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.


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!


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


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.