Thursday, November 3, 2011

NOT having a good morning....

There are some days I look at my life and wonder what in the hell is going on! This morning is a case-in-point. I went to bed late last night because I was working on school work and I drank some caffeine late so I just was not tired. It is not uncommon for me to have an insomniac moment. In any case I went to bed late.

The door on the children's room has a lock. John puts the children to bed at night. He changes their diapers and brushes their teeth. Then he puts them in bed, sings twinkle, twinkle little star to them twice and closes the door AND THEN LOCKS IT (just a vertically hung chain lock). For some reason last night the door was not locked. So this morning I was sleeping. Normally if I sleep late the children will wake up and play in their room for a bit. While they are playing they will make noise (laughing, crying or just playing with things loudly) and I wake up. This morning there was nothing. so I get up thinking they are being very quiet but when I go and look at their bedroom door it is open. I immediately start to panic!

I call out Margaret and James's names but I hear nothing. I search the upstairs and I did not see them. I stood at the top of the stairwell and see the downstairs door unlocked. John went out the front door this morning trying to be quiet (not running the garage door) since he had to leave early today for training. I felt another surge of panic when I saw the front door unlocked but from upstairs it appeared closed. I get Joseph up and change his diaper and then I headed downstairs.

Downstairs I went straight to the kitchen. It is not uncommon for them to make a beeline to the back door and head out into the backyard. As I walk into the kitchen I see the back door open. I put Joseph down and head outside to look for them. I called out their names since I did not immediately see them. There was no answer and it was quiet. That ball of dread came back worse then ever. I started to really panic then! I re-searched the downstairs again and then notice the front door was open. It was pulled to but it was OPEN! Then I hit FULL panic mode! I called John first and he did not pick up but I was crying and screaming hysterically at him on the phone as I left a voicemail. I heard the message later. I am surprised he could get anything out of it since I was screaming hysterically. He said he could understand that the front door was open, the children were missing and he thought I said "she is dead."

In a panic he leaves his training session and heads home. I get Joseph and place him in John's car, with no car seat, because John took my van. I buckled him into the front seat as best I could and them I took off to circle our neighborhood. As I am driving I call 911. I told the dispatcher that I was missing my children and she said it is ok because they had them. I started crying! Bawling really. I was relieved that Margaret and James were fine. Margaret had me especially worried since she will wonder out into the roadway because she has NO awareness of danger. So I go into hysterics again but this time it is from relief. Knowing that my children were ok.

Four police cars pull up to my house as I am pulling back into my driveway. I get Joseph out as one of the cops approached me. They, overall, were very nice. I them the children are autistic and two of the safety measures we have to prevent them from leaving the house were not used this morning. One of the police officers went asked if he could look over the house and I said yes while I spoke to the other 2 female police officers. They were nice. I got a good idea too of putting a label with the word autistic and my phone number on all their shirts. This is a great idea! It would help the police find me faster. They said they had been circling the neighborhood looking for a house with the door open.

After the police left John showed up. He was in hysterics because he thought Margaret had been killed. He was feeling guilty since he had left their bedroom unlocked. I told him it was okay because the children were fine. He asked for me not to be mad at him because it was all his fault. I told him it was my fault too since I did not notice that their bedroom door was not locked. I said I was happy to know the children were ok and back home.

What a scary story! This never should have happened and I know John and I will be WAY more vigilant in the future. What a way to wake up in the morning!

Tuesday, November 1, 2011

Happy Halloween!

 



Halloween was fun! Poor John started to get sick earlier in the day but he held out as we took a walk around the neighborhood trick-or-treating. James was Sheriff Woody from Toy Story. He LOVES Toy Story so it was a perfect costume for him. James was really seeming to get into the idea and by the end was saying trick-or-treat and opening his bag for candy. Margaret was the tooth fairy. I have no idea why the tooth fairy specifically except that is what James called her when he saw her in her costume so it stuck....lol. Margaret was her typical self that night showing little safety awareness. She was running around without paying attention. John or I had to hold her bag. She ran around on the saidewalk (for the most part) singing the Wonderpets theme song...lol. The only really bad thing she did was reach out and pet a catus. This is the fourth one she has touched. You would think she would learn. I had to spend 45 minutes pulling needes out of her hand this morning. Joseph was a little ninja and I pushed him around in an umbrella stroller. He was having fun and I could hear him trying to say Halloween.
Overall we had a pretty good time. :D

First thing the kids did was look over the candy. I know this will sound weird but I was rather happy they wanted to eat the candy. As a rue the children will not eat candy and they have not really been into cake. I think this year for their birthday will be the first time they will eat their birthday cake! Anyways, they ate some of the chocolate candy. The chocolate candy was the only kind they would eat!

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Wednesday, October 19, 2011

Dying from the flu (?)

Sorry I have not posted on here in awhile. Last week was the big children's consignment sale. The week before that I had school and I was working like a mad woman trying to get my clothing ready for consignment. In the process of that my carpal tunnel has acted up. I mean like the worst it has EVER been! I think it is due to fastening safety pins to everything. Then the week of the consignment sale I was finishing getting my things together. Trying to take care of the stuff for the school district so the children can begin services and working on school stuff.

Finally my carpel tunnel has subsided enough I can at least type again. I bought a lot of clothes for Margaret at the sale, I got only a few things for James and Joseph (that was all they needed, shoes for everyone, books, toys and Halloween costumes. The costumes are super cute! It had been a busy time. I wrapped up this past weekend shopping the sale and then promptly came down with what seems like the flu. Even right now I could take a nap if James would go to sleep. I am exhausted! I am sure I caught the flu from someone at the consignment sale and now I am doing all I can to limit my contact with the children so they do not get it.

I am tired and not even sure if this post is making sense...lol. I will be back later when I am feeling better. Stay tuned!!! :D

PS. Please don't forget to click on the ads on the left side of the page if you find anything interesting! It helps to raise money for Joseph's fundraiser.

Tuesday, October 11, 2011

It Looks Like a Clothes Bomb Went Off In My House....

It is nice to have a moment to breathe. Sunday night at 10pm my time was the last time I could enter any clothes into the consignment sale. I swear my house has looked like a clothes bomb went off in my living room. Clothes were EVERYWHERE! I got 130 items entered into the sell. Today I went to turn the items in so they could be placed on the sales floor. OMG, it was a mad house there!!! I was having to struggle with two large and one really large box of clothes along with Joseph in a stroller, Margaret without her backpack leash and James. This is after we went to therapy today.

So lets go in order. We went to therapy. We got to therapy where at 10ish Margaret and Joseph went back to get OT for Margaret and PT for Joseph. This left me James in the waiting room for an hour. Luckily he played on my phone and entertained himself with it even though my "nice" phone broke. That is a story I will get to in a minute. Then at 11am I got Margaret and James went back for ST and Joseph got OT. So Margaret and I went shopping at Trader Joe's since there is all most no food in the house. We shopped and got back to the therapy center where the therapist brought out James and Joseph.

We left the therapy center and came home. I fixed the children lunch and then put Margaret and Joseph down for bed. After therapy they always need a nap. So they were in their room from 1:30pm to 3:00pm while I worked on my school work I could not complete Sunday because the school's computers were down. James watched Toy Story. He has really come to like Toy Story 1 and 3 a LOT! He will watch the movies 2 or 3 times in a row. Anyways I got my work done. Got the children up and fed them again. Got them ready and we left the house. It took us about 30 minutes to get to the consignment sale location. There were a TON of cars and I could not find a space to park my car. You have to keep in mind I drive a Ford E-350 15 passenger van. It is huge! So I have to park FAR away from the door but I did swing the van back around and dropped off my three large boxes of clothes near the front door. After getting the children out and Joseph loaded into the stroller we went to the front door. I lucked out and got a clothing rack. I loaded the clothes into the clothing rack so I could leave the boxes behind. While I was doing that a TON of people walked by and cars were going slowly by. I was SO nervous Margaret would walk out in from of a car. James was entertaining himself by pushing Joseph around. Overall he was doing a good job but I was worried he would tip him over. I managed to get all the clothes loaded onto the rack and get the clothes and the children inside. After getting in I soon "lost" James. I knew he was in the store somewhere but I was not sure where.

Margaret was being good because she was staying fairly close. The women went through all my clothes. It took her about 15 minutes. She pulled out about 8 outfits. In the end she rejected four. Then I had to go and find James. I see him rounding the far corner where the toy are displayed and he is riding a pink bike...lol. I told him to get off and to put it back. He started to cry. Then I grabbed his hand, Margaret's hand and was trying to steer Joseph's stroller to go back out to the car. James is bawling all the way saying he wants a bike. Margaret is crying too and Joseph is crying because the other two were crying. It was sad really but in a perverse way funny. All these other people staring at me. Not one person offering to help going in or coming out of the consignment sale.

I got the children loaded into the car and I got to hear James cry for 30 minutes as I drove home. I got here in time to meet a woman who wanted to by the white toddler bed I had advertise on Craig's List for $20. At this point money is money because we have very little of it especially if I am going to the consignment sale to buy clothes and toys for the children.

So tomorrow is therapy day again and the consignment sale will begin at 2pm. I will be there with the children. I tried to find someone to watch them for me but that did not happen. :( Hopefully James will be able to find his bike tomorrow. I hope so!

One last thing I want to throw in about Margaret because it was rather funny. Sunday night Margaret was screaming upstairs in her room about an hour and a half after bed time. The sound of the scream I had a good idea that she had vomited. I get upstairs to check on her and I was right. She was paralyzed from her own vomit. It was ALL over her and her bed. John comes in to help. Margaret as you know is Autistic and she scrips a lot. Right now she is no a Wonder Pets kick and she likes to script them. So when John went and brought her out to the changing table Margaret started to whine and then sing, "stuck on the barf, stuck on the barf, this is serious, we've got to help her, Wonder Pets, Wonder Pets, we're on our way to help the baby Margaret and save the day," John and I cracked up....LOL. So John takes Margaret to the bathroom and gives her a bath while I change the bedding. I get done as he is finishing her bath. So he starts to dry her off and she sings, "Our work here is done. Time for celery." then as John finishes putting on her clothes and she walks into her bedroom she says, "to the flyboat, to the flyboat, Wonder Pets, Wonder Pets, were on our way, to help a friend and save the day, we're not too big, we're not too tough, but when we work togethr we've got the right stuff, go Wonder Pets, YEA!!!" LOL She is one funny, quirky little girl!

Sunday, October 9, 2011

And people wonder why I cannot get anything done...

I am not sure if any of you realize, in a moment of infinite wisdom, I decided to attend graduate school. This decision came out of the need for money along with the desire to complete the master's degree I started in 2003 but did not finish. So Monday I started by reading the class material. My new class started October 3rd, Landscape Ecology and Planning, sounds like fun huh?

On Monday I also made several phone calls trying to follow up with things. Heck, I just remembered I still need to work on getting Joseph a wheelchair and fight Medicaid trying to convince them I need help with the children since Margaret and Joseph seem to have NO safety awareness skills. I am also been pulling out clothes to try and consign them.

There is a major consignment sale in Las Vegas called As They Grow (http://astheygrowlv.com/) and for the last two sales I have spent a lot of money but was able to buy entire winter wardrobes of clothes for the three children and toys. For the past week my house has looked like a clothes bomb went off in my kitchen and living room. The only good news from all that is I have realized that Joseph has SOOOO many clothes he does not need a thing but shoes. James has a lot of clothes too. Just a few size 4T shirts and pants. He fits snug in 3T now and I would hate for him to grow on me over the winter and then I would not be able to find him warm clothes. Margaret is really the only one in DIRE need of clothes. When the weather turned cool here I had to dress her in boy's clothes because she did not have any warm clothes to wear.

Then I have been dealing with the school district. I COMPLETELY spaced out on the fact I would have to have the shot records for the children to enroll into school even though they are in a homebound education program.

I have been working SO hard on the consignment sale (did my volunteer shift today from 9am to 1pm) to tag clothes that my carpel tunnel is acting up and KILLING me. Got to get home and work on it more though. John was suppose to tag stuff for me today and I was suppose to get the day out but that is not how things are going to work out.

Oh, and my cool new phone died. My LG phone that was my birthday present died. The touch screen is acting up and of course it is 10 days after the warranty date so the $200 John was kind enough to spend getting me my cool birthday present is no good. :( I am SO sad because I LOVED the phone.

I also cannot get into my online school right now to do my forum posts. I had set the time aside but the school's computer system is acting up and I cannot get in. John, I just noticed messaged me on FB saying he has a massive headache and is throwing up. Now I get to go home, deal with John, take care of the children, finish getting my consignment stuff on hangers and input into the computer tonight before 10pm when the computer system closes and keep trying my school to see if I can get in and post my four forum post responses. Wait, I forgot about cleaning the house especially the kitchen! I doubt the cleaning fairy has come over since John is sick. What is worse is I know I am forgetting at least two other things. Sigh! I am just tired thinking about it.

One final thing while I am remembering...please click on the ad box to the left (AdSense) if you see anything of interest. This is how I am trying to raise more money for Joseph's Cause. If you can please donate to his cause and feel free to share his story. There is more to tell on that one but in another post. :)

Tuesday, October 4, 2011

Waiting, Waiting, Waiting...

All the medical work I have been trying to accomplish for Joseph is not at a stand still. I am not sure what the geneticist is doing. She has not gotten back with me. I think we are waiting to get approval to do a fresh muscle biopsy. Everything else medical is in limbo.

I am now working on getting the short records for the children and get medical exemptions for them. I would imagine this will take about a week to accomplish. Then the school district wants to send over the the children's teacher to see the home environment. So I will have to clean things up here but of course I am in the middle of making a mess because I am pulling all the tubs from the garage. Slowly I have been going through them and trying to be ruthless about getting rid of clothes. My hope is to consign the clothes in a sale in a couple of weeks. It would be great to get rid of the extra stuff that I am not using.

Monday, October 3, 2011

Going gluten free?

While I was pregnant with the babies I lost about 40 pounds. Over the last three and a half years I have gained all the weight back. I am now tying to go on a diet. I have not decided on a specific diet yet but I do want to try and get rid of the gluten in my diet. Anyone have any recipe ideas for GF casserole ideas?

Tuesday, September 27, 2011

To Facebook or not to Facebook....

With all the changes made to Facebook and the news that FB can track you now even when you are not signed on has caused me to sign up for Google Plus. I think I will use both for a bit and then decide which account I will keep.

https://plus.google.com/i/XRFH73B7u5w:OPJT0k5ihyA

Oh, and don't forget to click on the ad box to the left if you find something interesting. :)

Monday, September 26, 2011

Barf, Barf and more Barf...

Margaret has always been my little vomiter. Joseph was too but he had a fundoplication and stopped his vomiting. Margaret on the other hand gets something going on with her and the next thing I know she is vomiting all the time. Case in point, today.

Margaret was doing fine today until this evening and she vomited when I fed her some pizza. Then tonight she has been up for awhile talking in her room. Just a bit ago she was screaming her head off so John checked on her. She is covered in barf and so was her bed. She is in the bath now. The vomiting jags (refluxing) can go on for weeks before it stops. I am hoping for a short stint this time. Fingers crossed!

Sunday, September 25, 2011

Ultrasound photo of all the babies at 13 weeks

I am trying to link my Photobucket account with my blog but so far no success. I think I did get the picture of the ultrasound up. This is the first ultrasound and only one I think of all four babies at once. This was done at 13 weeks. Then after that they were too big to get all of then in at once...lol. I will post more up as I can.

Oh, and I noticed I have been approved for ads. They are located on the left side of the blog. Please take time to click on the ads and read them. This will help me raise money for Joseph. Thanks!

Photobucket

Me in the hospital at 26 weeks. I think this was taken about 4 days before they were born...

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What a day! (in that good kind of way)

OMG, what a day!!! The day started off in a panic. John and I were not thinking. I had taken my van in for mechanical work. This left us with only one car. When John got up int he morning he knew I had the IEP meeting today for the children but it did not register with him. So he took the car this morning and I had no ride. Lucky for me John carpools with a co-worker and she came up with an idea. She was able to get her oldest daughter to come and pick me up and drop me off at John's car.

Another friend, D., was kind enough to come over and watch the children. It would have been really difficult for me to follow what was happening if I had the children with me during the meeting.

I arrive at ChildFind at see Cheryl, the advocate, waiting. We we soon greeting by one of the IEP team members and we went to a large room. Then the rest of the IEP team arrived. I was nervous but I knew in having Cheryl there I would at least do OK. John, since he is a school teacher with district, wanted nothing to do with the IEP meeting. There have been teachers written up for being a strong advocate for for their child. So I understand why he does not want to be involved.

We started with James' IEP. We started by going over the results from the testing. I had picked this information in February but we decided to go over the information again since it had been seven months ago. We spent about 40 minutes going over all the previous information and making changes where James has made improvements. Then we spent the next 70 minutes going over all the goals and benchmarks for James. Where the advocate really helped is in getting James more therapy time. The school district offered three hours of therapy time a week. Then they said they would have offered James the autism program where it is a full-day program that is 5 days a week. The advocate then said that should equate to at least 5 hours of direct therapy time a week. There was a small argument but the District agreed and basically doubled his therapy time per week. Yea!!!

Then we had a very short break and started on Joseph's IEP. I pulled out the medical letter from Joseph's pediatrician, pulmonologist and ophthalmologist. The letter from the eye doctor told of Joseph's eye prescription. It was in cones and not a typical 20/20 sort of prescription. The school nurse and I argued about the prescription. She said they could not give Joseph vision services without knowing a 20/20 prescription for him. I told her several times the ophthalmologist would NOT give him a 20/20 prescription and SHE (school nurse) would have to get it out of her. That is was not my responsibility. I did what I had to do and that is to get a current prescription for him. Then the letter from the pulmonologist said Joseph was not to be in a school setting for the risk of respiratory disease. The last letter, from the pediatrician, threw the entire meeting into an uproar!

In that letter it was said that Joseph suffered from autism. The school system did not assess for autism nor did they think they saw signs of autism. At that point the team was at a lost. The advocate stepped in and said now that I had presented this information they could not ignore it. She suggested the IEP team follow through with Joseph's IEP as it is now (Orthopedic with a secondary of Developmentally Delayed) than to risk owing Joseph compensatory services. So the IEP team decided to call in the supervisor. She came in and explained that the IEP would be be configured as it is and then the school district would have to come and assess Joseph for autism. She made sure to point out that I initially was not complaining of autism for him AND the diagnosis from the doctor is just a medical diagnosis not NOT an educational diagnosis. So all was agreed to and we formulated the IEP for Joseph. Again, I am glad the advocate was there because she really helped in formulating the benchmarks for both the children and I think they are better benchmarks because of her help.

I am not sure when services for the children will start but I will be contacted and a schedule set up. I am a bit surprised by Joseph's qualifying criteria for an IEP only entitles him to two hours of therapy a week. The only way that could be changed if he is not meeting his IEP goals. It seems to me though developmentally delayed children should get as much or more therapy time per week as a child with autism. VERY interesting!!! The advocate also helped me to convince the IEP team to use PECS with Joseph. I am hoping PECS will help him to understand that words can mean objects and words can help you get the things you want.

Overall it was a SUPER busy but good day. The advocate was even kind enough to be there on her birthday! So thank you Cheryl!!!

More good news for the day was when I came home I had recieved a notification that some one had donated to Joseph's fundraiser. It seriously made me cry! To Feel as though I did well for with the IEP and then to find someone with a VERY kind heart donated to help me send Joseph to the Hypotonia Center at Johns Hopkins just made my day!

Then today John went and picked up my car. The auto guys did not repair my side door but I am assuming the other work was done.

Sigh, I have been trying to write this post for three days. I keep getting interrupted. I was hoping yesterday (Saturday) to go and see my friend D. because she is about to move to KY. I am sad she is leaving. :( Anyways John needed to run several errands and it just got too late. Then today he has school work to do and so do I. Heck, I am not even sure D. is available today to do anything. I will have to see.

I also got a chance to drive my car yesterday to the store. OMG, it runs SOOOO much better is WAY quieter! The mechanics I took my car to said the front tires of my car were bad especially the driver's side tire. While John was out yesterday he took the car over to a tire place for me. They looked at the tires and said it was the back tires. They were the ones that were bad and showed him. So $350 later my car was out of the tire shop with new rear tires and it rides SO nice now. I am disappointed in the general mechanic shop I took my car to because of the door not being repaired and the incorrect information they gave me on my tires. These people even had a good review on Yelp!. John is going to drop my car off at the mechanic again and I will have to call them on Monday and ask why the door was not repaired.

Saturday even I got more good news for Joseph's fundraiser. Someone was kind enough to donate $100. This brings the total up to $640! We are at 21.33% of our goal! Yea! I was hoping I would be able to cancel the fundraiser because Joseph's genetic tests would show something. This was not the case though and that brings me to my final bit of news.

John took James and they went to Quest to see if Joseph's test results were ready. They were!!! He got the results and then called me. He said the MicroArray analysis of Joseph's DNA showed NOTHING! He has completely normal DNA. The neurological problems Joseph has should be cause by one by one of the following reasons: brain, metabolic and/or genetic. I think we have pretty conclusively ruled out genetic causes. We have mostly ruled out the brain with the normal MRI and at the very least there are no obvious (subtle or otherwise) reasons why Joseph is having nuerologic, retardation and balance issues.

Then we come to the metabolic problems. These are typically caused by really small genetic errors and you have to know what you are looking for so you can do the genetic testing. Some of Jospeh's blood work has shown an increase in very-long-chain and long-chain fatty acids. So maybe his body is having problems with breaking down fatty acids. If so then he may have a mitochondrial disorder. If Joseph has a mitochondrial disorder then it is super important we take him to the hypotonia clinic. So on with the fundraiser!

Still looking for fundraising ideas. Please let me know if you have any!

Thursday, September 22, 2011

One fundraising idea...

I have enabled ads on my blog. In two days I should have ads up. All I need is for the people who are visiting my blog to click on the ads. It may be annoying but it is a way for people to help me generate money for Joseph at no cost to them.

Something to think about at least. Oh, and while you are here, click on an ad...lol.

Bloodwork...the bane of my existance! GAH!!!

Thwarted yet again by Quest. The DNA test for Joseph has a 15 day turn around time. This means 15 days is the LONGEST it should take for me to get the test back. That day was today. When I went to Quest though the test results had not been reported. I will have to try again tomorrow and hope they will be there.

In the meantime I have been trying to get everything ready for the IEP meeting tomorrow. I spent the afternoon running around and looking and trying to get Homebound paperwork completed. I have also been working on finding a wheelchair for Joseph. I can't continue to carry him around everywhere. This is especially true when we get around to starting growth hormone treatment for him. I am also looking at getting him some sort of helmet. In the past three weeks he has fallen several times. In three weeks he has busted his lip 6 times, pushed his front right tooth forward to the point he looks bucktoothed and he chipped the bottom of both teeth. Joseph has been trying to get braver and let go (something PT has been teaching him) but he is having really BAD falls. The PT said if we get him a helmet it will throw off his sense of balance and make make some regression in learning to walk. I told her when it comes to possibly loosing his teeth because of the damage he is doing to them when he falls then he NEEDS the helmet.

I won that argument...lol. Now we just need to see what we can find him what will protect his mouth and be lightweight.

On a sadder note I have been working on raising money to send Joseph to the Hypotonia Center at Johns Hopkins and it seems like my fundraiser has stalled out. I am not sure what to do besides pray that things will work out. I have to find some time to brainstorm some ideas. Any input would be welcome. :D

On, what I think is an even sadder note, I sent my parents Joseph's fundraiser website information two weeks ago. They still have not even LOOKED at the site much less make any effort to help. This is after my mother pays $1200 to get her drug addict sister out of jail and into a rehab program because her sister was looking at the "third-strike" offense and would be jailed for at least 15 years. Keep in mind she is 50 and has a VERY extensive rap sheet. Makes me sad that my mother thought it was more important to help her sister who has thrown her life away on drugs and alcohol than to help Joseph. The poor boy has done nothing wrong and he deserves help.

Friday, August 26, 2011

Strength?

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 done...lol.

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.

http://www.cdc.gov/ncbddd/autism/code.html

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 do....lol. 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 office...lol. We arrived a bit early. The kids were antsy since they wanted to run around.

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

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

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 it....lol. 

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 way...lol.  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 honeymoon...lol. 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.  





 

Wednesday, July 27, 2011

I know people find it hard to believe that James has started to read but I am not kidding.
He is one smart kid. I think he is a kinesthetic learner and that is why he has learned so
by finger signing the words he does not know. Then he has SUCH a great memory he
just remembers the word later when he sees it again. It is amazing!
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Wednesday, July 20, 2011

Photos from the MRI

                                                      Look at that perfect little Joseph brain!

                                                                       

                         This scan is without contrast.  You can see the large right lateral ventricle.



 This scan is with contrast. Note the right side is all highlighted.  There should be a larger black area for the ventricle.  You can also make out the cyst on the right front of her head.

              This scan shows Margaret's inflamed sinuses.  I will have to take her to an allergist.
 This scan is with contrast and the highlighted area shows the large cyst in Margaret's right frontal lobe area.

Having to Eat My Words...

I was not sure where to start with posting in the last week.  I got some news that was SO shocking I thought for sure it was wrong but as I found out last night it is not.  Now I am sure you are confused but let me go back and recount all that has happened.

On 06/30/11 the children went to Nevada Imaging Centers and had an MRI done with and without contrast.  It would be two days before the results were ready and sent to the doctor.  Since the neuro doctor ordered the tests and I could not get an appointment with him any sooner than in another 6 weeks that was just too long for me to wait.  So I asked the results of the MRI be set to the genetics doctor where I had an appointment to meet her on July 7.  This way I could get some answers in one week versus six weeks.  I HATE waiting!  At this point I am out of patience with the doctors and I am moving to take control of Joseph's medical issues.

So on July 7 I traveled to Utah to see the geneticist.  In Nevada there is only ONE, yes you read right, one geneticist in the entire state.  To see this person I was told there was at least a year wait.  What I was hearing from other people, mostly professionals (other doctor, OT, PT, and so on), was the wait was really more like 2 to 5 years.  It all depended on the geneticist and how interested they were in your case.  This is yet again not good enough.  I do not want to start looking for answers with genetics when they are 5.  By then the optimal window for getting them therapy will have come and gone.   When I found out the private insurance my husband has through work covered a geneticist in Utah because they were aware of the overly long wait I went for it.  The trip to Utah was uneventful.  I had to rent a car to go because my van would have never made it due to the heat.


I got there a little late because Enterprise did not have my car ready when I got there.  It took 45 minutes to get my car and get out of there.  Once we arrived and got to see the doctor I told her the medical history of Margaret and Joseph.  As she was looking at the children the geneticist was WAY more interested in Margaret than Joseph.  She just dismissed my requests to test Joseph first because of his neurological issues.  The geneticist was determined to check Margaret for Williams Syndrome.  The doctor said any genetic illness affecting the children would be autosomal recessive and what ever Margaret had would probably be affecting Joseph too. 

At this point I thought the doctor was throwing around the term autosomal recessive to sound important and confuse me.  I am sorry to report what happened was I was getting annoyed and angry.  I had to bite my tongue because if I offended the geneticist then my only other choice would be to wait years to see the one and only geneticist in Nevada.  So let me explain why I was mad.  If you remember genetics from basic biology class autosomal recessive is Rr.  This would mean I would be Rr and so would John (Rr).  When you cross the genetics you get RR, Rr, Rr, and rr.  This means there is a 25% chance of not having the disease or carrying the recessive trait for the disease.  There is a 50% chance of not having the disease but carrying the recessive for the disease.  The last is a 25% of getting the disease.  So there is only a 25% chance of any child getting the disease.  If Margaret has it there is little chance Joseph would.  Another thing I did try to point out is that Margaret and Joseph are fraternal quads and therefore have a different genetic make-up and the symptoms of the problems they have are VERY different.

In any case the doctor ignored me.  This is NOT a good way to build a relationship with the family you are treating.  I got an order to get a micro-array test DNA test for Margaret and I have to wait to get the results back before I can go back and see the doctor again.  When we go back I plan to confront the doctor about the idea of Joseph having to have the same disease as Margaret.  I want Joseph tested for a few syndromes that specifically fit him with his hypotonia issues. 

To end our visit I ask about the MRI test results and the doctor read them quickly out to me.  The first was Joseph and I was told his MRI scan was completely normal. Then the doctor said the MRI scan for Margaret showed diffuse white matter injury and periventricular leukomalacia (PVL) consistent with a diagnosis of hypoxic ischemic injury.  For those of you who do not care to google all this to figure out what it means is that Margaret showed signs of severe brain damage including having holes (cysts where the brain matter had died) in her brain.  I was so floored by the news I did not know what to say.

When I got home and told my husband he said it would like the imaging center confused the scans of the children.  This made sense to me.  I had suspected Joseph had brain damage because of his neurological problems.  I made the radical move of calling the imaging center and told them I think they might have made a mistake.  I was put though to the radiologist who read the film on the children, Dr. Orrison.  I told him that I thought he read the film correctly but they were reversed.  Joseph had an MRI when he was 14 months old in Alabama and we were told he showed signs of global prankamal volume loss with mild swelling in the lateral and third ventricles.  This is all most word for word that was written in Margaret's MRI.  Dr. Orrison understood my concern.  He asked if we could bring one of the children in for a quick, 10 second, scan so he could compare them.  I told him Joseph would be the more cooperative so we could try him.  John took Joseph back for the scan and the film was compared right there.  Joseph shows NO signs of brain injury!  We were shocked.  A few days later Dr. Orrison was kind enough to invite me to his office so I could see the film of both children.  Being their mother and I know the head shape of the children as soon as I saw the film I knew Dr. Orrison was right.

I don't know what to make of Joseph's neurological problems except that is has to be either a biochemical issue in his brain, an inborn error in metabolism or genetics. 

Sunday, July 3, 2011

Always knew Joseph had a problem...

After asking the nurse at the NICU was Joseph taking his four ounces of formula without a problem and she said yes I had NO idea how complicated my life would become when Joseph came home. The hospital released Joseph, just two days off of oxygen and weighing only 4.4 pounds, home. The night he came home I fed him his four ounces and laid him on the bed. I stepped away for a few minutes to rinse out his bottle and when I came back he was blue and had quit breathing. I tried to revive him but I could not so after a moment of panic John told me to start CPR while he called 911. That was the most terrifying time in my life. That I was holding my child in my hands and he was going to die.

I was able to get him to start breathing again right before the ambulance arrived. I was able to do this by doing a combination of CPR and what you do for someone who is choking. I had NO idea why he had quit breathing! It was a long ordeal but in the end it was determined that Joseph was suffering from an extreme case of GERD. He was refluxing high enough to interfere with his breathing but not high enough to vomit.

During this time we also took Joseph to a pediatric neurologist. I was not ever fond of her because she just did not see Joseph the way I did. She kept telling me that Joseph will be fine and that he was making great improvements but I felt different. I knew Joseph was different and having severe problems but the medical people just did not seem to agree with me. I did not have time to fight this because I was trying to take care of three babies that had to be fed every three hours around the clock and then had to sit up 30 minutes afterwards to help prevent reflux.

The neurologist told us that Joseph's MRI (done when he was 14 months old) was fine. She said Joseph had microcephaly (small head) and had a small brain but it was ok because it was in proportion to his head. Then she said all of the parts of his brain where there so he was in good shape. It was not until a few weeks ago that I got the actual MRI report. So my husband and I have been thinking Joseph's brain was normal and then I read the report. The report said, "there was mild swelling in the subarachnoid space along with swelling in the lateral and fourth ventricles. This is consistent with global parenchymal volume loss. " Now if you are like me I had NO idea what this meant so I had to google the information.

What I found is that this is synonymous with brain or cerebral atrophy. There are lots of things that can cause this. Too numerous to mention. Brain atrophy though is something seen in people with multiple sclerosis, Alzheimer, and Parkinson Disease. It is also seen in people with cerebral palsy (CP). Now this is important to mention because the reason I pressed the neurologist to do the MRI when he was 14 months old was to look for something that would cause CP. I told her that when Joseph was first born he had his fists clenched shut for about 6 months or so and I thought I say signs of his eyes doing something called "sundowning". This is where the eyes want to look forward but then slowly rotate downwards towards the feet. Sundowning is a sign of neurological damage. Later Joseph did finally open his hands but then he twiddled his hands in front of his face and that was all he did for another 6 months. Joseph seemed to have no awareness of brother or sister much less my husband or myself.

The neurologist just kept putting me off and would not diagnose Joseph with CP. She insisted that Joseph would get better. She said he was behind because he is a preemie and then had so many set backs and surgeries. Again, on instinct, I knew she was lying. She gave Joseph the diagnosis of developmentally delay with hypotonia.

It has been 2 years basically since I have been trying to get Joseph the diagnosis of CP. Being diagnosed with developmental delay does little in getting Joseph the services, therapy, or equipment he needs. On July 1 I took Joseph to a pediatrician and showed him the MRI report, a letter Joseph's physical therapist wrote describing his motor issues, and had an autism specialists also go with me so she would tell the doctor Josephs other medical issues. This doctor actually listened to everything I had to say. We talked about Joseph and his development for about an hour. At the end the doctor said he would be comfortable in diagnosing Joseph with CP. I was floored! Finally, after 2 years and 15 doctors, a doctor listened and helped! The pediatrician was interested in Joseph, the whole person, and not just the "sick" parts of Joseph. Now my little boy has been medically diagnosed with CP, hypotonia, expressive apaxia, gross/fine motor delay, subglottal stenosis (narrowing), dysphagia, GERD, blindness and incontinence. The diagnosis of incontinence was given because Joseph is NO WHERE close to being potty trained and with the cerebral atrophy there is a high chance he may always be incontinent.

This is a HUGE victory for Joseph. Maybe now I can get help for him! : )