Friday, August 26, 2011


It is interesting that I am posting this because I think today is one of the WORST days I have had in awhile. I think it is funny because I know someone recently read my blog and she told me she thought I was a strong woman. Strong? Strength? I sure do NOT feel as though I had that today. :(

The day started well enough. I got woke up at 7:30am and I waited to hear the garage door open down stairs because then I would know my husband had left for work. We have not been sleeping in the same room for the last few nights. I like the bed in the guest room and it is cooler in that room than our master bed room. I get up and shower. Then I get the children up and I shove them out the door. We had an appointment to go and have Joseph's foot re-casted for his AFOs. Apparently the guy at the prosthetic center had a problem reading the instructions. So even though the prosthetic center had casted both of Joseph's feet last time the manufacturer who makes the AFOs discarded the left foot since they were instructed to only make the right foot. Of course this mistake was not discovered until only one completed AFO was returned to the prosthetic center 2 weeks later.

I rush us out the door and I run though McDs to get something to feed the children while we are waiting at the prosthetic center. The center is a 30 minute drive from my house. When we arrived no one was there and I was pleased that we were able to get in and out pretty quickly. I load the children back into the car and realize I forgot water for James. He started to whine. I told him we would be home soon. As we started to head home I took a wrong turn and James pointed to the Vegas Strip and he kept talking about the "great big city" (from Pinky Dinky Doo). I had what I thought was a moment of kindness and I told James we would go and see the great big city. So I changed course and drove down the Strip. I thought this would be fun, even though it was during the day, because he had not see the Strip before close-up. As I leave the Strip on the south end he starts to cry. Then came the hysterics. He kept telling me to turn left. I knew he wanted to go back. I still have 20 minutes to drive to our house. James is now in the back screaming his head off, Margaret is screaming too because James is screaming and Joseph is crying because of all the noise. I get to listen to this for twenty minutes as we head home.

I am sure most people would wonder how I could drive home in all the noise and I will say I yelled at them a few times to be quiet but to be honest I have gotten used to the noise for the most part. I often have to listen to at least some screaming, by someone, while I am driving. It is not ideal but what choice do I have since I have to take the children everywhere on my own.

In, a smart and yet not smart move, I decided to go to Quest before going home. I wanted to pick up the lab results for myself and Joseph from the 19th. I decided to do this because John has been carpooling with a co-worker and I was not sure he would be home by 4:30pm for me to get the results so while I had the extra energy and the temperature had not skyrocketed yet (it was 110 today) I went to Quest. James was still crying and screaming to go to the great big city, Margaret was crying and so was Joseph. I got them all out and put Margaret and Joseph into my little wagon.

We went into Quest. James was screaming hard now and I could see the scorn on the faces of some of the people there. What was I to do? If I waited to get things done when all the children were happy I would get even less done than I do now. I filled out the release forms and waited. Margaret stopped crying and was running around the waiting room. She was touching EVERYTHING in sight and taking people's items that were laying out. Joseph was being a good boy strapped into the wagon and I was finally able to get James to calm down by getting him a cup of water. A very kind older women and her daughter tried playing with Margaret. Everyone always thinks she is super cute, and she is, but she will not talk back to you. So after they had tried to ask her a few questions and she did not answer I told them she had Autism. They asked a few questions and I answered them. All the while trying to keep and eye on James who was now playing with the water cooler. He kept filling his cup, drinking the water and then let it dribble down the front of his shirt. I saw what he was doing but I did not care. My choice was to let him continue or to make him stop and I knew he would start screaming again if I did. After a 15 minute wait I was told I could not have ANY of Joseph's results. The lab lady said she could not release the results piecemeal to me. I had to wait until ALL tests results were completed. I told her they had not done that before and she said I should not have gotten the results. She did give me my blood work and gave me a print out of Joseph's tests where it showed if it was in the lab or not.

I noticed on Joseph's lab work that several of the tests that had been ordered had been deleted. I asked her why. She said she did not know and I would have to call Quest to find out. So I took my blood work and the business card and headed back out to the van. I should point out I drive a 15-passenger van. The van is old but runs pretty well. My problem with it is that it is dark blue (I live in the sunny desert) and the air conditioning in the van cannot keep up with the searing hot weather. The van is like a giant blue, oblong convection oven. The air conditioning cannot even being to cool the van during the stop-and-go of city driving. We did not have far to go but the children's faces were all ready beet red by the time I got the car started.

I drove home and called Quest. I tried several times to get though to a human being. They make their phone system in such a why to stymie you but I was not going to be deterred. I wanted answers! On my fourth phone call I got the operator and she put me over to client services. There I spoke to a lady telling her I wanted the reason why the tests where deleted. She said she could not give me test results. I said I was not wanting test RESULTS I wanted to know why some tests were DELETED. I pulled into our community by this time but since I was on the phone I just circled our block. I had to circle it three times by the time I got off the phone. She finally got back to me and said the tests were deleted because the samples were not frozen. The lab drew the blood but did not label the vials for freezing so the samples were ruined. The tests that were NOT run because the blood was not frozen were the lactic/pryvuic acid tests, the Fragile X tests, and the MicroArray DNA tests. Some of the MOST important tests I needed back! I was LIVID!!! Poor Joseph has to fast for the acid test.

I pull into the house and unload the children (this is 3 hours after we initially left). More screaming is involved because James did not want to come home. I get everyone inside and into the living room. While I am in the kitchen getting some water and a bottle for the children, gone for about three minutes, they pulls a lot of the stuffing out of my couch. The poly-fill stuff is ALL over the place. I pick it up and leave them the water while I look to see what I can fix to eat. When I come back I see Margaret taking the water bottle and pouring it out all over the floor. I just take it all in stride and I turn around and leave to head out to the mail box to pick up the mail. I thought there might be a coupon for pizza in there. I know the kids LOVE pizza and we had not had it in a few weeks. When I get back into the house, again only gone for a few minutes to walk across the street to get the mail, I come back in to find all the stuffing in my couch back out. I lose it now. I yell at them and tell them to pick up the stuffing and put it back. I help because I KNOW they would NEVER do it on their own.

I move into the kitchen and sit at the table. I tried cleaning off the table a few days ago but paperwork from the children and mail always seem to take over the space. At the table I can see into the living room. So far so good in there as I hear Sesame Street playing. I spent about 15 minutes on the phone calling the neurologist's office (between being on hold and actually talking to a human being) to tell them about the blood work and that they needed to reorder the tests. I tell them I will be in at the end of the day to pick up the lab work because I figured John would be home in time for me to get there before they closed. This way I could take Joseph tomorrow (Saturday) and get the blood work re-done. It will take 2 weeks to get the DNA test back so I wanted to get the blood work done ASAP!

I check the mail and find Pizza Hut coupons. Yea! I will order pizza for them and hubby. I am not a huge pizza fan but I was hungry so pizza was working for me. I order the pizza and about five minutes later the door bell rings. James runs to the door saying pizza. I have NO idea how he figured it out but he did. I knew it could not be the pizza guy. I answered the door. Even though I had looked at my master calendar last night AND this morning I still forgot about my Nevada PEP worker coming over. I let him in. I start another Sesame Street, since that is what James wanted to watch, and we went into the kitchen. I try and scoot move of the piles of paper work on the kitchen table over to make room for the NV PEP guy.

He sits and starts to tell me that he had been trying a few places to find me respite but he had been unsuccessful so far. He said I was placed on waiting lists (this is the story of my life) and he was hoping to hear something soon. He said one of the places needed a medical diagnosis, not the educational diagnosis provided by the school, and I told him no problem. I was fortunate to have thought ahead on this one. I had Dr. Moore write letters for me giving the children's medical diagnoses and some recommended therapies so I could give these letters to the local Regional center, school district and to any other agency that wanted something more specific. I printed that information off for him and handed it over.

The doorbell rings again. Twice in one day. I answer and this time it is the pizza guy. I take the pizza from him and I herd the children into the kitchen with me. I give the children pizza and another water bottle (this time half water and apple juice at James' request)and I sit to try and finish my talk with the NV PEP guy. We talked for a bit about biomedical treatments for autism, vaccines and other autism hot topics. I printed information off for him too. During that time I was not paying enough attention to the children and someone put the water bottle filled with diluted juice in the floor. Joseph found it and poured it out on himself and all over my kitchen floor. I shoo the children out of the kitchen again and start Thomas the Train for James. The NV PEP guy and I were exchanging the last bit of information. I wanted him to look for SP and OT people that would come to my home. With winter coming (sickness) and all the work involved in getting the children out I would LOVE for someone to come to me. I told him one of the MOST important things I was looking for was a feeding specialist to work with Joseph. It is SO much easier if you can find a feeding specialist that can come to your home instead of making food, packing it and taking it to the appointment.

As the NV PEP guy gets ready to leave I look into the living room and I see the stuffing of the couch out ALL over the place. He leaves and I yell at the children again and help them to clean up all the mess. The Stuffing was EVERYWHERE! Sigh! Now I remember why I normally put Margaret and Joseph down for a "nap" in the afternoon. Joseph normally sleeps but Margaret does not. She will play in the room though so that works for me. Trying to have them all up is a nightmare if I cannot keep an eye on them at every moment.

After the mess was cleaned up I went back to the kitchen tale. I could see them and I wanted to finish my first slice of pizza. As I eat I finally get to look over my blood work. I have been feeling SO tired for a LONG time but I was not sure why. I thought it might be my thyroid since I have autoimmune thyroid disease. Sometimes my thyroid works and sometimes it does not. When it is not working I can go rather hypo. As I look over the blood work everything looks pretty good except a couple of things. One is my total cholesterol and HDL is too low. I have NEVER had that happen before. My LDL was in the normal range. I had a high C-reactive protein, twice the upper limit, and I know that is NOT good. I also had low iron levels (low hemoglobin and hemocrit, high TICU and UIBC with a very low % Transferrin Saturation). This explains SO much. Being so anemic is why I am SUPER tired, have a hard time thinking clearly, feel winded, dizzy and weak & sometimes have massive headaches which is not normal for me. I have been trying to eat a higher iron diet since the babies had been born but I am still super anemic. I will have to get on iron pills again.

As I finish reading my blood work I call John. I ask when he will be home and he sounded winded and cross. He was moving things around in his room and he said he was looking for his co-worker who he car pooled with but that she was not around. He said she knew he needed to be home by 4:30pm. I said ok and I was going to start to tell him about the blood work when I see Margaret in the living room taking the water bottle (I had only half filled this time and it had diluted sugar-free lemonade in it) and she was shaking it out all over the couch and floor. Again I lost it. I yelled at Margaret. She did not cry but she knew I was mad at her. I told her, "No, no do NOT pour the water out!" You have to keep sentences short and simple for her or she does not seem to listen to them. John heard me over the phone and said he needed to go. I said ok and hung-up.

My day had been such a misery. It started out in a hot car, screaming children, me screaming at the children to be quiet, stuffing, more stuffing, water pouring, screaming, stuffing, pizza, water pouring, stuffing, water pouring, and me yelling. It had been such a LONG day. Things were not going well. I looked at my phone. It was 4:20pm. I had not heard anything from John so I text him and ask if he is coming home. I get a text back saying he was leaving his co-worker house, where he parks his car, and was heading home at 4:25pm. I knew I would not be able to go and get the lab work from the neurologist's office and we would have to wait until next Saturday to do the blood work unless I wanted everyone to get up super early (4:30am) one morning next week. This way I could be back home by 7am when John would have to leave to go to work. Taking all three children to the lab by myself id just NOT an option!

I was SO depressed. About the blood work for Joseph, about the blood work results for me, John not being home on time, the way the children had behaved and life in general. So at 4:30 I left the living room to the mercy of the children and went upstairs to lay down. John comes home at 4:50pm. I guess he looked around for me down stairs and did not see me. He came upstairs and opened the master bed room door and then slams it. I could hear him coming. He barges into the room and asks me in an annoyed voice, "So what is the plan?" I said, "Nothing. I am just laying here." Then he gets really angry with me and yells at me. After all the yelling today that was the last thing I needed. He yells at me wanting to know why I was not going out. I said there was no need. I needed to go to the neurologist to get lab work but they were closed. Then he yells some more, but I know it really is not "at" me, over him not being able to get there in time and how plans had changed on him. I asked him why he was yelling at me when he was really angry at his co-worker. He just got more annoyed with me and then left. I was crying at this point. Instead of coming home and saying he was sorry he was late and it could not be helped and cuddling up in bed with me, maybe even asking me why I was upstairs in the first place, I get yelled at.

So crying I went downstairs gathered up my stuff and tried one last time to talk to him. He tried to turn everything around on me. This is typical of how John treats me when something goes wrong. I am ALWAYS at fault. Most of the time I can take the crap without a problem but not today. Not with all the yelling and screaming in the car and house. Not with all the bad, sad and disappointing news. Not today...

Now I am sitting at Starbucks. It is comforting to hear the people around me even though I feel SO alone. I tried to call my two friends in my phone but they are busy. The rest of my phone directory is filled with therapists, clinics and doctors. I need to try and figure out how to make some friends. Being alone, or at least feeling that way, sucks. THIS is one of those moments that I do not feel strong. Not for anyone, especially myself.

Tuesday, August 23, 2011

We have a plan!

Yesterday was SUPER busy but there were good things that happened. The MOST important thing that happened yesterday. I had a list of phone calls I had to make yesterday. One of the calls I had to make was to the Hypotonia Center. It had been two weeks since I last had contract with the clinic when I sent in Joseph's medical paperwork. After giving them a call I was told that I would be getting a call from an appointment setter in a couple of days.

I was not happy about waiting a few more days but heck, I had all ready been waiting a long time, what was a few more days. To my surprise I got a call 30 minutes later and the appointment setter said there was an appointment available on December 22 at 12:30pm and did I want it. I said yes but then I hesitated because the appointment was SO close to Christmas. I told the appointment setter that I wanted the appointment and if I needed to change it I would call back. YEA! We have an appointment!!!

We will be meeting with Dr. Ronald Cohn. He will be seeing Joseph. I have to admit after looking over his web page I think he is highly qualified to help Joseph. This gives me a LOT of confidence!

The ONLY reason I would cancel the appointment now is if the DNA test showed something. I cannot wait for the test results. I know the geneticist thinks Joseph's DNA is normal and the doctor might be right BUT I want proof! If the DNA is normal then I think we have NO choice but to move forward and go to the Hypotonia Center. My next big hurdle will be to raise money so we can go. That will be my job....

Monday, August 22, 2011

A Pee and a Poke

Thursday was a day full of fun...NOT! I left for a while to get some school work done and my husband was nice enough to try and collect a urine sample from Margaret and James. Now keep in mind these children are not potty trained. We were given these plastic bags with an opening that is sticky. You peel the sticker off and attach it to the private part area. All this being said it seems to work pretty well for boys, or so I thought, and for girls I had NO idea how this was going to happen.

I apply the collection bags first. Margaret was so unhappy that she was screaming and flailing around but I got it on her. Then I put her diaper back on and hoped it would work. I then put one on James and I thought that went pretty successful. So then I left and let John do the first collection.

When he checked the bags had come off and spilled any contents into their diaper. So round 1 was a bust. John placed another bag on them. When I got home tow hours later I checked the children. Again the bag detached from the skin and allowed the contents to leak in the diaper. So yet again Round 2 was a bust. We tried one last time and waited until bedtime. Round 3 a bust! If anyone has any ideas on how to get a urine sample from children who are not potty trained and have limited verbal ability I would LOVE to know. :)

Since the urine collection did not work I thought I would still take Joseph into the lab to get blood drawn.

So Friday morning I was suppose to get up early and so was John because the blood test Joseph had to do was fasting. We over slept though and did not get up until 8am. Joseph was in a good mood though so we went ahead and left. I needed to get blood work done too so I thought we could "kill two birds with one stone" by getting us both tested. We got to the lab (Quest) and signed in. I thought we would get in pretty soon because we had fasting tests but little did I know how wrong I was.

I brought a bottle in the diaper bag for Joseph so i could give it to him as soon as he had his blood drawn. Joseph was his "good" baby self though and he crawled around on the floor entertaining himself by crawling/hopping like a frog. The people around us thought he was adorable. He crawled/hopped around and under the chairs of various people. Then he "hopped" across the floor and would just bump into people or furniture before he would stop. Again, the people there were really kind as we waited and did not mind.

After 75 minutes passed we were called up to the desk. I handed the woman Joseph's lab slips from the neurologist and the geneticist. The tests for the neurologist she was able to process because he had used a lab slip and the tests were all coded. The geneticist on the other hand wrote the lab order on the prescription pad. There was at least one test she could not find so she told us to sit down while she called someone to see if the could do the test and determine how it was

So more waiting in the chairs. Joseph, still having not eaten, was being a good boy. He was crawling around bumping into people and furniture. About 15 minutes later I was called back up and we were officially signed in. Just an hour and a half after we first arrived.

So more waiting and we were called back another hour later. I went into the back and held Joseph. I was SO proud of him! They checked his right arm and could not find a vein. I told the people that he was a preemie and most all his veins were shot. They tried the left arm and found a tiny vein deep under the skin. I was worried for him because I know this could go VERY wrong.

The woman there knew what she was doing. She put her gloves on and Joseph whined. This was the first time he had made any sound besides some happy babbling. I held him tight and she poked him with the needle. Joseph did not even cry. He just whimpered for a few seconds and he was done. She did such a good job sticking him that she was able to get all 7, yes it was that many, vials of blood out without having to move the needle around or anything. Yea! By the end I had Joseph laughing. To make things even better momma went next. I had my blood drawn too. Then we went to the lobby where I let him lay in the floor and drink his bottle. It was a little after noon and I knew he had to be starving! After he had his bottle we went home. What a long day and it was only noon!

I hope to have the results of all the blood work back on Wednesday. The MicroArray DNA test will be another week after that. Can't wait to see the results!

Monday, August 15, 2011

A moment of contemplation

As I sit in my kitchen listening to the loud swishing sound of the water flowing in my dishwasher I think about the people I chat with on Facebook. They are from all around the country, leading their life as best they can but we all have one thing in common...we have a child with a disability.

I know I and many other women (and a few men) chat about the disabilities our child is facing. We talk about the struggle to find a diagnosis when they start exhibiting behavior that is not normal for them. As we turn from doctor to doctor looking for answers we tend to either find more questions or no answer at all. Some of these women I know have been accused of Munchausen syndrome by proxy by local school districts because they insist there is a problem with their child. They want to find the root of the problem but all they are getting are doctors who will only treat the symptoms.

It makes me sad that so many people are turning not to a doctor but to other parents in hope of finding an answer because the doctors just don't know what to do. This is the case for my little Joseph. The specialists are at a loss for what is wrong with him but they treat him symptomatically and pat me on my head and send me on my way. With all we have at our disposal in modern medicine we should be able to make a diagnosis.

Sunday, August 14, 2011

New Medical Code for Wandering!

I wanted to make sure I share this. On October 1, 2011 there will now be a medical code for Wandering. It can used for developmental delayed individuals along with autistic children. This code is general and can be used for people with dementia and Alzheimer’s disease.

Need to remeber to pack clothes when leaving...

OK, now that I have a bit more time I thought I would write about Margaret and how she interjected some excitement into our trip to Utah and how surprised I am that Child Protective Services weren't called on me while I was there. LOL

After the appointment at the geneticist James kept asking to go to "the place where the kids play". This is what he calls McDonalds. John and I knew the children needed some time out of the car seats so we went to look for a McDonalds. There are only two in St. George according to the GPS. The first one I saw as we were driving to the doctor's office and I noticed there was no playland there. So we headed to the other McDonalds. OMG, this was one of THE busiest and dirtiest McDs I have EVER been! The play area was pretty small and there were LOTS of kids there playing. The equipment was super filthy but Joseph was determined to crawl around in the floor. I used three baby wipes just to clean the filth off the little toddler slide Joseph was touching.

John went and got food. I won't worry you with the unsanitary things John saw the people assembling the food were doing. He did tell the manager and to their credit they did pull all the food that person was touching. We got chicken nuggets and fries for the children. Margaret LOVES fries.

James was playing and I was feeding Joseph. We gave Margaret some fries and a couple of nuggets and we were letting her feed herself. This was mistake one. The second mistake was neither of us were keeping a close enough eye on her. She has never learned not to stuff her mouth full. She just shoves food in and does not stop. The next thing I know I hear her gag. I look over and I see her mouth is STUFFED full of fries. I knew what was about to happen next and there was nothing I could do. A couple of quick gagging motions, by this time John also knew what was about to happen and had his hands ready, and then she blew...

Margaret vomited ALL over John's hands. At first I thought we might be lucky since he caught most of it but apparently she still had a lot of french fries in her mouth because she gagged some more. Next came SO much vomit that John's arm was covered, got some on his shirt and pants and the floor was full of vomit. Margaret had vomit all down the front of her shirt and shorts.

I did not know what else to do since we were about to have to ride back to Las Vegas with Margaret stinking for the next 2.5 hours so after I helped John get cleaned up some I took Margaret to the bathroom. We get to the bathroom and I take the handicap stall. I take Margaret's shoes off and then strip off her shirt and pants so she is standing there with nothing but a diaper on. Keep in mind the day before I had scratched Margaret pretty bad trying to grab her before she ran from me. She is SUPER skinny being 25lbs and 36in tall and she is standing there with nothing but a diaper on. I go to the bathroom sink to get soap and wash her shirt and shorts and leave her in the stall. I washed her clothes and though they were not perfect they were a lot better but now they were very wet. So I think the next logical thing to do is use the hand dryer and dry the clothes off.

James has a problem with the vacuum running but it does not bother Margaret so I did not think about the hand dryer upsetting her. I turn the hand dryer on and the woman in the stall next to me comes out at the same time Margaret shoots out of the stall crying and screaming because of the hand dryer. To give the woman credit she looked at Margaret and just washed her hands and left. I ran the hand dryer some more because the clothes were still wet and Margaret screamed some more. This time she was hitting sensory overload because she started sticking her hand in her mouth (did I mention this could cause her to vomit?). Margaret is screaming, looking at me with her hand in her mouth, basically naked and behind the door to the bathroom as another woman came in. She stopped and stared at me and then Margaret. I could tell she did not know what to I was happy when she just decided to mind her own business, I was having enough to deal with without her trying to butt in, and I was able to finish a second cycle with the hand dryer. Margaret's clothes were still damp but they were ok and living in the desert I knew they would finish drying out soon.

I have learned my lesson. MUST pack clothes when heading out of town! Margaret is my vomiter. She gags and vomits over she simplest things. This story might be disgusting to some but if you have a vomiter in your life you will understand the humor in it. :)

Friday, August 12, 2011

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 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!

Tuesday, August 9, 2011

Raising money for Joseph!

My poor little baby needs to know what is wrong with him so we might be able to help him.  I have set up a site to help him raise the money we need to get him to the Hypotonia Center.  Please visit and donate.  Even if it is a few dollars it will help to get Joseph the care he needs.

August starts off with a bang!

So August started off with a bang of emotions.  Joseph went in for surgery on Monday (08/01).  John and I were scared that something would go wrong.  Joseph was having 2 procedures done.  The first was being done by the pulmonologist.  He did a bronchoscopy to see why Joseph has a croupy cough when he gets sick and it can depress his O2 levels. We thought it might be due to the earlier removal of a subglottic cyst that blocked about 80% of his airway.  We knew there was a large ugly place in his throat when he had the cyst removed so we were worried there was a large scar there.  As it turned out the surgery from the subglottal cyst removal was beautiful! There was NO scar tissue!  That was the good news but Joseph suffers from tracheomalacia Tracheomalacia is not a huge problem per se but it can be when Joseph gets ill.  When he gets sick is trachea will swell and then collapse as he is breathing out.  So we will have to continue to be vigilant when he becomes ill with respiratory illnesses and make sure he is rushed to the urgent care when he gets sick.

The second part of the surgery was fixing his cryptorchidism.  What is that you may ask. It is undescended testes.  To be accurate Joseph only had one undescended teste and the other was retractable.  So the urologist brought both testes down and put them in place.  The doctor also discovered that Joseph's urethra was a little blocked with a small bit of skin so that was fixed too.

When my poor baby woke up he was in SO much pain.  Of course the only thing the doctor ordered and the hospital gave him was children's Tylenol.  When the doctor came by I told her he was in pain and said when he BROKE his collar bone he crawled around on it WITHOUT crying.  If he was crying now it was because he was in a lot of pain.  So after saying all of the the doctor said ok and walked off.  No more pain meds for Joseph.  :(     Joseph was SLOW in shaking off the anesthesia from surgery but we were able to get out of the hospital about four hours after he was out.  I got to take him home and I was able to give him some of his pain medicine left over from when he broke his clavicle.  Once I did that my poor baby felt SO much better.  The next day he was pretty much as right as rain.  He had a few times where he cried a bit when he fell in the floor and landed on his rump but otherwise he played and had fun.

On Tuesday (08/02) Joseph missed therapy.  He will be out of therapy for two weeks while he recovers from surgery but Margaret and James went.   Then at 2pm the Nevada Pep worker came over and talked to me for a bit. 

Wednesday (08/03) there was therapy again for Margaret and James from 10am to 12pm. 

Thursday (08/04) I took James to see Dr. Moore.  It was a useful visit because we were able to discuss Joseph and Margaret first.  First we talked about the blood work and then I asked about adding a few more "problems" to Josephs LONG list (autoimmune hypothyroidism and tracheomalacia).  Then we discussed James.  James was diagnosed with autism.  He is either a VERY high-functioning autistic or he has Aspergers syndrome.  

On Friday (08/05) I made a TON of phone calls trying to find someone who will take the respite voucher from the Desert Regional Center.  So far I have not found anyone.  Then we had an appointment with the neurologist (Dr. Raja).  To start off with our appointment was at 1:00 and 1:30pm for Joseph and Margaret.  One o'clock comes and goes.  The waiting room is small and the children only have one toy to play with.  Then as two o'clock approaches we are finally called back.  We go into one room where I they weight and measure the children.  Then I am asked why I am there.  I tell her it is the follow up appointment for my children on their MRI and I had a list of items I had put together to ask the doctor.  

When I finally see the doctor James decides to act up and be a pill.  We are trying to talk to the doctor but James is crying and touching everything.  I ask John to take James out of the room.  As I am trying to talk to Dr. Raja and have him answer the items I have on my list I get a call from John saying he is leaving and taking James home.  I spent the next 20 minutes trying to get Dr. Raja to answer my items on the list but he avoids it.  He wrote some lab work for Joseph to recheck his amino acids again since they were off and he ordered a microarray DNA test.  Dr. Raja also thinks that the brain injury described by Dr. Orrison from her MRI is not as bad as Dr. Orrison makes it out to be.  

Now what makes this interesting is that Dr. Raja is a neurologist (brain specialists) and Dr. Orrison is a specialists that reads radiological films.  Dr. Orrison is so respected in the field that he used to edit a professional journal and wrote a text book.  I would LOVE to be there while Dr. Raja tells Dr. Orrison that he does not see the extent of brain injury Dr. Orrison described.  It would be a VERY interesting conversation!

This was my week and I am sticking to 

Tuesday, August 2, 2011

A Life A Bit More Complicated: Living with Surviving Quadruplets: So tired....

A Life A Bit More Complicated: Living with Surviving Quadruplets: So tired....: "In my quest to find out what is wrong with Joseph it feels like I have taken Joseph to see nearly EVERY specialist in Las Vegas. I know I h..."

So tired....

In my quest to find out what is wrong with Joseph it feels like I have taken Joseph to see nearly EVERY specialist in Las Vegas.  I know I have not but it does feel that  Here is a sample of the past week or so.

 07/18 - Nothing was on the schedule but I spent the day making calls to various places and tried to wrap up loose ends on the projects I have been working on.

07/19 - Tuesday is therapy day.  Joseph has therapy (OT and PT) from 10a to 12p.  Margaret also get (OT and PT) but today she did not get PT because the therapist had the gumption to get married and be on her So took the children to therapy (all three) and John took Caitlin to the airport so she could head home.

07/20 - Therapy again today.  For all the children.  James get OT and Margaret and Joseph gets Speech. 

07/21 - We got up and went to a WIC appointment.  I HATE dealing with state and federal programs because they are so poorly run but Margaret and Joseph really need the Pedisure 1.5 formula to help them put on weight.  The appointment went pretty well but it still took us 1.5 to get our of there.  Then at 3pm I had to take Joseph to an appointment with Dr. Close (urologist) to have him seen and get instructions before Joseph's surgery.  After the appointment was over I rushed home and had 20m before the babysitter for our once a month respite care came at 5pm.

07/22 - Margaret had an appointment with the eye doctor.  OMG, there was SO much crying and screaming involved with that appointment!  Margaret was very uncooperative but the eye doctor was able to determine that Margaret can see out of one eye with at leas 30/25 vision.  So for now she does not need glasses.  I think in one of Margaret's eye (left maybe) she may have John's weird astigmatism.  Hopefully Margaret will be more cooperative in the future and we can get a better eye prescription in her.  We got there a little before 8am and got out at 11:30am.  By the time I got the children fed I had 30m before my Nevada PEP worker came here. 

07/23 and 07/24 - I spent much of the weekend researching possible in-born errors of metabolism that could explain Joseph's conditions. 

07/25 - Made calls again on Monday.  I am trying to get Joseph into the Hypotonia Center at Johns Hopkins.  It will cost $1500 for me to take him but I think it would be SO important for him to go.  I have to figure out how to raise money to take my little pumpkin.  Then at 2pm my case worker from the Desert Regional Center.  This is the first time we met and we were going to go over the service I might could get for the children.  I cleaned the house and I expected her here at 2pm.  Then 2pm came and went so I called at 2:30p.  I got her and she was thinking her appointment with me was at 3pm.  When she arrives we spent 2 hours talking about the children.  The meeting basically ended by me being told that I would be placed on a waiting list for services and when they were available to me I would be told.

07/26 - Therapy day again.  Left the house at 9:30ish and got back around 12:30.

07/27 - Therapy day again.  Same as above.

07/28 - Luckily John is a teacher and out of school so he was able to help me this day.  John took Joseph to have castings done of his feet for his AFOs (foot braces to support the ankle).   Then  I took Margaret to Dr. Moore to see about getting her a medical diagnosis.  She was diagnosed with autism and hypotonia.  I have to see about her getting diagnosed with PVL and maybe cerebral palsy since she has mixed tone issues.  Then I rushed back home to get John and Joseph and we headed to the endocrinologist.  I wanted John there with me this time.  I was planning too tell the endocrinologist off.  This is the same endocrinologist that would not test Joseph for metabolic disorders and asked me if I was sure I would want to treat Joseph with growth hormone since keeping him small would make it easier for me to take care of him.  After my last visit I went to Yelp! and gave the doctor a review.  I like to do this because I know I would appreciate the information.  I think it is of no surprise when I say I gave him a scathing review.  Well, apparently either he or his staff saw and read my review.  When I got there I have to admit I was taken aback. I never thought he might read it. So he said he knew of the review I wrote and that he did not want it to effect his reputation. He said he would do anything I would like so I told him I wanted to referral to someone who specializes in metabolic and mitochondrial disease. I told him I would have to confer with my insurance and see what I can do about an out-of-network provider. He said that was fine and I told him I would give his office a call back and let him know where we would like to be referred. I also told him I would post about my visit today on Yelp. Nothing like the power of Yelp! :D

07/29 - James' turn to the eye doctor.  More screaming. Sigh, I wish those visits were easier.  We were there for 3.5 hours again but the good news is that James' vision, for now, is fine.  He will most likely need glasses in the future. Then later that day John took Joseph to the lab to get blood drawn for lab work.  The Pulmonologist wanted some blood work completed and I know he is going to check out Joseph's immune system.  

07/30 - Nothing scheduled.  It was a nice break.

07/31 - I took Margaret to the lab to get some blood work done on her.  I got back her MicroArray DNA test and she is completely normal.  Good news.  This blood work was for Dr. Moore and he is check the amino acids and other things for me.  I think he was also checking growth hormone.  If not then I will have to get that done.  At the lab, Quest, I had specifically set up an appointment for a pediatric blood draw since I know Margaret can be hard to draw blood.  I kept asking them about a place where we could lay her down but I was ignored.  I had to restrain her and then they stuck her.  MUCH SCREAMING and kicking later and they were able to draw about 4 vials of blood and we needed 6.  So they stuck her again.  At this point Margaret is hysterical and screaming help me.  They were able to draw about another vial.  Had to stick her AGAIN!  This time in the back of the hand and wiggling the needle around.  Margaret is on overload.  He blood is dripping out drop by drop.  They were talking about sticking her again and I KNEW I was NOT going to let that happen.  Luckily it did not come to that.  They were able to get what we needed THANK GOD!  Poor Margaret left there with three large gauze pads taped to her.  One on each arm and one on the back of her hand.  I felt so guilty I took her to the store and got her a balloon and a ball.  My poor baby!  

08/01 - Surgery day.  John and I were VERY nervous about this.  In light of Joseph possibly having a metabolic issue and the past track record he has had we were scared for him.  We left the house at 5:30am.  Joseph, being Joseph, was in a good mood and not unhappy in the least even though I had not fed him.  We check him in and  sat in the waiting area for a bit.  I went back with Joseph when his name was called.  I told the nurse who we were and why we were there (possible repair of groin hernia and to fix Joseph un-descended testicles along with having a bronchoscopy).  Joseph was a trooper as he continued to be happy and was being so sweet to all the people going by waving at them and haying hi.  The anesthesiologist came in and asked a few questions and I told her I spent a lot of time filling out the questionnaire and she should read it.  That may sound rude but I specifically came in on Friday afternoon to pre-register Joseph for surgery and spent 30m thinking of EVERYTHING I thought would be important for her to know and asking me at 6:30a when I am under stress, nervous and tired was not a good time to ask.  The nurse came back and we put Joseph in a wagon, he had been wanting to get in, and she wheeled him away.  The first part of the surgery was the bronchoscopy.  My poor baby was scoped right down to his lungs.  When he has been getting any respiratory illness his breathing gets bad and he develops this croupy cough (barking-like) with strider (noisy breathing) and you can see him trying to suck in air by watching the depression at the jugular notch.  Then I know it is time to take him to the Urgent Care center where they give my a steroid shot and some breathing treatments.  I thought this was due the scar tissue left from the removal of the subglottal cyst.  As it turns out the area where the subglottal cyst was removed looks great.  Joseph just has narrow airways .  His trachea is soft and rounded when it should be ridged.  This is called tracheomalacia.  Now I would like to determine if Joseph has Type 1 or Type 3.  Type 1 he may outgrow (hummm, may need that growth hormone !!stupid endo!!) and Type 3 would be permanent damage to his trachea from being on the ventilator so long when he was born.  I am not sure how to find out but I will ask the pulmonologist, Dr. Nakamura.  It is important to know because when he gets a respiratory infection he will need to be treated right-away and vigorously.  Then the second part of the surgery started.  Dr. Close, urologist,  looked at the groin hernia repair and she thought that was the reason for Joseph's undescended testicle but it was not.  She was able to pull it down and tie it into place.  Then the floating testicle on the other side (right) was also tied into place.  Then she noticed Joseph has a slight abnormality with his urethra.  It was a little lower than his opening so urination was a little difficult for him so she cut a tiny piece of skin that was in the way off.  She said it should be easier for him to urinate now.  Sadly, I am not sure if that is going to be helpful since he has been diagnosed with incontinence.  In any case it was all done.  When we met Joseph in the recovery area they had only given him some children's acetaminophen for his pain.  It was not enough.  Joseph was crying and whimpering in pain.  Now to put this perspective Joseph broke his right clavicle, significantly, and was still crawling around and did NOT cry!  I had explained this to Dr. Close when she came by and the did nothing for the pain.  Joseph took a long time to wake up and shake off the effects of the anesthesia but luckily Joseph was able to leave the hospital before the next dose of pain medicine was to be given.  I took him home and we had some left over pain medicine from when he broke his clavicle and I gave him that.  He felt much better then.  Our timing for home was perfect because his second dose of pain medicine was due right before bed.  He slept peacefully last night.

Image on bottom left show the trachea and how it is rounded and that is a sign of  tracheomalacia.
Oh, and as a side note. Whatever they used to tape Joseph's eyes shut during surgery left Joseph looking like he has two black eyes.  It looked like we were abusing him. :(

08/02 - Today I have been trying to update my blog.  I also found out a very nice friend of my husband's has agreed to take my children should John and I ever die at the same time.  This is a major accomplishment.  John and I had been debating about this for a long time and I did not know of anyone.  So Trisha, this post is partially for you so you can see the life I live.  It really is a bit more complicated but the love I get back from my children make all the craziness worth wild.  Thank you for agreeing to take the children.  It does take a burden off of mind and the same with John.  

My new class for school has started and I need to work on that.  I am still working on researching what might be wrong with Joseph.  I think I may have an answer.  If so it would be rare metabolic disease.  This just emphasizes to me even more why going to the Hypotonia Center is important.  I have to figure out how to raise $1500 for us to go in the next three months.  I am open to suggestions.  : )    I also got to pick up Joseph's new glasses today.  He looks great in them and I think he even likes them.  It will take a bit for him to adjust.