Thursday, June 17, 2010

Just a quick posting for those who follow our family on blogger.

Jonah has now gone through two seizure episodes since May 20th. I mentioned the mess we went through on the 20th in trying to get the local ER to give Jonah an EEG. Since then we made an appointment with the local neurologist so we could petition him and his staff to ask for a standing EEG order so the next time Jonah had an episode we could get the test done.

Needless to say, I called this past Monday morning (met with the local doc this past Friday) to assure that the primary care physician had submitted the request to insurance as urgent. I was told they had not so I called Dr. Ho's office to resubmit the request, which they said they would do immediately. Our insurance is supposed to turn around urgent requests in 48 hours.

Yesterday at 4:00 we were all napping and I woke up to hear Jonah whimpering on the baby monitor, I knew he was in an episode. I raced down stairs to check on him, called our insurance rep and asked if the request was ready because we needed to get him to the local ER. Well, of course it had not been processed even though at this point it was past the 48 hour mark. I was furious and after 15 minutes of waiting for a call back (during that time I called back twice and just got voice mail) I called 911. By the time the ambulance arrived they finally had a decision for us and we took off. I was so frustrated, our insurance has messed up so many times with my boys. I called and filed an official complaint with the supervisor of the customer service department. I followed the ambulance up to the hospital and as I was pulling in to the parking lot a cop caught me on my phone. She told me to roll down my window, I did and she asked if I was with the ambulance. I said yes and she said, get off your phone! Of course I did just that and as I scrambled out of my car this same cop pulled around the parking lot up to me and began to yell at me that she could still ticket me even though this was an emergency situation, I nodded and yes, I assume I looked agitated because I was in the middle of dealing with a seizure! She then proceeded to scream at me that I was giving her attitude and she literally pulled in to the street and blocked me from getting to the ambulance (I am not being dramatic her folks, even an ER nurse saw what this cop did and came up concerned about me, the EMT said she this particular cop was known for being plain awful). I told her I understood what she was telling me and appreciated her not ticketing me but apparently that was not enough, she said she would be waiting for me in the parking lot, I said, "That is fine but I have to go my son is having a seizure..." She finally let me get to the ambulance. Are you kidding me? I am sorry I was on the phone with my son's insurance as we are driving emergency to the hospital because he is having a seizure, ok? But treating me like a hardened criminal when I am a law abiding, tax paying citizen because I made a mistake is just ridiculous. Honestly, I did not care at this point. I just wanted to get to Jonah. Sorry for the rant but come on! Anyways, I did finally get in to the ER, Jonah was coming out of the seizure so we scrambled to set up the EEG and hopefully catch something.

To add to our stress, I had an ER nurse who decided she wanted to pester me with questions (she was not even our attending nurse). I am somewhat used to people asking lots of questions because of Jonah's disabilities but when insensitivity is mixed in, it is really frustrating for me although I try very hard to mask my real emotions and instead be as polite as possible. She asked me if I would do IVF again knowing the outcome with the boys (can you believe it?), how did I take care of a blind child and how would someone who is blind function (are you seriously in health care or have you just not had any life experience? how many blind people live very fulfilling lives?), it must be hard for me having such a sick child, how do I do it, what is it like knowing he will need care for the rest of his life. Why is it always me? Is it because I look approachable? Perhaps having a stern, angered look would better suit me so people will leave me alone and not ask such asinine and insensitive questions!


Anyways, we waited until 10:30 p.m. to find out that indeed the EEG showed seizure activity in the right lobe (the area that was most affected by the bleeding after birth). I asked them to consult with his Cedars Sinai neurologist to see what anti-seizure medication she wanted to prescribe. We started him on Keppler last night and my hope is that it will be an effective dose but not an overpowering dose as these meds are known to cause children to be drowsy and not as attentive and we certainly do not need this. We made it home at midnight and settled in to bed by 1:00. Poor Shane had to return to the night shift so he could suspend one of his employees and ended up staying until early this morning. We are taking shifts today trying to catch up on sleep.

I applied for a position with our school district doing clerical work at one of the local elementary schools. We are still trying to research the local school system so we can be prepared for Jonah's IEP in the fall.

Shane continues to apply for work opportunities, I laugh because just last week he applied for a local job and I told him of everything he has applied for he will hear back from the local recruiter. And he did! Monday, the local recruiter called. He is sending on Shane's information. Yes, it would be a great increase in pay and provide Shane with a larger management role in a larger organization but it would still be local! Good grief! So that is what is happening here in California.

We will continue to keep you posted as things happen. We have a lot going on this summer, hopefully we will be able to receive some long awaited answers soon.

God bless, everyone.

Sunday, June 6, 2010

Just a quick posting as the night is already late and I need some rest.

I meant to post photos of my trip back east but I down loaded them to our older lap top and need to fish it out and transfer the photos to the family lap top so I can upload them without problem (our older lap top is so painfully slow, I only take it on trips when I need a spare).

The trip was wonderful. I was once again reminded of how much I miss living in Northern Virginia. The green landscape of back east is something I fell in love with years ago and things were never the same after moving to dry California. I enjoyed seeing the moving and emotional monuments as well as Arlington Cemetery. We were able to see not only the changing of the guard but two special honor wreath ceremonies which were all very spiritual, truly. I am always moved by the young men who march in front of the tomb of the unknown soldier as a tribute to the countless other unknown soldiers who have also lost their lives to war in honoring our nation. We visited the Smithsonians, drove to Amish country as well as Philadelphia (first time, it was amazing to see all the historical sites including Independence Hall where they signed the Declaration of Independence). It was all very moving and reminded me of why I love our great country so much and how grateful I am to have all the freedoms that I enjoy.

I am so proud of baby sister, Valerie. She has worked hard to finish this grad program and her ceremony on the Mall was amazing. The First Lady addressed the graduates and their family and although I do not agree with her politics, she was very touching and motivating. Her speech was focused a lot on giving back to the world and seeking out ways to strengthen communities wherever the graduate may end up being. It was a very fitting, very appropriate message, especially as our world becomes more and more apathetic and less caring of others.

We thought we had turned a corner with Jonah's seizure episodes and two weeks ago he started in to another episode about 9:00 at night. He had gone a month and a half without an episode. We gave him a good 45 minutes of being hooked up to the Pulsox, while monitoring his sats when we decided he was definitely at a point we needed to call 911 and get him to the local ER for an EEG (as his neurologist from Cedars Sinai requested a month ago). To my absolute anger and shock, Shane and Jonah were stuck in a room with little attention until finally Shane made a fuss about getting the EEG going only to find out that they were not able to administer the EEG from the emergency room and would need to page Jonah's pediatrician at 10:30 at night. So Shane sat and waited and finally after 11:30 p.m. they came in and told Shane that apparently they do not have staff on the weekend to give the test. They gave Jonah his Diastat which immediately brought his heart rate down and he passed out from exhaustion. I was at home waiting with Noah and in a complete rage by the time Shane came home at 1:30 a.m. How could this happen? I specifically had Jonah taken to Memorial hospital because they are to have the best pediatric services in the area and a month ago I called and explained our situation and was told by admitting they could accomodate us at any time for the EEG. I was furious, absolutely furious that we had wasted an episode, made Jonah suffer for nearly three hours (about the length of his episodes) without anything to justify what we put him through. I think that night was a turning point for Shane and I. Don't get me wrong, we have been looking for months now, trying to relocate and get to an area closer to a well established children's hospital but that really hit home that this had to become our entire focus. We absolutely cannot remain here in Bakersfield, their resources are so limited and so behind that we will never be able to really provide properly for Jonah without a lot of family sacrifice that includes hours and hours of commute time to hospitals and clinics outside of town. At this point, we are trying to get to a local neurologist who has staff at another local hospital and we hope after meeting with him he will write us a stat order for an EEG and alert his techs that at any given time Jonah could go to the hospital so the next time he goes through this, we can actually get the test we need. Cedars Sinai just did not understand when I called them the Monday after to let them know, how can a local ER not administer an EEG? Obviously the hospital in Los Angeles has no understanding of Kern County, two hours north of them. This episode was concerning to me as I noticed more jerking in Jonah and I really feel that he does seize throughout the episode, although by far the most concerning symptom is the elevated heart rate. I just want answers and I pray that we can work through the local system to get that darn EEG.

Unfortunately, I wish I had other good things to say about the past few weeks but our frustrations have continued to come day after day. The boys continue to have congestion and runny noses which their local pediatrician keeps diagnosing as being ear infections. Well, after three opinions about tubes (finally we chose to pursue the conservative, well respected and well known specialist at House of Ears affiliated with USC in Los Angeles) we took the boys for a second visit this past Friday to Dr. Luxford. He looked at both boys and said, yes there was fluid but not infected fluid and he would not have the boys on antibiotics (although their pediatrician prescribed antibiotics the day before). Noah's ears looked worse then Jonah's this past Friday but again, did not have infected fluid. It frustrates me because I worry it may be affecting Noah's hearing, it could certainly has been talked about as an option by all doctors. And every time Jonah gets sick, he is just plain awful. He gets so upset and the extra congestion, runny nose and pressure in his ears just makes him miserable and awful at night especially. I do respect this doctor and have spoke with other parents, one in particular whose daughter was very similar to Noah and in the end did not get tubes and was fine, but as a Mother I just want to take care of the problem so the boys will not suffer anymore. Shane and I have decided for now to stick with Dr. Luxford. He will see them again in August. He is very conservative and I am grateful for this, I do not want the boys put through yet another procedure unless absolutely necessary.

In other news, we are approaching the boys final IFSP reviews for their early intervention program that they have been attending for the past year. As I said in my earlier post, Noah will not qualify in the fall for speech and will not go back to Richardson but will attend a regular preschool and continue speech therapy through the school district at a local elementary. Jonah, however, will become part of the county programs for the disabled as our local school district does not provide for pre-K. I have had a lot of eyes and ears helping me out with what is turning out to be a huge battle for us in helping Jonah get the right kinds of services which he will require. I was alerted a few weeks ago by someone involved in the IFSP program that the county schools Jonah would be eligible for come the fall where very behind the standard and not really good choices. I decided to attend one of the two, Blair, with our Kern Regional Center case manager (she provides services through the local county regional center). My visit left me with serious concerns about the set up for preschool. I found that the classroom was clutter and not necessarily organized in a way that would give the children lots of area to move freely in their adaptive equipment (which is supposed to be the focus of this preschool program, they use the MOVES curriculum), the school is not in a good area of town and is old (two things that could be worked around) but most importantly was the virtual non-existence of therapists. I was told the occupational therapists that the county has almost never visit the site and that the aides just do "hand over hand" so there is no real OT program, I was told they never have a physical therapist involved with assessing the children and overseeing the MOVES curriculum to assure that the aides and teacher are working with the disabled children appropriately and helping them really reach their full potential to be functional in the classroom, when I asked about speech therapy they pulled in their speech therapist who said they did a once a week, half hour "group" session and she had really no concept of oral motor/sensory needs of the children nor did she provide any of said services. I found that the first hour of every day was spent "feeding" the children because they come from anywhere around 8:00 to 9:00. So what happens with the child fed at 8:00? The answer is obvious, they sit after eating and waste 45 minutes of time. I was so completely overwhelmed by what little was being done that I immediately started making calls to district contacts as well as the IFSP/Richardson Center principal who will organize Jonah's assessment team for the fall. I made sure the current principal understood that the assessment team is to include vision (which he qualifies for and Blair provides maybe a once a week vision specialist who helps the kids on light boxes but he could easily qualify for several times a week), occupational therapy, speech therapy and I want physical therapy but this is going to be a battle as the current principal said they do not have PT's on site and I was "welcome to bring a representative to Jonah's IEP with their assessment." Well, we are doing the research and as long as this is something protected under law, the current principal and her services will be required to obtain said physical therapist to provide the assessment and attend the IEP. Originally when I spoke with Richardson's principal, she told me that their team consists of a school psychologist, the current infant program teacher and a school nurse. Are you kidding me? Your most severe group of children and you have no one representing their gross and fine motor needs which will be necessary to learn in order to function in a classroom? I was told I would have to put an educational component behind every request, no problem. How else is my son to learn to hold a pencil, write on paper, go to the bathroom, go to the lunchroom or playground if they cannot function and are not learning said skills? How can he learn the curriculum if it is not being adapted for his visual needs? I have absolutely no doubt that with the law behind us and the right representatives, we will bring the district and the county to the table and address what I consider to be an awful neglect of the severely disabled population of Kern County. It is almost sickening what is not being done and the sad thing is, I have been told time and again in off the record conversations, the problem is the county/districts locally have never been challenged and that is how they get away with what little they do. Not with my child, not ever with my child. So needless to say, we have made several phone calls which have included our local district special education coordinator (who did act genuinely concerned and admitted she had not had a Blair child in some time and wanted to be certain his every need was met, she said she would be spending the next few weeks researching) to the current infant program principal to private calls with therapists who are giving recommendations to calling every other disabled preschool setting to see what our other options are. I even called and really grilled the Blair principal about the curriculum and lack of therapist involvement, expressing my serious concern over the setting. We really have a battle ahead of us but I feel that more than likely with our education, drive and dedication we will get what we want for Jonah. It also helps that Shane serves on the Kern Regional Center Board and has met with their director asking specific questions about how to plan and execute Jonah's IEP so he does receive what he needs. He is to meet in the next week or two with a retired county employee who headed the regulation committee that oversees all special education programs. She was supposed to be phenomenal as she had the special education background. The gentleman who has taken her place does not and although well meaning, we have been told he is not doing nearly as good of a job making sure such programs are providing the services they should be providing. So Shane will meet with her for lunch and really strategize about how to get around the district's/counties ways of refusing services and understanding exactly how each functions and what their skeletons really are, etc. Thank goodness we both are starting now on this process as sometimes thinking that we only have until September feels like too little of time. I have had interesting comments from those asking why I am starting so early, well, I reply that if we knew Jonah's required services where in place I would not need to start so early.

So as you can see, this summer is packed with many things to overcome. I am sad to say that I am also looking for part time work. This past year has been very hard on us. Shane did not receive his bonus as promised from Langers and with Blue Cross changing their co-pay structure on their health care plans, we have been really hurting over the past few months. Jonah's therapy co-pays are costing us alone an extra $400 a month and that does not include any hospitilizations for Noah, Shane or I. We do have MediCAL as secondary insurance for Jonah but Bakersfield is just not established enough, so most therapy groups or medical groups here do not take the state insurance. I am applying within our school district for clerical work and at doctor's offices. I really need the insurance so hopefully something can be arranged that won't affect my time too much with the boys as they both will have preschool starting in the fall.

Thank you for your prayers. Please keep them coming. We have many, many challenges before us. I often think of the scripture in Doctrine & Covenants 82 which states, "For of him unto whom much is given, much is required." Yes, I have plenty of moments where I think: "We certainly do not have incredible wealth, yes more than most of the world which I guess does make us rich but not more than your average family, nor do we have incredible wealth when it comes to the health of our children but if I really listen to my heart I know that we have been given much in way of faith, spirit, the gospel of Jesus Christ and the knowledge it brings us. Yes, we have our challenges but God is with us and trusts us with so much because of our faith. We pray to live up to what he sees in us and we thank you all for your continued support in helping us along the way.