Monday, June 4, 2012

Hey There!

Wow I think I just went  a week without an update! I guess life has been busy but not busy enough for a normal update. Of course this new consistent schedule I thought I was getting didn't happen so life has been a bit more hectic again. Also I am doing what I can to spend my time with H working with him doing the stuff his ECI therapist is doing to get him the extra help that push he really needs.

While we were at home for the 4 days I fell into a place I am not proud to say I hit. I was so down and feeling hopeless and frustrated I was really afraid of what was going to become of me. I was so angry and lost. I could not wait for nap time to roll around so that I could sit down and have some time to decompress. I realized at that point that staying at home with H would not be good for us right now. While I can work with children all day long and I have a fair amount of patience, the demands and needs of H are something that I need help with and fear I would not have just being at home with him all day. He needs to be around others and in a different setting. I was really quiet relieved when school rolled back around on Tuesday.

Last week we saw some progress along with some set backs. His morning teacher was moved to another room and they placed a new teacher in his room. His new teacher is great and trust me she was well warned of his issues. She handled him like a champ! Kellie trust me that Lobster Rita was well earned my dear! However with the changes with a teacher and now my schedule changed, oh and lets not forget our 4 day weekend, we saw some new issues come about. We will celebrate the no biting, ok well he bit once but it was so not a big deal we are just going to shrug that one off. Though the meltdowns, shuddering and the aggression of pushing and hitting are needing to now be addressed. 

Tuesday morning I went in cringing praying that this new schedule, new teacher and odd week would just not phase him. Tuesday went pretty good. Sigh! Wednesday was about the same just lots of aggression. Maybe this week was not going to be as bad as I expected it to be. Gosh did I say that out loud?! Thursday we hit the downhill slide. It started off taking the dogs to the vet to go get groomed. That flipped him out when they took his beloved Schatzie away. The ball of fluff cat toy they gave him actually worked well. It was at that moment I realized no matter what those dogs can not leave our family and of course B! YIKES! The day was a total flop. He flipped out all day, hit kids, shoved them and just kept throwing himself to the ground. Friday was that but much worse. It was a relief oddly to be able to leave early.

So I am making a list of things for his therapist tomorrow. What is working, what is not and new concerns. We have discovered a couple of things that we are realizing while at first were cute are now a bit alarming. We thought his food rage was something cute he would do but now realize he will stop stare off and ball up his fists and shake them. Sometimes his whole body will tremble sometimes just his hands and arms. Sometimes he will let out these high pitched shrieks others he is just quiet. He has also become the stripper. If he is mad the clothes are coming off. Dinner and a show anyone??! I am hoping for a call after I get out of work tomorrow to go over stuff and see where to go from here. I think speech starts tomorrow however I am not sure. I guess we will see.

Tonight we are starting Melatonin to help get him to relax and rest. I am desperate to find a way for him to wind down and get some decent sleep. He was crashed out by 8:30. This is a first for us. It was nice to have the last few hours to relax and just do what we needed to do and not have to worry about what H was getting into and preventing meltdowns. However I just came upstairs for bed and he was sitting up in his bed ready to go. Thankfully now he is at the foot of our bed asleep. I do chalk a bit of this up to him having croup but the coughing has not been to bad tonight.

Thursday is a big day for us for two reasons. We make our trek to Ft. Worth to meet with Dr Pfaff, his pulmonologist. I am hoping for some great answers and some big relief. If the rumors I hear are true this should be our only apt in Ft. Worth and the rest will be done here in Abilene. This would be a huge help for us quiet honestly. This is also the day we pick up the kids for the summer! I get to pick up my 7th grader, 4th grader and 2nd grader! Yea that is right I got some pretty big kiddos now. Sean and Hannah's birthdays are just around the corner and I am sad and happy all at the same time. A 10 and 12 year old! WHAT! Who said they could grow up?! I am hoping they are just as excited as I am for this trip. I miss my babies like crazy!

I am sure there will be an update Thursday evening as to what happened at Cook's and how wonderful it is going with the kiddos. I am again just so thankful for our friends and family who are showing so much love and support right now. The more answers and help we get the more and more confident I feel that H will get the best opportunities possible! We are still awaiting to hear from Dr. Rogers in Lubbock this still could take a few weeks but we are hopefully that we can get an apt soon and go from there.

As for the plans to move those are now all just plans said aloud. We want to go back home but there are so many variables that are coming into play. We have to make the most rational and reasonable choices. I want to be back where my roots are, where my family and my friends are. I am sure it will happen but it is not wise or mature to leave where we are at with no firm idea of where we would find work, live or go to school. Once we had more firm plans and details we can make this plan take a bit of action. We still have a lease until September so we have some time to try but of course if nothing surfaces between now and then we will remain here doing what we are doing. I have found a great support system out here and am so thankful for them because without them right now I would be lost. They have helped me make this place a home when I said it never would. It has made a world of difference.  Thanks a million you guys.

Well the Melatonin has kicked in for both of my boys so I guess I am just going to close this up and call it a night. I started this a few hours ago but got so excited about my extra free time I got a wee bit side tracked. Hope you enjoy! Good night all