How a diagnosis of Microcephaly changed the lives of so many people.
Worn out!
Special visitors
Noah's parents were so sweet and braved the trick or treaters in order to come by and meet Monkey.
Monkey was in the mood to give baby lovings to Noah and wanted to give hug after hug!
It was so great to meet you guys, we felt honored that you stopped by to say hello!
Run piggies run!
A tremendous help!
My angel
Not ready for school
Another visit to Childrens ER
We love going in to see everybody! Addie was social and very curious (nosey). We didn't get to stay too long because we had to get Addie to school in time for lunch and nap and Chris and I had to get to work.
Of course we didn't leave the ER empty handed! Addie and Julien both got a bucket full of goodies and Addie came away with a stuffed witch. Imagine that...I think it was the over-sized nose that caught her attention. :)
Thank you guys again for taking time out of your busy schedules, it was so good to see you!
Endocrinology appointment
I don't know if Addie's behavior was just her showing her age or if there was another issue, but she was a little MONSTER in the exam room. Never has she acted like that in a physician's office...and we are in one quite a bit. Addie was crawling all over the place, pulling up on everything, laying on the floor...oh wow, was my germ-a-phobe issues kicking in. I told Chris I was trying to find my happy place and at one point, I had him just pick her up and bring her to the sink so that I could wash her hands. Can you see the chill bumps on my arms?
Anyway, Miss Priss decided to continue to have an attitude even when the doctors came in. The first doctor came in to chat and stayed for a considerable amount of time. At one point, my curiosity got the best of me and I had to ask her if they saw any other patients with primary Microcephaly and they do. HIPAA stinks. There wasn't much that she could say. At the end of the conversation, the doctor told me something that just reaffirmed what we already knew, which is that God is in control and my Addie is a miracle!
She said, "Before I came in here, I was reviewing Addie's MRI. I prepared myself to walk into the room and see a child laying in your arms and unresponsive."
I don't know if I will ever be ready to share Addie's MRI, but like I have said before, when you look at the MRI and then look at Addie, nothing fits.
Dr. Moreland came in a little later - after more drama from Addie - and I apologized profusely to both doctors with regards to Addie's behavior. Dr. Moreland advised that although Addie's growth hormone level is low, there is nothing we are going to do at this point. There is no reason to put her through additional testing or treatment unless Addie starts to lose weight or fails to gain. I talked in depth about the future and how the level may or may not affect Addie as she grows.
It was a relief to know that the low level of hormones is not anything that needs to be addressed at this time. I didn't want one more thing piled on.
We go back in six months unless Addie starts losing weight, develops issues with her blood sugar or starts having seizures.
Today Chunky Monkey weighed in at 21 pounds 3 ounces and was 30 1/2 inches tall. 3rd percentile on both.
New braces
these are much higher.
It's not easy sitting and going through samples of different colors for braces and straps, it's not like picking paint colors. I was picking the colors for my baby's braces...the braces that will go on her perfect little legs. The perfect little legs that were never supposed to walk.
Addie will have beautiful red braces, with puppies and kitties on the straps...just in time for the holidays.
Pictures of the day!
Working so hard!
A personal thank you
A hug may even be in order.
I was having a moment while we were in our local Walgreens on Sunday. I spotted the purple box very inconspicuously placed right in the middle of the Halloween candy. I mentioned to Chris that I thought maybe I should try it some time...and that some time was now.
I even offered to hold the bag when we got in the car. There really was no need to put the bag all the way in the back!
When I opened the bag, I had to try one (to make sure it was safe for everyone else - of course) and then Monkey and then Chris - Julien doesn't like chocolately chocolate (how is that possible???). I think Monkey thought she was in heaven! She kept holding out her little hand and asking for "more".
We managed to ration the bag for almost three days, but the little Monkey got so excited every time she passed by and saw the bag peeking out of my purse (in there for safe keeping - of course). She wanted "more".
I have offically turned my youngest child into an M&M lover. Whew! My birthday cakes as a child were covered in M&M's and Julien's first birthday party had an M&M theme.
Last Halloween, Monkey tried M&M's for the very first time....see the history?
So, all that to say...these things ROCK! Triple chocolate M&M's...Mmmm.
I never did get a chance to check out the nutritional label on the back of the box though...
Freezing...it was worth it.
I had Monkey all bundled up in her winter gear and turned her into a kitty with the wisk of my magic eyeliner.
Julien was out playing football with some friends, we stopped, picked him up and he was good to go as well - Number One Steelers Fan!
Monkey did fine for the first few minutes until we encountered the scariest clown I have ever seen in person (thank you Stephen King for permanently scarring me for life after reading IT as a teenager). As the clown (whom I'm sure is a very nice person) was making Monkey a dragonfly, her bottom lip started quivering and it was all over with from there. From then on, she was attached to me for the rest of the night. Julien had a great time playing while we chatted with friends and tried to stay as close to a heater as possible!
My angel
Behind
Pictures of the day!
Annual pumpkin carving
Errr
Picture perfect afternoon!
Nice afternoon
Such amazing progress!
First, Monkey has learned to wash her hands!!!!
She is amazing. I have always washed her hands for her, doing all the work, but explaining to her what I was doing. Monkey has mastered this task! She knows how to hold her hand under the dispenser, wet her hands and rub them together and then rinse them off! She was so thrilled this morning when she was washing her hands for breakfast. When we sat down at the table, I told her again how proud I was of her for washing her hands and she proceeded to show me how she rubs her hands together!
In the bath last night, she tried to grab the bottle of baby wash and wanted me to put some soap on her hands. I am so happy for her and she is so very proud of herself!
This is something that Monkey feels like she is really doing by herself, I know she is so proud, I can see it all over her face!
Second, Monkey has started playing Mommy to ER Baby.
She has been doing subtle little things sporadically, but this morning she was all about baby! Monkey has been overly attached to ER Baby lately and after she washed her hands this morning, she demanded that she have baby back. Since this was not a fight I feel is worth fighting, I gave baby back and put Monkey in her highchair. Baby was on Monkey's lap and wedged between the glass top of the table and Monkey's legs. Monkey must have thought about this during prayer, because once I told her that she could "eat", she pushed herself back from the table, grabbed baby with her right hand and tried to pull herself back to the table with her left hand. Monkey then began to eat with baby snuggly tucked under her right arm. A few minutes into breakfast, Monkey put baby on the table, grabbed a pancake and tried to feed baby. After breakfast Monkey sat with baby snuggled in her arms and rubbed baby's head and gave her hugs.
This is a milestone and an amazing one! I honestly never knew if I would get to experience this!
Monkey is so amazing and such a gift!
I thank God for these miracles and these blessings!
Just watching
That's what I'm talking about, baby!
The next game was against The Chargers and we came away with a 46-12 win (I think that's right). The game was great! The boys did fantastic and I was very proud of Julien for his touchdown and his great sportsmanship today.
Update
An odd part of baby hood. :)
Mystery solved
She woke me up by calling for me and I knew from the tone of her voice that something was wrong. Before my hands even made full contact with her, I could feel the heat coming off of her body.
103.7 isn't that high, but we all know what a high fever could do to Monkey. I don't think I will ever be fully prepared if she has a seizure.
I can't tell you how long Chris and I laid in bed just watching Monkey, making sure the motrin was kicking in and her fever was going down.
Her fever has yet to break...
Great job Julien!
Really?
Monkey isn't feeling well tonight. Chris and I had a lot of juggling going on today to fit in everything that took place throughout the day. This evening, he dropped Julien off at football practice and had to go back into work to take care of a "critical situation". I took an upset Monkey to Publix to buy snacks for Saturday before heading over to the park to watch Julien. Monkey was just pitiful. She cried all the way to Publix, not a mad cry, a sad little pitiful cry. She still had tears in her eyes when we walked into the store.
I just love our local Publix, the workers are so incredible! Monkey started feeling a tad bit better after a trip to the bakery for a cookie and most of the tears were gone by the time she finished the piece of ham from the deli. :)
We had many passersby stop and say hello...even commenting that they read the blog. Tonight was a wonderful night, everyone was so friendly and so kind! Thank you, thank you, thank you!!!
I wish it could be that way everywhere we go!
Monkey has already been up once tonight and is back in bed tossing and turning and whining. It's going to be another long night... :(
My big interview...finding the words.
The writer was amazing. She was more than happy to let me ramble and throw in bits and pieces of my thoughts throughout the conversation. She was compassionate and used just the right words, making me feel that she understood. Terminology is very important.
I wanted to mentally prepare for the interview and wanted so desperately to make sure that I found just the right words, but it was a bit harder than I thought it would be.
I think it was my emotions that interfered with my thought process. I really thought that after twenty-one months I would be able to talk to someone about Monkey and her diagnosis and keep my emotions at bay. I never cried, but it sure was a battle.
I wanted so much to tell the writer that Monkey is a miracle and that she is only doing as well as she is because of our God, because of the thousands of prayers.
I wanted so much to give an intellectual description of what Microcephaly is.
I wanted so much to have the words to help people understand the condition and to understand Monkey.
I think I said all of that and I know I threw in as much as I could about Monkey. Who she is, her likes, her accomplishments. I realized that it is so much easier to write about it than it is to talk about it.
The writer told me that I was more than welcome to email her if I thought of anything else that I would like to add before the deadline next month. To be honest, I am drawing a total blank. I think I said it all, but I'm not certain.
I prayed so hard for the right words to come. I wasn't nervous because I knew the words that came would be the right words. This may be my only chance to educate people on Monkey's condition in a more public format and I pray that this article opens if not a door, maybe a window for Monkey.
I think I am only uncertain about the conversation, because I don't remember all that I said.
Please pray that this article glorifies our God. Please pray that the writer finds just the right words to publish and please pray that this article will allow all of the struggles that Monkey endures to be used for a greater purpose.
No parties last night!
Chunky Monkey woke up shortly after I put her to bed. Instead of fighting a battle, I immediately took her to my bed and let her cuddle up with me.
Next thing I knew, it was 4:45 and time to be up and getting ready for work. Monkey slept all night long...cuddled into me, of course.
It doesn't matter where she sleeps, what is important is that she does sleep.
:)
I don't remember sending out an invitation
Last night, Monkey slept for an hour and a half and then decided it was party time for the next FIVE and a half hours! I managed to get her back to sleep for another 44 minutes before she woke back up. She didn't understand that I said it really was sleepy time.
At one point, she scooted over to her Daddy, patted him, waved her sweet little hand and said, "hi DaDa". There is no way I can be frustrated with her. She is such an angel, so pure at heart and so sweet.
I have ruled out any environmental factors causing her lack of sleep...it must just be a phase. I sure hope my body can keep up with the lack of sleep. I went to the doctor yesterday, got four Rx's and a shot. Monkey needs some rest, so that I can get some rest.
No parties tonight!
I have a very important meeting in the morning. I will give details later. Please say a prayer that I will have the words to glorify our God. A few hours of sleep tonight sure would help too.
Noah
As soon as we walk in each morning, Noah runs over and holds his arms up so that he can grab Monkey and give her a hug.
He follows us over to the sink, waits while Monkey washes her hands and grabs the paper towel for Monkey to dry her hands on.
Noah waits while I give Monkey lovins and then reaches up to take Monkey's baby. Noah takes baby over to Monkey's cubby and puts her safely in for the rest of the day.
When I come to pick Monkey up, Noah is there, giving Monkey lovins.
He runs to her cubby, grabs baby out and brings her to Monkey.
Right before I walk out the door, he reaches up for one last hug before we leave...
I pray that Monkey is always this blessed with beautiful friends who love her!
Not always easy to understand
We had a really good weekend with the exception of Julien being away. I always pray so hard for God to watch over Julien when he is away from me for the weekend. The worries weigh so heavily on my mind.
I checked on Julien tonight, he is fast asleep and home safe. I went into Addies's room to check on her and to talk with God. I can't put my finger on what happened, I don't know if it is just the relief that Julien is home safe or if it was seeing the videos of Addie at the park, waving and saying "hi" and "bye" to everyone and no one paying her a bit of attention (except one Mom who chatted with Chris and me for a while). Not one child responded to the words that my miracle was speaking...not one. Does anyone realize what would happen if Julien didn't respond to someone who was speaking to him?
Regardless of what it was, I started sobbing. I guess it's just long over due. There are times when it just isn't easy to see God's plan. I will take the pain and heartache to make certain that I am fulfilling the plan of God. I just pray that my children don't have to suffer the same pain and heartache. I know there is a will and purpose and the day will come when I understand it all.
I am so incredibly blessed and I wish others could see the life I live as a blessed life. My baby girl, standing in a walker at the park with braces on her feet is a miracle, a true gift. A gift that I never was certain I would see. I thanked God for my children many times tonight.
Music to my ears!
My beautiful Monkey had a wonderful time at the park this morning. She loved swinging and playing on the slide and she did a really good job practicing with her walker. When it was time to leave, Monkey was so proud of herself for saying bye-bye to everyone. She just melts my heart! When I hear her perfect little voice and see the twist of her tiny little hand as she waves "bye-bye", I know that I am witnessing a miracle! I don't ever want to forget moments like this!
I thank God for this gift!
(Don't forget to pause the music attached to the blog and if you work with Chris and me, you will not be able to view the video at work)
Unedited
Monkey takes a step and stops...she is so interested in all of the other children. Her personality is heaven sent! Even though other children don't pay her any attention, she still wants to wave and say, "hi"! She truly is a gift. She radiates joy and love. I am so incredibly blessed!
No background editing available...you even get to hear me...the worrisome Mom.
Congratulations Suzanne and Anthony!
The wedding was beautiful and so was the bride! The weather was outstanding for a fall wedding and everything went perfectly!
26-6
What kind of a Mother would allow something like that to happen?
So here is this Mom who has rushed from work to daycare to home - to grab football gear and a pair of jeans - then rushed to after school care and on to football practice.
This "Mom" sent her son out to the football field while she sat in the car, changing a diaper, feeding a Monkey a snack, watching her son practice football, reading her Monkey a book, playing ball with her Monkey, playing with Monkey and her musical pup-pup and trying to make the time pass because the ground is soaking wet from a constant rain throughout the day. Would it have hurt Monkey to crawl around on the wet ground? No, of course not, but it is Friday evening...after a long week. So, this "Mom" entertains her Monkey and watches her son play football.
Monkey sees her brother and Monkey sees her Daddy. Monkey sees the boys running and playing and Monkey sees the other Mommy's and Daddy's walking by. So what does Monkey's Mommy do?
It is such a beautiful, cool, fall afternoon, so Monkey's Mommy has the sunroof open and decides that Monkey can look out through the sunroof and say "hi" and "bye" to everyone! Not only can Monkey say "hi" and "bye", but Monkey cane WAVE at everyone! Monkey is so happy and on top of the world as she has her head, shoulders and arms out the roof of the car saying "hi" and "bye" as we sit in the car in the church parking lot.
Monkey's Mommy laughs so hard as Monkey giggles with excitement at her newly found words and the way her little tiny hand twists as she waves to everyone coming and going.
Monkey's Mommy is looking at Monkey's little hands...trying to comprehend how Monkey's little right hand has gotten so dirty...oh no!!! It's not dirt, it's blood!
Monkey's Mommy softly grabs Monkey's hand and lowers her onto Mommy's lap in the seat of the car. Monkey's Mommy grabs a wipe and slowly wipes her hand clean. There, right there, on Monkey's little tiny right thumb is a cut. The cut is no doubt from the bar that goes across the top of the car in front of the sunroof. The cut isn't deep, but is bleeding more than Monkey's Mommy is hoping for.
Monkey never cried...???
Monkey's Mommy applied pressure with one hand, while retrieving a boo-boo band-aid with the other. Monkey doesn't cry. Monkey's Mommy sanitises Monkey's little tiny finger and applies the band-aid. Monkey investigates the boo-boo band-aid as the blood soaks through. Boo-boo band-aid number one slips off as the blood continues to flow.
Monkey's Mommy applies more pressure, clearly investigates the wound, applies more pressure and waits. Still bleeding. Monkey gets boo-boo band-aid number two. Uh-oh, here comes Monkey's Daddy and brother! Boo-boo band-aid number two slips off Monkey's little tiny finger. More pressure is applied to the wound and off to dinner we go.
As Monkey is sitting at dinner, nibbling on a cracker, her boo-boo begins to bleed again. More pressure is applied by Mommy and then Monkey's brother as Monkey's Daddy goes for boo-boo band-aid number three. Boo-boo band-aid lasts through the first ten minutes of dinner while being soaked by corn on the cob juice...next thing Monkey's Mommy sees is boo-boo band-aid number three flying across the table and narrowly missing the bowl of sweet potatoes. Whew!
Boo-boo on Monkey's little tiny finger is still bleeding. It is wiped, pressure is applied and then as Monkey holds her hamburger bun in her little tiny hand, the bleeding slows and then stops.
Monkey has a boo-boo and she never even cried.
Now, what kind of a Mother would subject their child to something like that?
A little well deserved advertising...
Loading Dock South is owned by an amazing family who takes pride in their business.
Chris and I were frequent visitors to their warehouse when I was pregnant with Monkey. There is nothing like being swollen, fat, nauseous and miserable while shopping in a warehouse for crown molding, doors and antique windows. I promise I probably would have thrown a tantrum had it not been for the kindness of the owners of Loading Dock South.
The owners offered me as many bottles of water as my swollen belly could take and they were extremely knowledgeable and very willing to help. I remember very clearly the moment when I thought my pregnancy induced insanity was going to snap on Chris over whether or not the door that we were debating over was going to fit downstairs in the bathroom. All of a sudden, the owner intervened (bless him) and immediately told us exactly what size door we needed and that he would be more than happy to exchange it if it didn't fit. He may have single-handily saved my marriage at that moment!
Chris and I haven't been to the warehouse since Monkey's birth. As most of you know, after all of our hard work on our house, we put it on the market soon after Monkey was born. We now have a new house that is just waiting for lots of projects to begin...as soon as life settles down a bit.
If anyone is in need of some materials while working on your DIY projects, why not shop locally?
I can't imagine you not getting the service you deserve at Loading Dock South!
Neat
Monkey's first trip to the dentist!
Flu shots
Everyone knows where I stand and since flu season is upon us, I had to make the decision on whether to get the flu vaccine or not.
Chris and I can get the vaccine at work and I took advantage of that opportunity because I can't imagine my life being put on hold for a week or two if I came down with the flu.
Then I had to decide about my children. Do I allow some foreign substance to be injected into their bodies or do I risk a horrible sickness that could end in death?
When it is phrased just so, it is easy to choose the former over the latter.
I made the appointments and took Julien and Addie in this afternoon. After two years of allergy shots, Julien is a trooper with shots. I reminded him that it would be no different than an allergy shot and in fact, he is the one who asked me last weekend when I was making his appointment to get the vaccine. :)
Julien went first. He rolled up his sleeve and as soon as Addie saw the needle, she started whining. I told her that Julien was okay, it was a quick boo-boo (Addie understands boo-boo, so I use the term for vaccinations, bumps, etc..,) and he would be all better. Julien didn't flinch, got his band-aid and then it was time for Addie's vaccine.
I sat Addie in my lap (because you all know I refuse to lay her down on the table), rolled up her pants leg, told her to hold onto baby and that she was going to get a boo-boo. She didn't take her eyes off the nurse as she wiped her leg with the alcohol wipe and brought the needle near. Addie watched as the nurse inserted the needle into her leg and injected the vaccine. Addie watched as the nurse put her boo-boo band-aid on...Addie never whined or made a sound.
I can't figure it out. I don't know if she is just that use to being poked and prodded...or what. Whatever it may be, my two little ones are now officially vaccinated (hopefully) against the flu bug.
You know I have been watching them both like hawks tonight. Just to make sure they are fine!
As I was laying there
Why?
Somewhere in my dreams or in a deep place back within my mind, Julien wanted to enlist in the military.
What hit me in that moment was that I cannot begin to comprehend how a Mother sees her child off to war.
The military life is beyond difficult. My father was a World War II Veteran, my eldest brother is a Vietnam Veteran, my youngest older brother is a Desert Storm Veteran and I was married to the military. I support our troops and feel honored that our freedom and lives are protected by those who serve in the United States Armed Forces.
Yet, I was having an imaginary conversation with my nine-year-old son at 2:30 this morning, discouraging him from choosing the military life.
I don't know if it is the media that placed these thoughts in my mind, a dream, a fear of where this election is taking us and what will become of our lives and country in another nine-years or if it was the pack of Reese's Pieces that begged to be eaten right before bed last night. All I know is I have the conversation all planned out...just in case Engineering School doesn't look so appealing nine-years from now.
Monkey got in trouble!
Apparently Monkey got in trouble today.
She has been pulling on her friends shirts and making them fall to the floor and has been a bit aggressive when she doesn't want to play. I know that Monkey is rotten to the core, but I also think that part of her behavior is because she is just so frustrated. Everybody else is walking and running around and I think Monkey wants their attention or either wants to be "up" and doing what her friends are doing.
Maybe she is just being the class bully...who knows. She can't tell me. :(
I reiterated to her teachers that they are to sign "no" and to tell her "no" when she does something wrong and to explain to her what she is doing wrong...in great hopes that she understands.
Monkey is being just that, a little Monkey and by golly, she is going to make sure that SOMEBODY is paying attention to her!
She is acting like a "typical" twenty-one month old. Do you realize what a miracle that is?
My deepest apologies
I should go ahead and apologize now to all the parents of the children in Monkey's class at daycare.
Monkey's teachers are so sweet and decided to wait until Monkey got to school from therapy before allowing the class picture to be made.
Well, there was really no need. Monkey is teething and when I say teething, I really mean, morphing into a demon with horns and fangs!
When Julien and I brought her into class this morning, I totally had her out of her routine. We have a set routine when we walk into class and it makes for a much easier transition for Monkey.... (insert excuses here)
Anyway...Monkey screamed when it was time for the class picture. All of her friends were sitting or standing nicely and waiting oh so patiently for Monkey to stop screaming. A few of the boys kept trying to give her hugs and kisses to calm her down...that didn't work.
To make an embarrassing, long story short:
That precious class picture that most toddler parents would love to cherish for the rest of their existence was flawed by the screaming, red faced, tantrum of a little Monkey.
Maybe you all can just Photoshop a smile onto Monkey's face and scrapbook away...
A miracle is a miracle...no matter how small!
Celebrating Nine Years!
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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 ...