Today was one of those days that I am soooo glad I work. My nurse today is one of the most laid back and can handle alot. Isaiah was home sick today and still not back to himself but it was Avery that was a complete train wreck. She said he started at 10am and he body was literally twisted and contorted. No meds even touched it. He then screamed for hrs and was unconsolable. When she called me to have me page the pallative team b/c something had to be done, it felt like someone was stabbing my heart. I paged the team and they were very disappointed that the baclofen was not the answer since he was at his max dose (ya, no kidding). But they were really concerned that it is more the progression of his disease and of course that is always in the back of my mind. But then I think, he is doing well in so many other ways "how can this be?" Basically is seems like we are running out of options in terms of meds. So they want to see him first in the morning and we are going to come up with a new plan. We are obviously going to wean off the baclofen and back onto the valium. The concern with the valium is that his pain is getting so bad that we are going to have to keep raising his dose every few weeks. He is already on adult doses of other meds :(

I know I keep saying this and we have been through many bad symptoms of this nasty disease but Pain in your child that is so difficult to control is BY FAR the worst of it all. You just cannot even imagine.

Please wish us luck tomorrow that we can start to get my little guy on a path of many many smiles and less pain.

HAPPY EASTER

Hope everyone had a nice day. We had a great day at our house with friends and family and dogs :) Isaiah was NOT feeling well at all but Avery had a great day. Seems his meds are helping a bit, just praying that stay that way. Enjoy all the pictures.

So Mr. Avery is STILL struggling horribly with pain. I spoke with the team again and pleaded with them that I just cannot take it anymore. This is NOT quality of life. Poor cutiepie will have these bouts throughout the day that he just starts screaming like someone has just bit him with tears streaming down him face. OMG, talk about gut wrenching. Then after 3pm all hell breaks loose. They will be upping his baclofen yet again. I just don't think that it is working but I agreed to try it over the weekend and if no difference has been made then I wanted them to put him back on the valium or IV meds. It is just such a tough battle b/c you feel like you are fighting people to give your kid drugs so you have to tow the line. However, I am not the only one who sees him like this and there are alot of reality checks. Just want this little guy to feel better. It is just killing me.
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Okay that was sooo depressing. I am such an upbeat person and I hate having to talk about depressing things but "it is what it is" right!!!!

Rick and I are pretty excited about the weekend. We are staying at a really nice place and it will just be nice to sleep late, although Rick's late is 10am and my late is 7am. Doesn't matter, it will just be nice as it is a rare occasion that him and I get to get away together b/c someone always has to be with the boys.



Wishing everyone a HAPPY EASTER AND PASSOVER!!!!!!!!!

Not sure if this layout is an improvement over the last one but I will tell you it is a pain to change it b/c I have to reload everything. Hopefully this is easier to read though. Just trying to add a little brightness to reflect the spring which is my favorite season.

Anyway things are unchanged with Avery. He had a horrible night last night and not a great day today. Thankfully he has night nursing tonight b/c we had to medicate him quite a bit to get him to sleep tonight and his meds never last too long before he is up screaming again. It is just so frustrating not being able to get his pain under control.
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Since it seems like I am always talking about depressing stuff, I figured I would give you ten things that bring tears of joy to my eyes:

1. When Isaiah squeals out loud b/c he is cracking up to his favorite shows. Which luckily he does throughout the day when he is feeling good.

2. Seeing the joy in Rick's face when he was teaching Janessa how to swing the bat last night.

3. When Avery laughs hysterically b/c mamma is talking with her hands (which is my norm). Just loves how he crinkles his nose and shows the beautiful teeth of his.

4. Seeing Janessa with Billy, grammy's new dog. She is so good with animals.

5. Watching Janessa break it down. So funny.

6. When Isaiah rolls like a bangy trying to catch up with Billy the dog.

7. Both boys laugh at the same things which is so cute. Well when I give them a bath in the morning the last thing I put on is there shirts so as soon as I do that they know bathtime is done. This is when they start laughing hysterically. It is the best way to start the morning.

8. For me I love working with the elderly in the nursing homes. I love when I give a pt. their hearing aid and they are so grateful to be able to hear. It makes my job so rewarding.

9. Watching Rick in his element coaching his kids at a game especially if they are winning.

10. As you can see I just love to laugh so the best thing is when I can laugh with friends so much that I want to piss my pants.

Okay that's it for now, thanks for reading.

Sorry for the lack of updates but it is b/c I have been busy not b/c anything bad happened.

Things are pretty much the same in terms of Avery's pain management. The increase in meds has only helped a little. He continues to struggle with painful spasms. The other day we were at the hospital for an appt., poor kid was in the elevator spasing and screaming out with a stiff body and red faced and people were just looking at him in the elevator with that "poor kid, wonder what is wrong with him look". Man I hate those looks. I swear I need to put a sign on this wheelchair saying, "It's nothing just me spasing out". LOL.

When I was in the hospital the last time I was speaking to one of the nurses and asking about "what his most difficult chronic pt. was?" He said he had a kid literally die of pain. Of course I am now haunted by this. And paranoid that this will be my little man. I cannot even imagine. That is just shear torture and would not let Avery get to that point. Just really said.

Okay, enough depressing stuff....,,

On a good note. Avery had an evaluation at this Profession center that has been providing us with switch toys and equipment since we have moved. He transitions out of them next month when he turns 3. Well he had a communication evaluation at their school yesterday. Number one, this kids never ceases to amaze me. Avery was actually playing computer games by hitting switches on both sides of him. Even through the spasms he was doing awesome. Very exciting.

Well they have a preschool that goes to age 7 for kids just like Avery. It was awesome and they really want Avery to go. I think this would be a perfect fit for him. They have nurses in every classroom and it is filled with wonderful caring people. I am so excited to have him go here. Okay, no celebrating yet though. It is a private school and our town would have to pay. It will probably cost the school system at least 50k a yr. So you know that will be a fight. So the key is to justify why they can provide better services then our town. I think it would be better then him being home schooled. If we have to hire a lawyer, then we will do what we have to do for our little man.


I also wanted to give a big THANKS to the Central Catholic baseball team. They did a wonderful thing by making a donation to the United Mitochondrial Foundation in Isaiah and Avery's name. Thank you so very much. We are very lucky to be part of the Central family.

Things have been pretty frustrating lately in terms of Avery's pain management. The pallative drs. started to wean Avery off the valium since the added baclofen for spasms. This started over 3 weeks ago. He did fine until they got rid of the 5 pm dose which was last week. Poor kid has been just so miserable. Just really sad to see. He tries to smile even with all that pain. When his is in pain he cries and gets all junky which leads to suctioning and O2 needs. It just sucks. So we are back on the path to try to manage his pain and so far nothing. I really think the best thing to do is put him back on the valium and just leave well enough alone. It seems like we are back to square one and he is suffering through all of this. Ugh.

So Miss Janessa who really did not want to do softball went on Sunday. Homegirl was picked in the 3rd round draft. What does that mean, Hmm I think the coaches think she is going to be a powerhouse hitter. We will see. I think once she starts feeling comfortable with the ball she will be good. Our cities youth sports are a bit crazy. There are over 400 girls playing softball this yr. So it should be interesting.

Mr. Isaiah is great as always. I just cannot believe his is going to be 7 in a couple of months. Just blows my mind. I am so happy with how far he has come it is such a blessing.

Me, I am overwhelmed as usual. Work is just crazy. I swear I could work 7 days a week and still not be caught up with things. I know I should not be complaining as there are so many people out of work and I am lucky to have such a good flexible job. It is just really stressful with juggling the boys care and Janessa activities and keep my sanity. This week alone I am working Mon-thurs and Avery has a drs. appt. Friday and Sat (yup, Sat.) so sheer madness.

Luckily Rick and I are going away next Friday night to a really nice place for our Anniversary :)


Thanks for reading everyone.