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!

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...

When It Rains It Pours...Again

When it rains it pours.  Here I am trying to get the DDD involved so I can get services for the children (such as respite and therapy).  Instead the DDD guy gets Child Protective Services (CPS) involved.  We had the police here last night.  The police man said he COMPLETELY understood why I had a chain lock on the door at night.  Today, near 1pm, a CPS worker stopped by the house.  Bailey did as I asked.  She did not let her in.  The woman said she wanted to come in.  Bailey said no and said the police where here last night and found no issues so WHY was she out here.  The lady said SHE had to ask questions of the family and talk to the children.  Bailey said she was not comfortable with giving out information on the children without me present.  In the end the lady gave Bailey her card and said to have me call her.

I have now called an attorney.  This is the first time I have dealt with CPS and I know enough from others that I have to be cautious.  Affording an attorney this time of year will be hard but worth it!

Fire Trucks, Ambulances and Police, Oh My!

Photo Credit: redalertspolitics.com

I am the winner of the Powerball ticket in Arizona....NOT!  LOL!  It was wishful thinking while I could do it though.  What I could have done with the money.  The winner's share is something like 136 MILLION dollars.  It would have been SO nice to have the money.  I would have left my work in a heartbeat.  I miss my children SO bad.  I would have gone back home to be with them.  After I paid the rent for the rest of the lease where I am at and give Bailey and her grandfather the house to live in rent free for that time.  I would have given one million to Bailey in a trust.  She could get the interest from the trust each year.  Her grandfather I would have bought him another car and given him 500,000 to get started with what he would like to do.  My children are easy.  I would have set up a trust for Jerrin.  He is not working currently and my grand-baby is on the way. I would have set up a 5 million dollar trust for him where he got the interest.  I would have bought the $60,000 home they (Jerrin and his fiance) were wanting and given them 100,000 to renovate and redecorate it.  Caitlin I would have set up a 5 million dollar trust also. She could have the interest as spending money.  I would pay for any college she could get accepted in.  Currently she is in college and I think she would stay there but I would offer to pay the entire bill.  I know that would take a HUGE worry off her head.  So that would be about 12 million or so.

Next I would have gone to Las Vegas.  I would have gone back to where I consider home.  I would have bought a 5 to 10 million dollar home.  I would not want the size of the house as much as the land.  I want LOTS of space for the kids to roam and play.  That is SO much money I have no idea what kind of house that would even buy in Vegas.  I would think the 5 million dollar house would cover all I need with the space and a pool (for fun and therapy).  I would also want to get some sort of small house near my parents in Alabama so we had a place to stay when we went to visit.  I would pay off my parent's home.  I would also offer my grandmother a place to stay anywhere she wished.  She is all most 80 and it would be nice to give her somewhere that is nice AND where she wants to live.  I would give my in-laws money to pay them back form all their help and I would even give John some money so he could pay off his bills and buy a car.  I would set up a trust for Margaret, James and Joseph.  Margaret and James I would set up with 10 million and Joseph with 20 million.  I would be able to write an advance directive for Joseph (and Margaret too for right now) to make sure they will be able to be looked after and have a nice life after I am gone.  I would save 30 million and pay for all the things I want to do for me and the children (care givers, doctors, therapy, other medical and anything else they need).  That is 70 million. Plus the 12 million from earlier and I still have about FIFTY MILLION left to spend!!!  It would be SO great to help out all the nice people who have helped me along the way and then to be able to give to others. I know I would give money to all my friends.  They are all, sadly, as broke as I am.  It would be nice to pay off their homes, buy them equipment they need for their children or do one of the many other things I know they need.  I would LOVE to help people in a thoughtful and personal way.  I could go back and do one of my FAVORITE things in the world to do... random acts of kindness to people who have NO idea it is coming.

Photo Credit: cpes.com

Now that the daydream is over...back to reality.  LOL!!!  I took today off from work because Chris (a worker from the Department of Economic Security, Division of Developmental Disabilities (DDD), Children's Unit) told me it would take ALL day to go over the information he needed for all three children.  Bailey had a doctor's appointment scheduled for the day .  I took the entire day off.  I missed a HUGE meeting that I had to ask my boss' boss to attend for me.  Then I had another meeting I was missing that I had to ask my boss to please take minutes for me plus I had a paper I needed to review.  Sigh!  Bailey later informs me that she cannot make her appointment since she did not call early enough to arrange a ride.  So she cancels her appointment. Sigh!  I could have done the DDD appointment some other day but it was too late now.  The guy from the DDD came over this morning.  He was here from 8:30am until right at noon.  During our interview we discussed a lot of topics.  I kept telling him over and over again how the children have LOTS of safety issues.  I mentioned I put a have a lock on the children's door.  I said I used to use a baby gate but James got so big he could easily pull down the baby gate so I had to put a lock on the door.  The guy had this look on his face and I said I had a problem with them wandering off so I had to make sure they could not do that at night while I might be sleeping.  Not once did he ask any questions or wanted to see their room.  I had to make some copies of things for the DDD worker so I went into Bailey's room to ask if her printer had paper in it.  When I went in she told me she had been having a migraine today and she was about to have a seizure.  She asked I wait a moment and look in on her.  I said ok.  I stayed and watched the seizure.  It was about a minute long and pretty mild.  She seemed to be coming back around and I said I would be back in a second.  I left the room to check on the copies I was making and went back after I heard a noise in Bailey's bedroom.  I walk back in and she is in another seizure.  I stayed a watched over her.  She was gasping and gagging because her breathing was interrupted.  This one last all most three minutes.  I go back out and tell the guy from the DDD his copies were ready and he needed to go.  I was going to call an ambulance since Bailey was having seizures.

Photo Credit: oneyearintexas.com

He left and as I went back Bailey came walking out of her room.  I asked her if she is ok.  She said she was confused.  I told her she was ok but she had two seizures in about five minutes.  She lays down on a pallet in the living room.  I asked where her meds are and she tells me so I get them.  When I come back into the room I was there for just a few seconds and she had another seizure with the kids there.  James asked what was happening.  I said Bailey was sick and mommy was going to call 911.  I called 911 and the kids were going nuts.  They knew the police or someone was going to come over.  As I am on the phone with 911 they put me through to the Gilbert Fire Department.  I mention fire department the kids run around making fire truck noises.

I hang up with the fire department.  They were there in five minutes.  By then Bailey was starting to come around a little.  The firemen (yes, they were cute!) were asking her a lot of questions and helped load her into an ambulance that took her to the hospital.  James was VERY concerned for Bailey.  He kept telling me we had to go and get her.  I said we had to wait until she called and then we would get her. At three-ish in the afternoon Bailey called and asked if I would take her over to the local urgent care so she could get pain medicine to stop the migraine.  I said sure.  Earlier in the week Bailey and the children made letters to Santa.  I said I wanted to go to the post office and send off the letters to Santa and then I would stop and get her something to drink before taking her to urgent care.  She said ok.

Photo Credit: boston.com

I went to pick her up from the hospital.  We got to the post office and I went in with James and Margaret.  Bailey and a sleeping Joseph waiting in the car.  Another kid was in the post office and the mom even thanked me for bringing them. LOL  They all played.  She should have been thankful though since she was NOT paying attention to her son and I stopped him bring having his fingers pinched in a door and stop him from spitting in the floor. Oh my!  LOL  It took 40 minutes waiting to send the letters to Santa.  I sent them to North Pole, Alaska. (Follow the link to see how) I have never done this before but it seems like it will be fun!

After getting something to drink I took Bailey to Urgent Care.  She wanted to take James with her for company.  Huh?  Really?  Okay!  LOL  James is really good on his own so I figured he would behave for her. Joseph, Margaret and I went home.  I let them play outside and I tried to get some things picked up.  As I am starting to write in the blog Bill arrives home.  After he comes home I call Bailey to check up on her and to try and give her grandfather information.  He has me talk to him for a bit about making meals.  He said he was about to be paid and he was going to buy groceries.  He was then going to cook.  He was asking what I like.  To be honest I HIGHLY doubt there is anything they would eat that I would not eat too.  It would be me and the children who would eat "weird" stuff like Indian food. LOL   I LOVE all sorts of things and so do the children.  The biggest things we talked about was buying food specifically for meals and getting fresh fruits and vegetables.

Photo Credit: ebay.com

I leave again.  Bill volunteers to watch Margaret and Joseph while I go and get Bailey and James.  I pick them up from the urgent care and then take them to the pharmacy.  At the pharmacy Bailey gets her pain medicine.  I take us back home.  I was about 7:40pm when we got back.  As I come in Bill said the Gilbert police had stopped by.  I asked why.  Bill said, the policeman said,  he was responding to a call from child protective services. What???   Bill said the office mentioned the call said the children were being locked in their room.  The way the officer made it sound was that we were keeping the kids locked in the room all day.  The officer said he wanted to come inside and look.  Bill said it was not a problem.  He went and made sure he put the baby gates up and took the officer to their room.  He showed the officer the chain lock.  Bill explained that the children were disabled and to keep them safe at night we lock them in their room.  The chain lock on the door allows them to open it and yell for help in the morning.  We let them out. They are not imprisoned in the room in any way.  The officer look in the room and saw the Christmas lights I had put up, their beds and toys in the room.  He saw the lock on the bedroom door and front door.  He said he completely understood why the lock was there and he had no idea why he was called out.  He said he would write in up what he saw in his report to Child Protective Services and let them know the children were fine.

I am rather upset with my case worker, Chris, from the DDD.  I had explained to him WHY I did that. I had said James could pull down a baby gate.  I said OVER AND OVER again how they were a danger.  They had issues with safety and wandering.  OMG!  So now I am thinking about getting a copy of the report if I can.  I want to know what was said.  Then I think I may file a complaint.  At the very least I will be switching case workers! Anyone have any advice here?  I have to say I am feeling rather betrayed.  Plus if anyone else have any ideas on keeping them safe that is better than the chain locks I would be happy to hear the ideas!

Photo Credit: gafamilylawblog.com

So that was my day.  It is now near midnight and I need to go to bed to get up at 4am tomorrow.  I have to mention John though.  It just would not be a blog post without saying something.  Sigh!  I recently was talking to John and he said his father called and asked him if he was planning to see the kids for Christmas.  The children will be turning FIVE on December 13th and then Christmas.  John was not planning to be here! In John's defense his mother has been fighting aggressive breast cancer for a while now.  She just finished treatment and (from my understanding) she is doing okay (I would not say well).  John's father offers to help him see the children or go home and see his parents and family for a week.  John decides to head back home.  On one hand I understand his decision.  On the other hand I am angry.  I know his mom has been VERY sick but she is also an adult.  The children on the other hand do not understand what is going on.  James is a HUGE daddy's boy.  He calls John basically EVERYDAY even though John often does not talk to him long (battery dying, holiday party and classes).  James cries at least twice a week wanting his daddy. He is CONSTANTLY asking me... where is daddy, is daddy coming, daddy is coming to Phoenix, we are going to Vegas, can we move to Vegas and other variations. When I say no, James cries. John has NO plans to see the children.  I told him I was going to try and get us up there at the end of January.  It is the soonest I can have enough money to try and rent a car.  There is NO way I would rely on my van at the moment to make it there. Even tonight James was telling me that John would be coming to Phoenix tomorrow.  I had to correct him again.  He was sad but I said I would do what I could to take him there in January.  He thinks that is next week but there is no way for me to explain the time issue to him.

John whines to me about not having enough money to come and see them but he has enough time to nap, workout, have no children, only one job and no room mates.  So of course he could not have the time to do anything to earn any extra money to come and see them.  Heck, a room mate does not even involve a lot of effort on his part and would save him at LEAST $300 a month!  Got to leave that room open though for the children (who may be there for two months during the summer...what about them staying in HIS room?) UGH!  I am sure part of the reason I am frustrated is that I have little to no time to get what *I* need done for me OR the children!  I am tired!  Can I get some respite now?

Joseph taking the meaning of stocking literally!