|
snickchickroo
|
read my profile
sign my guestbook
Name: Amarisa
Interests: Being a mom, anything outdoors,medical field, fire science,reading
Expertise: Medical and firefighting.
Message: message me
Member Since:
6/25/2005
|
|
| Last weekend we found out Jackson had strep throat. I was done with all the illness and we didn't even have the "flu" yet. Well, guess what. We have the flu. I must have gotten it that day from someone in the doctors office. I started getting sick monday. Wednesday I saw the doctor who confirmed it was H1N1. Noah and I can't take tamiflu but Jackson started it wednesday night and Michael started his thursday morning. We're all really sick holding up in our apartment. Hopefully we'll all be feeling a lot better within a few days.
| | |
| OK, so Jackson's had a rough week and lots of stuff has been happening(more later) I decided to take him into the urgent care at his doctor's office today. We where there from 11 tell 145. It was a very long time. But Jackson has strep throat. Yep he's sick again. In the past 2 months we've had a cold, stomach virus, whooping cough and now strep throat. UGH!! I have a feeling this will be a very long winter with illness and we haven't even had the "flu" yet.
I've been working on doing an update on Jackson and Noah, all the health problems and one about what they've been up to recently. Most of the time I'm on the computer is when I'm nursing one of them or one of them is sleeping on me so its difficult to type very much. But I haven't been posting very much lately and I've been meaning to do one about all the money I've been learning to save lately because I'm so excited.
I've come across peoples blogs from time to time that are people who coupon. I never really understood how they where able to save that much money and was never able to really do to much but I was interested. As time went on I was less and less interested as I became more and more concerned about the food that my family eats. We've cut things out of what we eat, I buy organic(not everything just somethings right now), I buy a lot of fresh vegetable and fruit. I thought that there wasn't coupons and really good deals on that stuff. But I was wrong. There are organic coupons out there. I've also come across some really good sites and I've figured out how to save money on groceries and other areas. I'm still learning and will get better over time. Especially once I have a better stockpile. (the key is to only buy on sale with coupons for very little and stock up so that you never pay full price for anything.) I know that I won't be able to save as much money as some people save on groceries because I feel its more important to eat healthy then to save money on certain foods. Like we don't eat sugary cereal even though you can almost always get a box of cereal for less then 50 cents. We'll still always be paying more for produce too. Some people just don't eat fresh produce at all because its expensive. But I feel its worth it for my families health. So we'll just price match when I can and buy locally and stuff.
But I've gotten some really good deals in the past few weeks since I started saving money better and I wanted to share them.
Main grocery shopping trip for the month total was 200 brought down to 130 after coupons. save 70 dollars with coupons.
We bought the new Snow White movie for only 4 dollars.
things I've gotten for FREE deodorant, pumpkin carving tool, chapstick, two samples of happy baby organic baby products,a $5 gift card to target and I think there was a couple other things I'm not remembering now(very little sleep these days) and there was a few things I signed up for and will be getting free products and coupons in the mail over the next couple weeks.
I've been pretty excited about finding things like this. I also found some other really good deals that I would have loved to get but just couldn't fit in the budget this month.
I also wanted to post a new picture of Noah so here is a few of him all smiles for mommy.
| | |
| Well its conference weekend and we're missing it. We're too contagious to go anywhere, our cable company doesn't get the BYU channel, and our computer doesn't have sound so we can't listen to it online.
The reason we're contagious is because we have pertussis(whooping cough). A few weeks ago Noah started having these weird choking/gagging episodes and making weird noises. After a few days I decided to take him the doctor to have him checked out just to be safe there wasn't any thing major going on because he has a lot of problems swallowing anyways(we have a swallow study scheduled next week at the hospital for him). When I took him in he was running a very low fever. So the doctor thought that it was a mild cold causing a cough and his reflux to flair up along with whatever is causing him swallowing problems. A week went by and the cough was getting much worse and he was coughing round the clock and turning purple while he was coughing but still no other symptoms. He was a little irritable and just wanted mommy but he was still acting pretty good. I called the doctor though because he wasn't able to sleep he was coughing so much. She said to go ahead and bring him back in. That was last monday. They decided to check for pertussis just to make sure and started him on the antibiotics to treat the pertussis in case he had it because it takes several days for the tests results to come back. It was late monday and we decided to take the boys home, get dinner and put them to bed.
Michael had tuesday off so we had planned on putting Jackson on the bus then going to the hospital for the pertussis test. Jackson missed the bus so we had to take him to school. We got back and ate some breakfast. We where about to head to the children's hospital for the test but I couldn't find my wallet that had the insurance cards in it. We looked and looked everywhere and we couldn't find it. I've been only getting about 5 hours of broken sleep a night for several weeks now that I've been loosing my mind and forgetting so many things. There wasn't enough time to go get the test and be back before Jackson got off the bus so we waited tell he got home. We ate some lunch and then headed to the hospital. Jackson fell asleep on the way there so Michael stayed in the care with him while I took Noah in. The did the test(sticking 2 swabs all the way up his nose). That day Noah started getting much worse running a fever, coughing more, congested, irritable. I also started getting sick that day.
Thursday I got really sick. Sicker then I've been in a very long time. I went to the doctor and she started me on some antibiotics. but I was just really sick. Friday morning I just didn't think I could take it. Noah was really sick and wanting to be held, I was really sick and just wanted to go to bed, and Jackson had so much energy and just wanted to play. Friday afternoon the doctor called and confirmed that it was pertussis and she called in a prescription for Jackson. The rule is everyone who has had contact with Noah while he's been sick has to have antibiotics. Saturday Noah and I continued to get worse. He stopped eating. We took him to the hospital saturday and found out he has double ear infection on top of the pertussis and that was why he wasn't eating. They started him on a new antibiotic to treat the ear infection. Jackson has started coughing and acting like he might be coming down with it but still feeling ok. Today, Sunday, I'm still running a fever and very sick(6 days of fever). Noah is misserable with coughing and ear pain but still trying to be a happy little baby. Jackson is coughing more and more. The way Jackson gets sick I'm praying that we started the antibiotics soon enough that we can avoid this going full blown for him. If he gets as sick as I am we're in a lot of trouble. I'm also praying that I get better really soon so I can take care of Jackson and Noah. I feel like this will be around a long time and we're in for weeks of coughing and I'm already so tired of being sick. 6 days of fever is long enough. I just wish there was something I could do to help Noah too. the poor thing has got to be sick of coughing already.
| | |
| Jackson has been to see 2 new doctors recently. I really liked both of them and am hopeful that they will be of help with Jackson. The first one we probably won't see for often but the second one we go back in just 10 days.
Jackson saw a developmental pediatrician a couple weeks ago. We've thought about him seeing one since he was a baby we just kept putting it off thinking we didn't need it because Jackson would catch up developmentally. Jackson as always had developmental regressions but he's always continued to progress. The past 8 months or so the regressions have been coming more and more often. Although he still continues to regain what he looses he's still loosing more often so although he's continuing to progress it's not like it was before. With that and other "red flags" we decided it was time to bring him to this doctor. The doctor came highly recommended from Jackson's regular doctor, his speech therapist and other parents. I can see why they all recommended him he was wonderful. After meeting with him he has taken great interest in Jackson and wants to help any way he can. He also is puzzled as to what is causing all of Jackson's vast symptoms. But he does he feel that Jackson has an Autism spectrum disorder. He was diagnosed high functioning PDD-NOS with anxiety, which mean pervasive developmental disorder not otherwise specified. His symptoms,(echolalia, perseveration, anxiety, developmental problems, etc.) meet the guidelines for a disorder just not classic Autism. We've known this was probably true for sometime. We started becoming more apparent as Jackson's speech was developing more and more. His speech is getting better and better all the time. He's come so far from where he was just a year and half ago when he was barely talking. But a lot of his speech is still just echoing what he's heard. Like certain phrases that we say he'll repeat. He does repeat them at the right times when they make since but he just repeats them with no spontaneous phrasing of his own. He also perseverates a lot in speech and other things. In speech he repeats the same thing over and over again in a row. For instance of both of these if you ask Jackson "do you want to build a tower" he will respond with "build tower build tower build tower build tower" which means yes I do but he can't say that. This is getting a lot better recently and he's having a lot more spontaneous language and coming up with his sentences on his own. We still don't really know why he continues to have regressions in the way he does. The diagnosis really doesn't change anything for us. He's still the same before and after. It just will be on his records which allow better therapy and things for him.
The second doctor we saw was a new genetics doctor. This is the 3rd one Jackson has seen. (one in utah, one missouri and now this one thats in Kansas). I haven't talked much about this because there are so many unanswered questions that I want to know and its difficult to talk about when you still have so many questions. But I've realized the more we look, the more answers we get the more questions there are. We just don't know so much and that will probably always be. But the "what ifs" are hard to deal with. The main reason why we went to this doctor his because he's one of the only doctors in the area who have treated mitochondrial disorders. As time goes on, more things happen to Jackson, the more people and doctors who see him it just keeps coming that no one knows really whats going on and that most likely it is a mitochondrial disease that is the big thing and causing everything else.
Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.
Mitochondrial diseases or Mito for short are very complex, very difficult to diagnose and there is no cure. There is some treatment by going on a "mito cocktail" which is a lot of supplements and other things that can help maintain things and keep from having any progression of the disease. Mito diseases are also completely unpredictable. You never know what the future holds or the progression of the disease. There is no way to predict the course of mitochondrial diseases. They might progress quickly or slowly, even over decades. The disease might also appear stable for years. mito diseases range from very mild to fatal.
The doctor we saw yesterday said if you put everything that Jackson has in a pile and look at the thing that matches up the best is mito. Especially when you take in my health history as well. We all suspect that we both have mito. This is hard diagnosis to get to though. there just isn't one test or way of finding out. Many patients it takes many many months sometimes years to diagnose. They often say mito disease is thick and clear as mud. But it is very rapidly developing field and they are learning more and more every day.
So we're in the process of truly being diagnosed with mito. Right now this doctor is trying to find and test for all other disorders first. Jackson has been tested for a lot. They ran blood tests this week for a really rare genetic disorder he might have. But these other small disorders that we're testing for really only explain one or two symptoms so if he does have them he would have multiple rare genetic disorders. The next step is to test the mitochondrial DNA in a blood test. We'll talk more about that at Jackson's next appointment next week.
| | |
|
