GREAT NEWS!!!!!!

Mr. Avery rolled over today. He has been really trying to move his arms and legs over the past couple of days. He had a great nap today so lots of energy and so active. He rolled from his back to his belly. Avery has not done this in more than a year. Such a blessing. And so proud of himself of course. What a great ending to a crazy start of our week. He has been sounding really clear and has not needed
O2 since earlier in the week. The more active his gets the better it is for his respiratory system too. So lots of good news for him. There is going to be some crazy rolling boys around here. LOL.

Isaiah started retching today which always stinks. Not sure if it is a cycle or not. His leaking around his tube site has slowed down considerably b/c we have started to lengthen his feeds to while he is sleeping and giving him smaller amounts at a time. This is b/c his motility is slower so there is less food to move. Hopefully this is the key and we are able to avoid any invasive procedures.

Hope everyone had a great Halloween.

So earlier this week we had a "MAJOR INCIDENT" which almost killed Avery, literally. He was actually coding and by the Grace of God was able to come out of it. We are truely blessed to have God working in our lives. Also Mr. Avery is one amazing little boy who shows us time and time again that he wants to be here. I have said it before that he is here for a distinct purpose and it is not even near done. I sure don't ever want it to be but I do know that it will eventually. I am still reeling from this and so is Rick. To think that after all he has been through and all the strides he has made that we could have lost him this week b/c of carelessness just kills me.

But things turned out okay and am so grateful for that and will continue to cherish my little miracle. Sure don't know how many lives he has but I hope its many more.

Avery has been doing really well respiratory wise lately. He has gone about 1.5 weeks without o2 at night unless he is on bipap which is a Miracle. This sudafed has really done wonders for him in that respect. However, his spasicity has been really bad lately. He is up alot more at night screaming in pain and very stiff and uncomfortable in his own skin during the day. The Pallative nurse is coming tomorrow with flush his port and will work with us to adjust his meds. Hopefully this will work. We are so close to getting him to the point of feeling good most of the day. I am so eager to do this for him so he can regain some sort of life. As you can see by the last pictures what he can do if he feels good. You surely don't want to see pictures of what he looks like when he is not feeling well.

Isaiah is still having tons of leaking which I do believe is a motility issues which is not good. So I know I will not put another hole in him at this point. I am going to see if we can try some other meds and get more testing in for him. But again it is all the process of this terrible disease. He is doing great otherwise and really learning so much at school.

Things othewise are pretty quiet around here.

Happy Halloween!!!!!

Look at ME!!!!!!

This is really hardwork for Avery but he is feeling good these days and was able to hold up his head for 2 mins. HUGE milestone. Doesn't he look like a big boy now. Sad.

My poor little man. It is true that he is much clearer than before with the sudafed on board. But..... he still has mucous plugs and secretions for which he tries to hide b/c he is so afraid of being suctioned. He will quietly work on the secretions on his own until he can no longer take it then he turns to a total spaz b/c he knows what the outcome will be. Isn't that so heartbreaking.

This morning he was up bright and early at 4:30 (no nurse) and had alot of secretions. Honestly, I was too exhausted to do much of anything and over time he worked it out on his own and coughed. Who would know my little guy would be an emotional wreck but he truely is. He spent the majority of his day in spasm mode today with some secretions and had to be suctioned but then vomitted which is not what we want. He seems so be vomitting when things get near his mouth. I was worried about this happening. When you are suctioned alot then there is a risk of making the gag reflex overactive or nonexistent which would screw us either way. Just hope it is a fluke thing.

It is taking him hrs to go to sleep at night and lots of meds to do so. My kid just REALLY needs a break. I just would like for him to have one full week of peace. I just think that he has been through so much and is does not trust people and what they will do to him, except his momma of course. I wish I could stay home for a week straight just to reassure him to see if this is his issue and to fix it. But that is not reality, unfortunately.

Things have been reasonably quiet around here. The sudafed really seems to be helping Avery in terms of him being able to manage his own secretions more by coughing. But it sure does not come without it's issues. Sleep for one. He went from being drowsy with it to not wanting to go to sleep at night. Last night he cried for 3 hrs. which of course resulted in him being suctioned and needing o2. He has actually gone the last few nights without needing oxygen which is such a huge improvement for us. I swear it is like we were given a longer life span. It' not that I feel that it has solved our problems but it surely helps and we are so grateful for it. He is actually starting to be much happy now that he knows he is not getting all kinds of interventions. It's like he is just starting to trust us again. Although he was a wreck today in terms of his spasicity. This is where the Pallative nurse will come in handy though. I just pray that we can continue on this path with him b/c he so deserves it. BTW am and still adjusting to his new haircut. He now looks like such a little boy. NO MORE BABY.

Isaiah is still leaking tons. I am just so unsure about what to do. I don't feel like putting another hole in him is going to solve our issues. I do believe that his motility has slowed down which is to be expected with mitochondrial disease as it takes alot of mitochondrial to move food down your intestinal track. This is why I feel that he is leaking more b/c the food is backing up a bit. So I really don't see how putting another hole with solve this issue. I want some motility testing done to prove it before I even consider surgery for him. The last surgery I consented for him was his fundo which I felt like I was pretty informed although little did I know there was much more to know and this is why Isaiah retches so much now. So I will not do something that will potentially harm him more. My other concern for him is his gut slowing too much and will eventually just shut down meaning there is no way of feeding him except through an IV which would be a complete nightmare. Currently many other mito families are faced with this. I just hope it is not us. So plenty of research to do before I make any decisions for my man.

It is so hard always needing to make these tough decisions for our kiddos. My mind feels like it is so fried at this point. Rick and I are hopefully going to the hotel for some R&R this weekend.

Also the night nurse started and she did fine. I actually had no problems sleeping through the night. We put Avery in the side room off the great room w/ a bed a chair for the nurse. THis works out great b/c we cannot hear her and she has everything she needs. Janessa is also thrilled b/c she gets to sleep upstairs in Avery's bed when he has a nurse. So the whole house sleeps peacefully at least 3-4 nights a week. YAY......

OH NO!!!!!! What did I do?????

Avery's hair was starting to look like Don King so I decided to cut it with clipper. I used a size 3 guide. I just want to cry. No More Curls. It looks terrible. Sure hope is grows fast.

The sideways picture is the before and the other is after.