Sunday, January 19, 2014

Rough patch again

Andy is having a rough patch again, so it is hard for the whole family. He wakes up absolutely pissed off. He is screaming and scratching and whaling and moaning. He won't eat a whole lot. Every time it is meal time, he protests like crazy. I've spoken to his doctor about it. I guess we also need to revisit the dentist. He is out of control.

My daughter says he is ruining her life. She hates to hear him cry, we all do. It causes so much tension and absolute hopeless feelings about everything. The tension creeps up between my husband and I. His constant crying is so annoying, we can hardly stand it. I put him back into his bed every time, telling him he needs to calm down.

A lot of times, I will bite the bullet, and recognize he needs to get out of the house. Usually, I just put him in the van with a dvd, and we drive around. Today, I couldn't even do that, because the garage door seems to be frozen shut. So, I gave him some Tylenol, turned off the lights in his room, and told him you are just going to have to rest and wake up in a better mood.  After two attempts at feeding him breakfast and him screaming and arching and scratching, he just had to go back to bed.

Then my daughter comes home from a sleepover and hears him crying and immediately starts up. "You're ruining my life, I don't want to live here anymore. It's no fun here." So, I put her in a bath, and sent her back to bed as well.  I want to tear out of here, but the garage is frozen. I could take my husbands huge truck, but its a pain in the butt. On second thought, maybe I'll just go back to bed too.

Monday, January 13, 2014

Jay Z concert review 2014

My husband and I got to see Jay Z in Detroit at the Palace of Auburn Hills. It was an excellent show. I was raised in Detroit, and attended Detroit Public Schools until the age of 14, so I enjoy a lot of rap and hip hop. I am sharing some info about the Jay Z concert because I was looking online to find this info, because we were running late and did not get to the show until 8:20. We figured things would run late, but you can't help but worry you might miss something.

Some might be wondering what time does Jay Z come onstage? Who is the opening act for Jay Z? The tickets say the show starts at 8:00, but Jay Z didn't come onstage until 9:45. There was not an opening act, but a DJ played from 8:00-9:45. Jay Z was scheduled to come onstage at 9:00, but it was actually 9:45 when he came out. Some cities did have opening acts, but most just had a DJ playing until Jay Z appeared.

What songs were played? All the ones you'd want to hear, there were no disappointments. Jay Z's set list included: Crown, Holy Grail, 99 problems, Big Pimpin', Niggas in Paris, Dirt off your shoulder. A special treat was when he performed "No Church in the wild", and "F with me you know I got it". This isn't his song, but I was so happy to hear it! And he performed the whole song, and did Kanye's parts too for "No Church in the wild" and "Niggas in Paris". After he performed for over an hour, Timbaland came out and performed some snippets of his songs. He beat boxed a bit and played a piano and performed a new song. He was very entertaining too. After Jay Z had that break, he came out to do an Encore consisting of several songs. The Jay Z encore was:  Encore (his version not the Linkin Park one), Empire State of Mind, (H to the Izzo) Izzo H.O.V.A, Hard Knock Life, and my favorite of the night, Young Forever.

His crowd was more of a mixed bag. He had a wide range of ages, from teenagers and a few young kids, to some people in their sixties, maybe even seventies. It was an overall older crowd, more middle-aged people. I noticed this because some artists draw only a young crowd, if they are newer, while others draw all ages. Jay Z definitely appealed to everyone, and this could be seen in the audience.

Jay Z called out several people in the audience that were wearing his merchandise, and they were put on camera. Also, if they were wearing crazy sparkly dresses and what not. He told security to "stand down" several times when they tried to escort people out of the aisles that he was talking to and had on camera. It seemed like they didn't appreciate his barking at them, as he noted he just wanted everyone to have a good time.

The performance was amazing and was not disappointing in the least. He is a very strong performer, and rapped out all the lyrics, there was no lip syncing. We were curious to see if any other local performers would stop by the show, but they did not. It was totally fine though, the show was awesome as it was.

Finally, Jay Z told the whole crowd he appreciated everything everyone had to do to get there that night. He said " I know a lot of you had to get a babysitter, put gas in your car to get here, buy the tickets... and I appreciate that". I'm sure it made everyone feel good, and was nice to hear a thank you from him, that he really appreciated all his fans. I definitely have a newfound respect for him after hearing those words.

Wednesday, January 8, 2014

Revisiting a geneticist, Helpful Facebook groups

I belong to several Facebook groups, and some Yahoo email subscription groups. They are groups created by parents of children with special needs. You do not have to be "friends" with people in the group. You just have to request to join the group and wait to be added. They are very helpful, especially when parents have questions about behaviors their children are exhibiting.

Upon reading some comments from parents about their children and Microcephaly, I came across a girl with a genetic mutation that sounds like what Andy has. It is called a FOXG1 mutation. The syndrome is similar to Rett's syndrome, but is unique and has become it's own syndrome. The children who have this syndrome have never had a period of normal development. Symptoms that Andy exhibits are:

Agenesis of Corpus Callosum, or Hypoplastic/thin CC
Inconsolable crying
Severe developmental delays
Hand washing motions
Vision impairment
Facial abnormalities-according to doctors
Non verbal
Non walking until between age 8 and 9

I have contacted his geneticist, which he hasn't seen for two years. I've been told it is good to keep a once a year relationship with geneticists, in case any new testing comes about. Andy has had several genetic tests in the past, but none have totally seemed to fit him. He was tested for:

Angelman's syndrome
Factor X
CGH micro array to test for duplications and multiplications of genes

If I can convince the genetic counselor, Andy will get tested for mutations in the FOXq region, which would include any of the FOX syndromes. The FOXG1 syndrome causes a truncation of a gene that makes important proteins for the brain. When the brain is deprived of these essential proteins, severe delays in cognitive and physical development occur.

The blog that lead me to this syndrome can be found here: