This week has proven to be a little stressful. I think I'm handling it well though. Let's start with the broken stuff:
My hood popping cable (I have no idea if there's a technical term but that's what I'm calling it) is broken. We figured this out by needing to jump start my husbands pick-up because the battery is dead. (mind you, he just replaced the shifter forks in the tranny in this truck that sat for the last year due to being broken down)
Our water pipe to our toilet started leaking due to a break near the shut off valve. Luckily the leak was after the valve so we were able to turn it off until my husband was able to fix it.
Then our dishwasher died, it's been on the brink of destruction for awhile now but we were trying to milk it for as long as possible.
My husbands daily driver truck has been having issues with shifting between first and second gear and yesterday morning it decided get stuck in neutral while he was trying to get on the ramp to the highway to work.
Now onto the children:
Since we brought the girls home from Milton Hershey School they have been a challenge. They tend to disregard the rules, ignore the consequences of their actions and push limits to the end. I know that some rebellion is to be expected and that they have had to adjust to a lot of new things but I feel as though all these new things are good things. Things they should be thankful for and cherish (although I know they are too young to understand what "good" is). I feel as though I'm beating a dead horse though. My youngest daughter is starting to really act out. She's becoming physical now and physical with her sister (which isn't ok) near her brother which is really not OK with me. Today she was fighting with someone at the bus stop. She's grounded for a month from her actions all week. I feel like I'm fighting a losing battle right now. They won't keep their rooms clean and I'm not talking spotless, I'm talking mountainous piles of clean clothes, blankets, pillows, etc on the floor. Enough to break your leg if you weren't careful.
I know things take time and these poor kids have been through the mill, but everything I have done for them has been for their best interest. I have lost my temper with them more times than I'd like too and yelling at them is defeating everything I have been working on with them. I realize that with the addition of another child there was going to be some animosity but it's not directed where I thought it would be.
My schooling:
I'm struggling, I'm not making enough time to study. When I do have time to study, I would rather sleep because I'm exhausted! I don't learn well on my own unless it's something that interests me and I'm doing horrible with the exam portions too. I'm going to hang tight though and do my best until December. Then I may take some time off. I'm worried this will mess up my financial aid but something has got to give.
Breastfeeding (err-bottlefeeding breastmilk)
I'm over pumping, I can't keep up with the demand of having to pump every three hours plus the time it takes to feed Rowan every three hours. Between feeding, pumping and washing pump parts I can't get anything done. I have a stash of breastmilk in the freezer and have been supplimenting with formula so I will give Rowan breastmilk as long as I can. I will only pump now until the supply runs out.
Rowan:
He's adorable! I love him to pieces. But I'm afraid of his next phases/trials with EB. I look at his adorable face and I just ask myself why. We have been doing some trials of having his hands and feet unbandaged. His hands are doing extremely well. There is no webbing and the skin is in tact. His feet however are starting to break down again. I can see his heel (the one that has constantly given us issues) is getting agitated and his other ankle is starting to blister as well so the bandages will go back on tomorrow. I'm also concerned with his penis. I believe there is a blister on the healing skin from his circumcision. Although I can't be sure. Sometimes I'm sure it's a blister and other times I'm not so sure. I don't want to leave it alone if it is (because it will grow) but at the same time I don't want to mess with his penis for nothing. Ugh!!! It's so frustrating!
Mom and dad: (As in my husband and I):
We are doing good. We are stressed as life is constantly challenging us with new things and pushing us harder. I'm sure there is a lesson in all of this but I can't even begin to see it. Maybe I don't want to or maybe I just don't have the clarity but hopefully someday it will make sense. We are holding out for some positive news in the future that will hopefully relieve some stress but for now we sit back and enjoy the ride even if it's too bumpy to enjoy.
Friday, September 14, 2012
Sunday, September 9, 2012
Biopsy results and updates.
So Rowan's biopsy results came back inconclusive. It seems as though his biopsy may not have been done correctly. It's sad, because he will wear his scars for the rest of his life for a test that wasn't able to determine his type. I have been told by other "EBers" (those that are involved with, experience it or have children with it) that it is common for the results to come back un-determined but it doesn't make it less frustrating.
To know the type would give us an idea of what to expect but since EB is so varying, you can't really rely on the type anyway. So regardless of knowing what type he has, it's still just a waiting game to see if his skin remains the same, gets worse or gets better.
We hope and pray for things to continue on the path it's been. Things have been good, less nerve racking and less time consuming. Our feeding ritual is a pain. I pump and feed, trying to stay ahead so that in a month of two I can give up pumping altogether. It's time consuming and frustrating when I don't feel like I'm not supplying enough and I'm sore.
Today I tried to actually breastfeed him (again), he latched really well to the one side and nursed for a little and then fell asleep. When he woke up again I tried the other side but it was a no-go. I'm not sure that he will ever nurse exclusively (nor do we know if his mouth will handle it either) but I will keep "testing" the waters. It would be so much nicer if I didn't have to continue this routine.
We started to supplement formula one feeding a day. I'm hoping this may give him a boost in his weight since he only gained an ounce in the last 3 weeks and give me a break too.
Rowan's blisters and wounds have all healed minus superficial wounds he gives himself when he's unbandaged or from being handled more frequently. He gave himself a blood blister the other day on the heel during bath time. It was the first blood blister I have ever had to pop, but I did it! It is healing well. I continue to be excited for fast healing.
His hands look ten times better too. We unbandaged them last night (they were bandaged due to skin growing between his fingers that appeared to be webbing) and they looked "normal" so we are trying the unbandaged hands again. His feet we wrap to avoid trauma during kicking and to protect his new skin that is still "growing". I hope to find a way to have them out in the near future as well. Maybe some slippers or cushioned socks!?
We should soon be having a private duty nurse to come a few days a week to help me with bathing and bandaging him during the day so that our evenings can be a little less hectic with trying to do everything after my husband gets home from work. I sometimes feel foolish for needing "help" but also realize it's not a bad thing and it will make things a little less stressful.
We go to Hershey at the end of the month to see his dermatologist again. She wants to see how he's doing and perform the genetic testing to try and determine his type of EB from that. I hope to get positive results from that and more answers to our questions.
It's hard to imagine what may be in his mobile phases to come but I pray that his skin is tough and can withstand rolling, crawling, and eventually walking.
To know the type would give us an idea of what to expect but since EB is so varying, you can't really rely on the type anyway. So regardless of knowing what type he has, it's still just a waiting game to see if his skin remains the same, gets worse or gets better.
We hope and pray for things to continue on the path it's been. Things have been good, less nerve racking and less time consuming. Our feeding ritual is a pain. I pump and feed, trying to stay ahead so that in a month of two I can give up pumping altogether. It's time consuming and frustrating when I don't feel like I'm not supplying enough and I'm sore.
Today I tried to actually breastfeed him (again), he latched really well to the one side and nursed for a little and then fell asleep. When he woke up again I tried the other side but it was a no-go. I'm not sure that he will ever nurse exclusively (nor do we know if his mouth will handle it either) but I will keep "testing" the waters. It would be so much nicer if I didn't have to continue this routine.
We started to supplement formula one feeding a day. I'm hoping this may give him a boost in his weight since he only gained an ounce in the last 3 weeks and give me a break too.
Rowan's blisters and wounds have all healed minus superficial wounds he gives himself when he's unbandaged or from being handled more frequently. He gave himself a blood blister the other day on the heel during bath time. It was the first blood blister I have ever had to pop, but I did it! It is healing well. I continue to be excited for fast healing.
His hands look ten times better too. We unbandaged them last night (they were bandaged due to skin growing between his fingers that appeared to be webbing) and they looked "normal" so we are trying the unbandaged hands again. His feet we wrap to avoid trauma during kicking and to protect his new skin that is still "growing". I hope to find a way to have them out in the near future as well. Maybe some slippers or cushioned socks!?
We should soon be having a private duty nurse to come a few days a week to help me with bathing and bandaging him during the day so that our evenings can be a little less hectic with trying to do everything after my husband gets home from work. I sometimes feel foolish for needing "help" but also realize it's not a bad thing and it will make things a little less stressful.
We go to Hershey at the end of the month to see his dermatologist again. She wants to see how he's doing and perform the genetic testing to try and determine his type of EB from that. I hope to get positive results from that and more answers to our questions.
It's hard to imagine what may be in his mobile phases to come but I pray that his skin is tough and can withstand rolling, crawling, and eventually walking.
Answers.....to many questions
I have had to answer many questions since Rowan was born. So I have compiled a list of questions and answers so that maybe if you have a question there is an answer on here.
Q: Is it contagious?
A: No, EB is genetic and cannot be spread to others through contact.
Q: Will he grow out of it?
A: No, EB is for life. It doesn't go away.
Q: Will it get better?
A. Some cases get better as they get older, but they can also get worse. Every stage in life is different. When he starts to crawl we will have to wrap him to protect him and when he starts to walk we will see if his feet get more tough or break down.
Q: Are there any medicines for it?
A: No there aren't currently any medications to help with EB itself, but many people with EB must take meds for pain, use antibiotic creams and take antibiotics to fight infections. Their bodies can also become immune to antibiotics if over used too much so most care is focused in preventing infections in the wounds.
Q: Is there any treatment for it?
A: There is currently research going on to treat EB. The most severe cases can undergo a Bone Marrow transplant which introduces new genes into the body that help teach the body to make the missing connective tissue. The procedure is tricky though, as the recipient must have a match, and be healthy enough (which the more severe cases struggle with staying healthy due to sepsis and other infections) to undergo immune suppresent drugs so the body does not reject the BMT.
** Please note that I am not a professional- just a mom trying to spread the word and wisdom I have gained regarding EB.**
Q: Is it contagious?
A: No, EB is genetic and cannot be spread to others through contact.
Q: Will he grow out of it?
A: No, EB is for life. It doesn't go away.
Q: Will it get better?
A. Some cases get better as they get older, but they can also get worse. Every stage in life is different. When he starts to crawl we will have to wrap him to protect him and when he starts to walk we will see if his feet get more tough or break down.
Q: Are there any medicines for it?
A: No there aren't currently any medications to help with EB itself, but many people with EB must take meds for pain, use antibiotic creams and take antibiotics to fight infections. Their bodies can also become immune to antibiotics if over used too much so most care is focused in preventing infections in the wounds.
Q: Is there any treatment for it?
A: There is currently research going on to treat EB. The most severe cases can undergo a Bone Marrow transplant which introduces new genes into the body that help teach the body to make the missing connective tissue. The procedure is tricky though, as the recipient must have a match, and be healthy enough (which the more severe cases struggle with staying healthy due to sepsis and other infections) to undergo immune suppresent drugs so the body does not reject the BMT.
** Please note that I am not a professional- just a mom trying to spread the word and wisdom I have gained regarding EB.**
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