A Diagnosis....

 Dear Reader,

         When our second daughter was born, we knew something was wrong. We searched and searched for a doctor to take us seriously, to really examine all her symptoms (from multiple systems) and someone who wanted to help. She was hurting and we didn't have any course of action that really relieved any of it. It has been a long 6 years. In this journey we have seen 29 doctors from a variety of fields, have tried every type of cream/lotion out there, and have tried multiple diets. It has been a long 6 years.

     In the past 3 months one of our doctors suggested we get some further blood work done, just to see. We went to our pediatrician and asked for the testing. He consulted with a geneticist and she wanted to see A. Long story short, we went and saw her (she was fabulous!), and she suggested we do go ahead with blood work but also see one more dermatologist to answer some questions she had (and to get a skin biopsy that we have been asking for for 3+ years). We were hesitant, but we went to the Dermatologist. He was great as well! He really looked A. over, listened to all we have tried and understood we were not coming to him for another steroid cream. He sat back, thought for a moment and went on to explain that he was fairly certain he knew what A. had. He agreed we needed to do a skin biopsy (that would confirm his suspected diagnosis), and did one right there in the office. The results came back in 2 weeks and he was correct. We had a diagnosis. 

  

            She has a genetic skin disease called Icthyosis Vulgaris. It is not curable, nor will she outgrow it.

     But, we have a name. In a matter of a 30 minute office visit, and one test later we have an answer that 28 other doctors couldn't (and wouldn't look for in some cases) find. We praise God for His mercy in allowing us to have a clear answer, yet pray that He graces us with the strength, and grace to carry on in this next segment of our journey. 

    We go back to the Dermatologist in 10 days  for the followup where we can ask all the questions we have, but we wanted to share with you where we were at. We are also waiting for more blood work to come back. We will be sending a letter to every doctor we saw with this diagnosis and A.'s picture. We hope that thru this letter, they (the doctors) will take more time with their patients (and their parents) and listen to what the parents' concerns are. Parents are the experts of their children.

   

 We would appreciate your prayers for A. and us as we navigate this new journey. We don't have a clear picture of what all it will entail. Although, please know that I have done my research on this and have a list a mile long of questions for the doctor. In saying that, please refrain from sharing suggestions or rebukes on what we should do or should have done. This is where we are, and we are praying for the Lord for guidance. We do just want the best for our sweet A. 

   

And, we started!

Two weeks ago we started school for the new school year. I knew we needed to start early so we could allow for a 'baby break' for when this wee one comes in the winter. This mama is not gonna want to school and have a brand new baby in the house! We're gonna need a break. I'm gonna need to get some sleep under my belt before we start again. But I'm getting ahead of myself. *sigh* We started and now I'm just tired. But, good tired. Tired because we were very productive and got thru a whole two weeks of school without any tears! *cheer* I am so happy with my choices thus far (both the ones that are the same as last year and the ones that are different.). E. is really sailing right thru her independent work and A. is doing great with her first year of structured school (well, as structured as we get around here!). They are both happy to be back in a routine, as am I. I guess I really am a type A at heart and just wish I was the free spirit type....

   Every year I take school pictures in the same place, the same way (more to document growth and such.). And while I am posting them here, I think I'm gonna change it up and take some more exciting pictures soon. I (of course!) have seen some cute ideas floating around on pinterest and think they could just be an exciting way to document this year. This year has really been a year of change for us. Not noticeably to some, but change nonetheless. I even have an idea for incorporating the new baby into this year's school pictures... 

 

 I promise to post a  belly shot this week (I know! It's been too long!). But, keepin' it real- last week was a l.o.n.g. week for this mama! And, I just couldn't get it all done. Sorry that you (all?) had to suffer silence on my end, but I choose my family over my blog. And, I would hope you would do the same. 

Have you started school yet? What do you do to commemorate the start of a school year? Any great picture ideas???

Wordless Wednesday : Art class edition

Doctors, Food and My Sanity....

         So, I've been away. Well, away from the computer because we have been at the doctor's office...again. Do you remember me telling you that my second daughter, A., has been sick from birth? Well this part of that. I know I need to write a whole post (or a hundred *shaking head*) explaining it all (or what we know thus far), but honestly I'm tired of re-telling the story. And, it's a long one! So, I promise as soon as I get the energy to sit down and write quite possibly the longest post yet, I will give you all the details so this post makes (more) sense. *smile*

      We went to A.'s doctor last week. He tested her and said her bile duct and liver are processing properly and now we just have to be diligent about her probiotics and diet (again, this will make more sense once I finish the post on her- soon I promise!). He tested more foods and added corn and corn products to our list of "no-no's." Now we must be avoid gluten, dairy, corn, artificial colors, additives, preservatives, and minimal sugar. It's interesting around here for sure. *sigh* I have been praying more and more for guidance and patience.
 
   I guess my annoyance about the whole deal is that I was just getting good at the list above minus the corn, in meal planning/cooking. And, now I must find replacements for corn chips, corn tortillas, corn starch (which is in ALL baked goods, especially GF recipes) and popcorn. *double sigh* I am, however, thrilled that this could be the last diet change we make that will yield fabulous results. I am prayerful that this is it.

    So, the last two weeks have been interesting in the I-don't-wanna-change-how-I-cook-every-meal kinda way. But, they have shown progress so far with A. Her feet aren't as red and inflamed (her normal is red, inflamed  and broken open from scratching so much. Think what your feet would look like if you stood in a fire ant bed for an hour and then scratched them the rest of the day. *frown*), and nights aren't so bad lately. Can I ask you for prayers for her while we have to tell her 'no' to more food (especially hard when we are away from home!), and prayers for me while I try and find better substitutes and meals that are yummy and good for her body?

   Next week I'm gonna be a part of The Simplicity Parenting Carnival again and I'll be sharing how I keep things simple with food and the holidays in spite of all our food restrictions (including the latest ones!). It should be fun. I can't wait to share all my tips thus far in this food journey dictated by health needs. Won't you join me?

  How has your health influenced your food choices lately? What are you trying to avoid?
   

Wordless Wednesday

Wordless Wednesday

Wordless Wednesday

Wordless Wednesday

Wordless Wednesday

Wordless Wednesday

Wordless Wednesday

I'm up to a little something ....

{A little side note.... I hit the 'publish' button while we we're on gone, but it didn't actually post! Argh.... Please forgive me for seemingly disappearing for so long! *wink* }


Well. We did it. We went on VACATION!!!! It's our first family vacation ....ever! And we are loving it! Here's a little picture to tide you over until I can get to a computer :)

Purging and a little something to share....

     I've been purging my whole house. So, when I sit down to the computer (which is not very often!) I have also been going through my pictures.... it's a mess. I'm trying really hard not to let it overwhelm me. Really though, I'm just wishing we were back when you took a picture and had to wait until the film was developed a week later to enjoy the excitement of looking at all your pictures and laugh at all the ones that didn't turn out! *laugh* But, I digress.....

    I made a Shutterfly book of all our favorite pictures from last year and I was really pleased with it. So, I'm attempting to stay up to date throughout this year with all my favorites so I'm not bogged down when I'm ready to put this year's favorites together in a book. So, today I'm sharing one of my favorites so far this year... Enjoy!

 

Wordless Wednesday

A little something....

      Lately, I've been making things. It happens like that for me. I sew, paint or create things in waves. It's like I catch a crafting bug! *Smile* So I thought it would be only fitting if I shared something that I've been working on here.

   

        Every year for each of my girls' birthdays I make them a birthday outfit (shirt, skirt, or dress). This year A. turned 5 and requested (again!) a dinosaur birthday and thus she got a dino shirt. *wink* I paired it with a second hand skirt I found (no judging please- I don't make everything! *giggle*) that had bright multicolored large polka dots. She LOVED it!
      Now to think about what to make for O. and E.'s birthdays in August.....
 
      What have you been working on lately?

Wordless Wednesday

             

 One picture. One memory to remember forever. No words needed.

http://www.skymariephotography.com/

A letter on her 5th Birthday

http://www.skymariephotography.com/

My sweet A. (a.k.a. #2),

                     
                     5 years ago today we welcomed you, our second daughter into this world. Little did I know we would all start on a journey that still continues today and may never end. My prayer for you that day you were born was for a happy, healthy, long life. (Isn't that what every parent wants for their child?)

  

Then life changed. Something wasn't right. 

                    I pray that you know that mommy and daddy fought for you; we fought for answers from all 27 doctors. I hope you know that mommy and daddy prayed many, many nights that your sickness and pain and suffering would be poured out on us, not on you our sweet girl. We prayed for relief and Ultimate healing. We prayed for answers.

                   Today, that prayer has changed; I believe for the better. I pray for your health, yes. But I also pray that you see that health in this life may never be optimal- I pray for your spiritual health. I pray you find your Savior and lead a life full of the Fruit of the Spirit, a life of living faith (James 2:14-26). I pray for peace, for us all, in that this is part of the story we have been given. I pray for patience as we continue to find our 'normal.'  I pray for boldness to share your story, our story for His Glory.

                  My sweet little girl, please don't let these physical differences burden you. Live your story as He intended- for HIS GLORY. Live vibrantly always, as you do now. Keep smiling even when people stare or offer advice on a 'cure.'  Share your story with others; that there is peace in trials, even if you must seek it hard and long to find it. Love well, even when it hurts beyond words. Rest in knowing that this is not the only part to your story- it will continue to be a beautiful unfolding of His handiwork.

                 Know that mommy and daddy love you so, and thank God every day for choosing us to be your parents. You are beautiful. You are smart. You are silly *wink*. You are loved, loved, loved. *hugs!*

Enjoy your day. Laugh. And don't just lick the frosting off the cupcake! 

 Love, Mommy