Piano Man

Bam!

"Oops", a whisper heard through the house then some giggling, these are the noises that awoke me this morning. Then the familiar melody of "We Wish You A Merry Christmas" wafted down the hall making me feel comforted even though the bright and scorching sun was shining in on my eyes on this extremely hot August day. Smiling and stretching while still lying in the bed I heard Frankie, Eloise, and Lena singing while Frankie's fingers found the keys effortlessly.

They were singing quiet in an attempt to make sure not to wake me. But Frankie had let the top of his grand piano slip from his fingers like usual and the banging of it hitting the rest of the grand piano had awoken me. Tears pricked my eyes as I heard the next melody arise from the piano, "Beauty and the Beast." I heard the girls get really quiet as Frankie quietly crooned out the lyrics. Flipping my hair and grabbing my robe from the bedpost and slipping on my slippers, I tipped toed quietly down the hall.

Standing in the archway, I saw an incredible view. My husband had Eloise perched on his left leg and Lena was sitting beside him on his leather bench in front of his grand piano. Frankie was playing so intently he didn't even notice me in front of them watching him play from memory instead one of his countless songbooks.

I glowed when Frankie finally felt my eyes on him. He didn't say a word but I felt invited to sit beside him. Lena made it more apparent that I was invited because she ran up to me and grabbed my hand and pulled me along. Frankie kissed me with such passion and love that my equilibrium was strongly affected. He started playing "Valentine." As I pulled Lena into my lap we started singing together.

I've dreamed of this a thousand times before
In my dreams I couldn't love you more
I will give you my heart
Until the end of time
You're all I need, my love, my Valentine

And even if the sun refused to shine
Even if romance ran out of rhyme
You would still have my heart until the end of time
'Cause all I need is you, my Valentine
You're all I need, my love, my Valentine

Daily Dealing with EB

My daughter, Eloise, has epidermolysis bullosa junctional. The junctional is one of the types of epidermolysis bullosa, or EB. What exactly is EB?

It is a very rare genetic connective tissue disorder that affects 1 child out of every 20,000 births. EB is actually a group of disorders that share a prominent manifestation of extremely fragile skin that blisters and tears from friction or trauma. Internal organs and bodily systems can also be seriously affected by EB. The list of secondary complications can be long and may require multiple interventions from a range of medical specialists.

The manifestations of EB, the symptoms the person suffers from, and the overall long term outcome on quality of life run the gamut from mild to devastatingly severe. This is dependent on several factors including the type and subtype of EB and the inheritance pattern (autosomal dominant versus recessive). There are many people who are diagnosed with milder forms of EB, which, while they can be extremely difficult and painful to live with, are not disfiguring or lethal. In these forms of EB blistering of the skin may be limited to the hands and feet which may not result in any scarring or loss of function. In more severe forms there is generalized blistering of the skin as well as injury to many internal organs and bodily systems. These more severe forms of EB result in disfigurement, disability and early death, usually before the age of 30. In fact, some forms of EB are lethal in the first few months of life. 

----- debra information on EB

"I have EB... I am not contagious. I wear bandages to protect my skin. I was born with it, and there is no cure. Epidermolysis Bullosa, or EB, is a rare genetic disorder. My body can't produce the protein I need to make my skin strong like yours. I get blisters very easily and sometimes they hurt. Today, there is no cure or treatment. Daily wound care, pain management, and protective bandaging are my only options." - This paragraph is on the cards that I have ordered to give to people.

My first initial thought when I heard of this disease barely a month ago was "How is that even possible? A child's skin just falls off?" But it's true in the sense of when you think of a blister. Where we have regular connective skin. Theirs is not.

Daily things for us are not the same for us. If we wear clothing that rubs us we barely notice it or it makes a red spot and that's the end of it. For her, it may not be the case. She will blister and not just red skin or tiny white pocket filled with fluid. She will get the ghastly large blisters.

Eloise does have the lesser of the types and subcategories. We are very grateful for that each day. I make sure to remind myself each day by reading the blogs of those that are not so lucky. I send encouraging words to them and let them know they are in my prayers.

We start out our day by me changing her diaper and nursing her. I make sure that we have bandage change areas in our home away from fun areas in our home. This helps her distinguish between areas that will hurt her and areas that are comforting.

After she is finished nursing I take her for a sponge bath (or Frankie does) and she is washed and we pop any new blisters we see and drain them and then bandage her. We are not allowed to wear gloves because it irritates her skin more so we just have to make sure our hands are washed well. We have small scissors and lancets to pop the blisters. After there is a puncture in the blister we let gravity help with the draining of blister. We put ointment on it and bandage of her blister. We cannot use adhesive because it makes her skin worse.

We have started learning to go about our daily normal lives. It does no good to watch her every step. She stumbles over her own feet and falls like I do. When her knees her the floor it's almost instant blisters. I take her to one of the areas and bandage her up.

As I have said before we are lucky. She can play in the sand without blistering. She can have a teddy bear. Most children with EB can not do these normal things. Some children are tube fed because eating scars their throat.

We still watch for rubbing, scratching of any kind on her. But this is what life is like for us. We live each day to the fullest now that we are over the initial shock and realizing we can't stop every blister. We say our prayers every night for those battling this that are much worse off.

If you are wandering how you can help children with EB find a cure go to Debra Take Action. 

Oh My Gosh! What Does She Have In Her Hands?!

Pretty sure it's a Broom!

No. Not Mary Ann. Yep in fact I am pretty sure I bought the broom myself.

I have been spoiled all my life and I still am. But I wanted to grow up and do things for my family. We are, after all, a family now.

My mother says it's me nesting since I just adopted. I call it finally getting my act together.

There are many things factoring in my change of ways:

First, becoming a mom of a child with EB it makes you aware of germs. Germs are a huge enemy now. I was totally freaked out reading things online when Ellie arrived. I felt like I had to shield her from everything. Then I had to clean everything. I like having things clean but I wanted to boil everything. I have gotten over that some. People keep me in check and helped me remember that she is a toddler and I have to let her live.

Second way is a YouTuber. Organized Like Jen, this is her main channel but she has several more which I love. I love her! I can literally watch her all days as I have found out. I literally felt myself taking notes on her vlogs. She is not a specialized organizer which is what I like. She isn't about purging everything she has or having a minimalist of things. I really hate shows where their idea of decorating is one lily in a vase in the table. It irks me because nobody is happy with that and if you are I feel sorry for you.

Third way is actually the person... She has coodinating blog posts with every video she does! How awesome is that!?!?  Organized Jen is also a place where I take notes and get lost in the world that Jen Ross created. She is so wonderful. I hate how much she gets bashed. It breaks my heart because I understand what she is going through.

(For her other channels My Housewife Life, The Busy Bee Buzz, Winnie The Tzu Tube {All about her dog! YAY!} Disorganized Don {Her Husband's channel})

Next way that has totally made me have a problem with organizing is my planner that I have organized. Erin Condren's Life Planner has been taking the women by storm online. And not only online but craft stores and office supply stores! Knowing I was going to be purchasing one really made me sit down and think about what I wanted to put in mine. And there for, it forced me to think about becoming organized.

Also on the list is the website called iHeart Organizing. A mother of three boys and she gets the job done for house projects that help you organize and make things look better. I am all about the right now. So this website really makes me feel good about the changes I am making in my own house. Not to mention it gives a great deal of resources.

The sixth way, is Cleaning Mama.  She has a ton of cleaning printables and schedules. They aren't just about making your own cleaning products. They also talk about store bought products.

And last but not least is FlyLady. I am starting with the babysteps for this website and then moving outwards. It makes me feel like I am accomplishing something. That's where I want to start and I feel great knowing I am working toward making a better me and a better home.

So when you see the changes in me realize that I am wanting to make these changes but with the help of my friends and mentors I am doing with my own style... Glitter and all. (Who says Dawn has to stay in that ugly dispenser?)

More Tea Please

I wanted more time with Eloise and I got it. Frankie was delivering furniture he had made over the week to their owners today. She was nursing as Frankie left this morning. She did want some solid food afterwards. We had mini banana pancake muffins. We watched PBJ Otter on YouTube. She really enjoyed it and so did I.

Eloise and I cleaned up a little and she was a huge help. I gave her a bath and brushed her hair. To the normal person this doesn't seem like a big deal. But to me it was huge because her skin is so delicate and I am still caution of what I am doing.

I boiled her new plastic tea set to make sure the germs were off of it. Then I dried hers. I got my set out from Teavana the Butterfly Cast Iron Teapot. I decided to have Black Dragon Pearls Black Tea. A favorite of mine. For her "tea" I poured some organic apple juice in t here. I made use the sandwiches above and also some lunch sandwiches too. We had a small picnic on our floating bed on the patio. 

After having our small picnic on the patio we cuddled up for some reading, nursing and a nap. After that I made us both some more tea. Real for me and apple juice for her of course. We explored Aunt Odette's garden for a bit. Discovering that there are some butterflies which made me very excited. 

I decided to make her a sensory bin. I look at what I had and discovered I had plenty of oats for making oatmeal; so in the box they went. I gave her two different sized cups and a spoon. It has now been two hours of nonstop play for her. She pours, scoops, moves, etc. I have been fascinated watching her. 

I did move the box inside so I could start on making dinner and writing this blog. That hasn't hindered her at all. So for our first day alone, I believe it has been amazing. 

Milk on the Go

A month ago Frankie and I discussed what rooms to turn into a playroom and nursery. Three weeks ago I was planning to have children next year. Two weeks ago my heart found my child. This week? I hold my daughter in my arms.

True, life comes with unexpected turns. But most of all? My daughter is breastfed. I haven't had milk in my breasts for five years since I had my own daughter.

I began research and listening to doctors about breastfeeding. My fiance, Frankie, and I did a lot of talking to family members and friends about breastfeeding. Many of our friends and family are breastfeeding or have. I went to my mother who breastfed but also is a retired pediatrician. She helped me get my head together and also start.

Massages and suctions on a schedule were how I started. I pretty much was reading about the condition my daughter has while I was massaging my breasts. My mom ordered me domperidone from New Zealand, I believe. I have not really been on that. I have been working with herbs and vitamins and that is working just fine at the moment building up my breasts. I also have a zStarter Supplemental Nursing System, Supplemental Nursing System™ (SNS™) and Symphony® Breastpump.

Push and shove things started happening and I have Eloise already. She nurses when she first wakes up, lunch and at night. I make very, very little milk at this point in time and she is on donated breast milk. I have had several people tell me to put her on formula but a very low formula. We may try that at lunch in the near future until my milk comes in fully.

The only problems we have faced so far have been easily fixable. One problem was sliding the supplemental tubing in her mouth while she is latched onto me. We got over that one real quick. She became used to it faster than I thought she would. With her having EB nutrients are a big deal and breast milk has a lot of benefits for her over formula. The second problem was my back. I didn't really want to use a nursing pillow. We were given one as a gift so I used it and it does help. What I had to learn quickly was that I cannot just sit however I like. I must elevate my feet to nurse comfortably for me and her.

 I love SNS system but I believe in the future while my milk is coming that I will use Lact Aid. It's a lot like it the SNS system except it's not as uncomfortable. The SNS isn't exactly uncomfortable it's just bulky bottle there. The other is a high grade bag full with the same tubes as the SNS.

What matters is that my daughter gets the nutrients she deserves. I love breastfeeding her. And as for Frankie's bonding time with her. He bonds with her while she is nursing too! When I asked him how this was the response, "I get to hold you and give you support. And as I have my head resting against yours I can stroke her cheek and see the love between our little family." Another reason why I love him.

We are planning on trying to conceive as soon as we are married in November. I am sure then I will have plenty of breast milk for all the children I have.