Monday Morning Update

Jackson and I slept very well last night. I was able to change his dressing around 10PM and then off to dreamland we went :)

We woke up at 6:30 to the plastic surgeon. He wanted to take a look at Jackson's finger. I felt so bad for Jackson just waking up and having to deal with his stupid finger. Luckily the plastics guy just looked at it and did not really mess with it too much. He left it open and told me that I could pack it when Dr. W arrived.

It has been so nice that the doctors and nurses here have let me take a very active role in Jackson's care. They realize that I deal with Jackson and his skin on a dialy basis and they just let me assist or even lead certain procedures. It makes me feel so mch more at ease knowing that everyone here is on our side. We did have a little trouble with someone that put an IV in but our nurse handled that situation for us.

We should be able to go home today. We are just waiting on the lab results to come back. We know that he has staph but staph can be sensitive to certian medications and not others. He is currently on Clindamyacin. Unfortunantly clinda tastes and smells like crap. Taking it orally would be a challenge at home. We are hoping the staph is sensitive to something like bactrim (which is an awesome grape flavor already- no extra $2.99 fee from Walgreens!).

We will need to follow up with Dr. W and plastics this week. Hopefully it heals perfectly and we will not land back in this place! I love Cardinal Glennon but I want my bed!!!!!!!

A Big Week for Jackson

This kid amazes me!


He has been a little behind in just about everything since about 2 months. Well this week he has decided to change all that!

1. He FINALLY has his first tooth- it is not all the way through yet but I can actually see it right under his gum. He is 10 months old!!!! All of my other kids had a full mouth by time they were 1! I have no idea why he is so late ??

2. He ate a whole "jar" of food last night. Feeding has been an issue with him ever since we started trying to feed him solids. I try every day, breakfast, lunch and dinner but the kid only wants those puff thingys. Finally last night he ate ground up sweet potatoes mixed with baby cereal!
3. He pulled himself ALL the way up and even cruised a little bit! He has been half pulling up for a while now but he stops when he gets to his knees, not anymore! YIKES...
4. He recognizes what "NO NO" means AND he knows how to do it back to me! When he was done eating last night he pushed the spoon away from me and shook his head back and forth. I could not believe he knew what he was doing so we kept doing it, and he kept shaking his head and pushing it away. Aww, My big boy!

5. We gave him his 4th haircut last week. 4 people. The rate that his hair grows is just INSANE. Jason and I joke that God gave him an extra hair gene since he was jipped on the skin gene.

Before the haircut-

And after the haircut. He looks like such a big boy now!!!!!



In the Photo Friday

Wordless Wednesday

EB AWARENESS WEEK

Thanks for the picture Courtney!

EB Awareness Week

Today is the first day of EB Awareness Week. I am trying to tell everyone I know about EB.

PLEASE if you have any questions you have been meaning to ask or maybe just thought of, please ask. I want YOU to know as much about it as I do.

No question is a stupid question and no question is too personal. I WANT to talk about it. Do you want to know how to pronounce it? Do you want to know what causes it? ANYTHING, JUST ASK!!!!

I think a lot of people in my life are afraid it will upset me but it doesn't. I makes me happy to talk about it.
EB is so rare and it is REALLY hard to get funding to find a cure. The doctors at Stanford University are trying everyday to find a cure for this devastating disorder but without awareness and funding that will never happen. Please help me help them today by learning something new about EB.

Sorry

I just can't blog lately and I am sorry for that. I do not know what the right words are right now. I am mourning the loss of a beutiful little butterfly, Bella. Her parents are doing a much better job than I am myself.

How is that even possible?

Well, I think they are in a much better place with their faith than I am.

Since Jackson was born I have been questioning my faith and my beliefs. I have been so damn angry and I hate myself for it. I know He has a plan for all of us but quite frankly I do not like this plan. I know it is not my place to dis-like any plan He has for us but dang it why? Why do all these little babies have to suffer? I understand the sin of the world and mankind having to pay, blah blah blah, but why? Why little babies? It just makes me so sad. As I type this I have tears streaming down my face. It is an occurrence that happens a lot more than I would like. I love my son and I am so very thankful that God has blessed my family with these amazing little children. I think God every day for my children. Sometimes I even ask him to give me some understanding. Someone told me the other day that it is not for me to understand. Ergh. I KNOW that BUT I WANT to, dang it.

Jackson is doing so well and everyday I just hug him a little tighter. After "attending" Bella's memorial service yesterday I realized I really need to get right with myself and my faith. The way that Tim, Ang and Ali understand God's plan for Bella is the way I want to understand God's plan for Jackson. Please say a little prayer for me because I have a lot of soul searching to do!

Blogging may be few and far between for a while but I promise I will try.
I hope to post Jackson's 5 month pictures soon. That's right, 5 MONTHS!!!! He is such a big boy!

I am so thankful today.

I was not yesterday. Yesterday I felt sorry for myself and for Jackson and all he has to go through. I was angry and depressed all day. I wanted nothing more to just crawl back into bed and not face the day or the blisters or the diaper changes that revealed my sons raw hiney. I just hated everything and even said out loud several time "I HATE EB!!!!!!!!!!" I really do hate it but what gives me the right to feel sorry for me???

Around 4 yesterday afternoon while I was lying on the couch feeling sorry for myself I decided that was it. I got up and told Jason "I guess I need to snap out of it and stop feeling so damn sorry for myself." He just smiled at me. He knew I was going to realize that eventually and just let me come to it on my own. Some days we just move on like normal and some days I need that slap!

Today I am so thankful for everything in my life. Not just the normal stuff like my husband, my kids, our health and our jobs. I am really truly thankful for things like the ability to hug and hold Jackson, my ability to dress him in normal clothing, put him in a car seat, and even just to feed him. I am just so thankful for the little things that we get to enjoy with Jackson. Even though EB really sucks no matter the type or the severity,at least we have some things to be thankful for. Do we have to be super careful? Yes, but at least WE CAN do some things. Some EB babies are covered from head to toe with bandages and they wake up and go to bed in pain. Hugs, clothes and food are all things those babies hope for.

Although Jackson's wounds make me sad everyday I just realized that I have to stop feeling sorry for me. Really how is feeling sorry for me going to do any good? How is it going to do Jackson any good? It's not. Not at all. Of course I can be sad for Jackson sometimes but not to the point where it is going to slow him down. From the looks of it, this kid is not going to take EB lying down. I am sure he will have his days where he screams "I HATE EB!" just like his mommy BUT I bet he laughs at himself when he is done. That is just who he is. I can tell already. I am so thankful for that!!!!!

A BIG thanks to  Courtney for helping me to realize that we have so much to be thankful for. Courtney is an awesome mother and I just pray that one day I have the same strength and faith that she does. The way she carries on her life with her amazing son Tripp is a true inspiration. To make a long story short, Tripp has junctional EB and has been having a rough time lately. Please say a prayer for Courtney, her husband Randy and Tripp. I know I do, everyday.

So Big!

My baby boy is growing like a weed!!!

A few things.....all about Peanut

I do not have much time today. I really should not even be here now but I need a break from this crazy project I am doing for work.

- Jackson is rolling over. He is rolling from his back to his belly. When he gets onto his belly he screams. He HATES being on his belly.

- Jackson is cutting teeth. Yuck. Last night was terrible and he was up every. single. hour. My new best friend is Hylands Teething Tablet! Thanks Angie!

- I am super happy to tell you all that we are going to Ohio in December. Jackson will be seen by a team of doctors that  know all about EB. Cincinnati Childrens EB clinic is one of very few EB clinics in the country. I have talked to a few people that have been already and they LOVE LOVE LOVE it. Often the parents know way more than any local doctor about EB. Even though Dr. W is amazing and takes very good care of my children, he asks me questions about EB and how to care for Jackson. EB is just SO RARE that there are not many people that know about it, much less specialize in it.
Now for the fun part- getting it all approved with our health insurance. We will be seeing several different specialists and each requires a separate co-pay. Hopefully since we are double covered we won't have to pay a penny. Going out of town in December is crazy enough!

- Speaking of EB being rare, an EB friend of ours is doing a fundraiser in order to raise money and awareness for EB. Head on over to Chris' Dunk Tank page and vote for an idea or submit an idea of your own! Chris will be doing whatever crazy dare wins in October during EB Awareness Week.

Wordless Wednesday

Welcome to Holland By Emily Perl Kingsley

Jason and I ran across this the other day when reading another EB parents blog. We both think that this is the best way to describe how we feel. It was written by Emily Perl Kingsley. Emily has been a writer for Sesame Street since 1970. She has a son with Down Syndrome. you can read more about her on her Wiki Page.

WELCOME TO HOLLAND- by Emily Perl Kingsley.


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......


When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.


After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."


"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."


But there's been a change in the flight plan. They've landed in Holland and there you must stay.


The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.


So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.


It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."


And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.


But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Peanut needs your help!

Jackson MUST dress as a Peanut for Halloween. I am having a hard time finding something cute.

I am not a fan of this at all.


and this one is okay, I guess, but I want something SUPER cute.



Do a little searching around for Peanut and comment with any good finds!

Please?!

Thanks!

In the photo Friday

This is not the best picture of me but here ya go! This is Jackson's favorite place to be, in the Sleepy Wrap. I have not been carrying him in it much since the car accident though. It hurts my shoulder so I have to put the one shoulder strap down under my arm, making the wrap less than "hands free". I have to hold my hand under his hiney to help support him but it is easier than fully holding him and he LOVES it. The boy falls asleep every time he is in it. The weather is starting to change here in the Lou so we were able to walk to the bus stop yesterday. Jackson just LOVED it!

Wordless Wednesday on Thursday

One Lucky Dude

Jackson is one really lucky dude. He has so many people in his life that just love him so much.

For starters he has an amazing set of siblings. When I see all my kids together I just smile. They make me so happy and I love them so much. The day that Nylin, Jace and Kara came to the hospital to see Jackson was so overwhelming for me. Seeing all four of my amazing kids together and seeing the love they share with each other was nothing short of perfect. Again, I knew in that moment that what Jason and I were doing was right. Jackson has completed our lives and seeing his brother and sisters with him that day reminded me of that.









such an excited big sister-



Jackson also has so many grandparents he is going to lose count.

Nana


Grandma Janice


Papa


Grandpa or Poppa


Grandma Margo





And most of all, he has parents that love him more than their own lives.

My birth story...finally!

Today’s post has been a long time coming. I know I have been silent since my 37 week post. Things have been hard. Really hard. I will get to all of that in due time. Right now I would like to focus on my birth story. At some point I will have the strength to post more about recent events but at this time I would like to post about one of the very best days of my entire life. Something happened to me that day. It was perfect. Of course the births of all of my children were amazing and perfect but there was something about May 18th 2010 that was more than perfect. It was amazing. I think my world was complete that day. My life was complete. I knew that what Jason and I were doing was right and what we were doing is what we meant to be doing. My family was complete. It is complete. I love my life.



I woke up feeling just like every day. Tired. The contractions were moving right along just like the last 4-5 days. They were there, they were strong but consistent, they were not. I called Jason several times to tell him that I was feeling like crap but I thought it was just pregnancy crap, not labor crap. I cannot tell you how many times I cursed my doctor for telling me that I would not make it to my next appt. I swear I wanted to give her a piece of my mind. My appointment at this point was less than 24 hours away. The clock was ticking in my head!


I had been monitoring my BP for the last week since we had a high reading at my last appointment so that day I decided to check before I showered. It was high. I took my shower and then took it again. It was still high. The machine I have at home is not always 100% reliable so I called Jason and told him I was heading to the store to have it checked again.

Once I arrived at the store I was greeted by several workers who I have come to know in my daily BP check trips. I talked for a few then I headed over the BP machine. It was high. I called the doc to give them the readings and then everything went SUPER FAST. I will the rest of this in timeline form to make it an easier read for you.

3:00- nurse at OB-GYN tells me to head to ER to be checked. I check the kids overnight bag to make sure everything is in there, check my hospital bag/suitcase for the one millionth time, JUST IN CASE….

At this point I was NOT thinking I was having a baby yet. I swear I wanted to stay home because I just knew I was going to miss the evening with the kids and be sent home babyless.

4:00 Jason is home and we head to ER to be checked. Contractions seem to be getting closer and stronger. I am crabbing the whole time about how I am going to get sent home and I am going to be one of those women that arrive and everything is fine, wasting everyone’s time.

5:00 We arrive at hospital after sitting in traffic due to an accident on the exit ramp. I almost pee my pants running to the bathroom. Get checked in to be monitored.

5:30 They check my BP and it is normal.
WHAT?? Normal? I did not just drive here for them to tell me it was normal and send me home. I KNEW IT!

5:35 they hook me up to the contraction monitor

6:00 the nurse tells me my contractions are 6 minutes apart.
WHAT? How come I do not realize this? How come I am not feeling 6 minutes apart???

6:10 the nurse comes in with some paperwork for me to sign. I thought I was going home. I asked her what they were and she said they were permission to treat papers and she said “You are not leaving here without a baby”. I started bawling. I was not ready for this. For some reason I was not mentally prepared to go through labor yet. I was MORE than ready to meet my Peanut but I was not ready for all the hard work that was required of me. I looked at Jason and he could tell I was not there all the way. He mouthed “I love you” and I saw a little tear drop down his cheek. He was ready to meet Peanut and he knew I could do it. He has seen me do it before and he was so confident in me. His confidence in me is the only thing that got me through!

6:30 they transferred me into another room and asked to hook me up to an IV. I refused the IV fluids but let them put a HepLock in for the just in case. They check me and I am dilated to 3-4cms and I am 90-95% effaced.

6:45 I got to get up and walk around to get the contractions going.

7:45 The contractions stopped. WHAT??? I was scared to tell them because I did not want to be sent home, HAHA! I told you I was scared that I was leaving without a baby!

8:00 back on the bed for monitoring. They promised they would not send me home. They wanted me to rest for a bit.

9:00 The nurse came in to tell me that the doctor wanted my water broken and asked how I felt about that. I told her I was ready to get the show on the road.

9:30 doctor came in to break my water

9:32 heavy contractions started and did not stop!

10:00 Jason can tell that the pain is getting worse for me and that I am not all there in focusing on the contractions. He asks everyone to leave the room (my mom, his mom, my dad and my dads girlfriend, Margo was on the way and his dad would have been there but he had the other kids).

10:01 Jason and I decide that the epidural was needed. I had planned to just go with the flow and see if I could do it. My head was not in the game though. For some reason I just could not concentrate or focus on my breathing. We call the nurse and we are in luck, the anesthesiologist is on the floor already and will be in shortly.

10:10- the wonderful epi arrives.

10:30- I am feeling pretty dang good. The nurse checks me and I am an 8. WHAT? I could have done the 2 extra cm’s and pushed this kid out, dang it! Oh well. I fell great.


FEELING GOOD!

10:50- I feel lots of pressure. Call the nurse- they check me- its time to push.

11:07 doc arrives. I remember telling her she had 53 minutes to get this baby out because I needed to be released on Thursday (having the baby before midnight counts as day one for insurance purposes!). I needed to make it to Nylin’s kindergarten graduation!!!

11:10 doc tells me to practice pushing while she goes and gets the right size gloves.

11:12 baby nurse runs into the hallway to get my doctor because Peanut’s head is out!

11:14 Peanut is born!!!!! Jason yells- “IT’s A BOY!” the next thing I know there is a brand new baby boy on my chest!!





It was so amazing. I could not stop crying, kissing Jason and kissing Jackson John. It was amazing. I felt this amazing rush come over my entire body. You can call it hormones but I call it God showing me that everything is great and I am doing what I was intended to be doing, having amazing kids with my amazing husband. It was all, well, amazing.




We were cleaned up and sent up to our room where we just stared at Jackson and took pictures and just enjoyed our time. It was amazing.

Jackson John, 5-18-2010
7 pounds 11 ounces 20.5 inches