Where did the last month go???

Photo Credit: Chasedumont.com

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

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

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

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

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

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

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

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

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

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

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

Happy Birthday Bill!

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

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

My Baby lost her first tooth!

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




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

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

I Had A Moment Yesterday...

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

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

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

Margaret Was Not Having A Good Day!

Margaret making herself
comfortable. We JUST got
to the room. 

So Margaret was not having a good day today yesterday! She did not want to wake up and spent most of the day in bed. We were having a lot of problems with her. So after spending 19 hours in bed and not wanting to eat or drink it was time to take her to the hospital to get her some fluids. We went to Phoenix Children's and things went pretty well.

I was really worried about her getting an IV. It turns out they did a super job! She did not even cry. They distracted her with an iPad and put numbing medicine on her arm so she did not even feel the stick. They put a bag of fluid in her, swab her throat for strep, and took x-rays of her chest. The x-rays were negative so she did not have pneumonia are any other respiratory illness. We heard back that the strep swab was positive even though she does not have a red throat, blisters or white spots in the back of throat. 

Margaret FINALLY eating a goldfish cracker!

As Margaret was getting re-hydrated I noticed she because to sniffle again.  I could hear her snorting.  Then she began to cough.  At first it was a little cough but as time went on the cough got worse.  Right before we were discharged she was coughing hard again and then she vomited.  I told the nurse and doctor that I thought it was the nasal drainage that was irritating her throat which caused the cough that in turn caused her to reflux (vomit).  They did not listen to me and we left the hospital with a prescription of antibiotics to treat the strep and a medication for nausea (which I do not think she has).  Today we have an appointment with a pediatrician.  I am taking all the children.  The boys need to be swabbed for strep and I was just told James vomited everywhere.  Poor Bailey said she not not even sure how to clean the mess. Can't wait to see what the pediatrician has to say!

It Takes A Village

Photo Credit: perspectiveparenting.com

It took a village, at least a lot of hands, to take care of this mess!  I was recently woken up because Margaret had barfed all over James and his bed. Bailey and her grandfather get up too. Bailey cleans Margaret off while her grandfather changes James bedding and takes the bedding and all of the clothes and throws them into the washing machine. I take James and go get him medicine and a new change of clothing. Margaret gets out of the bath and I get her some medicine too.  We get everybody cleaned up and straightened out.  With the three of us it took about an hour and half to get everyone sorted out and back into bed!  I hate that Margaret is so sick but I am not sure what to do for her. I don't think taking her back to the urgent care would be helpful at this point. Thankfully we have an appointment with a new pediatrician Tuesday. Hopefully the pediatrician will be able to help us.

Now the Third One is Sick Too!

Joseph in the Urgent Care getting
his breathing treatment

It has been a long weekend!  Thursday is when Margaret was sick and barfing all day.  She would vomit and then pass out.  So she was taken to the urgent care where they gave her some medicine.  By Friday James was coughing too and barfing.  So Friday night I took James and Margaret to the urgent care.  Even on medicine Margaret was still barfing and James had joined her.  The doctor at the urgent care said there is something viral going around and there is not really anything else we could do.

Saturday Margaret and James were still sick.   Margaret still coughing and vomiting and able to hold down little.  James is coughing also but mostly could hold down food.  Saturday evening I noticed Joseph's breathing was getting noisy.  I put him to bed.  By 1:30am Bailey came to wake me up and said Joseph does not sounds right.  She brought him in and I could tell he was having a problem and we would have to go to the urgent care.  It had been all most 2 years since I last had to do this for Joseph.

I was lucky in that I filled out paperwork and gave the urgent care Joseph's information the day before.  I felt pretty sure we would be in there within a day or two.  So I was just able to go in and not have to worry about filling out paperwork last night.  We were there from about 1:45am to 4:30am.  Joseph had his steroid and a breathing treatment.  We get home at 4:30am and I find a naked Margaret running around the house whining.  I see Bailey she tells me Margaret had vomited all over the both of them.  So Margaret was stripped down.  I asked Bailey to put Joseph down to sleep while I gave Margaret a bath. I got her all cleaned up and sent her on her way.  Bailey made a pallet in the living room for the two of them.  They laid down and I finally got to make it back to my bed near 5am.  It was a LONG night last night!  Glad it is over and hope all the children are finally on the road to recovery!

I have to give Bailey a lot of credit. She has been cleaning up barf and poo all over the place. I told her thank you and that I would have to treat her to something special for all the extra hard work she is had to do lately.

Sick and Barfing

Margaret sick and sleeping the day away!

I have been working on trying to rebuild my relationship with John. So far, according to him, I am not doing a good job. The first weekend when he came down I did not see him except at night. John complained and said he was not getting to see enough of me. He was interested in seeing the children but he was more interested in seeing me than the kids because he was trying to build a relationship with ME and not the children. I understand that and I agree, I think he is right, so I tried to make things better. The next weekend I spent half the day with Bailey and then the second half of the day with John. That was a little better. This weekend I went to Vegas. I told John, two weeks ago, that I was coming into town to get my car fixed and Saturday was going to be my day. I moved when I was going to come into town because John said he would not have time for us (me or the children) on Sunday because of church and lesson planning for school (and I am sure the Super Bowl somewhat). So I decided to come into town on Thursday and leave Sunday. I told John I was coming to town to let a friend fix my car. Saturday was my day to be alone. He said ok and told me Friday was his busy day. He had to go to work, then to the therapist and finally to a church group. I said that was fine. I was disappointed he did not want to skip the church group and come home to see the children and I but I was ok with it. He felt he had things he had to do so I was ok. I see John for a bit on Thursday night before we both pass out in the bed.

Picture of John's Fridge AFTER shopping!
Bag of sandwiches on the bottom shelf  I
brought with me along with the medicine
and Gatorade on the top shelf.

Since John was going to be gone Friday I spent the day with Chelsea and her children. I got the kids up and gave them a bath. This is when I notice John’s condo was not clean. The place had not been vacuumed, counters wiped down, trash taken out or bathrooms cleaned. It made me feel as though he was not concerned about making a good impression at all. I knew I could clean it but it would only make me mad. It as NOT how I wanted to spend my day. I asked Chelsea if she knew of someone to clean it and she said she would. I told her they job was hers if she wanted it. I went to pick up Chelsea and her daughter at 10:30am. I take us over to McDonalds (the ONLY one I will go to during the winter since they keep it really clean) and we let the kids play. They had a big time. Chelsea’s son got out of school at 3:15 so we went back to her place. I dropped her and her daughter off while I took the children with me to the store. The amount of food in John’s fridge, AFTER he went shopping, was pathetic! I picked up stuff for dinner along with more breakfast foods (the kids FAVORITE meal of the day), more milk and some fresh fruit. I spent $60 on food. I went back to pick up Chelsea and her children and we went over to John’s place. Chelsea’s son is a little older than my children so the boys were having fun and going wild. Nothing like two hyperactive, autistic boys playing in a condo together…lol. They played while I straightened and Chelsea cleaned. She got the kitchen cleaned and both the bathroom before the had to go. I stopped and fixed the kids something to eat. After eating Chelsea and I along with 5 children piled into my car (ONE of the new times I enjoyed having my HUGE van….LOL). took Chelsea and her children home. When we got there James had to pee so we went up to her place. The kids played and Chelsea gave me the blanket she had knitted for James and Joseph for Christmas. They are beautiful! Then she showed me Margaret’s blanket. It is VERY neat! I am looking forward to when she finishes it! Sean (her husband) arrived home and I asked about the time. It was 8:30pm. I had told John I would have dinner for him by 9:00pm. Sigh, I knew I was late. I hurried the children downstairs and out to the car. We get to John’s place and as we are about to walk in John pulls up. We go upstairs. I tell him that I do not have dinner made but I would make it. I told him I was going to cook a steak with salad and béarnaise sauce and fresh broccoli. John said that was too much to eat this late. I said ok. The kids were happy to see him. It was the first time we had seen him all day. They stayed up for another hour and were put to bed. John and I talked for a bit afterwards and we went to bed because we were both yawning.

On Saturday we got up late-ish (8am). I said I had to get ready quickly since my appointment was at 9am for the Aveda school spa. Chelsea ended up meeting me over there thankfully so we would not be late. As I was leaving John made me feel guilty or at least upset. He kept asking me if I was going to stay to eat breakfast (no, we got up late and I would not make my appointment) will you come over after you are done at the spa (no, I told you two weeks ago that Saturday was MY day), will you come back later(no, I want to spend the day away from the kids). The responses I wrote are not what I said for the most part but what I SHOULD have said. I told him two weeks ago when I planned this trip that I was spending the day at the spa and after that I was going to have my car worked on by Sean (He is a master mechanic). I knew there was something going on with the brakes and I had to get it fixed. After that I was going to a hotel room because I wanted to get a good night’s sleep before having to drive back the next day. John was unhappy. He sent me a LONG text that night. I was not even sure how to respond back.

 I offered to go to McDonald's with him Sunday morning so we could talk and the kids could play.  It allowed the children to burn off energy while we got to speak.  In the end we more or less made up but it is hard.  I want to love him.  I just wonder about the motivation of getting back together.  Then he says he loves me but turns around and emotionally punishes me when he is not happy with what I am doing.  I am not up for that anymore.  Basically if you cannot be a positive influence in my life I don't really have time for you.

This week has been SO busy at work I feel like I am spinning in circles.   I know I am not but it feels that way!  On Tuesday Bailey took Joseph with her to the doctor's office.  She was there to pick up her medical records.  While there a car turned into the parking lot quickly and hit her.  Luckily it was at a fairly low speed but she dislocated her should and got a hairline fracture on her hip. That was the cause of some drama.  Then on Thursday Margaret was barfing her head off to the point of passing out so Bailey took her to the urgent care.  That was $40 I had to pay in a doctor visit.  That was the same day I got her medicaid stuff worked out but her prescriptions went to Walgreens and it is basically the ONLY major retailer that does not accept Margaret's medicaid plan.  I had the prescriptions transferred over to Safeway.  Walgreens waited until the LAST minute to transfer the prescription over.  They were wanting me to come back but I would have had to pay $30 for the prescriptions.  At Safeway I paid nothing but I did not get home until about 8:30pm.  It was a LONG ass day!  I was annoyed with Bailey because I told her just to wait on me and I will do the prescriptions later but she wanted to go to Walgreens so I told her to go.  Then she changed her mind but I told her to go.  I am mad at myself for not sticking, yet again, with my first instinct which was to just wait for me and let me get the prescriptions fulled.  

These are just two of the six cones in my floor.
Each cone is covering up a wet spot on the
floor where barf has been cleaned up
from poor Margaret.

Friday there was more Margaret barfing.  The poor girl can hardly keep anything down.  James had started to cough and barf some too.  I took them to the Urgent Care when I got home.  Cost me another $40 for James to see the doctor.  Margaret was free with the secondary insurance.  While there we were told Margaret was doing ok all in all (a bit dehydrated but ok) and so was James.  The doctor said it is something viral going around and there was little we could do.  I was a bit upset with Bailey again.  I will have to ask her to be quiet while at the doctor's office. She was interjecting information in when I did not ask.  I don't like that AT ALL! At one point she seemed a bit rude.  I was not feeling well myself by the time I took the kids to the doctor.  We left the office and I stopped by Sonic to get something cold to drink for sore throats and then headed home.

I got the kids to bed and then passed out myself. This morning when I got up and I SO sick.  I can tell I have a fever and I feel bad.  Writing this is tiring it is has taken me all day to make this post happen.

Friday (yesterday) was also a day I was upset with PITA.  I let him keep $700 in child support last month to help him catch up on his bills.  I write him yesterday and ask how much is he going to send me.  He writes back and says his paycheck was only $1400 and after paying rent ($800-something) then he would have nothing if he paid me AND he would not be able to come down here next weekend.  I said I NEED the money to make MY bills so he says *I* should tell HIM how much to send.  Are you serious?  There is no winning for me in that decision.  What can't he just take care of his end of things???

SO tired and SO sick.  I am done.  I hope this post makes sense...lol.  Night people!

Settling Into Phoenix

I have been busy trying to settle into Phoenix.  With my medical insurance FINALLY kicking in I am starting to make appointments for the children.  I tried to call a GI doctor to take Margaret and Joseph to but the doctor requires a referral.  I have to find a regular pediatrician first I guess. I have appointments for the children for a developmental pediatrician.  I am glad I got that done! The first one is February 19th.  Joseph will be going.  I am hoping the doctor will be able to help me figure out what is wrong with him.  I also got an appointment with an endocrinologist for Joseph.  This will be the first time he has seen one in awhile.