A Rare Skin Disorder?

I should be sleeping right now.  I have been going 24/7 since before the holidays began and am now fighting a cold. Tomorrow Gabby will have her well visit check up. Not looking forward to my little one getting shots nor the early morning. I am still awake tonight because my sweet soon to be 11 year old daughter has a family tree project that is due tomorrow and we were up 'til 11:30 together. The way my life works is you do what ya gotta do....so I needed to polish a little bit of her project, put a load of laundry in, and then pump for my little Gabby. As I sat pumping I came across an announcement for Rare Disease Day that is coming up
 28th. I am ashamed that I never knew of such a day. Never knew of Epilepsy Awareness month either until my oldest daughter was diagnosed in 2008.

"It's a rare skin disorder. Only 1 in such-in-such huge number (my interpretation) ever get this condition." That is what my husband and I were told over and over again after Gabriella came into this world. Rare. Why? How? Seriously? We have 6 other children and she is hit with a rare skin condition. Really? Incredibly hard to believe. I didn't want to believe & until about 3 weeks of having her home, 5 weeks after she was born, did I accept the fact that this is a life long condition. Yup, I was standing over her at her changing table where I spent many hours applying aquaphor-caring for her skin the best I could. Learning every day what would work and praying for something to work. We began to see what we thought was a cycle. Gabby's skin would seem to get worse every end of the month. So, when I was gently painting aquaphor on her that night my hand unknowingly went over a blister which broke. My heart sank and I then realized she isn't going to get better. This isn't some freak infection. It is the real deal, a "rare" deal, that Gabby has been given.

As February 28th approaches I will remember those who are suffering even more so than our Gabby with this awful skin disorder. There are many rare diseases that people all around us are living with. Let's take time to care.

 I now need to dry the load that was washed and get to bed! Its 2:30am!

Happy First Birthday Sweet One!

                      

Dearest Gabby on your First Birthday! 

Happy Birthday our sweet Gabriella Grace. It is amazing that this day is approaching. You came into this world on the 9th of January, a day which should have been a day of celebration. Instead (God's plan threw us on our knees) your Dad & I with heads low were praying non stop for you. The details of your birth day have been etched out and you know by now the pain you suffered lying in the NICU bandaged from head to toe. Although I am reminded that you will have no memory of the pain you felt. I will never ever forget the torment I knew you were dealing with only hours old. You definitely developed a strong set of lungs! Those very first moments of seeing you (I loved you way before I saw you and haven't wanted you out of my sight since) I knew something wasn't right. Honestly, in my gut I knew something wasn't right before I saw you. Life is funny-God only lets us understand His purpose when the time is right- I mean, even though I had a strong feeling that something was not right, there was absolutely nothing I could do about it but give my fears and concerns to God. Literally- that is it. After hours which turned into days which turned into weeks of worry, disbelief, fear, and yes, even anger we were able to take you home. We set you up in our room-our little NICU place for you. You were not leaving my sight! You slept beside me this entire year. If it wasn't so dangerous you would have been in my bed with me. That is one thing I could not do with you for a long period of time because you became too hot & uncomfortable. Early on was very tricky. A delicate balance of just the right touch but not too much. We learned as we went & looked for others who had gone down this road  with a newborn whose skin was "broke". (You are not defined by your skin, Gabby, you will always be MORE than that.) I prayed for wisdom and asked God to give me answers to all the questions we were drowning in. Thank you, Lord, for my nursing background. Without the nursing education the dressing changes would have been much more difficult. God gave us what we needed when we needed it. Whether it was peace, friendship, support, or a day without blisters. God gave us you. One of my best gifts ever! You have been the sweetest most precious gift I could ever have asked for. I know as you grow I will be growing right along with you. Despite all of your discomfort (much more than I have ever had myself) you have been a delight to watch this past year. A true delight for all of us-all your siblings are ga-ga over you. You brighten up our days, Gabby. God has something so special planned for you-He had a plan for you before you were even born. He formed you in my womb perfectly in His image. Perfect for His plan. You are perfect. No matter what my human self wishes for you deep down-No matter what- You were created perfectly to carry out the plan of the most High. We all are. And I think that is one thing I am learning from your short little life so far. No matter are short comings or what the other person has or doesn't have, we were all created to give Him glory. We are all perfect images made by the great creator for His purpose. That is all we need to understand the importance of our existence. So, see my little one. You (God through you) are already carrying out His plan. I know it is only your first birthday but my prayer for you always as you have many more birthdays is that you understand that you are not broken in His eyes. That your outlook on life always be a positive one. That you use what others see as a disability for His glory. You are not defined by your skin you are much more than that my little Gabby! I love you dearly and look forward to celebrating your first birthday with you in my arms! 

Thank you, Lord, for your patience with me. For your forgiveness when at times I questioned your design. May Gabby grow in grace and confidence. Confidence in her almighty Creator. Amen.

I love you My Gabby.
Love, Hugs & Kisses,
Mommy

God Simply Knows

For my thoughts are not your thoughts, neither are my ways your ways, declares the Lord. 
As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts. Is. 55:8-9

I recently read this verse and was reminded that God simply knows....He simply knows what is best, when it's best, how it's best and for what purpose it's best. I can't argue with that. For sure I would wreak havoc on my life if I thought I knew what was best. Not to say I haven't tried at times.

I want to go back to when I was pregnant. I have to admit my husband and I were "done" with growing our family. (Oh, yea, the verse above!) Yup! Well, God wasn't done growing our family and I am quite thankful He wasn't. We waited until that September to say anything to anyone about the little one inside. That put me around 6 months prego! This didn't go over real well with everyone, but hey, it was our 7th and we aren't exactly young folk anymore. Time went on, homeschooling started back up, fall came, Thanksgiving came, Christmas & we thought we would have a New Year's Baby! All the while the only thing I had prepared was knowing where our little baby girl would sleep. The bassinet remained stored and we still had to dig it out to set up next to our bed. No diapers bought. No new clothes or blankets ready. I had a huge list of things either to buy or prepare for this little one and this deep sinking feeling that she was going to be early. All our other children were delivered on time so I had no reason to back up this feeling. Or was it just a hope that she would come early.

Looking back I can see clearly God's hand in it all. Even though we had nothing prepared, God knew we didn't need to stress. I wouldn't need clothes, a coming home outfit, booties, newborn diapers, or even a bed ready for her. Not right away anyway. I wish I could put into words exactly what I mean. Peace that all would work itself out was what my heart would throb. My Mom has always told me that babies don't need a lot of things, all they need is your love. Well, my hubby and I surely had much love to give. And our baby Gabby would feel every bit of it!

Christmas and New Years had come and gone. It was the first week back to school. I had three weeks to teach before the baby would come. (I thought) A lot had to be done. Not only for baby, but cleaning the house, I wanted to get freezer meals made, have the kids up to speed with school work & so much more. That first day back to school, January 6th, I began to feel very uncomfortable.. All through the school day I wondered if I was going to make it through. I did make it through and it was a great school day. But the next three days were not easy. (That may be a future post.)

...so are my ways higher than your ways... I looked down at our baby girl, just born, and knew right away that something wasn't right. In the delirious state I was in I figured because she was three weeks early that was why her skin looked so thick. But I didn't understand why some of her skin looked very red. We learned very quickly that our baby girl had something wrong. I was being asked all kinds of questions like "Do you remember taking anything?" "Doing anything?".  Remembering back to those questions haunts me. Inside I was wondering already what I did to cause this. I didn't do anything, but several weeks went by before I actually believed that. God knew. The doctors didn't know. They were scrambling to find information for this rare disorder to give to us. This proved to be the beginning of something far greater than I could comprehend, than many of us could comprehend.

Gabriella, Gabby Grace, was 5 months old before we knew her definite diagnosis. Epidermolytic Ichthyosis.  God knew that Gabby would not come home right away. God knew that I didn't have to have her clothes ready, washed and organized. God knew that a coming home outfit would not be needed right away. God knew that I would have time to get her sleeping area ready. God knew. God also knew the strength needed, the peace that comes with that strength. He gave it just when we needed it most. There were definitely down days. Even now down days come and it's verses like this one that remind me that I know nothing in the grand scheme of life-But God knows and that is all I need.

Hope, Faith & Love

I recently set up a Facebook page for Gabriella in honor of who she is and in celebration of her 6 month milestone. The cover photo I chose was taken the day we were discharged from the NICU, January 24th, 2014. Which will be exactly 6 months home 2 days from now (which I just realized right now while typing this). That will be a day to celebrate! I was looking at the cover photo and for the first time realized that my husbands wrist band shows clearly in the picture. He has worn that purple band for years for our daughter that was diagnosed with juvenille generalized seizures when she was 9. She just turned 14 and will be seizure free for 2 years come September 3. I just love that this picture portrays Gabby and Johnna's fight. We could never have planned that, especially during that time with Gabby at the NICU. You can read HOPE clearly on the band. I just love that. My hubby isn't taking it off until Johnna is off of her medicine. 

During the time Gabriella was in the NICU God used many people all over the country to pray for us. Family came close by. Help was there for our other 6 children at home which made it easier for John and I to get to the hospital each day. Our church became family to us. They came to Gabby's bedside and prayed with us, meals were planned, food was donated and friends made themselves available to us. Many of the nurses who cared for sweet baby Gabby were sincere and went out of their way for us to give us information or just to let us know they were there if we needed anything. I wish I could remember every nurse's name so I could thank them. From Gabriella's delivery to the Special Care Unit and then the NICU there were many hospital personnel that gave their all. God's hand was directing us even before we realized it. Looking back many things become so much clearer. Prayer continues to carry us as we care daily for little Gabby Grace. Thank you to all who join in praying for the healing of Gabby.

Below is a post that I shared today on FB. If the bracelets are still being sold buy one! If not there are other ways to help The Butterfly Fund by visiting their site. 

Help this organization meet their goal! $9 only.Easy to order and shipping is included!

The Butterfly Fund...all proceeds go to children that suffer from many different health related needs. The RED bead is for EB children, white bead is for children who suffer with a disorder or disease that isn't linked to a specific color. The purple is for children with Epilepsy. I can't wait to receive our bracelets. Two of the beads stand for 2 of my children.

'Butterfly' patient hopes to inspire others

This girl in the following link is an amazing inspiration. I wanted to share her story with you and for Gabby when she is older.

When Gabby was born Epidermylosis Bullosa (EB) was the preliminary diagnosis. Her skin biopsies came back inconclusive. The doctors then consulted a pediatric dermatologist to see her. Her first reaction after assessing Gabby was dystrophic EB. This is why this article caught my eye. I hope you find this inspiring and add her to your prayers.

'Butterfly' patient hopes to inspire others with rare skin-blistering disease | CTV News

Happy 6 Month Birthday!

Happy 6th month birthday to our angel, Gabby Grace. Here we are in the month of July and I still feel like it should be spring starting not summer. Gabby was born in the beginning of January and time has not been my friend. Time. It just keeps slipping away and here we are smack in the heat of the summer. I guess that is because of the long hours caring for Gabby and everyone else with little sleep to go on. In the beginning of this journey with baby Gabby having a rare skin disorder her Daddy and I really didn't know how we were going to get through each day. We left the NICU having just learned how to change Gabby's dressings which, in the beginning, took the nurses 2 hours to change. How in the world was I suppose to do this twice a day with everything else on our plate. God is good. That is all there is to it. By the time Gabby was discharged her skin had healed to the point where her dressings were limited to her limbs and torso. Individually wrapped fingers and toes only when needed. She had come a long way and I kept hoping that she would heal and this nightmare would be behind us. After about three weeks at home, tiring three weeks, it hit me that Gabby wasn't going to heal. Her skin kept blistering, I kept lancing the blisters. Just as soon as we thought she was going to be okay the next day her skin would slip off in different places. I was spending my early mornings, afternoon, and late into the night feeding, changing, dressing/redressing, aquaphoring, & wrapping this little tiny bundle oh so very carefully. She cried a lot. I felt for my other children who needed me and most likely hated to hear her crying. Tylenol was given for her discomfort. Gas drops also were a big help. Despite all that this little one has dealt with she has pulled through and is such a sweetheart. She cries very little these days and began sleeping through the night around 4 months after I started her on rice cereal. That was wonderful! Gabby loves her baths. She can't spend too long in her tub or her skin becomes too soft and fragile. Heat is also an issue for her. I will share in posts to come what we have learned about Gabby's condition and more on how she is developing. It is a journey that is enriching us all.
This little angel has taught me so much in these last 6 months. My faith has grown and prayer is more real to me than ever. Mommy loves you my sweet sugar monkey. (A nickname given to her because of the sweeties in the NICU, sugar water to help calm her and her stockinette dressing that made her look like a sock monkey.)