The week in review and a brief brain dump.
Emily had her birthday on the 27th. The grandparents came up and spent the weekend with us. She went shopping and got lots of really nice things. Shoes her ear pierced and lots of other pretty cool things. She had fun going shopping and using her own money to buy the things she wanted. She is enjoying school. She has her first performance coming up next week for choir. It will be really cool to see her sing. She really enjoys singing. She has been doing violin for about 6 weeks and she is doing pretty well. She is doing really well with the responsibility chart doing her chores and being respectable.
Jace has had a doctor appointment and it went ok. They do something in the sessions with poker chips. He recieved 4 out of 5. They say that he is pretty stubborn. The doc said that we should just let him eat whatever he wants. We don't feel that is the best way to encourage him to eat. We are discussing ways to modify what they want us to do. Hopefully we can get him to eat more. Atleast try something before saying no. He is doing well in school. The school has him doing speech therapy and it seems to be going well. Homework is going well for him also. He has his days some are good and some are bad. There are also days he is not himself. We are watching him closely and making sure if there are any concerns to let the doctor know.
Ben has had two doc appointments since the last time I blogged. His feeding therapy team and his behavior doctor. His feeding team says he is needing more food and water. They also say that the school needs to do a new plan and give him more support and time to get things done. They are currently putting a plan in place for the school. He also has his good and bad days. His behavior doctor thinks he may have ADHD also.
Ari is doing well in school. She is still very loud and OCD about so much things. So many say there is nothing wrong with her however her teacher has said she needs extra help. So we will see what happends.
Eli well so much going on. He got a new helmet and new glasses. He also is getting new hearing aids to see if they make a difference. The doctors think his mito is getting worse and that his apnea is getting worse. He is also having so much more secretion. He is maxed out on his meds who knows whats next.
Me well so much is stressful and fustrating. I see how life has been getting harder for heather. It's really hard for me. I as a man have no idea how to fix or make it easier for her. Everyday i see the weight getting more and more. Me being a man trying to fix things is just really rough. I know that sometimes all i need to do is just listen but it isn't always easy. My OCD has gotten worse over the last 2 weeks probably because of all the stress and just me trying to be helpful and unfortunately it doesn't always work. Sometimes it makes it worse way worse. I love heather with all my heart and to see her struggle with all that is going on and the stress that is happening is just rough. She deserves a break. A time to not have to be "perfect". To not have to worry about Eli. That is way easier said then done especially when eli and her life are pretty much one. She does everything and I wish I could take the burden off of her however It is hard for someone to pick up this late in the game. 23 months of her knowing everything. I feel sometimes that i don't know my son or wife no where near that i should. It is rough. I don't know what to do or how to fix it. It is just one of those things with a special needs child that it seems that moms are always the primary and dads are secondary in the care. Why is that the case? Why can't we share it? I guess in an ideal world that could be the case however our lives with a complex kiddo nothing is ideal.