Trip to St. George and the Geneticist

Its fun having the kids in the car. This is the First time they are pointing out geographic features.


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Again, I was trying to use the mobile blogging feature. I have to work on this and see if I can get it worked out.

We had an appointment for Margaret and Joseph at the geneticist at 1:00pm Utah time. Dr. Arch is in St. George, Utah. There is only ONE geneticist in the state of Nevada and to get to see her there is at least a three year waiting list. So we went to Utah. The drive should take about two hours and twenty minutes but the drive was more like three hours. There was a small traffic accident on the way out of Las Vegas and I had to go through two construction zones before I arrived at the hospital (this is where the geneticist has her office). Luckily for us there were other patients from Las Vegas that day and they were late also so when I called and said I was running late it was not a surprise to the staff.

On the way there the children really where pretty good. I had the foresight to through in some books and toys into the car before we left. The kids played and shared SO nicely back there. I was SO proud of them. They were also having fun pointing out geographic features like cacti, mountains, rivers and trees. Especially when we went through the Virgin River Valley Gorge. James got out of the car and lead the way into the hospital. The kids played in the waiting room and got into the bag of food I brought with me as I went over paper work. Then we were escorted into the back and into a waiting room.

The kids now wanted to play with the toys in the room. It was about 10 minutes later the Dr. Arch walked in. We quickly discussed Margaret. With Margaret having a normal micro-array analysis and the MRI of brain damage I feel as though I know what I basically wrong with her. I think all of her problems stem from brain damage. Joseph on the other had is COMPLETELY different.

With Joseph having a normal MRI and DNA analysis but he is severely impaired in function I can only think there is something wrong that the doctors have not found yet. Joseph did have some blood work that showed some abnormalities. We discussed getting a muscle biopsy done. I will be working on getting the authorization re-approved.

If we get the muscle biopsy done it will be a BIG deal because we will have to drive four hours to Los Angeles and Joseph will have to be put to sleep. It would be like an out-patient surgery sort of thing. Very scary in some ways but it would be SO good to get it done and determine if he has any muscle myopathy or mitochondrial problems.

On the way home Margaret was getting restless. Sitting in a car seat for so long makes he cranky. About two hours into our return home Margaret got mad at James for some reason and the next thing I know he is screaming in the back. Then he says that Margaret bit him. I made her apologize. Man, it is rough making a car trip with her. She can get so hostile sometimes. Got to remember to put her on the outside and not between the boys. This would at least limit the amount of damage she could do because she could only reach one person.

I would guess most people would not be surprised when I say I was exhausted when I got home and couldn't have been more thrilled to stop for the night...lol.

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!

Can't Believe I Forgot to Mention...

I can't believe I forgot to mention what is going on with Joseph! On May 1st we went to the dentist. Nothing like taking all three children with me, alone, to the dentist. (sigh) They do not make it easy. We got there and getting into the waiting room was not too hard. We had a problem once we were called back into the office area. By then another mom with her two children were there. She got to witness me get James and Joseph back into the office but then Margaret balked. She started to cry and scream. I got her arm and tried to get her to follow me but she screamed harder and fell to the floor. The other mom got to watch as I dragged Margaret the last three feet across the threshold of the office door. I am sure I was looking like a wonderful mother at that point (not). Just did not feel like explaining that Margaret is autistic and have an unreasonable fear of the dentist. Margaret was throwing such a big fit that she was putting her fingers in her ears because HER screaming was SO loud it was bothering HER. LOL I know, I know. It is funny but it is not.

Being miserable as she was we went straight to the room while the boys were taken to try and get x-rays. Margaret crawled under the chair where I was sitting and laid there crying and screaming. She volume did lower but that was about it. So she was crying and screaming under my chair as the dentist came in. He is a great dentist since he is really nice to the children and specializes in dealing with special needs children including autism. My ONLY problem with him is that he does not force the children to get all of their teeth cleaned. That concerns me so I think I will take the kids to another dentist once a year to get the cleaning they need. So James goes first. We let Margaret watch but she was still crying and she crawled back under the chair. James is a champ. He gets into the chair and allows the dentist to look at his teeth and clean them. Then comes Joseph. Joseph gets into the chair. He is nervous but he is good. The dentist looks at his teeth and I tel him I noticed that the right front tooth (that he had knocked out of position MONTHS ago at McDonalds) is loose. He looks at it and asks me if I had noticed an abscess in the gum over the left front tooth (LFT). I said no. He showed me. It looked like a pimple in the gum.

You can see the nice big chip out of the LFT. The dentist said he thinks the physical damage done to the teeth is the cause of the abscess. That each tooth was cracked and the root of the tooth died and became infected. My poor baby! How pain it must have been but he NEVER cried or indicated he was in any pain. His Right Front Tooth (RFT) was also bad. I was told he would have to have both front teeth pulled. Ugh! With Joseph not producing growth hormone he is FAR behind in getting his teeth. He will be AT LEAST 7 before his permanent front teeth would possibly grown in.

It's a PITA!

I have not posted in awhile and I think part of it has to do with I am not sure what to say. Its not that I don't have a lot I could say but I feel like most of it is not good news.

On a personal note my marriage is hanging by a thread. I mean it literally. I am expecting John to file for divorce at any moment. If he does I am not sure what I will do. I am close to finishing my MS degree. I am in my last class now and then I have a two month break (June and July) before I can start my capstone project. I should finish that class at the end of December and should graduate then. I have been looking for a job but so far I have not been able to find anything.

John did say he would stick around longer if I went to therapy so I have tried calling a few therapists. So far I have called seven of them over the last two weeks. I have been doing research on the internet of the therapists in the area and no one yet had called me back. A couple of the instances were funny because I would call and one said, the therapist had a six week waiting list and the second one said they were closed for the next three weeks. Just today did one of them call back. I will have to cancel another appointment to make it but I plan to go. John thinks I have a lot of problems. I think I have some problems and the problems I think I have I am pretty sure is different than what he thinks I have.

This past week the homebound teacher for the school has been here. I got a bit upset with her because she was getting pretty cross with James. At one point she told him, "Do we need to get your mom in here?" What kind of threat is that to an autistic four-year-old and all I could think is what would she have done if she know I was not going to be there to witness what was going on. It scares me for my children.

We went to two appointments last week around all the homebound stuff. One day for me as to get the children up, clean the house some, have the homebound teacher arrive, have the OT person arrive, have them both leave, feed the kids lunch, put stuff away and gather what I need to leave, get shoes on everyone, pick up Joseph and herd the other two out the door and into the car, buckle everyone in and head out. I get to my destination and take everyone out. Joseph goes in a stroller while I keep and eye on Margaret and James making sure they do not run off, we go to the appointment and wait. We see the doctor and then get to leave. I take everyone out and make sure they do not wander off as we head to the car. I get everyone into the car and buckle them all back in and then collapse down the stroller and put it into the car. We drive back home and typically 3 to 4 hours have passed since we first left the house. So I arrive home about 4pm to 4:30pm. I have to feed the children again and get them settled. Then I have a bit of time, maybe, to make some phone calls before 5pm.

Alternate scenario is homebound teacher leaves at 11:30am. Then I feed the children lunch and we have maybe 90 minutes before the speech therapist arrives to work with the children. She works with the children for the next hour. She packs up and leaves and I take the children outside for about 30 minutes. By then it is 4pm-ish. I bring them inside and give them a bath. Then it is time for me to start dinner. I fix food for them and feed them again. By then it is about 6pm. That gives them 2 hours before bedtime to do as they wish. Overall we have pretty packed days.

My days often fly by. Lately I have been struggling with keeping up with school. I am towards the end of my last class. I will then be on a two month break and in August I will be starting my capstone project. Once that is completed in December then I will graduate. I will be SO excited!

Right now my life is a PITA (Pain In The Ass) but I think things will be getting better soon. I hope...lol.

I don't know what to say...

I have not signed in for a bit because I don't know what to say. Spring is coming and the pace of my life is picking up again. The local school district finally got all the information they needed after I had to get some paperwork from the doctor. Now the children are getting homebound services. It was interesting because when the teacher first arrived she came just to talk and determine what she would need. She told me her plan was to combine teaching the children. So she was planning to teach James, Margaret and Joseph ALL AT THE SAME TIME! I was shocked at this! James is very advanced in several ways and can read at a second grade level, Margaret is smart but has a VERY difficult time sitting and focusing and Joseph is slow to take in information and respond to questions. The children are all SO different I did not know how she could possibly teach such very different children. I told her she could not do that. I said they would all have to be taught separately and maybe over time Margaret and James could be taught together. The teacher said she did not have time in her schedule to do that. I told her if the children were all in separate homes she would have to find the time. I said it is convenient for you to be able to drive to only one house but the children cannot be grouped together for lessons. She said she would have to look at her schedule but she was not sure on if there was time. I told her that was not my problem and it was not the children's problem. It was her problem or the school district's problem. LOL Can you believe I said that!?!? LOL She just stared at me and said she would have to get back to me after she examined her schedule and I said that was fine. LOL Score one for mom and ZERO for the school district. I hope I can keep the score like that. :)

Gotta Laugh or You Will Cry

So I have not been on here a lot lately. I have been feeling really tired and school has been weighing me down. As a matter of fact I should be working on the 15 page paper I have due this Sunday but instead I have had to concern my day with the children. I get up and the children are awake. I stop by their room and tell them to wait for just a bit while I shower. I was gone for about 20 minutes so I could shower and get dressed. When I went back to their room and opened the door the first thing that hit me was the stench!

I open the door and there is poo smeared ALL over the floor of the room. James had made the mess and taken a couple of his toy trains and used them to smear the poop around. After a moment of yelling at them I had to start a bath and give James and Joseph a bath (Margaret got her bath yesterday). I still have not figured out how to get the poop off the trains. As for the floor I made James pick up the larger chunks of poop and then I made a token effort to try and clean up the mess but somewhere between the smell and the fact there were still pretty bad stains in the carpet I knew I met my match. I herded the children downstairs and called my favorite carpet cleaning people, Stanley Steemer, to see if they could come out and clean the mess. Thankfully they had an open appointment today and they are there now which is why I have time to write this post. After using a $25 off promo code (ANY25)I have the cost to clean and deodorize the bedroom and stairwell (from an earlier poop incident) was just a small $131 (sarcasm here people). With this, John and his ticket, car being towed and other issues I just feel like we are hemorrhaging money right now. And trust me when i say we DO NOT have money to be hemorrhaging!

Well the carpet cleaning guys have left and my house smells MUCH better. As least I can breathe in here again without gagging. Hopefully there will be no more poop smeared anywhere in the house....I hope! Off to work on my paper.....

New Year and New Hopes

Soooo many things have been changing in my life and not all of the are for the better. First off I have been slacking in posting lately. When life starts to get overwhelming I don't talk to people anymore or even post online. I think I do that because I feel like all I would have to say are negative things so I would rather say nothing.

First off my husband and I have not been getting along for awhile now. We have been on the verge of divorcing for the last 12 months. Things get better and then get worse, way worse, and then better. Things had just been building up going into December. John was driving me crazy by being such a slob. It was to the point that if he was a roommate I would have kicked him out of my house! Then things got bad for Christmas because he did not get any gifts. I did feel bad but I had spent all the money on getting the children gifts. He later told me he was resentful of me buying all the toys for the children and he did not get to pick out anything specific for them.