"One year ago, the mountain ahead of us seemed so high.
Now, as I look down from a plateau, I marvel at the beauty I didn't expect to see.

One year ago, I was so scared about what the future held for you.
Your problems only had a name, now I see only your precious face.

One year ago, I didn't know how blue your eyes would be.
Now, they sparkle and dance back at me as we adore each other.

One year ago, I listed my requests to God about your birth, health, everything.....
Now, I smile as I realize that He answered every single one, big and small.

One year ago, 'normal' life seemed a thing of the past.
But this summer, we came 'full circle' as we introduced you to our summer fun.

One year ago, our family wasn't complete.
Now, your chubby little hands hold ours.

One year ago, they told me that you might not be okay.
Now, I proclaim to the world that you are just perfect.

One year ago, you had a name but we didn't know who you were....
Now, I watch in awe as you grow and touch lives just by being you.

One year ago, I couldn't imagine this day. I could hardly imagine how we would get
through that first week. Now, we're here and I'm so glad we're not back there.

One year ago, I had no earthly idea how hard this year would be.
Now, I thank God for carrying me while I carried you. We made it, sweet baby."

Since my daughter's first birthday just passed, I found that fitting to post. I'm not sure where it came from (it was sent to me by my mother), but it fits our lives perfectly. I bawled like a baby when I read it. I love how it says "we made it, sweet baby". We have a long journey ahead, but if we can make it through those first few weeks of finding out her diagnosis, we can make it through anything.

She had her nutrition appointment yesterday and her granny, aunt and cousin came along (along with her usual fan posse -- me, Mike and Kalen). They weighed her and got 16 pounds 2 ounces which is 7 ounces lighter than what her pediatrician office weighed her at, so that was hard to take. She was also measured as not quite as long, but I forgot the exact measurement. Truthfully I think I tried zoning out after seeing she weighed less. I'm sure it's just the difference in the scales, but darnit 7 ounces a lot for her.

We found out she is off the scale for "normal" growth. No more 3rd percentile. The dietitian said we won't even think about a g-tube until we exhaust every other option. Right now she's on a higher calorie diet and then we'll be weighing her again in 7 weeks. I feel a bit discouraged, though, because she isn't taking to table foods all that well. She's so used to her baby food and tries to swallow it down before chewing. She also doesn't like feeding herself. If I put food on her tray, she either swipes it off onto the floor or she picks up each piece and tosses it. I also hate how guilty I feel for pumping my baby full of fattening foods. Who sticks a tablespoon of butter in their baby's oatmeal?! I know it's necessary, but man do I struggle with it.

I'm praying with a bit more practice she'll get the hang of it. She'll be seeing genetics next month so I'm curious what they'll have to say.

I got all my school shopping done for Kalen. Now to just sit back and wait for school to start. I'm excited for him. :)

This Month a Year Ago...

Has it really been a year already? Looking back at when she was born, I could hardly imagine her being six months, let alone a year old. I thought, "there's plenty of time before even thinking about that!". It has truely gone by so fast.

We had her birthday party July 14th, and it was so much fun. I was a bit worried because she hadn't napped as long as I hoped she would before her party, and I figured she'd be one grumpy grouch. She was quite the opposite, actually, but that shouldn't surprise me. She typically does things opposite of what most people expect of her!

I went with a Hello Kitty themed party. I've always loved Hello Kitty, and since she's too young to pick her own party idea I figured I can get away with it. Here's a few pictures of the decor...

Next was her cake. Luckily, for first birthdays they give you a free 7 inch cake that matches the main one for the baby to dig into. They turned out really cute!



This was the main cake.

Along with Madison's own mess cake to play with and eat!

Her cake didn't stay pretty for long, but we'll get to that in a minute. It was a small party, which made it a bit more special if you ask me. I liked celebrating with close family who love her as dearly as her mom and dad does. She's one lucky little girl.

Here's a few of the birthday girl!

This is her with her cousin Violet. Poor Violet looks like she's being sit on, but I assure you she was fine!



Now on to the goodies! Kalen helped her open her gifts. He's such an incredible big brother.

Madison with her first present. And YES she started digging in by herself! (She wanted the paper so she could eat it, but lets just continue believing she was REAL eager for her present!)

Sissy and her brubber. That was the present he got her. It also became one of her favorites!

Pretty baby

                                               Kalen showing her the new onsie she got!

Digging in!

Gift from Aunt Jenny (also one of her favorites)

We loved this gift because not only does it have rails around it to guard her from falling off, you can remove them when she gets a bit older. You can also attach a handle and take her for a walk on it. How cute is it?!

Blowing out the candle!

On to the messiest part of the day. I'm pretty sure she could win an award for Most Messiest Cake Eater...

Starting off...

Getting worse...

And worse...

Nice, huh?! She had icing from head to toe

The aftermath...

She required a double bath that night. We had to take the highchair out back and hose it down. It was so bad! It was worth every bit of it, though. I wasn't too sure that she'd touch the cake, let alone do that.

The very next day (I know, I know. We had to go right after her first birthday celebration. So unfair.) she had to go to the doctor for a 12 month check up. It unfortunately included shots. I debated for weeks if I should postpone the MMR. I was terrified of a bad reaction. She never had a reaction from a shot before (besides fever and soreness), but for some reason this one had me on edge. I'll admit that it was mostly because of all the controversy involved with it. We decided that it was best to go through with it in the end, though. We don't know how strong her immune system is, and if she did catch measles or mumps, I'd never forgive myself. It was hard enough to come to that decision, but with my luck she started to have an almost immediate reaction to it. You can imagine how upset I was. I kept saying "I tried to make the best decision for her, and this is what happens". It was a bit of an overreaction, though, because she was fine. Where they had given the shots her legs had developed some welts. We had to stay a bit longer than anticipated to ensure that they wouldn't spread. She turned out fine, and they went away within hours. She reacted better to these shots than she has any others. No fever, no agitation, no soreness. I was very surprised, because I anticipated a few days of sickness.

We got some good news while there... she had gained 9 ounces in a 3 week period! She also gained about another 1/2 to 1 inch in height. That's such a huge relief. She still will be seeing the nutritionist on the 28th of the this month, but she has now been switched to whole milk versus formula. I've also upped her food intake as well and she has been handling this very well. I'm ready to get a few more pounds/inches on my girl!

Other than the nutritionist, we won't be needing to see anymore specialist for a while. She goes for a routine check up with her geneticist in September, but that's all for now. Phew. She has been doing incredible. She's still not walking, but we're working towards that direction. She's refusing to crawl (she rolls or pushes with her legs while on her back to get where she wants), but her PT thinks she may just be one of those children who never crawl. We shall see. We'll just continue to let Maddy be Maddy.

On to the other utmost important part of my life... Kalen starts kindergarten August 16th. Seriously? My first born is in kindergarten?! I'm so proud of who he is as a person. I've been so blessed. I truely couldn't ask for better kids.

His birthday is in October, so that's the next celebration we're preparing for. I'm pretty sure he'll want a Ben 10 themed party, but that could change by October. I can't wait! I definitely enjoy this stuff as much as he does.

I'll be updating on her nutritionist appointment and hopefully on some weight gain! Wish us luck!

No Longer a Baby

It's been awhile! I apologize. I'm ashamed at how bad I am at regularly updating this blog. Lets get on with the updates...

Madison has gained in both height and weight! Two months since scaring her parents and her doctor, she gained over a pound and an inch and a half in length. We're still scheduled to see a nutritionist on July 28th, but thank God she finally had a grow spurt!

Her EEG came back completely normal. I don't believe she ever had a seizure, and neither does her ophthalmologist. It most likely was stress induced nystagmus. We have only seen the eye movement happen once since then, and she was sick at the time. It lasts at most a minute. Luckily he doesn't feel it's anything to worry about at the moment.

NOW! I'm going to add some updated pictures. It's been way too long...

Madison starting her summer off right!

         I made her this tutu. Her grandfather (PaPa) took the pitures.

Beauty queen!

                                                   This was taken a while back, but I love it.

Maddy is now not only sitting on her own (accomplished at 8 1/2 months), she is now getting into a sitting position (accomplished at 10 months).  She loves standing with support, and can hardly wait to take off and walk. Her physical therapist thinks it will be a while yet, but with Maddy you just never know. Speaking of her physical therapist, she's great! She comes to see her once a week and Maddy has made great progress.

She turns one on July 13th, nearly just two weeks away. I'm not ready for her to be one. It has gone by way too fast. I'm so proud of how far she has come along.

I believe that's all that's new. I'll update soon... hopefully!

Nystagmus Amongst Other Things

A new pediatrician saw Madison today, and something he said tickled me: "You know more about her diagnosis than I do, and I'm the doctor!"

I couldn't help but smile at that. I think it's because it's really nice for a doctor to acknowledge that you may know more about your child and their specific needs then they do sometimes.

There has been several new happenings with Miss Maddy. First we'll start with her CT scan results. It turns out she has an enlarged vestibular aqueduct in her right ear (the ear with hearing loss) and the other ear is perfectly fine. Basically we need to make sure she doesn't get big blows to the head from things like contact sports, no riding on an unpressurized airplane (like we would anyway!), no deep sea diving, etc. because then she could lose hearing in her right ear completely. It can mean a progressive hearing loss as well, but the doctor is pretty confident that won't be the case for her. Overall, I was content with the results. I'm thankful we have an answer to the hearing loss and won't have to do further testing (other than routinely monitoring her hearing, of course).

We were told by her pediatrician that she wanted to start testing  for growth hormone deficiency as well as thyroid problems. We took her the next day for the blood work, and we had the results within 24 hours. As odd as it sounds, she has a HIGHER than normal amount of growth hormone     and no problems with her thyroid. Make sense? Not really. Not to me at least. She hasn't grown in length in 3 months. Our next step is to up her calorie intake and monitor her growth in a months time. If she hasn't grown after that, she may be getting a G-tube.  I'm new to the concept of G-tubes, so I'd be lying if I said I wasn't nervous. All in all, I just want my petite girl to grow. I'll do what it takes.

Last but certainly not least, we had a scare the other night. Madison was on the floor playing yesterday when I walked over to pick her up. Her eyes were involuntarily moving from side to side at a fast pace. I knew she couldn't control them and it scared the living crap out of me. I automatically assumed it was a seizure. That may seem silly, but truth is I've never seen one in person and really had no idea what to look for. All I knew was it could sometimes affect the eyes. She wasn't limp or shaking and she was responsive, but once again I didn't really know to look for that. We took her to the doctor, and he feels like it is nystagmus (involuntary movement of the eyes) which is pretty common with 18q-. We'll be going to a neurologist on May 5th anyway to rule out seizures, and we go to an opthamologist on May 6th.

That's pretty much it! We finally got her physical therapy scheduled, and she has her first appointment on the 26th of this month. Yay!

I keep updating these post with no pictures! That'll be next! :)

Thank You For It All

I was a devoted Christian from my early childhood until my late teen years. I gave my heart to the Lord and strived to live my life for Him. I wanted everything I did to reflect His word and I dedicated my life to this. I felt His love and grace at all times and through Him I saw this world in a completely different light. That feeling... it's something not of this world. It cannot be recreated without Him. When I've been asked how I know He exists, I think of that feeling. It's warm, full of love, and it radiates in every part of your being. It's a hard thing to explain, but when you feel it you cannot doubt Him. I spent hours dreaming of His plans for me. I had no idea what they were, but I couldn't wait to find out.

I went through a few years where I backslid into the world and my natural ways. I'm so very far from perfect, and I guess you could say I went through a rebellious stage. I hated who I became, but once you're there it's hard to come back. It's easier to live that way, lets face it. We're born sinners, and it's a struggle to stray away from it. 

Then there was Madison. My silly little bunny. I never in my wildest dreams thought that what I have gone through with her would result in me kneel bent in front of God asking for His grace. I always saw myself rededicating my life, but I figured it would be in church during a Sunday service.

When I first got the news of Madison's diagnoses, it was the worst state my heart has ever been in. I was completely and utterly broken. It's shameful that it took me to come to my weakest point to ask His forgiveness, but I serve a forgiving God. I'm so thankful for that. All of the sudden it was as though the weight had been lifted and I had strength.

I have that feeling back now. That happy warm feeling I missed so much. I have days where I feel discouraged and lost, but in my heart I know without a shadow of a doubt that He's with me. I don't have to be afraid anymore. I don't have to worry about my daughter or any other aspect of my life because He has taken that burden from me. It's in His control, and I trust that.

I need Him. I don't deserve it. I'm not worthy of it, but thank you, Lord, for your undying love.

I'll never be able to successfully put into words how thankful I am. Years ago when I dreamed about His plans for me this never came to mind. I didn't think it would involve heart ache and so much struggle, But thank you, God, for it all. She's alive, and she's happy. There are so many others with far less than what I've been given, and I'm blessed. So blessed. This is part of His plan. She's part of His plan. He's got something in store for my whole family and I can't wait for the journey.

Thank you to my beautiful daughter for helping me see this all. Without her, there's no telling where I would be.

"You are my strength
My shield, my portion, deliverer,
My shelter, strong tower,
My very present help in time of need."

1 am Blog Post

It's 1 am, and the only thing that appeals to me at the moment is writing. Sleep is just not an option. I love night time. It's hard to just give in and go to sleep sometimes, regardless of how tired I am. There's something about the quietness of night that I love. It's my time to reflect and make sense of whatever is floating around in my head. I'm not too successful at doing that with an 8 month old screaming just because she likes the noises she makes and a 5 year old who likes to play the question game. I love all that noise and chaos, don't get me wrong, but short periods of silence help keep me sane. I'm rambling. Moving on...

Madison had her evaluation with early intervention a few days ago. Not much is new there, other than she'll definitely be starting physical therapy soon. That's a huge relief to me. 

She caught a cold yesterday and has been fighting a fever since. It's low grade, so no big worries. Just hoping she fights it off soon. I always hold my breath when she catches a cold because not too long ago she had RSV, and that whole ordeal was quite worrisome.

I'm getting a little nervous about the CT scan. I hate when they have to sedate her. Not to mention how long she has to go without food beforehand. For her ABR, we all waited in the waiting room for close to an hour while she had her test. When they called us back, we walked in and her and the nurse were playing peekaboo with her blanket. You would have never guessed she was just sedated. I thought, "look at that little stinker having the time of her life. And I was worried!". I guess I should just keep that in mind.

Anyway... I suppose I should try to sleep now! Goodnight and thanks for reading this pointless post. :)

Update!

Wow! I apologize for how long it's been since I've written. For some reason I've never been too good at keeping up with these things, but don't give up on me yet!

Little miss Maddy Moo is sleeping in my arms and I'm having to type this all out on my phone (one handed might I add!), so forgive me if it's short but sweet.

Our little princess is doing great!   As of February 21st she weighs 13 lbs 11 oz and she's 8 months (7 months at the time of weigh in). She has been trying her hardest to sit independently and crawl, but low muscle tone has been making it a challenge. She has her second evaluation with early intervention on March 17th to get her started on some physical therapy. She manages to get certain distances on her belly, but it's a challenge for her to push up with her arms. She can push up some, but gets tired fast. She's able to sit up, but for short periods of time. She'll get there!

She had her ABR last month. Her right ear has mild hearing loss, and the left has perfect hearing.  We have a routine CT scan scheduled for April 8th, then possibly an MRI after that. 

Her growth has been okay. She's within the lower normal range, but nothing that concerns her doctors. She's our pretty little petite baby.

This little girl is dying to become mobile. She's busy all the time with her hands, and she wants to be busy on the go as well. Her favorite thing to say (and repeat over and over!) is "dada" or more commonly "dadadadadada". I've been trying to teach her to say "mama". She tries her hardest. She'll watch me as I repeat it over and over and what comes out of her mouth is something similar to "maaadadaaa!".

She's as happy as a baby could possibly be. She's curious about everything around her. I absolutely love watching all the new things she learns on a daily basis. 

I'll update again soon! Most likely after her CT scan, but possibly before. Thanks for reading!