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...

UCLA Neurology Department is a Disappointment!

So Friday I was hoping for all sorts of great phone calls and good news.  Sadly, that was not how things went.  So far neither of my phone calls to the homeless shelter in Phoenix had been returned.  I was even referred to the homeless shelter as a partner to another group that serves disabled children.  So I do not understand why I have not heard anything back.  

I asked my new employer for a job offer letter last week.  I wanted the letter as reassurance that I have the job but I also need the letter to show my landlord and a few other places as to why I am moving.  I especially need it for the landlord so she knows I am not just breaking my lease with her for the fun of it.  I called the office but my new boss did not answer his phone so I left a message. 

I called UCLA since I had not heard anything about Joseph getting an appointment there.  I call the number the registration department gave me and moved through the options.  After waiting for 15 minutes on the phone an actual HUMAN answered the phone!  I had NEVER had that happen before when I have called! I spoke to the receptionist.  I told her I was trying to get an appointment for my son.  So after giving her my son's name, UCLA ID number and other information she put me on hold and was gone for several minutes.  She finally comes back and says I will have to call next week to see if I can get an appointment.  What?  Are you kidding me???  I asked her why and she said Joseph's records were sent to the wrong department.  After fighting for about a year to get special  approval to see this doctor we did not make it last year.  It got too late into the year with the cold and flu stuff going around so I wanted to wait.  When I asked for approval again this year it took two months but I got the approval.  I NEVER thought to look and see if the doctor specialized in pediatric patients.  The receptionist told me that Joseph's records went to the pediatric department and their department just got them (adult side).  I was told Dr. Sheih could take up to 10 days to review the records.  I got upset then!  I had been trying to get Joseph an appointment for the last 6 weeks at least and I still did NOT have an APPOINTMENT! Just an appointment people! OMG!  Once he reviews the records he may turn down Joseph since he is so young!  UGH! We just need to see the doctor for a fresh muscle biopsy.  That is ALL!  So I told this to the receptionist and pleaded with her.  She said sorry.  I asked to speak to her supervisor.  I re-explained everything to him and he said there wasn't really anything he could do.  He gave me the direct number of Dr. Sheih's  assistant.  I also got the phone number for the pediatric side.  I gave the assistant a call and of course she did not answer so I left a message.  I called the pediatric side and yet again no one answered so I left a message.  Then I called Joseph's geneticist.  She was the one who wanted the test.  I called and complained to them.  The assistant there is SUPER nice.  She said she would call either Tuesday or Wednesday of next week after she spoke to the geneticist.  She said she is hoping the geneticist would call herself and try to push things along.  Then I called the insurance company and complained about the doctor NOT being a pediatric doctor. I was on a phone calling rampage at that point.  All I could do though was call and leave angry message everywhere and wait until Monday to get a response. 

I have been working on packing items.  I came across the older children's yearbook when they were in K and 1st grade.  OMG, did that bring back memories!  I cried.  I miss my older children.  I regret the time I had to spend away from them to work and go to school.  All the lost time!  I miss having my son around popping out of his room and giving me a hard time. I miss baking cookies during Christmas with my daughter.  I miss talking to her and her sense of humor. I am hoping she will come to visit me for Christmas but I do not know yet.  I was hoping my son ans his fiance were going to come out here and help me with the babies but that is not going to happen.  It would have REALLY helped me out, help them out and I would have LOVED to get to have and play with my grandchild.

One of the greatest things to happen around here in a LONG time is Joseph starting to walk.  It is both a good and a bad thing.  He fell EIGHT times yesterday. He busted his lip a little once and the other times added lumps to his poor little head.  :(  Other than the falling this makes me SO happy!  How could it not?  Just as recently as a year ago we wondered if Joseph was going to TALK or WALK!  A little after he turned four it was all most like a miracle.  One day sitting in the tub he was picking up the foam letters and telling me what they were.  He quickly progressed from there and now, about a year later, Joseph is speaking in full sentences occasionally.  When he fell into the floor he came over to me rubbing his head and said, " I bump my head mama. Ow."  He says it so sad and pathetic it breaks my heart!  I am glad he can talk though!

About a month ago Joseph started to take more steps on his own without holding on to anything.  Now he is mostly walking around the house.  He had a very wide-legged (V-shaped) stance and walk.  He takes REALLY small steps.  He does pretty well as long as he does not get too excited.  If he does then he tends to fall.  I have to watch him.  Sometimes, when he knows he is going to fall, he can catch himself or fall on his rear.  Other times he misses and bonks his head. 

I have noticed, and so have the therapist, that Joseph seems to have good days with motor skill and planning tasks and other days he seems like he cannot do it.  I have also noticed that since he is walking now he tends to take a nap again in the afternoon.  As I have mentioned I am wanting to get Joseph tested for mitochondrial disease.  The way he behaves with the motor issues I have often wondered if he suffered from silent seizures.  There was one time I swear I saw Joseph having a seizure.  The neurologist we see in Vegas (dislike him a lot bwt) did a short EEG on him (less than an hour) and said it showed no activity so there was nothing wrong and what I saw was Joseph having a night terror.  One plus to being older and having older children is I have had experience with night terrors and THIS WAS NOT IT!  Joseph not only did not seem like he was able to recognize me but the muscles ALL over his body were twitching.  What concerned me the most were the muscles in the middle of his back near his spine.  They were twitching too.  Those are not muscles the average person would ever have move.  Another thought I had was Cerebral Folate Deficiency (CFD).  CFD can manifest itself in a lot of ways.  Some of the possible symptoms are: ataxia, developmental delay, autism-like symptoms, intellectual deficiency, microcephaly, hypotonia, dyskinesias, spasticity, speech difficulties, and epilepsy.  Joseph has quite a few of these symptoms and I want to see about getting him tested since possible causes for CFD are genetics and autoimmune issues.  I don't think Joseph's cause would be genetics but it could be autoimmune.  I have autoimmune issues and so does he.  He has all ready developed autoimmune thyroiditis. 

Some resources for CFD are:
Cerebral Folate Deficiency (CFD) and Mitochondrial Disease
What Is Cerebral Folic Acid Deficiency?
Cerebral folate deficiency.Cerebral folate deficiency: life-changing supplementation with folinic acid

There is also a Facebook page where parents can ask questions about CFD, get information on CFD testing and other great tips is  https://www.facebook.com/groups/363697893680469/  


Here is a video of James and Joseph playing.  James watched the cartoon Sonic and he was running around saying he is as fast as Sonic. Joseph wanted to play too so he was walking up and down the hall...lol.  James is sometimes so rough but other times he is a good brother.  He did not even knock Joseph down while they were running.

I have been talking to my friends and family about our upcoming move.  I was telling my father that I was going to be homeless at the end of the month.  He said he did not believe that would happen. I said that was the path we are on.  There was no other way to see it.  He said he would talk to a cousin of his in the area that was big into the Shriners.  What good that would do I have NO idea. 

My poor friend Krissi, she lives in California with her disabled son, is appalled I cannot find help. Bless her and her indignant outrage...lol.   She lives in a small town and she wanted me to put together a flyer.  She said she was going to hand those out and put collection jars in the local restaurants.  It really is about one of the kindest things anyone has offered to do for me. 

I am not sure how the move will come together but it will one way or another.  I was hoping John would offer to take the children today.   It is not his weekend but if he took them for the day it would have been a huge help in packing and cleaning since they would not be under foot.  Plus, knowing we are leaving town, I thought he would like to spend what time he could with them.  Whatever.  The time is his loss.  As for packing, if I can't get it all done because of my hand (still having major issues from the carpal tunnel surgery) then I will call Goodwill or someone to come and take the rest away.  Got to have the house cleaned out for the landlord!