How a diagnosis of Microcephaly changed the lives of so many people.
Happy Nineteen-Month Birthday Addie!
I think yesterday took a bit more out of her than I realized; she was really sleepy today and fussy tonight. Take a look at her battle scars on her arms. When I touch her arm and ask her where her boo-boo is, she whines and points to her bruise. Sweet baby, hopefully tomorrow will be a better day.
Addie and her new baby
A visit with monkey after the mean lab work
For starters, Dr. Dudgeon had ordered so much lab work that the hospital would not do it all at once. They said that for Addie's body weight, they would only take 10 cc of blood at one time. The orders called for 12-14 cc. Then, during the MRI, there was a problem with the I.V. and they had to take it out immediately after the MRI was complete. We were told we would have to take Addie to the central lab or either see if they would obtain the labs at clinic. When we got to Dr. Ness' office, the nurse had to call Dr. Dudgeon to prioritize the labs. Although we were told that clinic wouldn't do the labs, I managed to convince them to since Addie had already been stuck twice. From what I was hearing, the clinic lab was much nicer than central lab. We made our way to clinic lab and didn't have to wait long before it was our turn. It was so hard to hold Addie knowing what was coming, but the lab tech that we got was amazing! She immediately found a vein and was so gentle with Addie. Poor Addie starting crying as soon as she was stuck, but she is such a sweetie, she just sat in my lap, holding her baby with the tears streaming down her face. The lab tech got her right arm all bandaged up and then rebandaged her left arm because of the amount of blood that had dripped onto her arm, hand and wrist band. See...all it takes is a little compassion to make a scary situation all better.
A nice man who was walking by while we were taking pictures of the amazing flying Addie and monkey, offered to take a picture of the three of us. Those pictures are rare!
All done!
I sent Dr. Ness an email yesterday letting her know that we could not get an appointment with her until August 20th and requested that she email the results to me. She emailed me back late last night and told me to come to her office right after the MRI for the results. I knew she was a wonderful doctor, this just proves it! We do have the results from the MRI. It was a lot harder to hear the results than I thought it would be. I am doing some additional research and will give details soon.
I held back the tears as I asked Dr. Ness to please tell me if I could have done something wrong during my pregnancy. She was very, very firm with me and told me not to spend one more second thinking that I had any part in this. She told me that Microcephaly is such a complicated and rare condition that scientists have tried to recreate it in a lab setting and have been unable to. She said there was no way that I could have "caused" it. I managed to keep the tears back as she finished talking, printed out pictures of the MRI for me and explained the concerns. Dr. Ness told me that the results could have been so much worse. She is really proud of Addie for her accomplishments, advised us to continue to monitor her for seizures and to prepare ourselves...for what?
Boo-boo
Eighteen-months in the waiting...
As most of you know, Addie's first MRI resulted in an incorrect secondary diagnosis that was not revoked for five-months. We also discovered extra fluid around the ventricles and it took a world-renowned expert to give us the final diagnosis. I'm tearing up just writing this...I'm stronger than this and I know I will get through this regardless.
I hope that everyone is on schedule tomorrow. It will be extremely difficult to occupy a hungry eighteen-month old for more than an hour. Unlike the times Addie has been put to sleep for her Eustachian tubes, this time an I.V. is required prior to her sedation. I want this to go as smoothly as possible. I will be with her and we'll get through the toughest part of it. Once she is sedated, it will be a big relief for me.
Chris and I bought Addie a new baby today. A Corolle Baby that she can take with her tomorrow - it's a special baby because this baby can go in the bath and swimming pool with her. I think Addie will just love her (although she is still firmly attached to her baby from our E.D. friends!).
I emailed Dr. Ness today advising her that we could not get in to see her for almost a month. I asked if she could please email us the results from the MRI. We'll see...
Where's Julien?
I wonder where she gets it from...
I wouldn't wish it on anyone
Two of my friends have unfortunately entered the "wait and see world" this month. I have not asked either of them if I could post details, but I know they need prayers, so I will give very limited details. Please say a prayer for them.
Baby Jack is a sweet baby who was born without complication. On the morning he was to be released from the hospital, it was discovered that he has transposition of the great arteries (TGA) (his aorta is where the pulmonary artery should be and his pulmonary artery is where his aorta should be) and a large ventricular septal defect (VSD). His parents are amazing people and are fighting for him. They don't know what the future holds and they need our prayers.
Baby "R" is at 20 weeks gestation. "His" beautiful parents decided they would wait until birth to discover if this angel is a boy or a girl. What they do know at this point is that Baby "R's" amniotic fluid is critically low. "His" Mommy has Oligohydramnios. One day they have renewed hope and then it seems bad news follows. This wait and see world is excruciatingly painful.
I wouldn't wish this pain on anyone and know that if nothing else can be done, we can pray.
Rotten little monkey!
Addie vs. Pergo
Shield your eyes...
Sock monkeys
I found Addie the cutest outfits that have sock monkeys all over them and I am on the hunt for other sock monkey baby items. I found a website that makes the most adorable sock monkey nap mats, but just couldn't bring myself to pay $100 for it (not that Addie doesn't deserve it, but that is almost double the cost of the froggy nap mat I bought for her). I have checked every frou-frou shop between Homewood and Trussville and cannot find any other items or nap mats with sock monkeys on it. So, if anyone knows of a shop selling the merchandise, please let me know! Otherwise, I'm sure I can con GaGa into buying Addie the sock monkey nap mat or better yet...Santa!
Pure exhaustion
We are down to two weeks before we change schedules again. School and daycare will be starting soon! All that homework...I thought I was exhausted now! :)
Safe!
While we were playing in the office today, Addie heard the lawn mower and started fussing. I pulled up the blinds for her to look and although she was safely inside, she was not happy that her Daddy was outside with that monster!
Thank you Chris for being one of the most hardworking and giving men that I know!
Pottery Barn for Men
Red-headed child
My sweet Mom in her effort to make my life easier brought over her oh so awesome homemade lasagna yesterday. She made one pan of traditional lasagna and one veggie for me. :)
Addie turned dinner into a feeding frenzy and managed to have lasagna in every available area of her arms, neck, face and head. I cleaned her up in the sink, but wasn't about to torture her and wash her hair. We were on our way out the door for a walk and then water play, so it really just didn't matter... That's just disgusting! :)
Rotten
Of course Julien got a new toy too, he got the Guitar Hero for his Nintendo DS (rotten). For those of you who haven't seen it, it is so cool! He does a great job, whereas my guitar player got fed up with my incompetence and threw her guitar down...I guess Julien didn't inherit his guitar-playing ability from me!
Our friends at Children's E.D.
We think Addie met another milestone during our visit. I have been working with her for weeks, trying to teach her where her nose, eyes, ears and mouth are. Without a second thought, she showed us where her ear was today (third collage, first picture)! I will keep you updated on the progress; I hope it wasn't just a fluke!
As soon as we got in the car, Addie fell asleep! She was just exhausted from all the activity today!
Thanks Julien for being such a great helper with Addie's stroller and all the shopping bags today!
PROGRESS!
Chocolate cows
:)
Chris and Julien spent the day at Barber Motorsports Park today, while Addie and I enjoyed a quiet day at home without the boys. As soon as they got home, I managed to talk them into going to the waterfall in Old Town. Somehow since having Addie, I have turned into a G-I-R-L! I cannot stand the bugs and when you combine 300-degree heat and bugs, I'm just irritable (I hate Alabama summers)! Addie and I only managed about 20 minutes of playing keep the bugs away before we headed to the car while Chris and Julien waded through the water to find shells. On the way home, we stopped by Publix to buy a fly swatter for the one fly that has managed to torment us all day long. While trying to get Addie's floppy seat settled into the shopping cart, we were obstructing traffic, which turned out not to be a bad thing...Polly stopped to say hello and was so kind - she saw my Addie article and has been following the blog since! I live for moments like that! Thanks again!
Celebrating Nine Years!
My sweet girl had a very busy day! We spent the day by having lunch at one of Addie's favorite restaurants, then I took her s...
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My niece's were so excited to go see the Abby Lee Dance Company ( Dance Moms )! They were just as nutty over this as Julien was over ...
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Addie had her fourth hearing evaluation today. We saw the same audiologist that Addie saw on her first visit when she was nine days old! T...
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I branched out from the usual and ordered Addie a new style hair bow. I only ordered seven this go around and all were the standard except ...