On March 10, 2014, little bro went to Primary Children's Hospital in Salt Lake City for a ph probe test. It was an overnight test. We were both miserable staying at the hospital because they woke us up a lot and Little bro hated the probe down his throat. In fact, he pulled the tube out and they put "no no" socks over his hands. The best part of being there was a late night wagon ride and a trip to the playroom on the 3rd floor. Little bro was very sad while there and when he finally got the tube out he was happy again. His test results came back normal, which means he doesn't need a nissen fundoplication procedure done while he gets a g tube surgically inserted. I still wonder why he continues to cough, gag, and vomit while eating or drinking... He also continues to struggle to gain weight. There has to be something going on to cause those symptoms if it's not GERD (acid reflux) unless his Zantac is helping him control the acid from coming up.
Big Sister had her chamber choir concert on March 21, 2014 while little sis had a choir concert on March 27, 2014, which she sang many Disney songs.
Little bro is 10 months old!
Milestones: He is slowly making progress but not gaining much weight. He is starting to drink from a straw but seems hyper sensitive to certain food textures such as macaroni, cottage cheese, cheese, thicker purees, etc. I'm hearing a little more babbling sounds, but he is not improving much on gross motor skills yet (no signs of crawling, pulling up to stand, or walking). He is doing well developmentally in cognitive or social skills such as putting blocks in and out of a bucket, clapping, etc. We are working on waving bye bye. He seems timid or shy around strangers and always prefers Mommy over anybody else.
After School Programs
The girls signed up for after school programs. Big Sis volunteered to help out with the track team. She is a track manager who assists the coaches and attends the track meets. As for little sis, she has been enjoying her water coloring art class.
Recently my friend Trishelle and I hosted my niece's baby shower. Since Stacy (my niece) is not a huge fan of silly baby shower games, we did a simple open house baby shower with a theme of tan, blue, and grey. My duties were the following: designing the invitations, decorations, and diaper cake. My friend Trishelle made all the yummy food. She is an incredible cook and artistic with pretty cupcakes!
Credits: For all my decorations and invitation, I used Kit by Shabby Princess I recolored some of it brown, and used the following fonts MA Googly Bear, Print Bold OT, and Love ya like a sister.
The Decorations: Banner, diaper cake, door decoration, and cupcake toppers.
Supplies: card stock papers, ribbons, scissors, paper hole punch, tooth picks, sticks, string, The Food Menu: blackberry lime chicken salad, chicken sausage soup, French bread, and cupcakes.
The Yummy Cupcakes and Cupcake Toppers
The Activities: Words for the Wee Hours and Guest Page!
Words for the Wee Hours also known as late night diapers (I found the idea on Pinterest).
As for the guest page, I recolored a baby floating with balloons using some of my digital scrapbooking kits. I was inspired by something cute I saw onEtsy. Stacy and I thought it would be cute to add to her baby's scrapbook. It was a great turn out and I was happy to host it!
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!
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 template, Sweetie 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!
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!
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!