I am feeling a bit "couped up" this weekend. I am glad I had such a great time in Vegas b/c the next week I knew I would be housebound. I tell ya, that is one of the worse things about life with 2 special needs kids. I have never been the type to stay at home but I have no choice when the weather is warm and I have no nursing. The boys just DON'T like the heat at all. Plus I don't even know how I would get the two of them out of the house by myself and do something enjoyable. I would definetly need some ativan for myself to do it. LOL. These guys are getting big and so are their wheelchairs and it is just alot of work. So again, I am soooo grateful to have nursing b/c I just don't know how I would do it. It surely takes a village to rasie these boys.
Not to mention, Avery has been struggling respiratory wise for some time. I guess he struggled while I was away but everyone kept it under wraps (thankfully). He has been requiring alot of O2 at night, bipap and tons of suctioning. So I was nervous going into the weekend by myself b/c frankly it is alot of work. Luckily, I have managed him pretty well and he is stable. Although he is certainly spoiled when I am here. Little man would be perfectly happy if I held him the entire weekend, meanwhile I have Isaiah trying to pull out all his tubes, UGH. It can be very very busy here. I am grateful to have nursing tomorrow, Phewww.
I am also excited to say that Ness and I are going to Canada on Thurs. You know my friend that I often ask for prayers for her girls, well we are finally going to meet the girls :) I am so happy b/c I have known her a long time. She came to visit us two years ago and it has just been so crazy between our 4 special needs kids and hospitals that I am just now getting the chance to visit. We are hoping all four kids can behave for 3 days so we can enjoy our visit. I mean that is not alot of time to ask for in a yr. right? Also, I will be visiting another mito mom and her family that I met at a mito conference a couple of years ago. Janessa is sooo excited to leave the country, lol. It is going to be a great mommy/daughter trip. So we could use some positive thoughts that all kids behave. Thanks
Sunday, May 30, 2010
Wednesday, May 26, 2010
I'm Back
I had a great time in Vegas. Four days was plenty but I sure was eager to get back home. Unfortunately the weather was not as nice as it was here but I still managed to lay by the pool most days which was very relaxing.
All was quiet at home while mommy was gone. Phewwww. No glitches other than the typicals. I feel bad that I was able to go away and poor Rick had to come home early. Well we have a river rafting trip planned this summer so it will be another getaway for him.
Avery seems to be doing well with the new med and has been on 7cc of j feeds daily without any issues. I think we will not push things and just hang out there for a bit. I am just happy that he is tolerating something. We want to protect his liver as much as possible.
Isaiah has not had a bad cycle before I left and one minor one. He is going to be the Big 8 next weekend. I cannot believe it. He is such a good boy. His teeth have already grown in too.
I think I forgot to mention that we were accepted to receive free family photos through the http://www.littlestherosproject.org/ Which means in a couple of weeks we will get the most beautiful natural family photos in our home environment for FREE. I cannot wait. They do such beautiful pictures.
Thats all for now. Hopefully all continues to stay quiet around here, afterall it is summertime :)
All was quiet at home while mommy was gone. Phewwww. No glitches other than the typicals. I feel bad that I was able to go away and poor Rick had to come home early. Well we have a river rafting trip planned this summer so it will be another getaway for him.
Avery seems to be doing well with the new med and has been on 7cc of j feeds daily without any issues. I think we will not push things and just hang out there for a bit. I am just happy that he is tolerating something. We want to protect his liver as much as possible.
Isaiah has not had a bad cycle before I left and one minor one. He is going to be the Big 8 next weekend. I cannot believe it. He is such a good boy. His teeth have already grown in too.
I think I forgot to mention that we were accepted to receive free family photos through the http://www.littlestherosproject.org/ Which means in a couple of weeks we will get the most beautiful natural family photos in our home environment for FREE. I cannot wait. They do such beautiful pictures.
Thats all for now. Hopefully all continues to stay quiet around here, afterall it is summertime :)
Monday, May 17, 2010
It's my turn to go away : ) I am leaving on friday to go to Vegas with some friends. I'm excited but always nervous that Avery will decide to get sick. There is so much planning involved in me going away. Luckily we have alot of nursing coverage and they know him so well. He is usually good to me so hopefully it will continue to be.
We have started him on a new med. which should make him sleepy but of course in Avery fashion it is causing insomnia. He has been up every night from 3am til the monring. I tell ya it is the worse time b/c that is when I really need to sleep and he is wide awake crying. I am hoping that if we tweek the med times that we can get him sleeping more. The good thing it that we have gotten his feeds to almost 7cc p/hr with no issues. So it seems that the med is working for what it should be. Although sleep is pretty important too....
Isaiah has been in a cycle the last couple of days :( It has been a bad one for him. I am hoping that he got it out of the way and will be okay while I am gone.
I have a surgery consult when I get back :( Although I have been in alot of pain that seems to be getting worse. I think I am more nervous about not being able to lift more than anything. It is nearly impossible to go without lifting the boys or at my job. So hopefully the recovery is short.
But for now I am looking for to getting away with the girls, sitting by the pool, sleeping late and leaving stress behind for a bit.
We have started him on a new med. which should make him sleepy but of course in Avery fashion it is causing insomnia. He has been up every night from 3am til the monring. I tell ya it is the worse time b/c that is when I really need to sleep and he is wide awake crying. I am hoping that if we tweek the med times that we can get him sleeping more. The good thing it that we have gotten his feeds to almost 7cc p/hr with no issues. So it seems that the med is working for what it should be. Although sleep is pretty important too....
Isaiah has been in a cycle the last couple of days :( It has been a bad one for him. I am hoping that he got it out of the way and will be okay while I am gone.
I have a surgery consult when I get back :( Although I have been in alot of pain that seems to be getting worse. I think I am more nervous about not being able to lift more than anything. It is nearly impossible to go without lifting the boys or at my job. So hopefully the recovery is short.
But for now I am looking for to getting away with the girls, sitting by the pool, sleeping late and leaving stress behind for a bit.
Thursday, May 13, 2010
Finally!!!
Introducing Mr. Handsome Toothless Isaiah. How cute :)
What a cutie, I cannot help look at him and smile at how cute he looks and he is sooo proud of his new grin.
Avery has being hanging in there, as long as we are aggressive respiratory wise then he is fine. I am just nervous because I am going away next week. Just hoping in hangs in there until I get back :) Would be nice. Although he is usually good to me and my time away. On that note, turns out I have a hernia and will likely need surgery in a few wks. We all know I am a crazy woman and it may have been from all the crunches, lifting the boys or lifting my equipment at work. Who knows, just hating the fact of being laid up for even a couple of days. It is not an option in my life. But what are ya gonna do.
Monday, May 10, 2010
Happy Mother's Day to all you wonderful mommies!!!!!!!!!
I had a great mommies day, spoiled as usual by Rick.
Rick had his basketball banquet on sat. It was a great night. I am always so impressed with what a great public speaker he is. It was just a nice night overall.
Avery has been struggling with respiratory issues and on/off fevers. He had a fever of 102 on sat. night which is a blood culture mark but he did not get another one until tonight. He had a low grade fever but we gave him tylenol before it got any higher. He has been on bipap every night which has also made a huge difference for him. I think as long as he gets enough chest pt, suctioning and nebs then he will be ok. Only time will tell.
Isaiah has been doing great lately, his cycles seem to be a bit better. We are anxiously awaiting his two front teeth to fall out bc they poor kid is starting to look luck "Bucky the Beaver". With normal kids their teeth fall out sooner b/c they are constantly playing with them. But b/c he cannot play with his own teeth, they rely on adults to wiggle them which doesn't always happen. Maybe by his 8th birthday next month.
Here are a few pictures of the banquet
I had a great mommies day, spoiled as usual by Rick.
Rick had his basketball banquet on sat. It was a great night. I am always so impressed with what a great public speaker he is. It was just a nice night overall.
Avery has been struggling with respiratory issues and on/off fevers. He had a fever of 102 on sat. night which is a blood culture mark but he did not get another one until tonight. He had a low grade fever but we gave him tylenol before it got any higher. He has been on bipap every night which has also made a huge difference for him. I think as long as he gets enough chest pt, suctioning and nebs then he will be ok. Only time will tell.
Isaiah has been doing great lately, his cycles seem to be a bit better. We are anxiously awaiting his two front teeth to fall out bc they poor kid is starting to look luck "Bucky the Beaver". With normal kids their teeth fall out sooner b/c they are constantly playing with them. But b/c he cannot play with his own teeth, they rely on adults to wiggle them which doesn't always happen. Maybe by his 8th birthday next month.
Here are a few pictures of the banquet
Thursday, May 6, 2010
HAPPY NURSES DAY!!!!!
I would like to first thank ALL the wonderful nurses I currently have and had and encountered through my kids. You guys are like family to me. Thank you all for what you do, we are so grateful.
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We had a great day on Sunday. Got to enjoy a little of Avery's birthday and then one of my nurse offered to work so I could catch opening day of softball. Thank you Lisa!!!!!
The last couple of days Avery has been struggling a bit. He spent alot of time vomitting and off color yesterday, not sure if it was due to secretions or stomach stuff. Hoping his home IVIG yesterday will make a difference. Tonight he seems to have junk in his left lobe and is now on bipap. I am hoping to be able to nip this in the bud with lots of chest pt and suctioning and support (O2 & bipap).
Today we saw the motility dr. I have to say that I was not optimistic at all about this appt. but I was pleasantly surprised!!!!! He was well prepared and so informative and most of all encouraging that we have options.
Basically we have surmized that Avery's intolerance of feeds are more of a "sensation of pain" rather than actually intolerance due to distension (swelling of the belly) this is a good thing. He has actually had success with antidepressants such as celexa and zoloft in these case. I know, not only is my 4 yr. old addicted to methadone and valium but now he is on zoloftt. But hey, whatever works without being invasive is my motto at this point. We are also going to try a drug that he had a previous reaction to that is on his "allergy" list b/c we are not really sure it was a true allergy b/c how he reacted is not a side effect of this med. So I am willing to try it under nursing supervision. I am actually ok with it. We have another med. to try if that doesn't work. BUT....
If these fail then the last option is ileostomy, this is what he is suggesting. This is not something I am willing to do at all. As I have said I will not do anything invasive with my boys especially if it is NOT proven to work for them. It is basically like having a colostomy but higher up. I mean it is not even the procedure but my visions of Isaiah pulling a poop bag off Avery and having fun with it. UH NO THANKS!!!! I am ALL set. I just don't think the benefits outweight the risks in our situation.
So I just really hope and pray that these meds work to get Avery to at least 15-20cc/hr. of j feeds so we can protect his liver as much as possible and his line as well. One step at a time right?
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We had a great day on Sunday. Got to enjoy a little of Avery's birthday and then one of my nurse offered to work so I could catch opening day of softball. Thank you Lisa!!!!!
The last couple of days Avery has been struggling a bit. He spent alot of time vomitting and off color yesterday, not sure if it was due to secretions or stomach stuff. Hoping his home IVIG yesterday will make a difference. Tonight he seems to have junk in his left lobe and is now on bipap. I am hoping to be able to nip this in the bud with lots of chest pt and suctioning and support (O2 & bipap).
Today we saw the motility dr. I have to say that I was not optimistic at all about this appt. but I was pleasantly surprised!!!!! He was well prepared and so informative and most of all encouraging that we have options.
Basically we have surmized that Avery's intolerance of feeds are more of a "sensation of pain" rather than actually intolerance due to distension (swelling of the belly) this is a good thing. He has actually had success with antidepressants such as celexa and zoloft in these case. I know, not only is my 4 yr. old addicted to methadone and valium but now he is on zoloftt. But hey, whatever works without being invasive is my motto at this point. We are also going to try a drug that he had a previous reaction to that is on his "allergy" list b/c we are not really sure it was a true allergy b/c how he reacted is not a side effect of this med. So I am willing to try it under nursing supervision. I am actually ok with it. We have another med. to try if that doesn't work. BUT....
If these fail then the last option is ileostomy, this is what he is suggesting. This is not something I am willing to do at all. As I have said I will not do anything invasive with my boys especially if it is NOT proven to work for them. It is basically like having a colostomy but higher up. I mean it is not even the procedure but my visions of Isaiah pulling a poop bag off Avery and having fun with it. UH NO THANKS!!!! I am ALL set. I just don't think the benefits outweight the risks in our situation.
So I just really hope and pray that these meds work to get Avery to at least 15-20cc/hr. of j feeds so we can protect his liver as much as possible and his line as well. One step at a time right?
Sunday, May 2, 2010
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