It Has Been A While

From Halloween 2010

Halloween 2010

Elias took advantage of Halloween to give Daddy a scare. He had been having an off day yesterday. He seemed more tired than usual and a bit moody, so we were already more watchful. While napping his head began to shake and his eyebrows moved up and down rapidly. Within seconds his head was shaking faster. Initially my heart sank, another seizure. I quickly began trying to wake him, with a single toggle his eyes opened I put my hands on his shaking head and it stopped. Thank God. Had it been a seizure it would have kept going. He did seem to have a bit of a headache so we gave some Tylenol. He began to feel a little better shortly afterward. We were thankful it wasn't another seizure and feel like he was feeling a really bad headache or migraine in his sleep. The head shaking was just him trying to soothe himself some. Unfortunately, headaches and migraines have become increasingly common. They are a side effect of his IVIG as well as a new normal, as we are told with the seizure problem. Neurology told us two things in his last visit with them. First, he is more prone to have seizures when he is asleep and potentially when sick. Second, we need to lower our threshold on giving Tylenol. Since Elias is non-verbal, while his communication has improved headaches are often disguised and difficult to read. We are all getting better learning the subtle cues. It is a process that we are constantly making progress. Needless to say there was no dress-up or trick or treating for Elias. We had not planned on the trick or treating anyway. First, he can't be out that much and second he can't eat by mouth anyway. Finally, being non-verbal and not hearing he has no understanding of what the heck holidays are anyway. Last year we sat outside for about 15 minutes with him so he could see the other kids dressed up. He didn't seem to care too much, hahaha. Just FYI he still fits in his Halloween costume from last year!


It has been so long since we have been able to update. It just seems to be getting more and more difficult. Time has been a premium and we have been in a survival mode with the loss of night nursing over the past few months. We have had to juggle staying up all night and then struggle not being able to sleep with appointments and therapy during the day. After 7 weeks we finally have some coverage, but staffing continues to be a problem and seemingly impossible for the agency. Unfortunately there is no alternative, they are still the only agency accepting vent patients. Our advocacy woes with them continue and their incompetence shows daily, but what can we do? We have caught them yet again in an outright lie about how diligently they are working on the case, but they don't care and there is nothing we can do. Unfortunately Elias care needs have intensified overnight and is much more critical with the seizure risk protocol. These are the doctors words, not ours and we are working with her to try and enlist her help in pressuring the agency over Elias safety. We have to try, but not expecting it to work. They have a mind set and it has not swayed in the almost 2 years we have been with them. The excuses are the same, yet there is no action on their part in an attempt to change and improve the issue. Instead they are content with being passive and using the same excuses repeatedly, yet contradicting themselves by telling parents 'we don't hire nurses unless they can work nights and weekends.' If this were true then we do not understand how there can be a problem staffing weekends and nights. The nurses that are working here have never been told they "HAVE" to work weekends, they were given a choice. When they said no, the agency did not push. They simply said 'okay.'  I'm going to stop there I don't want to get into a rant. Just know it is growing tiresome and it is frustrating knowing you are helpless to change the situation and at the mercy of a failing system. We are not the only family like this. We know countless families in and out of the area experiencing similar issues. While that makes us feel a little better knowing it is not just us demanding too much, it is sad that no one is raising a red flag for such a widespread issue.

Preschool - the past two months have, as expected been a learning experience. As we mentioned in the
previous paragraph and post with the look of our calendar the schedule is packed! We knew it would be busy and it hasn't disappointed. It would be more manageable if we were up 24 - 36 hours at a time. We have managed quite well all things considered. A lot of daily chores and cleaning has been sacrificed, focusing on the priorities, but that is what you have to do when you face challenges. The biggest issue has been scheduling. They all want to come at the same time or limit the days they can come. Again we are working through this and are making progress. We have definitely learned a few things that we will be asking to avoid next year and will fight to write it in his IEP next year. The biggest issue is the co-treats. While these are effective periodically between 2 disciplines, every time is over kill and ineffective. OT & PT especially. They often are competing for Elias attention when they both are here. They each have very different focuses and while they claim to do this often it is not working for Elias. He ends up running away from them and standing in a corner. It stresses him out a bit and very overwhelming to have someone work with you and then suddenly another person pops in the picture trying to make you do something different. You can see it in his face. We have addressed this and they disagree with our assessment. A few weeks ago the PT was forced to come out alone and she commented how engaging,  productive, and focused Elias was. We took that opportunity to stress our point again, but it was brushed aside it seems. The argument we are presenting now is that he is approved to have two 45 minute sessions of each, PT and OT. By co-treating he is being cheated out of time, given that each of them is battling for his attention. It is comical to watch, but the reality is it is not effective. We can't believe that no other parent has ever brought this up. He is only getting 90 minute session with both simultaneously with the focus is back and forth. Not the 180 (45 x 4) That is not giving him the time he needs, or any patient for that matter. He is likely not going to reach his goals on his IEP due to this and while it is a set back for Elias, it just may help strengthen our advocating point.

Elias development overall has been incredible. His communication is constantly improving, expanding and evolving. Gesturing and him physically taking us to an item he is requesting has become a knew favorite form of communication. Just like we use different methods to request things, he too is learning to choose from the various tools - picture exchange, gestures, signing - for what he wants. It is amazing to watch. His joint attention is also becoming more purposeful. We are beginning to work on getting him to understand that we also need to have the ability to decide when something is all done or finished. Not an easy task when you have no ability to explain why you need to stop and activity. He simply sees it as done. Impressively he has grasped the concept surprisingly well given that barrier. He reacts appropriately with mild tantrums or displays of displeasure consistent with a 'typical child'. His independent play has never been  a problem, and we are seeing continued growth in this area as well. Baby is a word he says quite often and he also says something that resembles bubbles. Bubbles of course being one of his favorite activities and one of the most motivating tools we have in teaching.  His saying these two words along with many sounds (ah, a, b, ch, du, da, eg, j ,la, lu, m) tells us that the listening therapy (Aural Rehab) is now showing dividends. We have some recordings that we are trying to put together to post. We have been doing AR for over a year and a half and the progress has been questioned more by the providers than us, but it has been reminded that this is going to be a slow long process. Once we all focus back on that point and see these things, most of which he has just started in the past few weeks it is reassuring and promising. It may take five years but if we continue to do the things we do and work fervently there is hope he will hear and even verbalize. That is truly a blessing and melts away the stress, mental and physical exhaustion. Elias continues to make us proud and thrive beyond expectations his medical limitations should have. There is a great deal more that we could share, as so much has been going on. These have been the key points. As always we keep on pushing. Thanks for your patience, your thoughts, and your prayers.

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.


 

Hello?

This week has been horrible. It began on Sunday with the sudden passing of an FA patient from complications of the 2 bone marrow transplants he had a few years ago.  Every time another FA patient earns their wings are just somber reminders of how devastating and deadly this disease is. Our prayers are with the Barbier Family as they lay Justin to rest this week. Justin's mom has been a huge support to us and through Elias' journey. Our hearts are very heavy for her loss.

On to a very serious issue and potentially disastrous problem. We received a letter in the mail yesterday that was to notify us that Elias medicaid was being discontinued due to insufficient information provided during annual re-certification. We are not even sure what was supposedly omitted? We have left two voice mails requesting a hearing on this matter, but have yet to receive a response. Tomorrow is the deadline to request a hearing with continued benefits until a final decision is reached. The letter was dated July 11, 2011 yet we received it on July 18, 2011. It should not have taken 7 days for us to get this first off, but the hearing deadline is spelled out in that letter as 10 days from the date of the letter. I will call again in the morning hoping to get a call back or better yet an actual person. If they do not call back tomorrow I am not sure we would be able to get the hearing. This is absolutely critical that Elias maintain his medicaid. Elias has capped out long ago of our primary insurance provider. Without it we are finished and Elias needed treatments are in jeopardy, not that we are not already in financial turmoil from all variables and medical expenses anyway over the past 3 years. A lapse in coverage even briefly could create issues for supplies, equipment and services. Very stressful and worrisome this is, until we get it resolved.

I can not remember if we had mentioned this in a previous update so forgive the repeat if so. It appears the school system has misplaced or temporarily not filed Elias paperwork for enrollment. Without it he can not begin services. This was turned into the guidance counselor at the school prior to the IEP meeting which was April 28th. While it is irritating that the school system office does not have this, our primary concern is the fact that turned in included copies of Social Security Card and Birth Certificate required to register. After a week to allow them time to investigate and locate the file, this week they are dodging my calls and not returning voice mails.

Which leads me to another point. We contacted GI 2 weeks ago about concerns we had. It took them a week to return our call and then we were told his GI doctor was on vacation. If they had been more timely in returning the call that wouldn't have been an issue. So medication was ordered for a week to get by until the doc returned. We were told they would call yesterday to check in and get a report to pass on when the doctor returned today. You guessed it no call. I even asked them if I needed to call in when they originally set the expected phone call up. They said oh no we are making note of it now that won't be necessary. Apparently it was. Today has come and gone without a call as well. So tomorrow first thing I get to call and find out why and what the plan to treat Elias is. His speech therapist was also a no call no show today and while I have left a message with her, again still no call back. Bottom line is that it is becoming increasingly more common for his providers to just not call. Why is that? Are we that busy and if so why would you set an expectation of calling someone and just ignoring it. That is just plain rude and unprofessional, especially when it has been more than one day overdue. I know this is a big rant but quite frankly I am disgusted by the manner in which people provide service and hap-hazardously return phone calls. Sorry for the rant I will end it there.

If all that wasn't insane and hair pulling enough Elias felt like we needed a little more stress. He has begun yet another cluster of breathing episodes. While the number of times he has stopped breathing has been lower than normal (thank God) with everything else, particularly the medicaid problem, everything is a bit more charged. Poor Elias. We hate seeing him like this. It just sucks the life out of him. Hopefully the week will improve, but for now we just watch over Elias and try to go on with business as usual.

Medical Regrouping and Pre-school considerations

After last weeks chaos medically we have finally regrouped and are working towards a solution. Here is what we learned. The C-diff is still active so we must go back on the vancomycin for a month this time 4 times a day. Afterward we will taper or pulse dose. With the feeding issue that had disappeared returning GI wants to push the timeline up on the surgeries so he can do a scope in the O.R. and try to figure out what is going on in there. This could be as early as the end of this month.