Avery's good moments

So it is not my thyroid nor am I anemic. All the bloodwork came back negative. So there are still a few things it could be.

1. I pregnant which is not possible b/c my tubes are tied but I have to get my period this weekend or I may question it? Highly doubt it though and it would not be a good thing.

2. A few people have brought up lime disease which I also doubt

3. I am depressed which I am not the depressive type and just don't feel that I fit it.

4. I have mitochondrial disease which is a possibility.

5. It's all in my head and I am crazy.

WHo knows, I am such a need to know person medically speaking so it kills me when there are symptoms and no answers. Especially for me who is super healthy and I have to always be b/c I me kids lives depends on it. Hopefully I will just get my period this weekend and feel suddenly better.

They boys both have colds which is rare. I think Isaiah has only had one 2x in his life and Avery is always so chronically junky so you can't tell. He has been waking up daily vomitting excessive amounts of mucous which then causes him to be junky. I love waking up every morning to him retching and vomitting. Not.

Rick and I have another wedding today so we get to have fun as a couple.

Did you tell you all the that my husband surpassed me on the weight loss which is what was supposed to happen. He has lost 19 pounds. Woooohoooo. He goes to the gym daily and does not SNORE at night anymore. So you see, I get lots of sleep now. He looks really good and I am so proud of him. I will have to post some pictures of him in a few more weeks.

Another rough day for Avery

He spent most of his day in a complete full body spasm (this is the only way I can describe it). He is in the ATR (fighting reflex) position, arms and legs straight out, weird mouth shapes and this high pitched wine and his toes curled. He was so drugged today and yet nothing had any affect on him at all. It is sooo painful to see.

Ironicially my mito. dr called to check in on us (which is not a common practice), she also knew that I went to the conference and want to see if I got any info on the boys. I was pleasantly surprised that she was interested. I told her about how awful Avery has been and we are going to try a few meds that were mentioned at the conference. Although new meds for Avery is always a big deal b/c it could be great or horrible for him. I also told her that the drs. were certain they did not have PDH and she said that she has alot of other bloodwork from all of Avery's previous stay and alot of result were in. We will sit down next week and go over all the labs that came back from clinics in Atlanta and Cleveland and Baylor. She did not think anything came back abnormal but we can see what else needs to be looked at. So the great news is I will not have to send any of the boys records anywhere b/c she is actively trying to find a dx and mutation. That was really comforting. She really cares about my boys.

I call my drs. office today on my bloodwork and the nurse was supposed to call back but did not. I will have to harrass them tomorrow. I got up this morning and felt good, went to the gym and could not even complete my workout again. That is on a full night of sleep and a high protein breakfast. This is not normal for me. I made it through work fine but was so exhausted by the time I was heading home. I could not even find the energy to pick up my bottle of wine. WOW, now you know something is wrong. I guess it is a good way to get me from drinking wine. LOL.

So my energy level was not ANY better over the weekend. In fact it was worse. I NEVER nap and actually napped for 2 hrs. on Sat. This is so not me. I get that my life is crazy and sort of settling down but not really and hey things have always been crazy in my life. I am always a high energy person but lately that has gone way down the tubes. I cannot even muster energy to workout at the gym which is not normal for me at all. So I actually went to the drs. today. Everything looked great but she ran some bloodwork for my thyroid and iron levels. Hopefully I will hear back in a few days. I did mention mito and my kids. She looked at me like I had ten heads. She had no ideas of what is even was let alone where to start with bloodwork. I told her some standard tests to run and she did not even know if their lab ran lactate and pyruvate. LOL. I know everyone thinks I am crazy for thinking this and it all has to do with the conference but I am sorry, it just did not fall out of the sky. Either me, rick, the combo or both or just me gave it to them so it IS likely for one of us to be symptomatic. I guess I just worry b/c it is such a devastating disease and can present in so many different ways. It has no rhymm or reason. So who knows. Then I though about being pregnant which is totally unlikely b/c my tubes are tied. If I was, I would actually go crazy. There is NO way of us taking on another child let alone a sick one. But that is not the case. Your mind surely goes crazy. KWIM??? Because if I am sick, being the primary caretaker is a big deal.

Isaiah started summer school today and can I just say, IT WAS A COMPLETE DISASTER. The bus did not have him on the list as even going so I had to bring him this morning. There were kids, parents, teachers running around like chickens with their heads cut-off. Complete madness. I was afraid to leave him there but his nurse is wonderful and knew she would take care of business. Hello, they don't even have an area to change these kids. Hopefully things are much smoother tomorrow.

Avery did not have such a good day today. I think we need to reevaluate his methadone for a higher dose. By 4pm daily he is just grimacing, arms and legs straight out, teeth grinding (the whole nine yards) He is either super junky and respiratory one day or in total pain and dystonic the next day. He may have 1-2 decent days a week. But hey is has been hospital-free for over 6 weeks.

Janessa is still at the beach with grammy. She is having a blast. Boy, this house is soooo quiet without her. We miss her.

It's been a busy couple of days for us. On Thurs Rick and I took Janessa to Six Flags with some friends. We had such a good time. Amazingly, that was the first time ever that we together took Janessa to an amusement park without the boys. Last time she went with us was Disney when she was 3 and that was a complete disaster b/c she got so sick and remembers nothing. She literally went straight to the hospital off the airplane. So it was nice to have a disaster free day at a park. She is very daring, she will go on anything. She is pretty tall for her age so she makes most rides. Overall, it was a great day.

Yesterday we went to a friend's house for a cookout. He has a beautiful house and inground pool with a hot tub which Avery loved. He was in the hot tub quite a bit. Sounds like a great future make a wish for him.

Today is Isaiah's day, since we have done something with each kid over the past few days. We are taking him to the movies today. He starts summer school on Monday which will be a nice change for him.

For me, I am still battling that severe exhaustion daily at the same time. Despite taking vitamins and what not. I am going to have to get back into the drs. b/c something is just not right. I am sooo paranoid that I have mito. disease b/c of the fatigue. Many adults become symptomatic around my age. It would be awful. I am sure it's nothing but you can't help but think about it.

I am still reeling from the conference and have been within my own thoughts lately. It was actually really good not to have my cellphone for a few days. No calls, just me. You just don't realize how much we are attached to it once you don't have it. What did we do without them. I swear I am going to take a cell break every once in awhile. Hopefully my car doesn't break down. LOL

Anyway as I was saying. You or at least me cannot help to think of mortality after the conference. I just saw so many kids or heard parents that have kids that are mildly affected, then there are my boys. It is said that the more symptomatic you are at a young age the worse the prognosis. Sounds like my boys. Sure, anything can happen and it is in God's hands, yadda, yadda, yadda. Still does not make things any easier knowing that I had three kids and probably by their teenage yrs. I may only be left with one. It is the reality, my Reality. I don't often think about death but it tends to creep up at times. I keep on going over those words with the women that lost her son "were you able to get up the next day". Will I? I am sure I will but..............
I guess like a friend of mine who I went to the conference with, having kids so profoundly affected with this fatal disease is really hard to see kids mildly affected. Now I would not wish these parents to have sicker kids but it is just really hard to see.

Don't know if I said it the other day but Avery has basically saved Janessa's future. When Isaiah was dx with mito, it was assumed he had PDH and no skin biopsy was done. Well when Avery was born, rather than doing a muscle biopsy on him we opted for sending off his foreskin from his circumcision. This is when there was alot of question about the PDH dx. So they ran a skin test on Isaiah which also turned out negative. Apparently it is not possible to have negative skin biopsies and PDH. So we would have not had a clue in terms of searching for a mutation if my little man was not here. Told you he was sooo meant to be here. Hopefully b/c of Avery we will be able to find a mutation for Janessa so she can have healthy kids. So until we find it, me, Rick or janessa can be tested b/c it is like finding a needle in a haystack. KWIM? I am confident that we will find this mutation in the future.

Avery had a rough day today. Lots of pain and tone issues. Some days are better than others.