No parent should ever.....

have to obstain from holding their baby because of the damage or pain it could do to their little body.

have their newborn taken away for testing, transportation to another hospital or bandaging.

have to spend more than a few days in the hospital after their child is born and rarely, if ever, go back to a hospital again after.

have to own needles, surgical scissors, gauze, and other medical supplies.

have to give their child a bath in a bleach solution to kill bad bacteria on their child's skin.

have to pop blisters, dress wounds and pray like hell that their child's skin will hold up another day.

have to be stared at or questioned as to whether or not their child is contagious or abused.

have to teach their family, doctors, nurses, hospitals, dentist, optometrist, schools, and everybody they meet on how to care for their child.

have to be a nurse and a mom.


This is for THOSE parents, I applaud you! You are all so strong, faithful and inspirational even when you feel like you are at the bottom of your rope. Be proud! (Oh and they're humble too.)

Every time my son, Rowan. has an issue (as minor as they are), I am reminded of the trials that you all go through on a daily basis. The sacrifices you all make to ensure the best for your Butterfly(ies) is unimaginable to some. For those of us who have an idea, we are in awe of your strength.

Weighty Wednesday...Errr Thursday.

So I'm a week and one day late on this blog that I promised everybody. Better late than never....right!?

I started to make changes for the better last week, but nothing that I thought was significant to write about. This week however I have started making bigger, better changes. I signed up an account with FitDay.com a site that allows you to track your calorie intake, your exercising and your weight. It does require some work on your part but the thing I like most is the fact that I could put in my weight, my goal weight and the length of time that I wanted to lose the weight and it told me how many pounds a week I would have to lose in order to meet my goal. It made it seem so simple! Another great part of the site is that it's free! (with ads of course but you can upgrade to a paid version for no ads). Oh and "Bringing in groceries, climbing stairs and walking" are all exercise options. Oh yeah! I got this!!

So here's what I have done so far. I weighed myself on Monday morning, before eating or drinking anything. All week I have cut back on the "munching" and have made a conscience choice to eat less during meals and way less junk. (Which is way hard for me because the more stressed and tired I am the more I crave my chocolate!) I have been eating a salad for lunch and a salad before dinner. I have also been watching my carbs but not so much that I feel like I'm missing out. I have been doing little exercises throughout the day, dancing with my daughter, doing push ups while Rowan is having tummy time, leg lifts while I brush my teeth, jumping jacks, walking around K-mart (ok, I know that's a stretch but I did it.) and doing my Zumba on the Wii (although I really need/want to do it more)

So here's the kicker! I weighed myself this morning. Even though I really wanted to wait until Monday but I just had to, I was curious. I thought the scale was lying to me when I stepped on it. I have already lost 4 lbs! In four days! I'm not starving myself, I'm just being aware of what I put in my mouth. I know this big weight loss won't continue for long but if it continues till February 14, I will be stoked!

"What's v-day have to do with this?" You may ask. I asked my husband to give me a challenge because challenges are my biggest motivator. He challenged me to lose 2 lbs a week until V-day. I added to his challenge since he couldn't think of a reward for me if I met his challenge and told him if I lost that plus ten more pounds then he had to start working out with me twice a week to keep me motivated and to help him get into better shape. So there you have it. A challenge!

Of course today I had to reward myself with Hershey kisses and a Cadbury egg. So now I have to be super conscienctious.

Wish me luck!

'Tis the Season

To be thankful, grateful and humble.

We are all of the above!

We are...
Thankful for the opportunities that have been given to us, a new job for my husband (with less pay but more experience in the direction he wants to take his new career).

Thankful for two beautiful girls who are so full of love and stubborn as can be. Which means they will be successful in the future.

Thankful for a little boy who has shed new light into our lives and opened our hearts to many others that we may have never known. Some very special families out there, doing wonderfully good deeds!

Thankful for a home, food, and mostly LOVE!

We are...
Grateful for caring people in our community. Those who gave in our time of need and uncertainty.

Grateful for friends who took time out of their busy lives to set up fundraisers and offered their assistance.

Grateful for our family for taking care of our girls while we were in the hospital, visiting and donating supplies and money to help with Rowan's care.

Grateful for our parents for ALL that they have done. From visiting us in Philadelphia, to helping us purchase meals down there, giving us financial, moral, and unconditional support. For hosting a wonderful dinner and auction to raise funds for our sons ongoing medical expenses and traveling costs associated with tests and care.

We are...
Humbled by strangers support.

Humbled by the donations recieved.

Humbled by the love that has been shared for our son and family.

This season, we truly are THANKFUL for all that we have and those that we share our lives with and ALL that we have.

Happy Holidays!

Challenges

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.

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.

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.**

A walk through of a day in CHOP...

I know this is a little late..but there are things I'd like to share. So many people have questions and I figured if I blog, then they will get their answers. So pardon my tardiness but I will get the entire story out, eventually.

A day in our lives at CHOP consisted something like this.

6-7 am- Wake up, Derek would go find towels/ wash cloths so we could shower. He'd go shower and I'd pump. (One morning Derek went to do the laundry while I cleaned up etc)

7-8 am- We'd pack up all our bags, seperate the clean and dirty clothes, load everything on our "hobo cart" (a stroller/cart thing that we found in the parking garage the night we arrived at CHOP that we used to tote all our belongings around) and take the cart to Rowan's NICU room. When we got to the room we'd put on a gown and gloves, push the cart into his room and then help feed him, change him, hold him etc.

8-9 am- the Attending Physician would come around and get information/updates from the nurses, speak to us about any upcoming tests or returning test results, procedures and ask us if we had any questions. Then he'd give us a run-down of the discharge plan.

9-11 am- I'd pump again. We'd request a room for the night. We'd have breakfast down at the cafeteria and buy extra things for snacks/lunch. (We never ate lunch down there- actually most of time we didn't eat anything for lunch at all)

11-5- We'd visit Rowan, do research on the computer, ask lots of questions, meet with the dermatologist, the lactation consultant, I'd pump, we'd feed Rowan, get instruction on how to bandage, do the actual bandages. By Tuesday we started doing the bandages without the nurse because they were pre-occupied with another baby and we got impatient. Then we'd get our sleep room assignment for the evening. We'd sometimes go take a nap or just go relax for awhile. I was retaining lots of fluid in my legs so I had to get them up as often as possible. The fluid actually started to seep out of my legs. :-/

5 pm- throughout the night- We'd spend as much time in the NICU with Rowan, I'd pump every 3 hours (except one 6 hour break during the middle of the night) and sleep, Derek would sleep and occasionally take the milk to the NICU for Rowan. I usually went though because then I'd get to feed him or check up on him and watch him sleep.

The next morning the entire process would start again. By the third night we had a routine, I would scarf up towels before we went to bed and extra pillows so I could prop up my feet throughout the night. We even watched TV the one night. :-)

I think the most scary part of being at the hospital was the fact of not knowing what the next step would be and whether or not we would get a room for the night and would have to spend big money at a hotel and not be right down the hall from our son. The other scary part was that after a few days the routine became almost like second nature.

The day we were told that we'd be discharged was sort of surreal. We were so excited but also scared as we weren't going to have doctors and nurses a hallway away anymore.