Tuesday, June 5, 2012

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!"

Monday, April 23, 2012

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!!!

Tuesday, April 10, 2012

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.

Sunday, April 1, 2012

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.

Tuesday, March 20, 2012

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.

Wednesday, March 7, 2012

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!

Friday, February 24, 2012

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.


Monday, February 20, 2012

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. 


Tuesday, February 14, 2012

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. 

Thursday, February 9, 2012

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 :)

Monday, February 6, 2012

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!

Thursday, January 12, 2012

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.