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Sunday, November 6, 2011

the last couple of days

Its has been interesting couple of days. They have been stressful and kinda mellow all in one. It has been pretty difficult to deal with some of the stress that has happened over the last couple of weeks. The frustrations with so many things. Holidays have always been my worse. Then with all the new things with Eli and all the normal things that stress people out during this time of the year. We have made some more changes to hopefully decrease the amount of stress in the house. We shall see in the next week or so. Heather and I have been working out and spending more downtime to just decompress and that has really helped us I feel just to breath for a few. Thanks to all who answered my stress question on Facebook it was nice to see how others deal with stress.

Ben has had a couple of meltdowns which have lasted for hours. It is so hard sometimes to just ignore and not feed into his screaming fits which he has no control of and has no ideal why he is even upset.

Eli has been doing ok his choking and gagging is still going strong and I am still not sold on the trach idea. I just feel that there has to be some other options. They are saying that we may need to stop the robinal for his secretions due to the heart rate increase that the medication can cause. Mind you I don't remember ever being told that this medication could cause such a problem. We are asking around and getting advice from others on what options that they have heard of. So hopefully when we get this care meeting to discuss we will have some to discuss and see what the doctors say. Right now one of Elis' main doctors says the trach would be permanent. We will just.

Last night we got to go out and see a movie and dinner. We went to a new vegan restaurant it was called Eden Alley super yummy food. It is a total relieve that we found a place that values good food, the healthiness of the food and value. We saw the tower heist. Wow I would totally recommend this movie very funny. I feel that it was a well needed and well deserve night out for us and it was very relaxing and stress free night. Gotta love those times.

Friday, November 4, 2011

Wow what a dayI

Today started out with exercising at 5:15 am just like we do every Monday,Wednesday, and Friday. We did our routine and worked out for about an hour. We waited to see if we had a nurse today. Which we knew it was a possibility that we may not and we were totally ok with it. Got the kids up and off to school. The I took Eli and Ari to playgroup at the Kansas school for the deaf. It was nice we talked about how to teach reading to someone that is deaf. Heather stayed home and got Jace to his doctors appointment. It all was good until then.

Jace had his appointment it was supposed to be at the location that heather and Jace were at. Unfortunately someone messed up big and scheduled it when the doctor was not at that location. I can only imagine how frustrating it was for them. Earlier as i was coming home heather text me and told me for the 4th time our heater went out and the house was freezing. So just crazy. We just can't get a break. When will our landlord just stop trying to fix things with just parts and take the advice of the professionals and replace the damn thing. So then heather got home and then we ate lunch and got to Jace's IEP.

Heather received a call from Eli's Pulmonalagist and it was pretty emotional to say the least. He wants to get a team meeting together to get a new care plan in place. He has said that if putting Eli on benedryl and taking him off of zyrtec we may have to consider a permanent trach. This would help with his secretions and keep him from chocking at night. I truly don't think it is the best thing. There has to be other options. Maybe I am in denial. It just frustrates me we get going and stabilizing a symptom and then another one flairs up and no one knows what to do.
Jaces IEP went well they are wanting to put more support in place to help him in speech therapy. The speech therapist thinks that Jace has understanding problems when he says a word that it is heard and it should be another. She thinks this is the reason for spelling problems and testing problems. They are going to have someone help him with some of his test to understand what is written. I can't wait to see the changes and how it should help him academically and socially.

Ben is in another one of his moods tonight. Mad about everything. Screaming and shouting. Totally no patients. The life of an autistic child. Some days are good and somedays are not so good. This is one of them.

One frustrating day after the next. Can't wait until tomorrow Heather and I are going to go out and see a movie. Just her and I.

Thursday, November 3, 2011

How times fly

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.