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!

Going Back to Work!

After working from home basically full-time for the last three weeks I am thrilled to be going back to work on Monday. It has been tough to deal with work and stress from the last three weeks doing multiple job.  I am thankful John is here to help! 




Monday (June 24) was a stressful day.  I got up and COMPLETELY forgot the medical lady from ACHSS (I think that's right) was coming. I got up and immediately started to make the children breakfast.  I was finished making breakfast and ready to feed the children when she arrived.  I feed them some while she asked me questions.  Nothing like having a guest over right after you got out of bed and un-showered sitting in your pajamas. To do the medical interview for all three children, along with making copies of the medical information I had, took four hours.  It was long!  I was told I would hear back in two weeks.  I hope so!  I have not been able to get any therapy services set up for the children since moving here nine months ago.  It is ridiculous!  There really aren't any therapists on my private insurance.  I HAVE to be signed up through the DDD and DDD will not help me unless ACHSS is funding the services. I hope we can get this all straightened out!

Friday (June 28) I spent from noon to five calling all sorts of people trying to get appointments set up.  I will
be able to hand this off to John on Monday.  I had to call my insurance, United Healthcare of Arizona, for state employees, and I have to say I am NOT impressed.  I had to call FOUR times to try and find therapist.  Therapists who are both pediatric AND EACH of the specialties (OT, SP, PT and Feeding). I FINALLY, on the FOURTH phone call, found a center that offers ALL the therapy services AND is pediatric.  I called them and they are booked.  The woman I spoke with said the best way to get in and get services is to have services through the DDD.  I laughed!  I said I had been trying to get services for the last nine months and I was the closest I had been yet.

My first call on Friday was to Dr. Salevitz.  He is a pediatric eye doctor.  I have to get all the children to an eye doctor.  I want to see if Joseph can do an eye test now he can talk.  Plus we are not sure if he is color blind or at least have the color portion of his vision impacted.  Next I called SARRC.  They only told me of other people to call and see if I could get help.  Then I called Dr. Hancke's office.  I have to set an appointment with the endocrinologist to discuss Joseph's stature and pay my bill with him.  After making calls to United Healthcare I finally found a therapy office, Bright Horizon Therapy, but I have NO idea when we can get in with them. Got to call in a week and follow up (that is how long they asked me to wait). Next I called Dr. Jay Cooks to see if I can get Joseph in for a follow up with a neurologist.  I will see about working Margaret in if I like the doctor and finally James.  I would like to have an MRI of James to see if he suffered any brain damage (hope not but then again I never thought Margaret would have had brain damage either!). Finally I called Dr. Robin Laks office and see about taking all the children there too.  She is a pediatrician in the area that deals with medically complex children.  I was told she is very good and I am excited to get the children in to see her.

So that is how I spent five hours of my Friday.  I did not even call anywhere near all the people and places I wanted to call but it is a good start and John can take it from here!

Wound Up As Tight As She Can Go...

House bursting at the seams...LOL

I know it has been awhile since I last posted.  There is just so much happening that when I am not too tired to write about it that the thought to cover everything that has happened since the last post leaves me overwhelmed.  When my day is normally over I have no desire or energy to write at that point.  Today I am taking the time because I am at home watching my children while working.  It affords me a bit of time to work on the post.

At the moment I am wound up about as tight as I can go.  I got up this morning with an overwhelming urge to cry.  I am not entirely sure why...what brought that on this morning in particular.  I think it is because I am tired, mentally and physically.  That I need a break from people, from work, from my life in general. 

Since my last post I found out I am diabetic.  It is had to admit but its true.  All the women on my mother's side of the family are/were diabetic.  I knew eight or more years ago I had problems with too much insulin production and started to take metformin.  Now here I am, at 40, diabetic.  It is a bit depressing.  I have been trying to manage my diet and stay away from sugar and carbs but it's been hard.  Ironically is it a bit easier when I am at home because I know I can make food and have a bit more control over what I am eating.  When I work I often have to grab fast food because I don't have time or energy to make things. I really have got to work on that!  I know I am slowly killing myself but it is hard to change (as she sits drinking sweet tea [hey, at least I used the equivalent of Baking Splenda]).

After having Bailey, who is no longer working for me, and her grandfather live here we have added two more early twenty-somethings to the picture.  That makes five adults and three children (the little kids) in the house.  I have a BUSY house...practically bursting at the seams!  After taking care of the little children today and not getting near enough actual work accomplished I am now sitting in my room writing this blog post and then I am going to work on...well, work. Don't forget also that John will be coming and adding himself to the menagerie at the end of the month.  It is interesting that with all these people in the house I still feel alone and stressed.  The older kids (twenty-somethings) are nice but have their own agenda.  Bailey's friends, in particular, are quite nice and rather interesting to talk to when they have time. It's weird how being in a house full of people can still leave you feeling lonely.  Bill goes to work, the older kids stay in their room or leave and I am left to hang out with the little children who slowly drive me nuts during the day.  I don't think they would drive me as batty if I knew I did not have work (real work, the kind that pays the bills) to complete. 

Speaking of going nuts...

A friend posted this on Facebook today.  It came just in time as the children were driving me to my breaking point...

A Hundred Tears:

A hundred times I told him
a hundred times and more,
"Don't hit the dog, don't run away
don't throw that on the floor!"

All morning he was tireless
he never stopped to think
he broke my lamp, he spilled his milk
dumped the kitten in the sink.

He ran around the house all day
without a stitch of clothes
he flapped his hands and sang and cried
and fell and bumped his nose.

At dinner came the moment
when I'd simply had enough
he refused to eat his dinner
and that's when I got tough.

I sent him off to bed at once
despite his tearful pleas . . .
I let him cry himself to sleep
it brought me to my knees.

When silence fell upon his room
I slowly crept inside,
and gazing on my little son
I lost my foolish pride.

A hundred tears I wept right then
a hundred tears and more
for this little child who spilled his milk
on my nice bright shiny floor.

Who am I to scold my son
for things he cannot know?
he looks to me for patience
to help him learn and grow.

A hundred prayers I said that night
a hundred prayers and more
Help me Father, teach my child
this child that I adore.

And as I left his room that night
I kissed his tears away
and promised that tomorrow
would be a better day.

~By Susan Meyer


Nothing like a well timed reminder that I need to be patient with my children and others. Tomorrow is another day...

Back to the Melmed Center and Other Interesting Things!

Being Yelled At By The Big Boss
Photo Credit: eHow.com

My life is still busy.  I am taking a timeout for a bit this weekend so I can get some of my thoughts down on paper.  I have been working on my big project for work.  It has been SO stressful the last two weeks.  As the deadline for my project was coming I kept finding out people were pushing up the due date.  The environmental consultant working with me suffered an anxiety attack the night before the project was due and I was so stressed out my eye was twitching (the sign *I* get when I am SUPER stressed) and my back muscles between my shoulder blades was sore letting me know the muscles were in knots. Yesterday (Saturday) I left the children for a bit and had a massage done.  I could have spend the money on other things but I BADLY needed to destress from the week.  Starting on Monday (April 15th) I got to a meeting and was later yelled at by the BIG boss.  During the meeting my Section Manager was called in and I was called to task for what had been going on but in my defense there was nothing I could have done better and my Section Manager stood up for me.  I am VERY grateful he did that!  Monday is also when I found out my deadline for my project (originally due April 22) was pushed up again to Wednesday evening (April 18).  The consultant and I scrambled even harder to get everything completed on time.  We did make it but not without getting yelled at by several people along the way.  Stress from this project, for everyone working on it, was running high!  Even now we are not finished but the bulk of the project, the part we said we would complete, IS finished!  I swear I have NEVER felt such a sense of accomplishment in getting something completed!  This project will continue to need additional work but at least it should not be as stressful (I hope!).

Recap of things....

April 4th I was able to speak to a human being at the Phoenix Children's Speciality Clinic.  Last time I called I did get to speak to someone but only after I was on hold for about 45 minutes.  I am not lying!!!  I was at work and had the call on my cell phone bluetooth so I could listen AND keep track of the time.  I was able to see the time when someone finally answered the phone.... 43 minutes and 18 seconds.  NEVER have I been on hold for SO long!  At that call I was told someone from the office would call me back in two weeks (after my insurance gave approval for the referral) and I could set up an appointment for the children to see the psychologist.  I was asked (by the Melmed Center) to have the children tested and evaluated by a psychologist to determine cognitive function and academic skills. I waited until three weeks had passed and called back because I had not heard from anyone. Honestly I NEVER expect a doctor's office to call me back, because I have not seen it happen...lol.  I called back and got someone in a mere 12 minutes.  I was pleased to hear the insurance had approved everything so I got to set the appointments for the children.  They started July 11th and go further out.  Just glad to get the ball rolling on that one!  Finally!

April 10th I had my appointment to my Primary Care Physician (PCP).  Since I was a new patient I had to wait THREE months to get in to see Dr. Baier. When I was SUPER ill over the winter and went to the Urgent Care I was SO sick that I should have seen a doctor sooner.  Even when I went to the doctor at the Urgent Care I was not given the medicine I needed to stop my coughing including an inhaler.  From the time I was last sick to now I cannot breathe right.  I told the new PCP and she said not to worry.  It might be the pollution level in Phoenix or allergies.  Not to worry???   LOL   She does not know me well!  SHe give me a prescription for an inhaler.  That will be much nicer.  The new doctor said if I was ever sick like that again to come and see her IMMEDIATELY and she would get me in!  Wow!  That is a HUGE relief!  I also got a bunch of blood work I have to do so I set an appointment for this Wednesday (April 24).  Got to get the blood work completed and check back into the doctor.

April 17th I got James's paperwork in from the Melmed Center.  It is the write up on the clinical diagnosis that was sent to the children's regular pediatrician.  It basically stated that James is very bright but he is fixated with certain items of interest, he cannot hold a 2-way conversation, he does not maintain eye contact during a conversation and socially he is very immature. With all these characteristics James meets the diagnostic criteria for autism.  So James was officially diagnosed with autism for the state of Arizona.  Just one more child to go...Joseph!  Got to get his paperwork that was sent to the regular pediatrician.

Photo Credit: merchantcircle.com

On April 18th Margaret went to her appointment at the Melmed Center.  I was glad she finally got to go.  It was ONE of the worst times as far as my big project was concerned because I needed to deliver information to and be seated in a meeting in Holbrook.  Instead I pulled several stings and told people I could NOT go because I had set this doctor's appointment with this specialist about 4.5 months ago so I was NOT going to miss the appointment now!  I took Margaret to her the office appointment.  It was nice to just have Mommy and Margaret going out alone.  I am hoping I will be able to do that more with her soon.  Anyways, we leave the house and Margaret is whining.  Bailey had told her she was going to the doctor. This got her upset because she was starting to worry she was going to get shot with a needle.  That is a long story on how/why that would bother her so I will skip it for now. We get there and I reassure her that she is going to be okay.  We went inside and she say the large fish tank.  She kept asking me questions about the fish.  She asked me where they lived, what were they doing and she kept saying over and over again that they were happy...LOL.  We met with the doctor there and she did fine with the physical exam expect that she kept staring and whining at the resident developmental pediatrician that was following Dr. PeBentio.  Once we get to Dr. PeBenito's office and Margaret saw she could play with toys she settled down.  The doctor and I start discussing Margaret's medical history.  The good news, compared to Joseph's medical history, Margaret's is rather easy. I told the doctor that Margaret had been diagnosed with autism in Nevada by the school district AND a pediatrician but the state of Arizona would not could that work so we were in her office today. I said I believe that autism, for most people, is not a disease but a symptom of something else going on.  I told Dr. PeBentio that I had genetic testing on Margaret completed and nothing was found.  I next had an MRI done and she was diagnosed with hypoxic brain injury.  I explain what type and where she has brain damage.  I said her brain damage explains her impulsive behavior, short attention span (though it may be auditory processing problems but not sure at this age and the doctor said she do not test until children are eight), and speech issues. The doctor agreed with me.  She said she had no problem with giving Margaret her diagnosis of autism.  So I walked out of the appointment with her autism diagnosis and that was one of my main goals. Yea me!  Hopefully I can get her services here.  It has been SO hard to get therapy services for her here because Phoenix does not have many private therapists.  They seem to be working with DDD or the school district. Since Las Vegas had a school that graduated PAs and therapists while Phoenix has a school that graduates doctors of various specialties.  Some of the surplus therapists from Vegas NEED to move to Phoenix!!!   I am going to have to deal with DDD and get the children on the Long Term Care system here to get them the services they need.

This brings me to what I did on April 19th.  I called their Long Term Care case worker and told her I was sorry I did not get the paperwork filled out but I had a HUGE project and I had to get it completed first.  After a bit of a conversation she said she understood and was going to help me.  She closed out their case and started it over again.  I told her I would stop by her office Monday afternoon since the office headquarters is not far from where I work.  I told her I would bring in all their information.  This would be helpful in get the paperwork going again.  She also said she would do what she could to expedite the process.  Heck, even if she does nothing the offer to help was GREATLY appreciated!  So this is what I have to do Monday along with my work stuff.  This is why I have been busy lately and not blogging.

Something else that has been slowing me down blogging is John.  No, it is not his fault really....I just enjoy spending time with him and I rarely have any time alone to blog (since I am trying to relax I am making it a point to blog; which I find relaxing).  After the work week I rarely feel like dragging out my computer and working since I had been on a computer all week.  When John comes to visit (which as been every other weekend lately) I stay and hang out with him. It is amazing how much things have changed between us.  I don't think we were going to make it before/during the dark days of our marriage but I can see it is possible for us to be happy again and for a LONG time I was not sure that could happen.  I enjoy spending time with him and talking (listening) to him.  He and I both realize how important it is that we start communicating again.  That ONE item alone has made a difference!  Seems to blatant and simple but we just could not manage it for the last few years.

Now my dear reader you are about as caught up as I am on my life as I am.  I know, that is not saying much at the moment but I am living by the seat of my pants.  I will be going into work tomorrow by 6:30am or 7am and work until 4pm to 5pm.  Each day I have a LOT to do at work and then I try and manage my home life and the children as best I can.  Each day passes too quickly.  I miss the children.  I wish I was there with them more.  I am hoping things for work will slow down after June and I can spend more time focused on them and John too.  John will be here for the summer and hopefully coming to stay. One day at a time...one day at a time...it is all I can do and slowly... I am making it...

Picture from our trip to Tumbleweed Park in Chandler today.
Glad I got to spend some time with them today and wear
them out before bed tonight...lol. 

The Day Before Monday...

Photo Credit: ReeseAndrews.com

Lately that is how I have been feeling about life and work.  The weekend is NEVER long enough, I have too many errands to do and I am wanting to accomplish more than I can.  I have taken the children to several appointments.  Actually, just recently, John was kind enough to take all the children to the dentist for me.  I went with him when we had to take James and Margaret.  James was being a bit of a pain but Margaret did great for her.  Normally she vomits somewhere along the way but this time she kept her cool and was able to get her teeth cleaned.  I was amazed! James also did well too.  Both children allowed the dentist to look at their teeth, take x-rays, clean their teeth and brush them with the rotary brush (this really surprised me because I thought the noise would bother them). The good news is there are not problems with the teeth! Yea!

The next day Joseph went.  He did a good job. He did not complain about having his teeth cleaned.  The dentist said his molars were not infected with cavities but they are demineralized.  He will be having a problem soon with cavities I am afraid.  I need to see what I can do to strengthen his teeth.

Work is a whirlwind at the moment.  I worked a lot of hours recently but if I can get this project pulled off it is practically historic.  I want to spill more about what I am working on but I don't think I can until this project is over.  It should be completed by the end of the month.

Having Funs Showing Off the New Shirts They Made!

Where did the last month go???

Photo Credit: Chasedumont.com

When it becomes a long time since I last made a journal entry it becomes harder to get started because I know there is a lot I want to say but I never seem to have time. I get up at 5am-ish and leave the house no later than 6am so I can be at work by 7am. I work until 4 or 5pm and drive an hour home. By the time I get home, feed the children and put them to bed the small window I have to myself I do not feel like typing on the computer. Though I HATE the hour commute each direction each day I LOVE my job. I can barely say how rewarding it is to be working in the career field I went to school for AND be good at what I do. I have had several people in the office in the last two weeks tell me what a great job I have been doing. That really makes me feel good!

So let me give a brief run down on what all has been happening.

February 12 - I took the kids to a pediatrician. He is new to us and we had a great visit. I am happy we went there. As I have gone around to other specialists they know the new pediatrician and say he is a great guy. How is that for giving you confidence in your primary care doctor!

February 15 - John came to Phoenix for the weekend. We are working hard at re-building our relationship. I am hoping it can happen (for our sake and the kids).

February 19 - Joseph went to the Melmed center to be evaluated. Dr. Melmed examined Joseph and said he may be labeled as autistic. He would need additional psychological testing. It really saddens me to hear this. Mostly because that is not what I think is wrong with Joseph. To me autism is a list of symptoms of a disease. I want to know the disease (root cause) on what is going on with my baby. I am glad of all the improvements Joseph has made in the last year and a half but I would say he is now, at least linguistally, where Margaret was two years ago. I am hoping he will continue to rapidly improve with his speech. I have contacted a psychologist to do the additional testing. I am waiting to hear back from their office.

February 28 - We finally got to see the ENT. I was FURIOUS at first with the doctor's office. I had gotten a call the day before and I asked them if they had received all the information for the Margaret and Joseph to be seen the next day. I was told yes. I had spent an hour in the office last time filling out paperwork and medical releases for them on Feb. 6. The day of the appointment I was called at about 10am. The nurse asked about Joseph's surgery. I said he did have surgery but I did not have the records handy. They were at the hospital and I did not remember any of the details because this surgery happened back before Joseph turned one. The nurse then tells me the doctor will have to have the records and Joseph would not be sent that day. I was LIVID! Here I was having the appointment cancelled on me at the last minute. I got snippy with the nurse but I ended the call very politely. It completely took her off guard because I KNOW that was NOT how she was expecting the phone call the end....LOL. About an hour later I had the ENT doctor call me. He said he wanted to discuss Joseph and would I please call him. He said he was out at the hospital on an emergency and gave me his PERSONAL cell phone number. I was shocked! Every bad thought I was having I lost at that moment. I called the ENT back and spoke to him. I explained about Joseph and why I wanted to bring him in. The ENT agreed with me and said he was looking forward to seeing Joseph this afternoon. I told him his office staff had cancelled Joseph's appointment. He said there was no need for that and to bring him in. He said he was going to call his staff and tell them to put Joseph back on the books. We went to the appointment. I took everyone with me. I had me, Bailey and Alexa along with all three children. In the waiting area James decided to misbehave so I had Alexa take him back to the van for a bit. I know he screamed like a banshee but he did finally calm down. He was able to rejoin us before we went back to the exam room. While there the James was having a fit. He wanted to see the doctor too. Plus Bailey had told him he would get shot if he had to see the doctor...you know what, James agreed. This is the danger to threatening James with something you can carry through. He takes things so literally and he would expect you to carry though with what you promise. He would NOT let it go! When the ENT came in James INSISTED he get a shot. The doctor tried really had to humor him. The fact he took the time to do that made me like the guy! He brought in suckers in the end and James was at least distracted for a bit. We started to talk about Joseph. I explained all that was going on with Joseph and the multiple health issues he was having. Bailey piped in and said I did not believe in vaccinating the children or giving them medication. I explain why to the doctor since he had asked about giving Joseph the flu shot vaccination. When I was done he turned to Bailey and said it was a good thing I was not giving the vaccinations or medication consider all that is going on with Joseph and there are still a lot of unanswered questions. So the ENT examined Joseph and Margaret while we discussed Margaret. Margaret was found to have enlarged adenoids and inflamed sinuses. We are going to treat her with medication at the minute since the only other real option is surgery. I have no interest in having her go through surgery at the moment. I had also given the ENT a list of all the specialists we had seen in Las Vegas. The doctor was nice enough to recommend local doctors for each of the specialties. That was SUPER nice! He is a really great man and I can tell he care a lot about the children. What more can you ask for in a doctor?

March 8th - I get a notice from my insurance about the visit from the Melmed Center for Joseph. I had checked and there was not a problem. The insurance comes back though and says that the Melmed Center is out-of-network and I about nearly panic! The bill is for $660! I cancelled my appointment for Margaret (since it was for the March 13th) because I panicked! I wanted to make sure the medical insurance was going to cover the bill. It took several days and several phone calls but we finally think we have it straightened out. At least the insurance admitted there was a billing error on their part.

March 12th - I called the Geneticist's office. OMG, I wait on the phone for someone to pick up for 40 minutes! I get through and give them information. I find out they are booking appointments into October at the moment. Not shocked but I was hoping for better. They would not schedule an appointment for me until I fill out all the new patient paperwork. I got the stack in a few days ago...WOW! So I will be working on this information so I can fax it in and set an appointment.

You can see the height difference in the boys. It's a lot!

March 15th - I took Margaret and Joseph to the endocrinologist. It was nice because Joseph I was able to talk to someone about all the hormone concerns I have for Joseph. Joseph does not produce growth hormone on his own. When injected with insulin he did produce the growth hormone. So he is CAPABLE of producing growth hormone so I want to know WHY is he not producing the hormone on his own. Normally you have to fight hard to get growth hormone therapy approved since it is expensive ($2k to $3K a month) plus you have to give it as an injection every day. I would like it if we can find the root cause of why he is not producing growth hormone on his own because we might be able to fix that earlier AND we could skip having to go through the expense and daily injections until he is in his late teens. We spent 50 minutes going over Joseph's medical information. The endocrinologist doctor said he had received 60 pages of information on Joseph and did not want to have to read through it all (sad yet kinda funny). I explain in he end my speculation that Joseph my have cerebral folate deficiency and/or mitochondrial disease. The endo. doctor agreed with me that there is a strong chance Joseph could have mito. John said he was the first doctor to agree. I think he was a bit shocked to hear that news too. I had been telling him my suspicions for sometime but I don't think he has been paying a lot of attention to me. I am just the mom who spends too much time on the internet reading and researching stuff but to hear it from a specialist was different.

March 18th - Finally got someone from the Long-term care people call me. They supply the funding for the services I could get the children (such as therapies (OT, PT and ect) along with anything else) through the DDD. I tried to do this before but I could not. I am hopefully I will be able to get it done this time. Got the ball rolling again at least.

Happy Birthday Bill!

March 19th - James had his appointment with the Melmed Center. Since we got the insurance issues worked out I felt safe in taking him. The doctor examined James. It was rather funny. James has become VERY outspoken lately (sometimes good but sometimes bad). In the waiting room James was talking to a little girl (about 8) and then went to her Dad and asked if he could kiss her. What?!?! LOL At least he was polite enough to ask first BEFORE actually trying to kiss her. So some social skills are kicking in! :) When we go back to the exam room the doctor hold his hands so he cannot move away but he would not really ever look the doctor in the eye but let me say the boy developed diarrhea of the mouth! He was saying EVERYTHING including my phone number and our address. I am glad he knows this information but he does not know when it is okay to share and when it is not. The doctor asked me if he has a social filter and I said not really. Then we tell him a story of when James was at the doctor's office with Bailey and he saw an African American. James pointed to him and said, "He is black. We are white. Why is he black?" Know I acknowledge we lead a sheltered life and we could expose him to more ethnic diversity but he has seen African American people before. Bailey apologize and the man was okay about it but it you saw that at the wrong time in the wrong place (especially in the south) you could get beaten up for that. In the end the doctor said he agreed that James is autistic and he is most likely Asperser's. He wrote on his evaluation for James that he is a bright, high-functioning kid. I have to say...I agree. We have another appointment to go back later.

That evening we celebrated Bill's birthday!  The kids were SO excited!  They LOVED eating cake and seeing the candle blown out.  I am glad they had fun!

My Baby lost her first tooth!

March 20th - Mark it on your calendars...Margaret lost her first baby tooth and she is the first of the babies to lose ANY baby tooth on their own (Joseph has his two top teeth pulled awhile ago). I cannot believe she lost her tooth. I am glad she did though. She had her permanent tooth emerging in the floor of her mouth. It looks HUGE compare to the baby teeth. I am hoping the tooth will move forward on its own but I am worried it may not. Will be making an appointment for her to go to the dentist. I got to help play tooth fairy. I had found a small Hello Kitty bag with a toothbrush, toothpaste and dental floss. I put that under her pillow along with a dollar bill. I also placed a dollar bill under the boy's pillows. I did not want them to get it into their head that they had to get a tooth out to get something from the tooth fairy too. In the end the money meant nothing to the children...everyone fought over the Hello Kitty stuff...LOL!




March 27th and 28th - James and Margaret have an appointment with the dentist. They will go first and the next day Joseph will go. It will be good to take them in and have them examined.

Now you are caught up on at least part of what has been going on. I have been SO busy with work and other things too. At least I have been able to get things squared away though. In getting all of this off my mind it leaves me free to think about other things and do write the stuff I need to for work.....Thank goodness! Got to get a paper researched for school and then one written for work. Back to work for me...

I Had A Moment Yesterday...

This post was written on February 14th. Got to catch up on my blog. Swear I need more hours in the day and get over this BLEEPING cough!...

For a hot moment yesterday I was Queen of the world... Well at least I felt like that.  LOL. I was telecommuting to work yesterday . The kids had been SO sick and so had I .  That morning I slept in for a bit since I did not get to sleep until 1:30am  because I was at the hospital with Margaret.  I woke up and knew there was a vitality important project that was going in art work and was EXTREMELY time sensitive. I went down to Starbucks so I could work. Just add things for my project really start to heat up I have to leave and pickup up the children so I could take them to their pediatrician's appointment. So I leave and very the children to the pediatrician. Bailey comes with me. This is the first time to this pediatrician. I have NO ideas what to expect!  I am in my phone checking my work emails and trying to fill out new patient paperwork . Bailey is trying to keep the sick children under control. We get everything done and submitted. Shortly after submitting the paperwork we were called back. The kids were weight. James was about 42 pounds, Margaret was 31 pounds, and Joseph was 26 pounds. I was disappointed to hear their weights.  In the last four days Margaret had lost at least four pounds with all the vomiting. Joseph had lost two pounds since his greatest weight. The new pediatrician came in loud and boisterous.  I tell him I am new to the area and I was looking for a good pediatrician that was close to the house. I needed someone who could coordinate care for Joseph and get referrals/other paperwork completed as needed. He said he world be able to do that.  I told him what brought us into the office that day... Nasty cold/flu symptoms. I said we had Margaret in the hospital the day before getting fluids.  I told the pediatrician what I had observed at the hospital.  That as Margaret was getting additional fluids she was starting to sniffle again, once that started the coughing began and shortly after more vomiting.  The pediatrician asked if I was going to take her to a GI doctor and I said that was on my to-do list.  I said I had an appointment coming up with an ENT doctor for Joseph and Margaret.  We had a really nice visit with the doctor.  He was able to write us a prescription for cough syrup for the children.  I am SO happy for Margaret.  Can't wait to get her to the ENT.

After we left the office I was back on my phone checking my work email.  I was able to check the work I needed to and give approval.  I was on it and I called the consultant I was working with and told her what I needed done since I was no longer at a computer.  In the end everything got done for work while I was out. Through the use of my phone I got all my work done and looked like a champion.  Actually got kudos from my boss on the great work.  At the same time I was able to take care of my children too.  It was a good day and I was queen of the world until that night when I started to feel sick too...