First Full Schedule Week of 2012

 It has been a typically busy week. One or two appointments each day that will continue through the week. Elias has IVIG as well as O.R. time with dental for cleaning and oral cancer screening. This is important and needs to be done early for Fanconi Anemia patients. While under general anesthesia he will also have another MRI and a discussion with his Neurologist about the readings. While everything should be routine, for Elias anytime he goes under anesthesia it is always a little nerve racking for us as well as his doctors. There is always high risk respiratory wise for him. Thoughts and prayers on Friday will be appreciated.

 

 We are anxious to see what Elias' IGG levels will be, which the results will not be available until The beginning of next week. We are hoping for a continued rise in the level versus the up, down trend that he has been showing. We have noticed some increased energy in him overall, day to day so we hope that is an indicator of positive results.

 

 

 

The photos on today's post are from this afternoon while Elias was being fed. They turned out great! He was watching 'Cloudy with a Chance of Meatballs.' It has become one of his favorites. Thanks to his great-grandparents  Nana & Papa for buying this for him. Elias has continued to be really into the chasing game. The communication intent, engagement an initiation of action is HUGE for him. It is a big step forward in his understanding how to effectively communicate. It has been very exciting.

 

As always we thank everyone for taking the time to read about our amazing little man. He continues to amazes us everyday, and we are trying to share those triumphs with you all as much as possible. We are always thankful for the prayers and support shown to him and our family. We wish everyone a healthy happy prosperous new year.

 

 

 

The Chase is On

The past few days Elias has become very into the game of chase. He is communicating this desire by taking our hand and leading us, much like he does when he is taking us to something he wants to request. After a few feet he lets go then pushes our legs while laughing. It is quite adorable. As we take off running he let's us have a head start before chasing us. Sometimes he will change direction and try to cut us off the other way. It is a game that has blossomed out of the blue, but has been very active each time he is out and about for playtimes. You can see the pure joy on his face and hear his enthusiasm. It has been a lot of fun for us all. Here is a brief clip of Elias chasing around the house.

Augmentative Communication Evaluation

It has been a year since we had our last evaluation for an assistive technology device for communication. The initial assessment was that Elias was not really ready functionally for one. Well a year later we have seen tremendous improvement in Elias' abilities. So it was decided by the team and ourselves that another evaluation and different opinion would be appropriate for Augmentative and Alternate Communication devices (AAC) as communication assistants. When we wrote about our evaluation a year ago we referenced Stephen Hawkings as an example of a person who used a type of AAC. For Elias, it gives him a voice that can eventually connect needs, thoughts and expressions. Right now he is communicating very basic needs and wants, but little more. They are like one word sentences with the use of the picture exchange or gesturing.

Our  evaluation session was very informative and extremely helpful in determining where we are in the process and what we can do to get him ready and able to use one effectively. The main reason it is important to ensure he is ready for an AAC is that the devices are typically priced around $7,000 or more. Insurance funding for some or all of the cost can only be submitted once every 5 years. Therefore it is important to find something useful now, but has room for growth.

We have followed and implemented many of the suggested strategies by the first set of AAC evaluations with success, so we are on the right path. This much we know. This latest session told us we are close, but not quite there. So funding requests for a device is still discouraged. However, there are some alternatives that are highly recommended as transitional tools. The technology and concept of Tablets, like the iPad for example has really opened the door for children. There are now several applications which function similarly to their expensive counterparts-yup, the saying is true, 'there is an app for that.' After watching Elias engage with a tablet with amazing proficiency she felt that he was indeed ready to move into this direction. Elias is more interested in a dynamic display , versus the static nature of just the picture cards. While he responds well to those picture cards he is obviously highly motivated by the dynamic screen. The touch screen of a tablet is more easily achieved for Elias even with his hand and arm malformations. He can even eventually be taught the use of an adapted stylus in addition. She is impressed and pleased with Elias' intent to communicate in addition to his ability to use various methods to obtain the results he is seeking. At the end of the session she gave us a very confident and strong recommendation on device and application software that would  most optimally suit Elias' needs for now. Her device suggestion is a iPad2 (32 GB suggested for library expansion)  with the use of the GoTalk Now application. This program provides the basic use for now and the growth needed as he develops more skillful use. It is also highly customize-able with unlimited digital photos and additional resources. It will also be necessary to find a very sturdy case (we have been given a very good recommendation here as well - military grade protection too), to protect the investment since kids have a tendency to drop them.

So now that the recommendation has been made it is up to us to figure out how to make this happen. We have done some searching to see about grants or other funding sources, but have had no luck. Many of the programs out there we have found are specifically geared towards Autistic children or Asperger's Syndrome patients. The only funding source the social workers have been able to identify as a potential is a waiver in our state especially designed to cover equipment need expenses and adaptable equipment. However, we do not qualify because you can only be on one waiver program. Elias is already on a medical waiver program to help cover the cost of his nursing care - let's not even go there on how poorly that has been going - so we would have to relinquish that, which unfortunately is non-negotiable and not an option. To be fair that waiver is not designed with chronically sick children in mind that need ongoing medical care. It is for children with delays without the "illness and disease." It has become frustrating how Elias falls outside of everyone's "box" of criteria. None of the Social workers or others in positions to provide information on assistance can ever find anything to help like they can many patients. It is not their fault, they can only go with what they know and learn. It frustrates many of them as well. Elias' complex needs medically and developmentally are in conflict. It is like the system can't handle it if you have both, which for serious medical issues and the amount of time in a hospital like Elias has had, delays are inherent. We will continue to search for a way but it seems that we will need to find a way to purchase these things out of pocket. Discussing this with his school and therapy teams, they have other clients who use this type of transitional material and they are pleased with the positive impacts they have seen with those children. In addition to using the iPad2 as a transitional AAC device there are many other educational uses and tools that his preschool teacher and therapist have said they would likely take advantage of having available.

This is the next step in Elias' total communication approach. The ultimate goal is of course for Elias to  become verbal, but realistically that is still years away. He still has a great deal to accomplish on the listening side, but with the progress and verbalizing we are hearing from him, the future is bright. With continued Aural Rehab (listening therapy) and speech therapy along with the addition of these new tools Elias will become more independent from a communicative point of view. Creating that independence is extremely important in his overall development. With the progress we have seen over the past year we have seen equal explosion of positive development in all other areas. This will only continue if we keep moving in this direction. That is why we must make this happen regardless of the sacrifice it takes from us to make it a reality.  

This Weeks Recap

It has been another busy week here. Tons of appointments in 3 days at Children's Hospital. On Monday we had to head into the FA Clinic for an unplanned visit because of Elias' central line. We noticed on Sunday night while changing the cap and dressing that there was some blood buildup (the beginning of a clot) just below the cap. This is very dangerous as a clot or air bubble in the line would travel directly into Elias' heart. Fortunately it was a  "simple fix." All things considered that is. We pushed some "super heparin" in the line to break the clot up. It sat in the line overnight and was withdrawn the next morning. The clot cleared and everyone was happy, breathing a sigh of relief. We need to ensure when we are inpatient and receiving medications through his line that the flushing is done in a pulsing fashion, rather than conservatively. Plus per protocol anytime they flush the line they draw back and pull "waste" blood to ensure the line integrity is functioning properly. Not a big deal, lesson learned and we will know to address this next time to prevent a repeat issue.

Tuesday morning we had a follow-up with Neurology. She was very pleased with the way Elias looked and acted in addition to the way he responded to her reflex tests. All positive signs that there was no lingering effects or damage to the brain from the latest seizure. We discussed the raising of dosage on the Keppra (seizure medication) and the rescue drugs. We also set a new threshold for when to call 911 for transport and admission. The goal is to obviously not be admitted every time he has a seizure. Hopefully the increased Keppra will prevent them, but should he have one the Versed (rescue med) should stop the seizure within a few minutes. Any seizure over 5 minutes will warrant a 911 call. The real question still remains, why? As with the breathing episodes, we may never know the answer. We are going to be seeing neurology much more frequently going forward, even without seizure activity to monitor him.

One bit of- we call it bad news but it really is what it is- in clinic they weighed Elias and he has lost weight :-( He was down to 8.1 kg from 8.4 kg which for those of us in America means he dropped under 18 pounds again. We are thinking it is from increased activity and mobility. He simply burning calories like mad. We are working on trying to get GI back on track with managing his feeds so that he can GROW! This is something that all his doctors keep saying will hopefully improve some of the ongoing problems, especially the airway. This is one of the issues associated with Fanconi Anemia, small stature, but Elias is even small by those standards. Our little joke has always been, Elias is not small he is fun size!

This week Elias also dove into his full preschool schedule here at home. As suspected things are going to be intensely active and busy. With the newest issue in the seizures that is only increasing the appointment load. After this week and finally meeting with all his teachers and therapist we are beginning to wonder if we should not have waited as we originally intended. We are having some issues with scheduling. Everyone seems to want to come on Tuesdays. We have 12 therapist between school and outside services to try and work in around appointments. It took some serious negotiating and rational arguments to attempt to gain some flexibility from everyone, but we are hoping things will begin to work out and settle in. The preschool teacher was wondering why she was part of the team this year. Not that she doesn't want to work with him, but where he is developmentally is making it challenging for her. Fortunately we do not have any specific IEP goals with her, but we agreed if we needed to cut back in anyway due to overload she would be a first to go this year. We are still positive but are really going to have to watch for contradicting methods and strategies between the services. We do not think many of the school therapist realized the intensity of the duplicating services. Which typically would have separate goals due to limitations on the school therapies focus to education based only. This year much of that has been removed to get him caught up, which was why we had the outside services and had planned on waiting a year. We will need those outside services in future years though to cover all Elias' needs. To cut them now would put him at risk of not being able to regain them later. It is a vicious circle that we knew from the beginning was going to be hectic and maybe even a bit frustrating. We have faced similar problems before and have always worked through them and this will be no different.

On the home front, Elias has been having fun. His infatuation with bubbles has become an obsession. He LOVES bubbles and wants them constantly. One really awesome effect is that he is trying to say bubble. Further proof the listening therapies are slowly but surely working. He says "buba" when he looks at them in the container we keep them in or when he grabs the bubble card to communicate. He has really been focused on gestural communication. He is getting quite effective with this method as well. He is really proving to everyone how bright he is, but his stubbornness is making progress a little slow building his "vocabulary" or repertoire of words with pictures, signs, and actions. Looking back on the last nine months Elias truly has come quite a long way though. We are proud of his progress and hard work.

Many of you have been asking about us and how we are doing? The past several months have been among the most stressful we have encountered so far in our journey. It has been physically exhausting and mentally draining. We manage as always, but sometimes we look back and ask ourselves, how did we do that? It is amazing how driven we can be when it comes to him. Sometimes we feel his smiles and laughter are an alternative energy source in itself and that is okay by us. It is completely amazing what you can do when necessary. As always we appreciate all the thoughts and prayers for our family and especially for Elias! He is a special little man and continues to capture hearts. We are very thankful for all of you and for everyday with him.

First Day of Home Bound Preschool & Media Transition

As we mentioned in our last update, finding the time to update has become incredibly challenging. We also are having some challenges in sharing things such as photos and videos. Sites we have been using have gone out of business or made changes that make them ineffective, difficult or useless. We have been exploring some options and trying to find those that compliment our mobile sharing needs - since 85% of our sharing happens on the go or at a time when getting to the computer is impossible for unforeseen future. So if you have already noticed that stuff is spread out on several sites, fear not - we are going to pare that down shortly. Thanks for bearing with us through this transition. This truly is a wonderful age we are living in with the ability to stay so connected.

Little Ham in his 1st day of school outfit

Moving on to Elias! He has been a busy little fella. Last Wednesday was his very first day of home bound pre-school. Mommy had a cute little outfit picked out for the occasion, a huge milestone, even if it is just here at home! He was meeting with his speech therapist. Elias slept right through the session despite our efforts to wake him. Unfortunately the time was 3:15 in the afternoon, prime nap time for him. We had warned this would be an issue. She wants to try again next week at the same time to see what happens. If we need to change the time we will. It will likely be changed as he does much better earlier. The session was not a complete wash though. We spent the time updating what he has accomplished and the changes that have occurred over the summer. She was happy to hear of his communication progress, particularly with gestures. He is becoming quite versed in that method and it has become his primary source of communicating. At this point she is the only one that has contacted us to begin, but we should be hearing from all the others working with him in the next few weeks.

Medically, Elias is still doing fair. We had IVIG again on Friday because his IGG levels are so low. We will find out this week just how often we will have to go for this. They still are unsure why those levels are dropping. Elias was having fun though before the infusion began. Here is a quick video of Elias! jumping on the bed in day hospital. His adjusting to the medicine seems to be going well. The B-6 vitamin also seems to be having a positive impact limiting some of the more severe side effects, at least in occurring as often. The medicine for the adrenal issue also is having a positive impact on his energy level, he is able to sustain more. We are still coming up on a few follow-ups and waiting to see a few new doctors to try and help with various components. Overall, we can say that given the circumstances and all the changes Elias is doing pretty good. Thank you all for continuing to keep Elias in your thoughts and prayers.

One final thought/question - What would everyone think about occasional audio updates? It is something we are exploring as an option to bridge the gap between updates when it is impossible to do so. It gets more difficult the longer it is between updates. Leave us a comment below or click the contact us banner to the left and give us your thoughts.


 

Elias' first word

You have to listen close as it is right at the beginning and quiet, but his Aural Rehab therapist has confirmed and acknowledged this is/was his first officially spoken word.....the word is BABY. It is proof that progress is slowly but surely being made and while it in no way suggests that Elias will be "talking" anytime soon, this is a reassuring sign

our persistence and aggressive therapy is paying off 

It is becoming more and more challenging to keep this blog updated. It seems as of late the schedule has been so hectic along with "stuff" (like Elias not breathing for example) just hitting us with the old 1-2! The fall isn't shaping up to be any easier, in fact it will be more nuts with the addition a preschool services here at home. We have been exploring other possibilities that might be easier, for instant - audio updates. If anyone has any suggestions we are open.

Since the last update Elias has had several more clusters of breathing episodes. Usually on the weekends it seems. It is as if he knows! Last weekend they began Friday at 4:30 and continued through Sunday Morning. So he has now had periods where he stops breathing 4 out of the past 6 weeks. This is the most frequent we have seen them in quite a while. All we can do is manage and try to keep the stress to a minimum during those times.

Elias has had a few sessions with his new speech therapist. It is a growing process and will take some time for them to learn to work with each other, but there has been some positive things already. We are working to expand his vocabulary with the picture exchange. At times the little stinker will turn it into a game of keep away as he smirks at you. He is a joker so watch out. In his listening therapy yesterday we witnessed something very interesting. She had a plane and a train. She showed and played with each individually with him. With airplane she would make an 'ah' sound before showing the plane. Then in the same manner did a Choo Choo sound with the train. She then presented both but rather than ask which one he wanted she made the ah sound, in hopes he would choose the airplane, and he did. We were not convinced fully that this was not merely a coincidence, so she did it again. Same result. So to try and substantiate what we saw she presented the two again, but this time made the Choo Choo sound. Elias just looked at her and did not do anything. She made the sounds again. After a few times he finally reached begrudgingly and touched the train, as if to say okay okay there is the train can we move on. So we are going to try that experiment over the next few weeks to prove it was not an accident. That he is beginning, ever so slowly to recognize even more sounds and correlated them to the appropriate item. If he continues to prove this theory correct it would be a HUGE step. So here is to praying it was real and effective.

Another issue keeping us from the blog updates is constantly having to chase down and follow-up on things that we are told have been done or should be done by various providers. One example, we are having issues once again with Elias' prevacid an the insurance needing prior authorization. The problem hasn't been so much getting the authorization in as it has been getting to the right person. This is due to the incompetence of the pharmacy providing us with the wrong information on what was needed, not once, not twice, but three times in the past 10 days. On top of that they have contradicted themselves in the information proving that at times they were just saying whatever to placate us and move us on for the moment. Ultimately this has cost them our business and frustrated the doctors office handling the PA, as they caused them 3 times as much work, most of which was not necessary. The part that truly angered us was not only the deception, but the lack of concern or willingness to ensure the information was communicated in a timely manner, as this medicine for Elias is potentially life or death. Why? One of the theories behind the breathing episodes is that reflux temporarily paralyzes the vocal chords, which creates a reaction causing him to stop breathing. He did have a cluster of episodes in the 10 days he has been without. Hard to say for sure, but if that is a physicians theory on the table for the unexplained along with very few others, you tend to take them serious, despite what you believe. Fortunately this morning we have filled the Prevacid and he will be receiving this once again.

This past weekend Katharine's mom and brother came to town for a visit. They will be with us for a week. Katharine's Aunt, Grandmother, and cousin flew up on Friday to surprise everyone. They were here until Sunday. It was a fun time surrounded by family. Elias was having such a blast. He barely stopped the whole weekend. He did have a blip on Saturday night, and was not doing so well, but bounced back by morning. Just reminding us that he is still medically complex is all. He showed off and demonstrated all the wonderful skills he is learning. The bubbles with the picture exchange for communication was by far the crowd favorite. There are some photos that we will work on putting up soon. We will update when we can and who knows maybe we will figure out an easier way. As we said we are open to suggestions if anyone has any.

Creating Total Communication for Elias!

As you know we have been working with Elias to develop a total communication system because of his hearing loss and limited response to amplification. It has been quite a process that has involved 3 audiologists, 2 speech therapists, 2 occupational therapists, 1 assistive technology therapist, 1 aural rehab specialist and 2 doctors –ENT & Developmental Pediatrician. All of these 11 individuals had a different role necessary to create a system that will enable Elias to effectively communicate through various means and methods. It has taken more than a year with this enormous team to finally achieve some success.

What is total communication? This is a system that incorporates various modes of communication. Sign Language, auditory Language, picture exchange, and assistive technology –use of computers, switches & other various devices. We have been steadily working on each of these components to develop Elias’ total communication process. At times this process has been frustrating for all involved, including Elias! With so many hands in the cookie jar and nothing to facilitate bringing them all together there were differing interpretations and implementations of strategies. Some of these were contradictory and went undetected for some time. Reflecting back that has had both positive and negative effects. The positive effects were that tools were given to Elias, but at potentially inappropriate times. Putting the cart before the horse is you will. It was prudent and appropriate when focused on isolated roles, but putting the big picture together it did not always fit. Eventually, these tools would become appropriate. It was just making him understand that he already knew this, it was just being used in a different context from what he was used to. While this is seen in many areas of development with communication it was making things harder for us often times confusing him to a point we would have to regress to build it back in appropriately.