Thursday, July 31, 2008
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.
Wednesday, July 30, 2008
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!
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?
Tuesday, July 29, 2008
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...
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.
Monday, July 28, 2008
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!
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! :)
Sunday, July 27, 2008
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!
Friday, July 25, 2008
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! :)
Wednesday, July 23, 2008
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!
Monday, July 21, 2008
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!
Sunday, July 20, 2008
For those of you who don't know my stand on vaccinations, let me give you the abridged version. I realize the tremendous need for routine vaccinations - obviously millions of people would die without them. My problem with the vaccines is the way in which they are administered and the number of vaccines that are given - seriously, since when do we really need a Chicken Pox vaccine? Regardless of what the FDA states, combining vaccines is dangerous and any parent who has sat up all night with an infant who spiked a 104 fever after receiving a vaccine knows the fear that runs through your veins. The statistics are overwhelming and with the rise of Autism and other developmental disabilities that our children are facing, it is sickening. 1 in 150 children have Autism, with white males being the most at risk. Have you sat back and taken a good long look at our children? I remember when I was growing up; there were very few children with any kind of disability. My whole point, educate yourself - give informed consent. Before you take your infant or toddler in to be vaccinated, do your homework. The statistics are alarming!!! I do NOT allow Addie to get more than one vaccine at a time. This was a battle that I fought with Dr. Dudgeon in the beginning, but won last summer. I will choose what vaccines Addie receives and I wish I had been more educated on this subject when Julien was a baby. What started my little ramblings this time??? The FDA approved a new vaccine June 2008, it is the Pentacel vaccine and I cannot believe the combination:
Pentacel, [Diphtheria and Tetanus Toxoids and Acellular Pertussis Adsorbed, Inactivated Poliovirus and Haemophilus b Conjugate (Tetanus Toxoid Conjugate) Vaccine] (DTaP-IPV/Hib) is a vaccine for intramuscular injection. It consists of a Diphtheria and Tetanus Toxoids and Acellular Pertussis Adsorbed and Inactivated Poliovirus (DTaP-IPV) component and an ActHIB® vaccine component. ActHIB vaccine (Haemophilus b Conjugate Vaccine [Tetanus Toxoid Conjugate]), consists of Haemophilus influenzae type b capsular polysaccharide (polyribosyl-ribitol-phosphate [PRP]) covalently bound to tetanus toxoid (PRP-T). The DTaP-IPV component is supplied as a sterile liquid used to reconstitute the lyophilized ActHIB vaccine component to form Pentacel vaccine.
You got all that? I hope you do before you allow it to be injected into your child. It is not required that vaccines be combined. You can request vaccines to be given separate and at any length of time apart, preferably at least four weeks and never when your child is sick. I don't like to preach often, but just be more informed...it's your childs life!
After thought...obviously, everyone is entitled to their own opinion, which is great because this is my blog and I get to say what I want to. Of course every child is different and one way doesn't work for everyone - my friend who has a child with Autism would very much agree with me, whereas someone who has never had a child with any kind of disability would never think twice about giving this vaccine. If this post saves just one child or enables a parent to make a more informed decision, then it has served its purpose.
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!