Stronger Every Day

Our little Pip is growing stronger every day! She is crawling now, and will even sometimes pull herself up on her knees to play with her sisters and brothers. She just doesnt want to miss a beat!! We plan on taking her to her first ocean trip this coming weekend. I cant wait!!! ''

Sarah is turing into such a little princess, her daddys little girl! She's into following him around saying, "I wuv you daddy", "I wuv you daddy"!!! What a stinker!

Aaron is in the whoa-theres-the-twos-we-were-warned-about stage! Everything to him is now a resounding, "NO!"

Little Man, Big Plans

Jake. He is so the man! He's constantly bringing humor to the house without missing a beat. Even if things are less than happy here, he finds a way to make us laugh. Jake- you are awesome!!!

Holland, here we come!

Another mom shared a poem with me during one of Aaron's 'vacations' at Hopkins, its called Welcome to Holland by Emily Perl Kingsley. Rob and I had forgotten it long ago as Holland has become a distant memory to us. Aaron's health is wonderful, and despite his occasional desats, and tachyapnea he is a normal little guy.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.



Our little Charlotte Faith has reminded us that Holland is still on our itinerary.

For the past week or so Rob and I have read the report over and over. Hoping that it would change, maybe we missed something in reading it? Maybe her lab work was mixed up with another child, maybe somewhere along the line there was an error of some sort? However, we do realize that there are no mistakes. None in the lab work, the reports, no errors. There are no mistakes...she is perfect, and we are so very blessed to share every day with her.

Charlotte has something called an Inborn Error of Metabolism. Her body doesn't process cobalamin (vitamin B12) like it should. Because her body doesn't process cobalamin like it should, an organic acid called methylmelonic acid builds up and can cause damage. The genetics, neurogenetics and neurologist all agree at this point that she has an Inborn Error of Cobalamin Metabolism, but we will need to wait on further lab work to determine what type exactly it may be. They believe hers to be type cblC, cblD, cblF or TC2. What type it is will dictate the course of treatment, but more than likely it will be a combination of watching her closely, supplementing certian medications, and dietary changes consisting of low protien, and high carbohydrates.

We've been told that some of the complications are developmental delay, mental retardation, vision problems, stroke, and multi-system organ failure to name a few. Well, we were also told our Aaron would remain on his g-tube for at least 5 years...guess who just fought me for Easter candy tonight? You got it...my Aaron...the one WITHOUT the g-tube!! (I'm not against feeding tubes, for any tubie parents that may be reading. They are lifesaving But I am thrilled our doctors were wrong in stating he would need one for the long term) We are going to remain positive, and expect a good report on our next follow up on Thursday.

We're on our way...

So tomorrow is going to be a busy day for our little bippy. We have a 'date' at Hopkins from 10am to 3pm...hoping to get some answers from the neurologist as to why bippy is having tremors and not developing as she should.

We did get a preliminary diagnosis from genetics: Inborn Error of Cobalamin Metabolism and Mitochondrial Disease. Still waiting on the SNP to comeback and hopefully that will tell us more.

A proud Mama...

This past weekend Grace competed in a tournament in Pennsylvania. She did an outstanding job! We are all so very proud of her, not just for how well she did, but for how much effort she put into doing her very very best. Way to go kiddo!!!

We sadly had to put our beloved fur baby to sleep this week. Belle was an angel with fur, but was beginning to suffer from the effects of old age. It was getting to the point that it was the best choice to let her go into our heavenly fathers arms. I'm sure she'll keep the welcome mat of heaven toasty warm until we get there to meet her again.

And we spoke with the Genetic advisor today... a whole lot of nothing to tell. Chars lab work was askew again, but we still don't know why. The good news is that the metabolic errors they tested for were all negative. Her methylmelonic acid however, is still too high. The first lab showed her at 58, and this last test had her at 429. Obviously not such a great number as the normal is under 6 for her age group. We are still waiting on the chromosome testing to come back. We see neuro for another CT scan and an EEG in a few weeks. Until then we wait.

Longest week ever!

This week is dragging.... I need some answers with my baby girl. Its really weighing heavy on Rob and I both. We can see there is something going on just by looking at her, she has no muscle tone, in addition to other things. She is ours, we love her no matter what, but something isn't right. We put a "full size spare" on her head to make her giggle...well, she didn't, but we did!

And the race is on!

This week has been a whirlwind of activity here in the Luce house. Grace had her honor role breakfast on Wednesday morning. Which was a lot of fun by the way! I cant being to tell you how proud I am of my sweet baby girl, shes amazing. Aaliyah got her ears pierced this week which really made her happy.Shes wanted them done for quite some time, so finally we let her. Jake turned seven this week! Where on earth has the time gone?

Our sweet Charlie is doing good too. We found out that she loves ice cream! She sat on Daddy lap and ate almost an entire ice cream sandwich herself!! She has and appointment with physical and occupational therapy on March 1st and we will start therapy soon after that I hope. Hopkins is able to get her in with genetics on March 12th so we are hopeful that appointment will yield some concrete answers.

Hey mama!!

Yesterday my little Aaron gave me a well needed smile. While watching some television with the kiddos, Aaron hopped up on the sofa with me. He looked at me with a smile and then plopped himself right next to me, he threw his leg on mine and said "oot, oot" (that's Aaroneese for foot). That little stinker wanted me to rub his little foot! He kept on and on until I tickled his little stinky 'oot'. I needed that smile!

So our little Charlie-bird.... she's as happy as can be, a little gem we love so much. She's started chewing on her hands, and considering she hasnt until just a few weeks ago this is wonderful news! She's smiling and doing things a baby should do. We did get in to meet with her pedi and the news wasnt exactly what we expected. We were expecting her amino acids and organic acids to come back fine. They did not. At this point we do not have a concrete answer, other than something isnt quite right and we have a few ideas of what it could be. Right now things point to a mitocondrial disorder. We have a referal to see a genetics physician at Hopkins, and it looks as though we will be able to get in a little sooner than we initally thought. 



Handmade

For you created my inmost being;

you knit me together in my mother's womb.

Psalm 139:13

It's amazing to see how our little ones are each so unique and have their own individual personalities. Each one so different, but all a masterpiece knit together by our heavenly father himself. I could have never imagined being so blessed just once, let alone six times over! Thank the Lord for filling our house!

Tomorrow we meet with Char's doctor to 'talk' about more lab work and to weigh her and check on her growth. Last week her doctor suggested we meet with an endocrinologist if nothing has changed. Rob and I selfishly are more content just letting her grow at her own pace. I dunno... we really don't want anymore bad news. We are so thankful that Aaron has overcome and adapted, but enough is enough already. We haven't shared much of whats going on with Char with anyone other than she just isn't growing like she should. We need time to find some concrete answers, and time to digest everything as a family. Right now, we're going to focus on knowing that God created her and knit her together as perfect as perfect could ever be. 

Stepping Back from the Cheerios

Taking a minute to step back from the mess of half chewed strawberries, cheerios and animal crackers I looked at my kiddos and thought about how blessed I am to have them. The homework, messes, piles of dirty clothes, countless toys, stock in huggies, giggles, and I love yous are a constant reminder of how dull our lives would be without children. Because after all, children are a heritage.

We have a preliminary answer on Charlies growth. Her pedi is calling it Constitutional Growth Delay. Right now she's a hefty 12lbs and 23.5 inches tall! Yay for growing! She's healthy, happy and all of her lab work so far looks good. We're still waiting on the amino acid thingy and the organic who-knows-what, but her pedi doesn't expect there to be anything abnormal, more just a matter of ruling out those things. We love the little bippy and I guess this means we can snuggle out little one a little longer than we thought :)

Suprises Every Day...

Tomorrow we find out why our littlest little is staying so little. They suspect her thyriod levels and hormones are playing into the lack of growth but we arent sure. We will meet with the doctor in the morning to get some solid concrete answers. We pray those answers are simple and easy to adjust to. We are keeping in mind that the smallest things in life often bring us the greatest joy!

New Year, New Begining

It's been a while since Ive last posted, I'm hoping that this year I can keep up a little more with posting and updating. Life with six little babes is pretty time consuming as you can imagine.

We're praying and believing that 2012 will be a good year. We are looking forward to good news, and happiness for our friends and family. The kids are off to a great start in school, and their attitudes are great. They have their days, but for the most part they are happy and easy going.

Aaron is continuing to thrive and grow, with no more 'seizure' like episodes so far. His oxygen sats have been just where they need to be, yay!! He's even started to talk a little...so far his most frequent word is "ME!!".

Grace is doing so good in school, it makes me so happy to celebrate her successes with her and see her grow. Her kindness and gentle heart really warms my heart. She'll be a teenager in just a few months, good lord where has the time gone!!?

Ali is a free spirit. She doesn't let anything or anyone stop her from her goals. I'm so proud of the little lady she is becoming. So consistently shows her little sister love and patience.

Jake...well, he is growing into such a neat little man. He is so stinkin smart, he amazes me every day!! And he loves his brother!

Sarah is a joy to be around. She fills my days with comic relief and with her there is never a dull moment. Shes her daddy's little girl, that's for certain.

Charlie is growing like a weed(see the difference!!). She is starting to like to play with us, her bouncer seems to be one of her most loved toys. Although shes still nursing, shes started solid foods and is eating like a champ! Steak and taters for her soon!

And with a new year brings new beginnings.... its time for us to get on a better eating plan. I was diagnosed with a Lap Band slip in December which we had planed to work through by going to liquids for about eight weeks. Luckily, what we believed to be a slip wasn't a 'slip' but a mis-read Upper GI Series. The radiologist who read the UGI was not familiar with the Lap Band procedure and shouldn't have made the diagnosis he did. The problem is a simple one, and one that is easily remedied- a, enlarged 'pouch' above the band. I need to eat less more often and make better food choices. So, I found a simple way to get that done... its called Diet to Go  It's a meal order service that prepares meals according to your specific needs. How ingenious! I'll keep you posted on how it goes.

We are so blessed with our little ones, each one unique in their own way. I do worry about my Aaron, and this week even more so. Things had been going very... but we have a few issues to address now. From where we've come, it's just a small hurdle to overcome, but scary. Please keep Aaron in your prayers, that things will be well.
My soul is weary with sorrow; strengthen me according to your word.
~Psalm 119:28

Meet our newest family member...

Meet our newest family member; Midnight.  Our eight week old fur baby is a Great Dane and bull mastiff mix, a ‘daniff’. Our sweet Aaron might need a hand (or a paw) with mobility at some point, so we are hoping to teach Midnight to assist. She has a wonderful personality; she is playful, loving, and eager to please. Although she is a little playful right now, I’m confident she will calm down a bit as she matures.

I’m thrilled that my oldest daughter Grace is doing so well in school! We had been homeschooling but for many reasons decided to return to traditional schooling. She is really doing awesome, at times helping her peers with their work as well. Way to go, kiddo!

The kids all had promotions in taekwondo a few weeks ago. It’s amazing how quickly they learn! Rob and I tried class for a few days and wow, we were challenged!  Rob is going to stick with it for sure, but I’m not too sure I will. I would really like to try, but I’m not sure I can keep up, lol.

We are all heading to the pumpkin patch this weekend for a family trip to do some pumpkin pickin’ and hay ridin’ and scarecrow makin’! I can’t wait to share!

Whats for dinner?

So I need some dinner ideas for our house. We're in that rut of the same-old stuff ALL.THE.TIME. I've been trying some new recipes and trying but not doing so well  with making some meals healthier. We had veggie pasta, with home made pasta sauce the other night....gotta start somewhere right? So the kielbasa and the desert wasn't the best for us, but it sure was yummy...

So, today I need to find something yummy....and ummm, healthy too!

Changed..

It seems like just yesterday. The sounds, smells, and chaos are as real today as they were that day. Ten years almost… time really should make things like this easier to handle, or at least buffer the raw emotion. I’m not the same person I was then. My perspective has changed on life. Simple things like the sound of a neighbors annoying squeaky dog barking for hours on end, the smell of cut grass, and the business of a grocery store provide a haven of normalcy.

So much for the college education;  the nights of classes; the homework, and the long hours of study. Who would have thought one of the most significant lessons in life would play out right in front of me. Many of us lost friends, coworkers, family, brothers, sisters, parents, and children. I think of the loss of a dear friend…his life ripped so senselessly from his young son and sweet wife. The day of his funeral was almost too much to bear. Standing in Arlington overlooking our broken and charred Pentagon was like a sucker punch right in the face. And the smell…it was awful, I cant begin to describe it.

In the years that have followed, our wounded Pentagon has been repaired and our hearts have had time to learn to cope. I cant say ‘heal’…I don’t think its possible to heal from the loss of a loved one. Heal if you break an arm, yes. The loss of life is something you just cannot ‘heal’ from, but eventually learn to cope. 

I thought that volunteering as an EMT would keep me occupied after my mundane day at work. I didn’t realize that along with the events of 9/11 would change everything I would do from that point on…

Chaos of love, life, and many kids...

Some people often ask what a typical day is like with a family of six little ones. Well, its busy. I cant remember the last time it was quiet for more than 30 seconds, something wasn't broken, or a time I could use the restroom without a minimum of ten little fingers trying to reach me from under the door. Nap time..well, lets say that the children will be able to sleep anywhere when they grow up, noise wont bother their slumber! Laundry? Well, thank God for modern amenities like a washer and dryer. Most of the time we have at least four loads a day. Frankly, I didn't realize there were that many socks, undies, jeans, shorts, or jammies on the face of the earth. Lets not forget the occasional rouge Lego or crayon that slips into a pocket...aah, the technicolor dryer cycle.... And then there's diapers. Yes, I mean the cloth kind... the savings is worth it. I love the convenience of disposables, and love a great deal, but cloth for us equals savings to do other things like buy food.   Speaking of food, lets talk breakfast. This morning we had french toast, scrambled eggs and corned beef hash. Translation... two dozen eggs, one loaf of bread, a half gallon of milk,  four cans of corned beef, and two 46oz containers of orange juice. Good thing I like to cook, lol. We don't go out a lot, but we sure do have fun! Last night was game night... Risk with the kiddos. That was a blast! Jake made up his own rules as we went along, but that's ok!

Everyday is filled with chaos. I wouldn't trade that for anything in the world. I cant imagine a day without our basketball team and a substitute...and being an assistant coach to the best husband I could have asked for is just a bonus.

Yummmmmmm

Ok, so I'll admit I have an ice cream addiction...but this weeks sale was too much to pass up! Hey, a nursing mama needs those calories ;)  Im grabbing at straws I know, but anything for some Ben & Jerrys, lol.

We made home made waffles this morning and took daddy breaskfast.I found a simple recipe that was fantastic! Flour, sugar, baking soda, bakin powder, vanilla, eggs and milk. Simple, but yummy.  Sarah wasnt thrilled when I told her daddy had to go back to work. She looked at me with her nose scrunched up and said, "no!" She loves her daddy for sure. And is an exact xerox of him, personality inluded

Tomorrow we try making some granola... that'll be fun :) 

Another lovely day...

My girls and I baked a load of cookies and 4 loaves of fresh wheat bread today...the house smells like a stinkin bakery!! Tomorrows project will be making making breakfast for daddy, and coming up with a home made recipe for granola and pancakes.


The girls are planning the new room and telling mom and dad what they want to see for their rooms. For Aaron, I'm thinking somthing nautical, beachy, tiki-ish

Zoo time was a blast with the kiddos. They climbed and played like there was no end in sight. Im hopefull that we can get the kids on the ice this winter!

Welcome to the world...

Our little girl Charlotte was born this week, we are so happy she is here safe and sound. Its amazing the things Ive taken for granted as a mom...after having Aaron my perspectives have changed quite a bit on being a mom. I wanted so badly to feed Aaron...and having the tubie (while necessary) was emotionally hard to grasp. I don't think he really cared, he was just happy his tummy was full...but how I wanted to hold my baby close and share that special time. At times when his health made it so that we weren't able to hold him, it was rough. My husband and I wanted nothing more than to hold him and comfort him...but we couldn't. Thankfully he is ok now, we cuddle away and let him munch on anything he will try.

Last night was our first night with Char..she is a night time gal! I'm not even going to complain...I'm so thankful that I was able to hold my nursing baby tight at 2am and talk about the flowers outside and how daddy's snoring was driving me nuts and how we were going to spend the day. After her nursing on and off throughout the night I was a little more sleepy than I thought, I dozed off with her in my arms. My husband had apparently woken up during that time, but instead of rolling over and going back to sleep he stayed awake to watch her and make sure she was safe, without disturbing her or I in the process.... I opened my eyes this morning to one of the most amazing things ever, watching a daddy's love for his daughter. I know my husband, I know how he like his sleep. BUT he would rather soak in his baby girl than rest himself. He got up early and took care of the rest of the kiddos and let me rest (thank you hun!) I know he is a great man, but sometimes I forget just how awesome he really is. This is what a family should be like. This is it. The only thing I will ever ever need in life...my family.