So Isaiah has had a pretty crummy week. He usually only lasts about 3-4 days max in a spell and then he is out of it and back to his happy self. Well, he was happy for about a half a day this weekend and back to retching again today. What is going on. This poor kid. It just seems to be getting worse. Then there is Avery, this j tube was supposed to be helping his vomitting. Well here we go again, another intervention gone aray. He is still vomitting and still not gaining at all. These boys just have the worse digestion issues. Just the most basic things in life like getting nutrition is extremely difficult for them. The things that we take for granted in life.

We will be seeing a case management team on Monday at Children's with both boys and GI. Hopefully we can get alot of things squared away. I say this everytime I go to these appointment then I leave with more questions and no answers. I can be so depressing. But this case management team is supposed to help with looking at the boys as a whole and coordinating their care and organizing the millions of appointments they have. With GI, I am going to talk to them about an experimental drug that was taken off of the market b/c of the side effects and is sort of a last resort for the boys in terms of meds. They mentioned this drug before. It is certainly worth a try. It is all about quality of life for these guys. I will do anything for my boys to have happiness and feel good.

This week is a time for many sad goodbyes. Since we are moving next week, all of the boys therapy sessions are ending. We have been blessed with so many loving people in our lives to help care and guide our boys, it is just amazing. They have all become a part of our family. They are in my house first thing in the morning or late in the day and have seen so much go on in our lives. I would like to thank you all from the bottom of our hearts. We will miss you. I hope we are blessed with more amazing people.

Today was a great family day. I forget how fufilling it can be to spend the day with family. Boy it just bring back so many great memories. I cannot believe my "little cousins" who are not so little any more are having their own families now. Such wonderful people.

To my oldest cuz girl, I am so very happy for you and your family. You guys are going to be such awesome parents. And what a blessing parenting truely is. To the rest of my family, thank you so much for keeping on me about spirituality. I finally get it and what a blessing and eye opener it has been. God is so good. It is days like this that God really makes you take a look at all your blessings and what he can provide for you when you believe in him. Also I am very thankful for after 2 yrs of finally speaking to my handsome and amazing nephew. Just remember that auntie loves you from the bottom of her heart. We miss you.

Happy Fourth!!!!

So the weather was not all that great. We started the day and got quite a bit packed and organized...... We are moving a week from wed. I am so excited.

Isaiah is still in his spell which means he is still listless and looks horrible. I know he has a migrane b/c he keep putting his hands over his eyes. Poor guy. He spells just seem to be getting worse. I just can't even imagine if I felt the way that he does. I wish I could take his pain for him. He could not go to the cookout b/c he was not feeling well. Poor daddy had to leave early to meet the nurse. This is so typical of our lives. Me and my husband usually have to split up b/c the boys can't stay. I am the social bug and luckily Rick does not mind hanging out at home with the boys. But it is really sad.

Well I hope everyone had a great fourth. Time just flies. I can't believe it's already July.

So things are seeming to fall into place with the move and services for the kids. It is so difficult to move to a new area let alone with 2 special needs kids and all of the services that go along with it. Also Janessa is nervous about going to a new school and meeting friends. If she is anything like me, she will make friends immediately. Anyone who knows me, knows I will talk to a tree even though it doesn't talk back.

So many of you may have heard me mention Cyclic Vomitting Syndrome (CVS) this is a condition that Isaiah suffers from about every couple of weeks. It is basically described as migranes. He get nausea, light intolerance, listless due to severe retching in his case b/c he cannot vomit. This lasts up to a few days where he basically has dry heaves and is so tired that he just lays there and drools. He has been on just about every med. that is known to help with this but to no avail. I actually found a great article online last night from a dr. who specializes in CVS with mito. kids. Hoping to get some tips to help my man. He responded promptly which I was pleasantly surprised. However, he said in a nutshell that he has only had 4 cases out of hundreds that have not responded to meds. So add Isaiah to that list. How discouraging is that. Well don't you know it, today Isaiah started a spell. Poor thing looks horrible. We give him valuim to help him sleep. Please pray that my boy will outgrow this soon.

Nessa is homesick already

So she called my bawling her eyes out. Poor thing. She wanted to come home today. I told here we were not able to pick her up until tomorrow. I am already ready for her to come home too. So she made it to nights. God, what I would not give to be at the beach for even two nights.

So Janessa is off with grammy at the beach for 5 days. We already miss her, the house is soooo quiet without her. She is truelly the life in this house. I really hopes she has tons of fun though. Rick and I are now starting to pack and hope to be productive with getting things organized for the move. Just a little over 2 weeks. We are getting excited now.

I spoke to the Sped. person at the new district and it sounds like Isaiah will be in a pretty good program which is such a huge relief. He will need nursing at school and hopefully that works out b/c Avery also needs nursing at home. I am a little nervous about the services that Avery will be getting b/c we are just leaving such a great program. I guess we will see. But if anybody knows me, they know that I won't settle for anything less.

Went to the pedi. with the boys on Friday and he was asking me to start coming up with a plan about the boys Advanced Directives. It is also so scary and sad. It has to do with life support decision and feeding interventions. He was bringing this up b/c Isaiah has had so many pneumonia's this winter and I ccould really be a reality that if he got really sick with this and we did not have a plan in place that it would not be a good thing. So Rick and I started to discuss this. Basically, when Isaiah is not the happy go lucky boy that we know anymore, he will tell us when it is time to let him go. Hopefully, that is for many, many yrs. to come.