Does Anyone Have A DeLorean I Can I Borrow?

Photo Credit: Forbes.com

I would image you would have to be at least 20 to even get that reference….lol. I would love to have a time machine so I could go back in time and re-do some of the things in my life. The most recent incident is allowing the DDD to come into my home. Here I was trying to get a some benefits for my children and instead I get CPS sent to my house instead. It is an awful feeling of dread every moment you know they are investigating you. I took a Benadryl last night because my eczema is starting to flare up…I imagine due to stress… and I overslept. When I work up it was still dark out and I had not heard any conscious noises but I did see out my window flashing lights. My first thought was to panic and that CPS was here to take away the children. As it turns out the flashing lights was the garbage truck but it gave me a momentary start. What a horrible way to wake up plus I was running behind in getting to work. Not a good way to start my Monday!

Since I last posted I spent Thursday night in such distress I was crying and up until 1am. I was worried the CPS worker was going to show up and take the children from me before their birthday. Though I am not worried about not getting the children back I was worried that I might miss their birthday because she can take them (potentially) for up to 72 hours (might be 48). It would be my luck she would take them and the time would extend over their birthday. James has been talking about his birthday for WEEKS and I do not want to disappoint! It looks like we are going to do a glow-in-the-dark themed party. I have to check out some party supplies but I think I can get everything done. Margaret has requested a Hello Kitty carrot cake. I will see what I can do…lol. James wants a chocolate cake with vanilla icing. That will be easy enough. Joseph hasn't made any requests so I am giving him the same thing. There are so many details to the party I have to take care of but I am hoping I can get it all done in time. I am going to try!

As a side bar…John complains I never say anything nice about him in the blog. Usually that is because I am complaining about him. I have to say though on Wednesday I had called and let him know what was going on and to be prepared for a potential phone call. When I said what was going on with CPS he was really annoyed. He could not believe that something so small had been blown so out of portion. On Thursday night, while I was stressing out and crying, I texted John. I woke him up but he texted me back. We texted back and forth for an hour. He did his best to try and reassure me that not only am I right about what I am going concerning the lock on the door at night but reminded me of a few other important things I needed to do. He was a champ and even made me laugh at the end. I needed that! So I wanted to more “formally” say, thank you!

I reached out to my network of Facebook friends. I know several of them have been investigated/harassed by CPS over the years. One friend I have has become, essentially, an advocate against CPS. We spoke at length and she told me that I had rights and where I could access the laws that govern what CPS can and cannot do in Arizona. Being a fellow state worker I understand the CPS work’s job is important but she is barking up the wrong tree in this case. Currently I work as an environmental planner. This means I am familiar with finding statues (state and federal), reading, interrupting and applying law. Now that I know I have rights and what they are it makes me a bit more at ease but at any moment the CPS worker can go and declare the children a dependent of the court and at least take the children from me for at least a few days. On the other hand this woman has already violated state law herself. Arizona Revised Statues state…

8-803. Limitation of authority; duty to inform

A. On initial contact with a parent, guardian or custodian under
investigation pursuant to this article, a child protective services
worker shall inform the family, both verbally and in writing, making
reasonable efforts to receive written acknowledgement from the parent,
guardian, or custodian, of receipt of all of the following
information:

1. That the family is under investigation by the department.
2. The specific complaint or allegation made against that person.
3. That the worker has no legal authority to compel the family to
cooperate with the investigation or to receive protective services
offered pursuant to the investigation.
4. The worker's authority to petition the juvenile court for a
determination that a child is dependent.
5. The person's right to participate in a mediation program in the
attorney general's office. The worker shall provide the telephone
number of the attorney general's office mediation program.
6. The person's right to file a complaint with the ombudsman-citizen
aide pursuant to section 41-1376. The worker shall provide the
telephone number of the ombudsman-citizen aide.
7. The person's right to appeal determinations made by child
protective services.
8. Information outlining parental rights under the laws of the state.

So far the CPS worker has said nothing besides that she wants to ask questions and see the children. I have yet to hear anything on WHO is being investigated, WHY we are being investigated or we have RIGHTS. I can guess at the information but I am not sure. When I called and spoke the CPS worker on Friday she said she would not be able to come to the house that day. She was working on-call and might be called away so she wanted to wait for another day. I said that was fine. She asked if I could meet early on another day next week and I said I could arrange it to be that way. Since I work we are expected to be in the office Tuesday to Thursday without fail. She asked if Friday would be better and I said yes. She moved the time to 4:30pm. I told her that worked even better for me. Now we have an appointment set for this Friday at 4:30pm. In that initial contact and first phone call the CPS worker started off the conversation in a hostile time with me saying, “I never got to see the children.” She said it in such a rush I did not even understand what she said. I said, “Excuse me?” The CPS worker than stated again, “I never got to see the children. There is only a 3 inch crack in the door and I could not see them.” I told her, “I never said you did. I said you were SCARING my children and I wanted to make sure it stopped.” The CPS worker said she did not do that either. I pushed it off as Bailey can be melodramatic so calm things down. I said I would meet with her on that Friday at the house. What I did not tell her is that I still have of intention of letting her inside. Now that I know I do not have to cooperate with the investigation I do not plan to except as it basically pleases me. The police came by the house and saw nothing was wrong. If so I know he would have stated as such and the children would have been removed. I am now working on getting a copy of the police report.

So this week I get to stress about the CPS visit, try and finish up things for my children’s birthday party, send out the invites today and tomorrow for the party, go to work and try to be present in my job, and I am sure do a load of other things I cannot even think about at the moment. Life is hectic!

Photo Credit: glowstickfactory.com

Over the weekend I did get something done. I needs to get more birthday supplies. James has a VERY certain scenario set up for his birthday in his head and I want to make as much of that happen as I can. Sunday we went out to the park for two hours. It was SUCH a nice day. I found the nicest little park called John Allen park near our home. It was just the right size for the children to play and it was not busy like Freestone Park. Plus there was easy access to the park for Joseph. While there though Joseph fell down some steps. He had been going up the steps several times but I had been there to make sure he made it up ok. There are a lot of stairs and they are rather steep. Each time he made it up with one problem. He would go to the other side of the playground equipment and slide down the spiral side. He was having a blast! James was running around and I saw Joseph playing in the sand. I left him and sat down with James to get his shoes on. As I was getting James’ shoes on I her Joseph crying (but not the “bad” crying when you know someone is SUPER hurt). He is sitting at the base of the stairs. The other little girls who were at the park go over to him. I finish tying James’ shoe so he would not lose it and go over. I pick Joseph up and I see a HUGE goose egg starting to rise right between his head. I could tell somehow he had started to go up the stair and then fell. As I looked at him later he had a couple of more places. My poor baby! All I can say is I am glad he avoided his mouth. With all the dental issues he has had because of falls like this I am glad he did not crack a tooth or bust his lip. I wish I knew why he has been SO delayed in walking and seems to have such major balance issues. I am hoping the developmental pediatrician will have some answers. He has an appointment to be seen in February. Can you believe I made the appointment in August BEFORE I had even left Vegas?

Today is Monday and I have to find a party supply place. I think I will be trying to get in early to work for the rest of the week so I can make up some time. I want to take half the day off on Friday so I can get the last things done for their party. I am REALLY looking forward to the celebration and surprising the children!

Trip to Phoenix

Lake Mead from Highway

After filling the car with $185 worth of gas (the down side to having a HUGE van...lol) we left Vegas.  The first stop was driving by Lake Mead.  The sight of all the pretty blue water in the desert is beautiful!   Travelling down the road started out fine.  The children were in a good mood and I was making pretty good time.  I took the GPS and had ti map me out a course to the extended-stay hotel my parents got us.  It at least allowed us to have a place when I got into town so we would not literally be homeless.

The car was full of gas, the kids were full of food, everyone that had to have a diaper was dry, and I was caffeinated.  Promising start!  When I saw the sign for the Hoover Dam I was SO tempted to take a trip over the new Hoover Dam Bypass.  Since it has opened I have not had a chance to travel that way.  I managed to avoid temptation....lol.  It was HARD!  Knowing my luck lately I was worried something would happen to the car and I would find myself stuck on the bypass....lol

I think I made it another 20 miles down the road when James said he needed to go to the bathroom. Of course there is NO bathroom available.  I see a scenic rest stop.  The scenic rest stop is near Willow Beach.  I let James out of the car for a potty break.  Thank goodness he is a boy!  LOL   I got Margaret out too and I took a quick shot of them at the rest stop.




Besides me yelling at the kids at about the three hour mark we were doing pretty well.  Margaret does really well in the car for about three of four hours and then she has a meltdown.  There is just no other way to describe her behavior.  SHe starts to scream and whine.  Then she lashes out against James and Joseph.  She was hitting them but she has also punched  scratched and bitten whatever she can get a hold of.  I had to stop the car and let her out.  We made it to Seligman, AZ.  We stopped at a gas station there.  I was down half a tank so I was going to fill the tank, take James and myself to the bathroom and pick up some snacks for the children.  By the time I left the gas station I had spent $85...lol.  That at least included gas!  While I was pumping my car a woman came out and asked if we might have left a Hello Kitty doll in the bathroom.  I said yes.  There were only a few other people at the gas station and I did not see any children.  So I waited about five minutes before I went back in because I was settling the kids into the car with their snack and I finished pumping my gas.  I went inside to look for her Hello Kitty doll and it was all ready gone!  Can you believe that?  Someone,it had to be an adult, TOOK Margaret's Hello Kitty doll.  My poor baby cried and was upset.  :(

The rest of the trip was uneventful except having to hear Margaret cry and whine about her doll and anything else she could think of.  We made it to our hotel.  The In Town Suites in Gilbert are not too bad.  They are a bit weird because there are no dishes or towels supplied.  We do have a fridge and a microwave.  I brought my toaster oven.  We will be able to go grocery shopping and pick up some things. Yea!

Bon Bons and Birthdays!

Money is not a problem until you don't have any ~ 

This is a quote by me....lol.  Having money is great but when you do not have enough of it life becomes tough.  I have a $400 electric bill that I have to pay.  I am going to make rent for September.  It made my landlord happy since I did not pay her for July and August because I just did not have the money. Currently everything is still on but no telling how long that will last.   I have asked several people for help financially but no luck so far. It sucks being poor.

 On a positive front I have been offered a job to work for the State of Arizona. Yea!!!  This is a great job for me.  There are logistical problems like paying for a sitter to watch my children, moving to Arizona in the first place, where will we live?  I do not start my job until the middle to end of October so I am actually thinking about living in a homeless shelter for a month or two.  I have to get money in first before I can pay anything out.  I don't know what I am going to do but that is another problem what will have to wait until tomorrow.  If I think about everything now then I will just get scared about this fantastic opportunity. 

I may be going to Arizona in the beginning of October because I need to get down there a bit early to scout things out and see what aid I can get for the children and myself.  For the first month or two we will be down there we will be DIRT poor.  Once I get going in my job and get a paycheck coming in then most things should straighten themselves out.  If anyone knows about disability services and such in Arizona please let me know!

In the meantime I will try to enjoy my bon bons because I have a lot to celebrate.  My birthday is coming up soon, right after the Labor Day weekend, so I am hoping to have a good time in Las Vegas before I have to leave my beloved city.  I am hoping I will learn to love Arizona as much as I have loved Vegas. 

Visit to New Pediatrician

This is not a good start when we have been sitting in the back office now at least 40m and it is now 6 pm. Our appointment was at 4:30pm.


I was trying to post from my phone. The above post is only part of a what I wrote. Our old pediatrician has changed practices and the new practice does not accept our insurance. I am SOOOOO bummed but I had to start looking for another pediatrician. Since I don't really know anyone here with small children that are disabled and are not vaccinating their children it is hard for me to get a referral....lol.

Also, before anyone even tries to flame me about not vaccinating my children I have looked into it. They have all had some of their vaccinations. Once we moved I fell behind. Now the children are behind in vaccinations and with Joseph's health problems I have decided I was no longer going to vaccinate him until I knew better what was going on. The other two children I will vaccinate but I will not give them more than one shot at a time. The more I learned about vaccinations the more I think the schedule they advise doctors to vaccinate children is ludicrous. If you want to know why I think that please just ask I and I will send you some information.

OK, so back to finding a pediatrician. Since I did not know what else to do I decided to look on Yelp! I mean, why not? Many doctors in Las Vegas are not even listed on Yelp! I think this is a shame and I do make sure I write reviews for the specialists we see. There were a couple of pediatricians that had positive reviews so I looked them up. I picked Dr. Robertson. So I made an appointment. It was for June 11th at 4:30pm. The doctor's office is on the other side of town from me. I am NOT familiar with the area at all. With my Garmin dead I am SO LOST! LOL

Luckily, I made it there, got the children out of the car and into the wagon along with the bag of binders holding everyone's medical information. My computer and the print have not been talking to each other since we moved so I had to hand wrote out the list of doctors Joseph sees and my questions for the new doctor. I am a terror with doctors and I can't say I really apologetic over it either. My old pediatrician was GREAT! He was the coordinator of all care for Joseph. Trust me when I say that is a LOT to ask of a doctor...lol. When I had even set this appointment the receptionist asked why we were coming and I said it was to check the doctor out and to explain Joseph's complex medical history. The receptionist chuckled and I know she did not believe that Joseph's medical history takes an ENTIRE appointment just to explain everything. LOL

So I get there at 4:30pm because I had a hard time finding the place. Once I get there the office is full. The office staff was nice enough. I got the paperwork and I started to fill it all out. I get it filled in and turned back to the staff. At 5:05pm we were called into the back and put into a room. The room was cute at least, it was done in a Disney Cars motif, but I was surprised there were NO covers over the outlets. I had to tell Margaret four times not to put her fingers into the socket.

At 6:15pm the Dr. Robertson finally entered the room. I appreciated that the FIRST words out of his mouth was to apologize for the wait. That was nice. Then He looked at the list of doctors Joseph has seen since we have been in Vegas. He looked at me and asked if I saw all of them and I said yes but we do not see all of them on a regular basis. He looked at me and said, "I am SO sorry! You are VERY busy!" ROFL! NEVER had a doctor say that! Then we started talking. He asked why I was there. I told him our old pediatrician had changed practices, he knows who our old pediatrician is, and we have to find someone who takes our insurance. He looks at my list of questions and says, "I am a man, if a list is more than 2 items long I can't read it." ROFL! He asks me to tell him what is most important. I tell him I need a referral to a feeding specialist for Joseph. At 4.5 Joseph can only eat baby food, tiny star pasta, oatmeal and eggs. He drinks from a bottle and has NO idea what to do with a straw if you put it in his mouth. In the last two years his weight has not really changed even though he has grown 2 inches. He weights about 25.5 lbs. He wears a 2T shirt and a 12m to 18m pants in the waist. He is SO small!

I also told the doctor that I wanted to take Joseph to a GI doctor and I explained that we were going to see a geneticist the next day. I said we were seeing about getting Joseph a muscle biopsy to check for mitochondrial diseases. He asked why were we thinking this and I said he had some bloodwork that was off in the very long chain fatty acids. He said, "Is it a metabolic problem?" and I said I did not know. He asked for the blood work that shows the unusual numbers and I pointed to the 3" 3-ring binder. He laughed. I said I would look for the lab work and if I could find it I would have the office staff make a copy. He said there is a metabolic specialist that comes to Las Vegas once a month and he would send a referral to him for us. How awesome is that???

Overall it was a good visit through rushed. I left the office and had the kids at the car at 7:10pm. I still had to drive across town to get home. By the time I got home, fed them and got them to bed it was 9:00pm. Wow, that was a LONG afternoon!

Trip to Utah

Tuesday afternoon we went and picked up the rental car so we could get the children's car seats moved to the rental car. To move over three seats is not horribly hard but it does take time and when it is 105 degrees outside it is not fun. On Wednesday morning we got up early. I gave the children a bath while John made breakfast. Once the bath was over I took the kids downstairs and John had a yummy breakfast prepared. We ate, loaded the children in the car and hit the road.

St. George is only about 2.5 hours from Vegas but they are on mountain time so one has to take that in consideration when you make an appointment. I have to leave at least 3.5 hours before the appointment time. Even though it is only a 2.5 hour car ride keeping 3 hyper kids tired up in a car seat is just asking for trouble. Apparently two hours is Margaret's limit. For the last 30 minutes of our car ride we got to hear Margaret scream. Each time she screamed she caused Joseph to cry and then James lashed out hitting Margaret and telling her to be quiet. What a great last 30 minutes before we get to the geneticist office...lol. We arrived a bit early. The kids were antsy since they wanted to run around.

We met with the geneticist. The doctor said Joseph may be suffering from a genetic condition but the doctor doubted that was the case. The other possibility is a fatty oxidation disease (FOD). This is something that should have been caught at a newborn screening. So the doctor does not think this is Joseph's problem but we went ahead and ordered the test because it only involves blood work. This is also a test Johns Hopkins will probably want to run so we might as well do it now.

The geneticist told me I appeared to be unhappy with the medical establishment so far. The short answer to that is yes. Joseph is 3.5 years old and we have seen numerous specialists and NOT ONE OF THEM can tell me why Joseph suffers from the severe neurological problems he has (no indepenent walking, hypotonia and mental retardation) and not one of them seem to care. To them my son is just a number because there are only a few specialists in Las Vegas and they are SUPER booked. Why shouldn't I be unhappy? I want more for my son!