Wednesday, February 26, 2014

Our Superhero is Nine Months Old!

Our Cute Superhero!
Can you believe nine months ago little brother joined our family? Time is just ticking away quickly and before we know it he will be a year old!  He has kept us busy night and day!  Unfortunately, he continues to be uncomfortable with acid reflux even with taking 2 ml of Zantac.  For example, he gags, throws up occasionally, coughs a lot after eating or drinking, and is very upset if we miss or late on a dose of his medication. He still "dream feeds" during bottle feedings and probably won't break that habit. We are offering him more fluids from the cup and he is slowly learning to slurp it and suck through a straw... He sill wakes up a lot during the night because he is hungry due to only being able to consume little amounts of food or bottle feeds.  If he doesn't wake up hubby or I dream feed him 1-2 times during the night to get in extra calories...  Three doctors all agree that he needs a feeding tube soon. In a few weeks, we will know when to expect his 3rd surgery for gastric feeding tube placement and possible acid reflux repair. First, he is doing an overnight ph study at Primary Children's Hospital on March 10th to see how bad his reflux is after meals and bottle feedings. Once the doctor determines the results from the test then he will get his surgery scheduled. We admire little brother's smiles and strength though all his medical issues. 
Milestones:He is currently 15 lbs 7 oz (1%), 28 inches long (32%) and 45.5 cm (63%). He is slowly making progress with help from Kids on the Move: physical therapy, occupational therapy, and a child developmental specialist.  Due to little brother feeling uncomfortable being on his tummy, he may not show any signs of crawling soon, which is very discouraging for me. I want him to succeed in all his milestones like a normal baby, but I've got to accept the fact that he will be behind for a while and will catch up in his own time.  For instance, he is not pulling himself up to stand or safely getting on his back from a sitting position instead he arches and falls backs, which we all think it is because of his bad acid reflux... I'm trying to teach him to place his hands on the ground to a crawling position then he can safely roll on his back... He has mastered rolling around all over the place and is eating finger foods. As for playtime, we recently took him to the park. He loved going down the slides with his sisters and flying like a superhero in the playground's swing! We love little bro!

Friday, February 14, 2014

Love One Another

During the week of Valentines Day, some ladies in our neighborhood gave our front door a heart attack!  They also gave our family a box of sugar cookies and kisses!  What a fun surprise!
Heart Attack
I helped little sister make an iPod Valentine's Day box since she was having a contest at school for the best box.
iPod Valentine's Day Box
Credits:  I used the following: iPod templateSweetie Pie Kit by Shabby Princess and fonts were love ya like a sister, and calibri. Supplies to make it: shipping box, paper, foam paper with sticky back Valentine's embellishments, stick, yarn, scissors, glue gun, and glue stick.
Our Valentine's Flowers, chocolates, and car!
I adore my lovely family!

I hope you had a Happy Valentine's Day too!

Tuesday, February 11, 2014

Marks and Finlay Syndrome (Scalp, Ear, and Nipple Syndrome)

We recently got a few answers about what is going on with our little one from a pediatric genetic specialist Dr. John Carey at Primary Children's Hospital. He is not certain that little brother's hernias(inguinal, umbilical, and Morgagni diaphragmatic)are related, but he does know without a doubt that my husband, daughter, and son all have genetic characteristics for Mark and Finlay Syndrome also known as scalp, ear, and nipple syndrome.
 They all had similar traits as babies! 
What is Mark and Finlay Syndrome(Scalp, Ear, and Nipple Syndrome)? It is a syndrome related to aplasia cutis congenita, which is a scalp condition. According to Wikipedia, Scalp, Ear, and Nipple Syndrome is described as the following:
The key affected features of this condition are described in its name.
Scalp: There are raised nodules over the posterior aspect of the scalp, covered by scarred non-hair bearing skin.
Ears: The shape of the pinnae is abnormal, with the superior edge of the pinna being turned over more than usual. The size of the tragus, antitragus and lobule may be small.
Nipples: The nipples are absent or rudimentary. The breasts may be small or virtually absent.
My husband has aplasia cutis congenita (a scalp defect), the abnormal but cute ears, and accessory nipples (a second set),which we are not sure if it's related. As for my daughter (little sis), she has the abnormal but darling ears and an underdeveloped kidney, which is common in people with this syndrome. Her kidney stopped growing after birth, but remarkably it is still functioning, which we found out in 2010 after she had a kidney infection. Lastly, little brother like his father has aplasia cutis congenita, abnormal but adorable ears. So far no problems with his nipples, but he had many hernias, which we question is related to this syndrome or another one that we have not identified yet.
Father and Son's scalps
Look at those cute ears!
In the next few months, my husband, daughter, and son will be participating in a future research study in Washington by Dr. Michael J. Bamshed. Yes, that means they will be sharing a swab of their DNA for genetic specialists to analyze!

Friday, February 07, 2014

Marie Curie Wax Museum

Little sister was Marie Curie the polish scientist for her 5th grade historical hero wax museum! Marie discovered radium and polonium. She also helped with making the first X-ray! She was the first woman to receive a noble prize and awards in chemistry and physics! Her research efforts have saved many lives!
A few weeks ago, little Sis went on a "field trip" with us while little brother was getting his upper GI fluoroscopy done at Primary Children's Clinic in Riverton. She got the opportunity to see what an x-ray machine looks like! We are truly grateful for Marie Curie's discoveries! 

Wednesday, February 05, 2014

Winter Olympics and Adore You Scraps

Since the Winter Olympics are taking place this week, I decided to share my scrap page of when the 2002 Winter Olympics came to Utah. During that time, we went downtown to Provo to check out the ice sculptures, activities, and watched the Olympics on the television afterwards.
Winter Olympics, 2002
Credits: I used "Winter Wonderland" Kit by Shabby Princess and  Mareen's print for the font.
As for a lovely Valentine's Day page, I would like to share how much I adore my two daughters! They have such a sweet relationship as sisters. I am certain they will always look out for each other. 
Adore You, 2009
Credits: This is an old kit by Dani Mogstad called "Crazy Love". I used FO giggles and DJB fonts for the fonts.