her help, Aileen got to live out her big sister goal of helping to feed her brother. Bottle feeding did not last long as we learned Braxton was still aspirating (swallowing liquid in to his lungs), but we slowly worked back up to it, until Braxton just decided he didn’t want a bottle anymore. When we introduced baby foods, Braxton’s progress was miniscule. We celebrated BITES and when he ate HALF AN OUNCE. Now, Braxton eats 16-20 OUNCES EVERY MEAL!  You would never guess he was a kiddo with such great feeding difficulties. We had a few regressions in there, but Lesli never gave up. She never let us give up. We continued to press forward and here we are with a hungry little man on our hands. We did also work on Speech and although we never really got any words from Braxton, we started on the road  with Alternative and Augmentative Communication (AAC). Braxton is now using an iPad with Speak for Yourself to communicate with us. He is still not using it as much as we’d like, but he’s made really great progress.

The last to join our team, was Elizabeth, our Occupational Therapist. OT is apparently really difficult to find! Thankfully, OT and PT look very similar in the early months, so we weren’t in too much of a rush initially. Elizabeth has always been super patient with Braxton. Fine motor skills are definitely one of Braxton’s biggest struggles and his progress has been very, very, slow. (It took 3 years to get him clapping!) But, Elizabeth never seemed discouraged or frustrated. She worked with Braxton at his pace, always pushing him a bit further out of his comfort zone. And she has always spoken to Braxton as if he understands everything she is saying and expecting more from him, because we knew he was capable of more! Braxton has made a lot of really good progress with his fine motor skills and we know he is ABLE to do so much, but whether he actually WANTS to or will perform is a different story. We know he can build block towers, but he prefers to pretend he’s going to put the block on top and then throws it at the last second in protest. He has certainly kept Elizabeth on her toes and she developed some super quick reflexes!

Braxton working with Elizabeth and Lesli.

Braxton working with Elizabeth and Lesli.

After having worked with this incredible team for the last five years, this week has been pretty difficult for us as it has all come to an end.  Braxton is starting Kindergarten next week and unfortunately, our team can no longer see him as our schedules just don’t match. When we moved outside of their service area, they all moved with us to stay with Braxton. So, I know if there were any way to work it out, they would. But, sadly we weren’t able to make it work and we have had to say goodbye to everyone this week.

As I prepared myself to let them all go, I thought back to the days when we all started together. How worried we were. How clueless we were. Over the years, they became part of our family and were no longer strangers. I’ve learned about their families, met their children, commiserated together over school woes, cried together, and laughed together. They’ve watched my little man grow from this small baby who didn’t even fill up a couch cushion to this wild child climbing on tables and chairs, running away to hide from therapy. Every week, twice a week, for an hour each visit they’ve been in our home. It might not seem like much, but it adds up quickly and as the years pass so much life has been lived.

I am forever grateful to this team of people who helped us with our son. Taught us the things we needed to do to help him succeed. They helped to empower me and showed me how to be an advocate for my son. As we move forward to this next chapter, I look forward to the progress Braxton will make with our new therapists thanks to the strong foundation we have built with this one-of-a-kind team.  Thank you all, each and every one of you for all that you have done for Braxton and our family. I hope the small tokens we gave you will remind you of Braxton and remind you on the hard days that someone is grateful for you and you are making a difference. ❤

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When Being His Voice Hurts

There was a lot of hand-over-hand help, but Braxton enjoyed coloring his project.

There was a lot of hand-over-hand help, but Braxton enjoyed coloring his project.

Braxton came home with an assignment this week- to fill out an “All About Me” Poster. I looked at it and thought how fun it would be to work with Braxton helping him color it in and gluing pictures to show his classmates. All the standard questions were there, My name is ___, I am __ years old, I live in ___, and then there is a space for Braxton’s picture, and finally I get to “I want to be a ___ when I grow up.” I mentally filled in the blanks for all of the other questions as I looked it over, but when I got to that last one I paused.

I don’t know what he wants to be when he grows up.

 

Questions like that make me sad for a number of reasons.

For one, I don’t even know what I would “make-up” as a realistic answer because I don’t know what he will be capable of in the future. Sure, parents tell their kids that they can be anything that want to be and we don’t ever want to crush their dreams, but as a parent of a child with special needs I feel a greater responsibility to make sure those dreams are realistic. I want to always set my son up for success and one of the ways I can do that is by giving him attainable goals. Even if they are out-of-reach they should still be attainable, meaning that if he really worked hard and everything fell in to place, it could be possible. Picking something out of the sky hardly seems fair.

Secondly, I think what hurts most is  when I realize that he lacks the ability to answer for himself when it comes to likes/dislikes, preferences, goals, dreams, etc. Even if what he wanted to be when he grows up is unattainable, he can’t even tell me what that dream might be. I don’t know if he wants to be fireman, a teacher, a doctor, the president of the United States, or any other profession. And I feel completely guilty when I have to pretend that I know what he would say.

There is a big difference in speaking up for him and speaking for him. I will always speak up for Braxton because I am his parent and advocate. I will be his voice to make sure his needs are met and to be certain that he is treated with kindness and equality. Speaking for Braxton diminishes him as an individual and inhibits his ability to think for himself. Just because he cannot tell me what he wants to be does not mean that he does not have a dream for his future. Speaking for him could eventually send him the message that what he has to say is unimportant and not only will he stop thinking for himself, but he will then lack all motivation to speak for himself. I don’t ever want Braxton to feel that way, which is why speaking for him, even in what seems like meaningless situations (like a class assignment), brings on so many mixed emotions.

Braxton has made incredible progress with his Augmentative Communication Device, but he is still not able to fully express himself like I would like to see. I know that he will get there eventually and I’m so glad that we have given him the tools he needs to be independent in his thoughts and expressions. But, until he gets there I struggle with how to handle speaking for him when it is called for and how it may or may not impede his ability to speak to us later on.

So, how did I end up answering the question?

While I have no clue what Braxton would like to be when he grows up, I think we can all agree that whatever it is he decides to be, he will be totally and completely AWESOME!

When I grow up

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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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