How a diagnosis of Microcephaly changed the lives of so many people.
Destructo Baby
:)
Miss December
Raise your hand
There will be no
The other night at home, I decided to let her try before her bath. I sat her on the potty and told her to go tee-tee and she did. The very first time I sat her on the new potty (just a few minutes ago), she went.
Notice I am not using any exclamation points at the end of my sentences?
I'm pretty sure that each time, it has merely been the change in temperature that has been the culprit of her success.
Regardless, she has been so proud of herself!
I decided that I would go ahead and buy her a little potty....with absolutely no expectations. Anything that I can do for Addie to help her feel more like everyone else, I'll do it.
So, I now have a green little frog occupying my potty room.
It fits right in with the rest of the decor in the bathroom...wouldn't you agree?
Well,
Happy 15th Birthday Kayla!
Good grief, I'm getting old. I remember the day of her birth just like it was yesterday.
We had a great time at dinner. My brother was more than happy to allow Addie to take as many peanuts as her little heart desired and throw them on the floor. I didn't even bother to lecture on how that may give her the impression that she could do that with any food, any time. Didn't matter, they were having a grand time!
My niece spent the rest of the night at the mall and then the movies with a friend.
Man...being 15 is tough. I wouldn't want to go back and do it over again for nothing!
Yuck
A very blessed day
I had so many people that took time out of their day today to either email me or stop me just to tell me how Addie has touched their lives.
Thank you, thank you, thank you. Your amazing, kind comments mean the world to me!
Number seven
I called Dr. Davis and they were happy to call in something for Addie. Everyone in the office was fantastic as always and so very willing to help!
This should get her through until surgery.
I was informed
How did SpongeBob go from side-splitting funny to stupid?
Time is passing way too quickly! I'm not ready to give up SpongeBob humor, that means I have to admit that my little boy is growing up.
(Yes, we did discuss that although SpongeBob is not a real "person", we still shouldn't use the word "stupid".)
There is not enough praise
How great is our God?
My little Monkey did something tonight that made me happy beyond words! I got Monkey out of the bath, got her dressed and walked over to her dresser to get her hairbrush. She reached out for the brush and proceeded...to brush her own hair! I sat her down on her dresser and turned her so that she could see herself in the mirror. My little precious baby girl continued to brush her hair over and over.
What a beautiful gift! What a sweet, self-help skill that I had the honor of witnessing tonight!
All glory goes to our God!
It's called...
It's a go!
Surgery is still scheduled for April 7th. The plan is to remove Addie's tonsils and adenoids. Dr. Davis will check her tubes as well and replace if needed.
Chunky Monkey will have to stay one night in the hospital. If she cooperates, we can go home the next day.
The surgery is a little more worrisome for me than when Julien had it done. Dr. Davis said that due to her diagnosis alone, it makes the procedures riskier.
We have a phenomenal doctor and a patient that is such a trooper. I really think all will go well.
T - 14 days and counting!
Little beggar
What a party!
The child shall not host any parties tonight. So much for the little Monkey sleeping through the night. I need sleep!
Let me retract
We were talking about our children's sleeping habits. She was gratefully telling me how her children sleep through the night and I was telling her how Addie sleeps for an hour...or two at a time.
Last night Addie slept through the night - in her very own bed.
Chris and I on the other hand woke up every hour or two. We would wake up, stare sleepy eyed at the monitor, making sure we heard a sound or saw a movement before drifting back off to sleep. Chris even woke me at one point because he was leaning over my shoulder trying to get a better look at the monitor.
We are in complete amazement. The night that our children sleep all night, we're restless.
We were awake and in full disbelief by 5:30 a.m.
I guess we just can't win!
A "Thank you" from the heart
I am so incredibly thankful for the opportunity for Addie to be featured in Birmingham Parent. It was a stepping stone for my "mission".
I am not out to gain anything or get anything from anyone per se. All I want is respect for my daughter. I want people to understand her diagnosis and not to be afraid of the fact that she is different.
Over the last two weeks we have been inundated with compliments. Strangers everywhere we go stop just to say "hello" and to tell us that they read "the article". Believe it or not, I am an incredibly shy person and I have had to force myself to leave my comfort zone and talk to anyone and everyone who wanted to take a moment out of their day to talk with me. I am honored, each and every time. I truly mean it from the bottom of my heart.
I never again want to be on the playground with Addie and have a parent come over and lead their child away by the hand just because they stooped down to talk to Addie. I don't ever want people to turn away and refuse to make eye contact because of Addie. I am willing to take the baby steps needed to make this happen.
For all of you who have been touched by "the article", I thank God. I know just how blessed that I am and I will continue to tell everyone who will listen just how God continues to work through Addie, how HE allows Addie to touch lives and bring joy to others.
Thank you...to each and every one of you.
Blessed am I
He is an amazing child.
We started the morning by taking Addie to school. When we got to school, Julien started to get Addie out of the car until I asked him if he could help carry everything inside. He got her diaper bag and walker out of the back and was more than happy to help. He helped me get Addie's things situated in her class and even took baby and settled her into Addie's cubby. On the way out of the building, Julien held the door for me and the lady coming out after us.
Next, Chris and I had an important appointment all the way out in Columbiana. Julien didn't complain about the drive. When we arrived, he found a chair in the office and sat quietly while we talked. At one point, someones name escaped my memory and he offered up the answer, then he was silent for the rest of the meeting.
Next came a stop at the post office. Julien offered to carry the envelopes inside for me and proceeded to open both doors for me. He waited patiently for our turn and even joked with the mail man behind the counter.
After a few errands, we went to see a movie. Julien once again opened the door for me. He asked me what I wanted to eat and drink during the movie and was more than happy to share with me. After the movie was over, he asked me three times if I really enjoyed the movie.
Julien helped me gather all of Addie's belongings at daycare this afternoon and was her constant encouragement as she used her walker on the way to the car. He took Addie and buckled her into her car seat and made sure that she had her snack.
Julien gave me the biggest hug and told me that he loved me as he was leaving to go away for the next two nights.
I miss him so much.
Days like today remind me just how blessed I am. My son is amazing!
First born rights
Awesome!
I love it!
Rainy day blues
Addie apparently got that trait as well.
I decided to allow her to explore her senses a bit. We made pudding, grabbed the box of Nilla Wafers and the container of leftover Christmas sprinkles and had "art time".
Addie kept asking for "more" until there just wasn't any art supplies left! Chris even cleaned up the mess for us in between putting recess lights in the upstairs hallway. How lucky am I?
It must run in the family
Tonight while I was busy straightening the kitchen, a little Monkey was busy putting everything she could get her little hands on into the refrigerator!
According
This day is actually perfect for our schedules and I am very grateful to Dr. Davis' office for grabbing that day for us!
Anything can change, but right now we are scheduled as his first case of the day.
I will find out more details at our visit on the 24th.
So they say...
Since I have no scientific backing, I'm going with a solid twenty-five. The camera adds twenty-five pounds. That's my story and I'm sticking to it.
I think my interview went well despite Monkey almost having a meltdown.
I was asked last week to be on Wake Up Alabama on Channel 42 News. Chris and Julien went with us for the interview. Monkey did well considering I woke her up almost two hours earlier than usual. I did fairly well considering I am better at writing than public speaking - on live television!
I am beyond grateful for this opportunity! Every little opportunity provides me with the means to educate people on Microcephaly. This interview was very brief. Maybe another opportunity will come along where I can provide more details and even if it doesn't, I hope that Monkey continues to touch peoples lives. Even if it is just one person. That's all that matters...just one and we have made a difference.
Although I do hope this small window leads to many doors...
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I am receiving amazing feedback from the magazine article, despite our blog address being printed incorrectly, people are still managing to find us.
I had someone call me today just to tell me how touching the article was to them. I had to fight back the tears, I am so proud of Monkey. She is so beautiful, with a heart of gold and the spirit of an angel! She is serving God's purpose!
Our little window
Please pray for me. I have an interview in the morning that is very important to me. Our gracious God is leading the way and I am willingly following!
I told only a few people about this, so for my dear friends (and family) that I didn't tell, please don't let this hurt your feelings. This is not something that I feel comfortable sharing until it is over.
I will give more updates tomorrow evening!
Wow and totally cracking me up!
Chris, Addie and I went out for lunch today. Addie was so good during lunch and (as always) was a little social butterfly. She had to say "hi" to everyone (about a hundred times) and wave at them in between bites of food. After lunch, much to my surprise, as soon as I buckled her in her car seat she got sick. Ugh...I felt pretty proud of myself for "containing" the situation and in the midst of Chris gathering wipes and a plastic bag for me, Addie got sick again. This time, not as contained. I had to strip her down in the parking lot. After we cleaned everything up, I decided that instead of risking ruining the only extra change of clothes in the car (we had more stops to make), I would put her in her car seat with just a diaper on. It was definitely warm enough.
My little creature of routine, was a bit confused on why she was sitting in her car seat almost nude. As we pulled out of the parking lot, Addie called my name and pointed to her leg. I told her that it was O.K., I would put her pants on in just a few minutes. No sooner had I gotten that out of my mouth, she called my name again and this time pointed to her tummy and then immediately to her arm! I reassured her that it was just fine, that we would be stopping soon, but she was not "just fine" with the situation. She was unnerved.
Isn't that awesome?!?! LOVE the level of comprehension! Thank God for this gift today! Oh, yes...this was a gift! Had it not been for lunch disagreeing with Monkey, I never would have gotten to experience that level of interaction with my sweet, baby girl!
I'll take every little bit that I can get, even if it involves regurgitation!
Pure relaxation!
Had Julien been with us, the day would have been complete.
Monkey was a bit on the fussy side, but it seems the time change throws everybody out of whack the first few days! Monkey found two really sweet kids to play with in the car and enjoyed their company! I'm so thankful for the nice people we encountered today!
"Home"
As I have said many times before, I talk to Monkey just as I would any other child. I talk to her about everything, still never knowing what she understands and what she doesn't. I always tell her when we are on the way home that we are "going home" or if we are out for a walk and she gets fussy, I ask her if she wants to "go home".
I think Monkey has been able to comprehend the word for a while, but she is now able to say the word..."home". Isn't that beautiful? I think it is just amazing!
Chris, Addie and I went to visit a friend last night and then made a few stops. Addie was being so good and when we got closer to home, I turned and looked at her and told her that we were "almost home" and out of her little mouth, came the perfect sound of "home".
It is quite comical because she says the word in the same way that a guy would call a girl "hot". A long pronunciation of "h", followed by a quick "ot", as in - "Man, she's hhhhot". In Addie's case, "hhhhhome".
:)
Perfectly, beautiful music to my ears!
As promised
We finally found the time to get a short video of our little Miracle Monkey climbing the stairs! This has been months in the making! I am so proud of her, she did a great job! Our God has been so gracious to us!
I would like to thank Julien for filling in as videographer tonight!
(Don't forget to pause the music - lower, right on the blog and the video is blocked at certain, unnamed companies!)
Oh, for those of you who were not around last year...it is March, yes I know. Monkey is wearing a pair of her Christmas jammies. I believe that if they still fit, then by golly she is going to wear them until they don't fit anymore! :) Also, Monkey is wearing her shiny, black dress shoes. She is, after all, a girl and black shoes do go with anything!
Aftermath
Absolutely miserable!
Addie was such a trooper during the whole process of getting her ready for the sleep study. She sat on the bed by herself while they put the leads on her legs, chest and chin. She was a brave, sweet, baby while they put the belts around her chest and tummy, but when they started putting the leads on her head, she got a little nervous. I crawled up on the bed and held her while we bribed her with puffs. When the tech started wrapping her head, Addie got upset...as she should have. This is scary stuff! The tech wrapped E.R. Baby's head too, to make Addie feel better. I was very proud of her during the whole process.
Addie fell asleep quickly after the techs were done and then nightmare on 7th Avenue began!
Addie spent the entire night tossing and turning. She got wrapped up in the wires, she panicked and pulled at the leads and she cried...pretty much all night long! It was a very tough experience for her and not too much fun for us either.
The study ended at 6:30 a.m. and they didn't waste a moment before pulling all the leads off. The doctor came in a little while later to give us the results. Thankfully, Addie does not have any airway obstructions that would add any extra concern during surgery.
Now...we just have to get the surgery scheduled and move on to a healthier baby girl!
The article
If you are having trouble viewing the article, please try clicking here.
I thought the article was fantastic! The only glitch is that our blog address is wrong!
Please read the article at your convenience. I hope it touches your heart, as it did mine.
My beautiful baby girl!
Here is the cover of the March edition of The Birmingham Parent Magazine.
If just her picture gets me this emotional, I'm not sure how much of a mess I will be when I read the article!
As of right now, the article has not been uploaded to their site.
The hard copies should be available this week, please pick up a copy if you like!
Thank you to all of you who voted for Addie! This opportunity was placed in our laps by an email from my sister and by the grace of God! This is HIS work and I cannot thank our God enough for the amazing blessings in my life!
Thanks again Kim!
Thanks for all you do for us Kim!
If anyone is in need of a great photographer, please check out Kim's website:
http://sharitphotos.com/
No way!
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