Hi all! So many things going on! I feel like if its not appointments with one doctor.. Its something else completely!! Gets to be a little frustrating.. I am sure we have all been there. My son Gabriel was diagnosed with Hemi when he was 7 months old. Was the scariest time! No one had any idea what it was, why, or how! Just that one leg is bigger. Go see a Orthopedic Surgeon.. Surgeon?! WHAT! He had the most information about Hemi. Of course I had to switch Gabriels pediatrician.. She just didnt really know, or want t know about it. Maybe too much work?! I found a wonderful NP.. Who was willing to learn and excited about it. Praise the LORD!! So I googled Hemi, and the Wilms Tumor.. If you have not done it... DONT! Lol! So we started our journey with Hemi! Ultra Sounds. Blood work. Arguing with insurance companies. Arguing with Ultra sound techs.. It was so.. over whelming!! So scary.. and, Ill say it.. DEPRESSING!! I have found out so much information! He has so many wonderful doctors! So far we have five total! They are all on board, with moving forward. And helping out my special little guy :) He does have one kidney that is bigger. He has had Hydronephronosis. It resolved on it own. whew!! His Ortho doc has already prepared me for surgery when he is 9-12. His Geneticist, Says he now has Crossed Hemihyperplasia. Which is still Hemihypertorphy, I dont know why they think these words get any easier... You guessed it, Cross.. His left leg, from his pelvis to his toes are bigger. His right arm, From his hip/pelvis to his little eye is bigger. I am waiting to hear about a test they want him to have to see if he has BWS.. Beckwith-wiedemann syndrome. He has 3 of 5 markers. It isnt super noticeable.. to every one else. Even his relatives some how made me feel like this was all in my head! Gotta love the relatives!! LOL At first, I was calling the doctor after three days of waiting to hear results from ultra sounds and blood work. Today, No news is GOOD NEWS! LOL!! I still call, I just give them a little more extra time. I know you all have worries, and what ifs. I do it to! I try to enjoy every moment. The good, the bad and the melt downs! I decided to be a stay at home mom. It is killing my budget! But this is the time I will never get back. To me, thats more important! I lost myself in, not just mommy mode. I lost myself so much, I didnt recognize the person staring back at me in the mirror! And I am sure you have all heard this one.. What good are you going to be to your child, if you are not in good graces with yourself? Depression, again.. Great, Just what I needed.. So I made a huge decision. I decided to start working from home. I am a presenter for Younique! It is great! Any one heard of it?! If not you can google it.. youtube it.. I would love for you to find out about it!! Younique has GREAT opportunities! If you are a stay at home mom.. and need extra cash.. YOU WILL FOR SURE WANT TO CHECK IT OUT!! It is a life changer!! Not to sound spammy.. But I really thought, If this even makes me feel better.. AND I get to stay home.. AND I MAKE MONEY.. Ummm Need I say more?! I am really happy right now! Ultra sounds came back AWESOME.. AFP was 2.6.. WHHOOO HOOO!! I can wait 3 more months to cram all those doctors appointments in .. I can dig down to the woman inside me.. and GET TO WORK..LOL!! If any of you have any questions about Gabriels experience, I will answer to best of my ability! For those of you interested in finding out more about what I do. Please send me a friend request, or a message we can talk about it! :) You all are doing a wonderful job with your kids and the stress!! Dont give up!!
Posted on: Fri, 17 Oct 2014 16:35:41 +0000
Trending Topics
Recently Viewed Topics
© 2015