Wednesday, July 24, 2013

Tomorrow Will Be Revealing!

Tomorrow we will be going to get the test results from all the psychological testing from Dr. Blackham concerning Joseph.  In the meantime James went in and had his assessments completed.  We have appointments scheduled for Margaret. 

Today all the children went to visit Dr. Laks.  She was recommended to us because she is used to handling complex medical cases.  John took all the children to the appointment and LOVED the doctor.  She is willing to help work with us and coordinate care.  Thank goodness! 

This is just a short post but tomorrow will be the test results. Can't wait!

Tuesday, July 16, 2013

Joseph In The Spot Light!

My Sweet, And Apparently, Complex Boy!
So I am taking a moment to write on my lunch break. I have all sort of interesting news and it has been backlogging.

Work is going well. I really do enjoy my job but I have found it leaves me feeling rather stressed. I am going to see what I can do to work on the stress and anxiety I feel (the anxiety keeps me from sleeping).

Some news bits that I think are important...

The first is the ruling from Doug C. vs Hawaii (12-15079). This is a great victory for parents with special needs children! This case ruled changed several important issues. One, A school does NOT have to hold an IEP meeting before the annual review deadline IF a date for the parent to attend the meeting cannot be arranged! Second, if there are scheduling conflicts in holding an IEP meeting the priority for scheduling is to the PARENT! Not the school! Third, the school cannot hold an IEP meeting before the annual deadline IF the parent has expressed interest in attending. Also the school cannot "make-up" the meeting with the parent by holding another IEP meeting within 30 days of the annual meeting. Finally, there are a few other issues regarding Due Process but hopefully no one will have to make it that far with the school district! You can read more from Wright's Law (click here!)

A great article on a child born with an inborn error of vitamin B12 that was detected (JUST BARELY) by newborn screening! This is why it is important to push states to have the most comprehensive screening for newborns available! This article is found in the American Academy of Pediatrics (March 13, 2013). To read the article by Dr. Christine Armour click here!

The blog, A Day In Your Shoes, posted a printable list of Specifically Designed Instruction (SDI) that you can take to your next IEP meeting. Here are 500 ideas that can help you tailor the instruction in school to help fit your child's needs. Thank you for the great ideas! To see the list click here!

Giving a shout out to Tilty Cups. I love these things! They are a wonderful cup that helps to teach children how to drink out of a cup AND the design of the cup is simple making it easy to clean. I have been using Tilty Cups for my children since they were two! To see their website click here!

Since the interview with ACHSSSC (or whatever they are called in AZ) on June 24th I still have herd nothing back. This was after I was told I would hear something in two weeks. Sigh! I wish medical people would actually call me back like they say they will!

Joseph went to the Melmed Center on July 2. John and I took him back and talked with another developmental pediatrician there. I have been seeking help to try and figure out what is wrong with Joseph. The specialists keep telling me it is because Joseph is premature and I think they are full of crap! Even in talking to the developmentally pediatrician she told me the SAME THING! Said I was not wanting to hear the truth (okay, that is my wording but that was HER meaning)! For SO long I have felt like I have been waging a one person battle to have the specialists recognize something is wrong with him and for SOMEONE to take an interest and DIAGNOSE him! John and I left that day with the expectation to receive a letter outlining the tests the developmental pediatrician would like to run on Joseph. The doctor from the Melmed Center did agree with me that there were some things that had not been tried such as examining him for mitochondrial disease, metabolic issues and cerebral folate deficiency. She thought it would not hurt to look at these last few things but I had to be willing to accept I may never find an answer to what is wrong with Joseph. I know what she said, I realize that may be a possibility, but I will continue to fight if there is ANYTHING else to examine and look at!

July 11th all the children went to see Dr. Blackham. She is a psychologist. The doctors at the Melmed center wanted Joseph tested for autism but did not feel as though they could make the diagnosis themselves. At the first meeting Dr. Blackham asked questions about all the children including the pregnancy, their weights, their development, milestones, and how they were functioning now. John explained part of what we were looking for...a current assessment of the children and how they were doing. How we were interested in how Joseph was functioning in particular since when they Clark County School District last evaluated him at three he was not walking to talking. So Joseph went first. He was to undergo four hours of observation and testing. Testing was to at least include cognitive (IQ), verbal (receptive and expressive), autism rating scale and I am not sure if there were anything else.

July 15th, Joseph went in for his first tests. John also took Joseph's medical book to Dr. Blackham so she could see his previous diagnoses and testing. It is a lot!
July 16th, Joseph went in for his final set of tests. At the end of today's testing John took them home and then texted me. This is what his text said:

Initial meeting with her...she is confused by him. Says she could diagnose him as autistic but is not sure autism is the cause. Mitochondrial is definitely a possibility. Regardless he NEEDS services NOW. She will make a referral to DDD. It might speed things up. (Little does she know I have been fighting for NINE months now to get him services here! It is not the DDD but ACHSSS is holding things up. They suck!) She wants us to go to genetics for folate deficiency. (Don't need geneticist for that really. Just a doctor's office who is willing to do a blood draw for me). Wants us to do an EEG to rule out seizures (I had thought about silent seizures before but the neurologist in Las Vegas would not order the test for a 24 hour EEG. He thought it was unnecessary!). Said he got "lost" a lot. She wants to know if he is having small seizures that disrupt his concentration. Also agrees that prematurity is NOT the proper diagnosis (This is where I cried! After 4.5 years of fighting, after 4.5 years of trying to get specialists to listen to me....FINALLY, FINALLY someone agrees with me!). There is something VERY COMPLEX about his condition and she is frustrated and sorry she can't just say, "he has THIS". She said Sylvany's diagnosis was a little off (I reminded John when she did the assessment on Joseph that was BEFORE he could walk or talk! I said I would think that would make a HUGE difference!) and she will do the ADIS but can diagnose him as autistic based on previous medical treatment.

John also went on to text...
Sad, though, just like everyone else, she doesn't know what is wrong with him. She can't imagine how frustrating it must be to want to solve the problem without knowing what the problem is. She was very apologetic.

Does diagnosing Joseph with autism means nothing to me really. I can keep him in services for DDD and ACHSSS with his diagnosis of Cerebral Palsy. All I REALLY care about is getting my baby the services he needs so he can get better (or at the very least be better than he is now). All I want for his is a normal life and if he can never have that then I want a life as close to normal as I can give him and he can get. He deserves that!

James is next in the cue. He will be going to see Dr. Blackham next week. He will be going on July 22nd and 23rd. It will be interesting to see where he tests out. James seems to have VERY good expressive language and reading skills but POOR receptive language (like he recently tested out at 18 months old!). Plus I want to see if James might be gifted or he just has hyperlexia. On the 24th all the children will go to see Dr. Robin Laks. She is a pediatrician who specializes in medically complex children. So I thought we could go and see her. Finally, on July 25th, John (and hopefully myself) will be going to see Dr. Blackham for the results of Joseph's testing. That will be interesting!

As a final bit of news I had a friend on Facebook excitedly mention that her son was chosen for a genetic study.  I asked for more information.  Turns out the genetic testing lab is local!  I wrote as passionate a letter as I could muster in an effort to plea for them to consider Joseph as a study participant.  We will see if I hear from them.  Keeping my fingers crossed for my friend AND myself!