Friday, December 31, 2010

Wrapping up 2010...

I can hardly believe the year is over- didn't we just begin? Gavin's first year of life has gone by entirely too quickly... I'm losing my baby years. Starting to get baby fever, a bit, but then I come to my senses again. :) Thankfully!

Updates: Gav's biopsy was rescheduled due to the awful, nasty, icky cold that charged into our home and refuses to leave... he'll have it done on the 13th of January. I'm hoping for good results, either the same or less eosinophils. Grace's ultrasound came back normal (Thank God!) and she's adjusting well to her SMO (foot brace). She's walking everywhere now, it's her only mode of transportation now- so exciting!! Gavin is starting to cruise- I'm sure walking won't be far behind.

Christmas was far too good to our family, we really are quite spoiled. The kids got a water play table, a pirate ship, Papa and Grandma and they are in LOVE! The Gonce family spent Christmas dinner with us, and it was awesome to watch the 4 kids play together- a beautiful day to spend outside, filled with giggles and splashing!

Grace checks the backdoor every day to make sure her boat remains in the backyard. She begs to play in it daily, irregardless of the weather. Poor girl got terrible goosebumps trying to play the other day- then bundled in a nice warm towel and got comfy and cuddly- mommy's favorite time!

We've survived a mini heart procedure (stent and 2 balloonings) and approach 2011 with hope for a quiet heart year. We've survived Gavin's crazy allergies, and also approach 2011 with hope for a diet that fits our growing boy. We continue to have all of life's blessings and love- our family being the greatest gifts.

With love to all, cheers to another year!


Our family letter for 2010:

Season’s Greetings, all! Hopefully this letter finds you in good health, and happy hearts! We’ve had a busy 2010 and 2011 is sure to bring even more excitement and joy.

We kicked off 2010 with a visit to Wisconsin, blessed to spend time with family over the New Year. Grace experienced snow for the first time, and wasn’t quite sure what to make of it. All of us enjoyed spending time with family, especially meeting our 3 nephews: Hunter, Cranden and Spencer. Upon leaving Wisconsin, we received a call from the adoption agency about a prospective placement. Again, blessings shine upon us, and within a week, we welcomed our son, Gavin, to our family. Gavin was born January 17th, weighing 6 pounds, 4 ounces. It was such a change for us to bring our child home from the hospital right away! Grace welcomed her little brother with welcome arms, and I know she’ll never be able to imagine her life without him.

February found us busy at home- nesting, and preparing Gavin’s room. We literally had less than a week to prepare for his arrival, so we spent many weekends at home enjoying our new family.

March was a busy month for our family. Felix visited Connecticut on business for 3 weeks, leaving me alone with 2 children for the first (not last) time. Wow, had I been taking his help for granted!! Thankfully, I had plenty of help from family and friends! My dad and step-mom came for a visit from Wisconsin, along with my aunt and cousins from California. Together, we saw 3 spring training games (Milwaukee Brewers and the Oakland A’s). Pam (Mimi) moved back from Michigan, and has continued to save my sanity as a live-in help, physically and mentally!

In April, we decided to sell our small home, as we were officially busting at the seams! Luckily, we have great friends, and we were able to move into a larger home at the end of the month. The month was a blur, with Pam making an emergency flight back to Michigan at the unexpected passing of her father. We’ve spent the past few months reliving his amazing life, and remembering the good times.

May was a blur, as spring often is. In addition to spring cleaning, we experienced spring moving- a new phenomenon, especially with 2 children! I vowed never to move again, without a moving crew- what a job! Gavin’s adoption day was officially celebrated on Cinco de Mayo. We were surrounded by friends and family at the courthouse, and then after during a celebratory breakfast. It was a wonderful relief! Grace continued to amaze us, as she went from 100% oral aversion, to eating baby food- literally overnight! Worried it was a fluke, we continued to feed her daily, often every hour or so. I’m happy to report that Grace is still eating, making more progress daily. On Mother’s Day, I received the best present EVER- Grace finally learned how to return a kiss! Of course, I’ve been smothering her with them every day since! Felix found himself being sent to Denver on business with a one-day’s notice. Making the best of his business trip, the kids and I traveled with him to Colorado. The kids and I then rented a car and made the 8 hour drive to Felix’s parent’s home in Cody, Wyoming. Mid-way I was blessed to visit family in Casper, Wyoming, enjoying laughter and pizza and a great night’s sleep, before making the rest of the drive. We spent 2 full weeks in Wyoming. The kids enjoyed their grandparents, great grandmother, great uncle, aunt, uncle and cousin as well as Yellowstone National Park. What a great visit!

In June, I became an officially ordained minister and officiated my first wedding ceremony- my mother and step-father’s! It was a beautiful, intimate affair celebrated in our backyard with friends and family. Grace learned to officially crawl in June, as well, but preferred her usual mode of transportation- the “butt-scoot”. Grace would literally sit on her bottom, scooting everywhere she needed to go, often quicker than I could walk!

July came and went, with one of the hottest summers I can remember here in Phoenix. To escape the heat, we took a family day-trip to Sedona. The 10 degree difference was AMAZING! We spent all day just enjoying the break. Felix and I celebrated our 9th wedding anniversary on July 14th- hard to believe it’s been that long! To celebrate, we took the kids on a 3 day staycation at a local resort. We spent all 3 days submerged in the pool- so fun! We learned that Gavin loved to swim and kick, in fact, he loved the water so much he would often fall asleep in his floaty for a mid-swim nap! After that trip, Felix and I decided we needed a vacation from our vacation, so we splurged on 2 nights at another resort for just us. Very, very relaxing!

August and September went by far too quickly- with not much “autumn” here in the valley. Luckily (for the kids and me!), Felix was sent on another 2 week business trip to Denver, so the kids and I visited Wisconsin and enjoyed the fall splendor! Felix was able to join us at the end of his trip, and we all enjoyed the visit with family. Felix and I were able to sneak away for a day, and I enjoyed playing tour guide. We spent the day touring the lakefront of Lake Michigan, even having lunch with a good friend at the American Club in Kohler. When we returned back to the heat of the desert, we played catch-up on our daily lives. The kids both had numerous doctor visits- including Gavin getting ear tubes, and Grace having a stent placed in her left pulmonary artery. Luckily, kids are super resilient, and they recovered quickly and seamlessly! We spent the remainder of the summer mostly indoors, while Pam and I worked on building a miniature kitchen set for the kids. Great idea- they love it!!

October was still warm, but we could see the change in seasons on the horizon. Gavin had some allergy testing done, and we were able to get some answers about his health. We’re still working on figuring out his perfect “food” combination, but I’m confident we’re making the appropriate strides towards our goal. Halloween was an exciting day for our family! We all dressed as a clan of pirates, went to a neighborhood block party, and then trick-or-treated into the night. Gavin was a bit overwhelmed by the whole experience, and fell asleep immediately once we got home. Grace decided she wanted to be a “big kid” and would walk, yes walk, to the houses! This was a first for us- such an exciting time! She proceeded to hoard her candy bars when we got home, eating a full-sized Baby Ruth bar!

The holiday months kicked off early with November coming so quickly! Felix and I were gifted tickets to Elton John, and made a great date-night out of the event. We planned a pre-Thanksgiving mini-trip to Disneyland, meeting good friends for 3 fun-filled days! We enjoyed the memories made with my niece and my god-children.

Everyday finds our family blessed beyond words. Our lives have changed significantly over the past few years, and with the holiday season upon us, we can’t help but be thankful to God for where we are now. Grace continues to grow stronger and stronger, tipping the scales at a whopping 20+ pounds! She’s walking more every day, and growing up way too quickly, having turned 2 on December 1st! Gavin is turning into a little man, right before our eyes. He’s crawling EVERYWHERE, babbling up a storm, and trying to outgrow his sister at a whopping 19+ pounds! Their laughter fills our home, and for that, we are eternally blessed.

Happy Holidays to Each and Every One of you!



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Thursday, December 16, 2010

Spreading the Word...

Dear Friends,

As many of you know, our son, Gavin (age 11 months), suffers from a rare autoimmune disease called Eosinophilic Esophagitis ("EE"). Kids with EE are quite literally allergic to food. The proteins in food cause a build up in the digestive tract and blood of a white blood cell called an eosinophil.

Eosinophils are meant to attack parasites, but the body of a child with EE mistakes food for a parasite. As a result, the build up of eosinophils cause numerous and very serious health problems, including, failure to grow and thrive, uncontrollable vomiting, severe stomach and throat pain, inability to sleep, joint pain, just to name a few. Many kids with EE can only eat 1 or 2 foods and need a feeding tube to survive.

CURED is a charity that I am actively involved with that raises money to find a cure for EE. CURED has donated over $2 million to research over the past 6 years. CURED has begun a $1 challenge. We are looking to find 500,000 people to each donate $1 or more to CURED, since that is something that almost everyone can do in these hard economic times. If you are interested in donating, please write Gavin's name on your donation and mail it to CURED at P.O. Box 32, Lincolnshire, IL 60069. or go to www.curedfoundation.org and make a donation via pay pal. Furthermore, if you wish to go even a step further, please forward this email to your family and friends. The more we get the word out there, the more likely it will be that we will reach our goal.

Thanks for your help!!!
Happy Holidays!!


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Wednesday, December 15, 2010

MRI

Gav's MRI results came back today.... 100% normal. I was so relieved at first, but not I'm just confused. If there is nothing wrong with him neurologically, what is causing him to be weaker (stiffer) on one side of his body? Why is he so hypertonic? Why does he have a sensory processing issue? I asked the nurse all of these questions, only to have her tell me that the doctor will be in touch... Fabulous. That will probably only take 500 years. In the meantime, I've made an appointment with a Developmental Pediatrician at the Melmed center. I'm hoping for some answers. I think I get more frustrated with Gavin's issues than Grace's because I have no way of understanding the problems, as they're not defined or explained. With Grace, it's fairly cut and dry. She has TOF, therefore she... etc, etc, etc. With Gav, it's he has nothing, yet these are all the bizarre things he does. No, I don't know why, that's why I'm here... UGH!

Respite is the BEST invention ever. Seriously. Today, I made 5 batches of cookies, all while Jess, our respite provider, read and played with the kids. Friday, she comes again, and I'll have all afternoon to nap, or clean, or even go out for a massage. I get approximately 72 hours per month, per kiddo, so... I have lots of relaxation coming my way. Woo-hoo! I feel guilty, but I am in such need of this, so I'll accept it and be thankful.

Tomorrow is another busy day for the kids. Gav is scheduled to have his EE biopsy, but since he's become super congested (and coughing), I think I may reschedule. Grace is scheduled for her bladder/kidney ultrasound. She had a UTI, and apparently it's unusual for kids her age. I'm wondering if other preemies have similar issues? I've noticed that she doesn't have the "inner protection" that other full-term girls have. I'm trying not to get too graphic here.... LOL!

I'm completely obsessed with the Glee soundtrack. It's somewhat disgusting. All of my ringtones are now songs that have either been on Glee, or are sung by Glee cast members. My favorites? F*&k You by Cee Lo Green; Marry You by Bruno Mars; Valerie by Amy Winehouse... the list goes on and on....

Random thoughts :)


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Tuesday, December 14, 2010

Updates

I'm so exhausted this holiday season! I have much to be thankful for, but I can't help but feel like I'm draggin'...

Today was a busy day, not unlike most days in our house. Occupational therapy started @ 9 for both kiddos. I filled out a sensory questionnaire about Gav, and all signs point to Sensory Perception Disorder, not a huge surprise. Gav has to be CONTINUALLY moving, receiving some kind of input on his tiny muscles, or he literally freaks out. It's completely exhausting for both him and me. We worked on a few things today- he loved them! We rolled him up tight in a blanket and then unrolled him, and then swung him in a blanket. What a giggler! After we were done with him, his crankiness set in, but I'd be pissed too if I couldn't eat! Gav was scheduled for his MRI with contrast (anesthesia) this afternoon, so I had to starve my bubs. He did well- such a champ when it comes to anesthesia. We got to visit with our favorite anesthesiologist, which is nice, but I imagine it sounds odd to "non-medical" families to have a favorite anesthesiologist... LOL! He's scheduled for another esophagis biopsy on Thursday, so we may be able to visit with her again. It's the little things... :)

Grace did great in OT this morning, too. She made cinnamon-applesauce ornaments, loving getting messy! She got to spend the rest of the day with Mimi, even making a trip to the park! At the park she learned to kick her giant ball, and even noticed her shadow! When I came home from the hospital, Grace had speech therapy- admit it, you're totally envious of my jam-packed life- and rocked it, as usual. She's becoming so much more verbal. It's easy to get frustrated with her slow and steady pace (desiring quicker results) but when I reflect back just one year ago, the results are seriously AMAZING! Last year, on her first birthday, Grace couldn't sit up on her own, she didn't allow food into her mouth, and she made little to no noises. Today, she's walking, sometimes running (and tripping), eating garlic cloves among other foods, and talking all the time! It's too cute. Her words are mostly mispronounced, but I understand her. I've taken to calling her language, Grace-ese-ian... A combo of Grace, Chinese and Russian.

Grace-ism's:

Diaper...Bye-per

Button...Booot

Ball...Bawwwl

Dora... Dohr

Love You... Too Too

Daddy... Dada

Gavin... Gah or Gahga

Brother... Bwubba

Bottle... Bobba

Water... Wah

Please... Peas

Book... Booooh

When she kisses us, she'll make the smacking sounds. When she drinks water, she'll say "ahhh" after- like it's the most refreshing thing ever. Too frickin' cute! She often sits in a quiet area saying, "Mama, Dada, Mimi, Gaah".... over and over and over again.

On her birthday, she finally "got" opening presents. Now, she's trying to open every Christmas present under the tree. Good times!

She's become a tiny "bag" lady. She steals my gift bags, uses them as purses, and walks around the house picking up all the random things laying around: hair clips, bobby pins, shoes, socks, etc. At a baby shower we hosted, a mom couldn't find her son's shoe. We looked EVERYWHERE- high and low- sure enough, it was in her bag! She's become a tiny mommy. When Gav fusses or cries, she'll rush over, hug or kiss him and then pat him on the back to calm him. Also, with her baby, Holly, she puts her to bed by throwing her in the play bassinet, then remembers to pick her up and kiss her, then throws her back in (often face down!) and then throws a blanket over her. Nice to know that's how she thinks I put her to bed, right?

Well, that's enough for tonight. I'm plain tired! Good night, world!

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Monday, December 13, 2010

New blog Design.... Lots more to follow! I'd like to treat this as a "diary" of sorts- so that I can remember what is happening in my day-t0-day life, rather than just being for emergencies (although some of my daily life is an emergency)!


Thanks for reading!

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Saturday, October 16, 2010

Welcome to Holland!

Most of us moms have seen this, but I just ADORE this saying, and when I'm feeling discouraged or overwhelmed, frustrated or let-down, I read this and I'm back on track again.

Welcome To Holland by Emily Perl Kingsley

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.


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Friday, October 15, 2010

New Design!

Happy Halloween (almost!) to everyone! I had some fun with this last night- got my mind off things, for sure. Enjoy!

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Wednesday, October 13, 2010

Eosinophilic Esophagitis.....

What a mouthful, right?

Gavin just got diagnosed with this chronic, long-term, seemingly heart-breaking disorder. I hate to say this, but in a way, it's almost worse than Grace's cardiac defect. At least with Grace, she doesn't experience chronic pain ALL day EVERY day. I know that is silly, but at this point, I am 100% overwhelmed.

Frustrating to think of two very chronically "ill" children. I had dreams of going back to work someday, now that seems doubtfully possible. Our days are filled with appointments, therapies, feeding battles (for both), and sleep, sweet, sweet sleep. I'm a self-described loner these days. Except for a very few close friends, it's hard to find others that understand me and my kids, and what we're going through. I'm having a pity-party day- and I'm in a poopy mood.

This too shall pass.... right?

Here's some info I found about the disorder. Happy reading!

What is Eosinophilic Esophagitis?

Eosinophilic Esophagitis (“EoE”, formerly “EE”) is an allergic inflammatory disease characterized by an infiltration of increased numbers of eosinophils in the esophagus (the tube that runs from the mouth to the stomach). This infiltration causes inflammation of the tissue lining the esophagus.

In a healthy person, there are absolutely no eosinophils in the esophagus. There can be a few in the lining of the gut, but there should be none in the esophagus. A few can be found with reflux. A biopsy with an eosinophil count of 15-20 or more per high power field (under the microscope), may be caused by Eosinophilic Esophagitis. Other potential causes are Gastroesophageal Reflux Disease (GERD), food allergies and irritable bowel disease.

Unfortunately, many people go undiagnosed for years, suffering with what can be severe symptoms. Some people aren’t diagnosed until they are teens or adults and seek treatment when food has become impacted in their esophagus.

Recent studies at Cincinnati Children’s Hospital have shown that Eosinophilic Esophagitis is even more common than other well known diseases that affect the gastrointestinal tract such as Crohn's Disease and Cystic Fibrosis. Eosinophilic Esophagitis is the most prevalent of the Eosinophilic Gastrointestinal Disorders.

The current (*) estimated prevalence of Eosinophilic Esophagitis is 1 in 2000.

(*estimate as of 2007)



Symptoms of Eosinophilic Esophagitis include:

blebul1a Reflux that doesn’t respond to acid reducing medication (i.e. Proton Pump

Inhibitors, such as Prevacid, Prilosec and Protonix)

blebul1a Nausea

blebul1a Vomiting

blebul1a Dysphagia (difficulty swallowing)

blebul1a Food impactions (food gets stuck in the throat)

blebul1a Abdominal or chest pain

blebul1a Failure to thrive (poor growth or weight loss)

blebul1a Malnutrition

blebul1a Poor appetite

blebul1a Early satiety (feeling full sooner than you should)

blebul1a Difficulty sleeping

In addition to the above, some people also experience pain in their lower limbs (legs, ankles & feet) which is not uncommon with GI disorders in general, ear infections, asthma, croup, migraines, mysterious fevers, and more frequent “colds” when they are reacting to a food. Behavioral changes have been reported in some children (*) and Autism Spectrum Disorders are not uncommon. (*If your child has ongoing behavioral issues, social skills difficulties or any developmental issues, you should speak to your child’s Dr and consider an evaluation by a Developmental Pediatrician.)

Diagnosis:

A diagnosis is made when an endoscopy is performed (by a Gastroenterologist) and multiple biopsies are taken. Eosinophilic Esophagitis can NOT be diagnosed by symptoms alone. An endoscopy with biopsies is the only way to properly diagnose EoE. Even if the esophagus looks fine to the person performing the scope, the biopsies may still show EoE. It should be noted that even if the esophagus looks normal, the presence of eosinophils (which would be seen in the biopsies) can, and often will, still cause symptoms. However, the Dr. may also see rings or furrowing, thickened folds, microabcesses, white plaques, etc. The pathologist will also look for tissue injury, swelling and thickening of the esophageal layers. With Eosinophilic Esophagitis, the eosinophils are limited to the esophagus and not found in other areas.

The formal diagnostic criteria should be in place soon, but Eosinophilic Esophagitis can be diagnosed when the number of eosinophils in a esophageal biopsy is greater than 15 – 20 per HPF (high power field) under the microscope. Multiple biopsies need to be taken, as it tends to present in patches. It is recommended that 4-5 biopsies be taken from each area of the esophagus: 4-5 from the top (proximal), 4-5 from the middle, and 4-5 from the bottom (distal esophagus), because with any less, it may be missed.

Once Eosinophilic Esophagitis has been diagnosed, food allergy testing is usually recommended to guide treatment. Skin prick testing (SPT) to different foods is the most common type of allergy testing, and may prove helpful, but EoE is caused by a delayed reaction, not an immediate reaction as is tested for via SPT. Patch testing, which looks for delayed reactions, is also being used with some success. However, it is not uncommon to have negative allergy testing and still react to those foods that are being tested. An EoE reaction can range from days to weeks as the number of eosinophils increase and cause damage to the esophagus.

Please note that if you or your child have previously had an endoscopy, but the number of eosinophils was not quantified (counted), you are still able to ask the doctor to have the biopsy slides reviewed and have them counted. Even if the biopsies are several years old, they can be pulled from storage (they are archived) and the can be reviewed / re-read. The report can then be amended to indicate the eosinophil count, even if it is zero.

Treatment:

There is NO cure for Eosinophilic Esophagitis, but the goal of treatment is to eliminate the eosinophils in the esophagus, thereby alleviating symptoms. The treatments include dietary restrictions and medications. Since EoE is usually food-driven (caused by a reaction to certain foods), most kids and adults with EoE respond well to dietary treatments, and this may be all that is needed for many people. However, once treatment is discontinued, the eosinophils along with the damage they do, will return. Treatment needs to be ongoing, which may mean continuing to avoiding the food triggers and/or taking medication.

Elimination Diet: Dietary restrictions are guided by food allergy testing (skin prick testing, RAST, and patch testing). Some doctors are recommending that the top 8 allergens be removed from the diet, in addition to the foods that were identified via allergy testing. The top 8 allergens include milk, egg, peanut, tree nut, soy, wheat, fish, & shellfish. Beef is also a common trigger of EoE, as are certain other foods. However, a person with EoE can be reacting to any food or combination of foods. While allergy tests are used to guide an elimination diet, there can be false negative and false positive test results. You only have to eat one food that was a “false negative” in an allergy test for the elimination diet to fail. When an elimination diet does not do enough to clear the GI tract of eosinophils (as evidenced by scope with biopsy), sometimes a stricter diet is needed. This may mean just removing some additional foods from your diet, or going directly to an elemental diet. Food trials can begin once the symptoms have resolved and the eosinophils are gone, as confirmed by a clear scope. They involve adding back one food ingredient at a time, looking for a reaction, to determine which specific foods are causing a reaction. Typically, one single food ingredient is trialed for a 2 week time, looking for a reaction. Some Drs vary the time period by patient (1-3 wks, typically). If no reaction is seen, another food can be added and the same time period applies. Usually, when 3-5 foods are added back, the person has another endoscopy and the Dr looks to see if the eosinophils have returned. If not, the foods are ok for that person to eat and they can move on to additional food trials. If the scope shows that the eosinophils have returned, all of the foods that have just been trialed must be removed from the diet once again. It could be that the person is reacting to only one of the foods, but without noticeable symptoms to confirm which one, they must all be suspected. Some people need to scope between fewer foods. Some even have even found that they need to trial only one food per scope, but this is not the norm.
Elemental diet consists of a medical food (elemental formula), without any proteins, either in its whole or incomplete form (pre-digested or hydrolyzed). Elemental formulas are made of amino acids (the building blocks of proteins), fats, sugars, vitamins and minerals. Amino acids do not cause allergic reactions but whole or partial proteins can.


Although new flavors are available to make the formulas more palatable, kids and adults who need elemental formula may have a difficult time drinking enough of it. To maintain proper nutrition, some require enteral feeding tubes, to allow the formula to go directly into the stomach.

Medications for Eosinophilic Esophagitis most commonly include steroids to control inflammation and suppress the eosinophils. Steroids are used if dietary changes do not resolve the symptoms. They can be taken orally or topically (swallowed from an asthma inhaler). Side effects from steroids often limit long-term use of oral steroids. Without removing the cause of the symptoms via dietary restrictions, the eosinophils will return once the medication is discontinued. The doctor will determine which, if any, medications are appropriate for each individual.

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Thursday, October 7, 2010

Photos!











When Life Gets in the Way of Life....

I think I may win an award for the absolute laziest, worst, out-of-date, archaic blogger. Would you vote for me?

Well, since April- way too much has happened, so I'll keep it short and sweet (if possible- I've been known to ramble...)

Gavin is almost 9 months now!?! Where has the time gone? He's pulling to a stand all over the house, trying to walk and keep up with his big sister, who just started pulling to a stand a few months ago. Seriously- I have 2 WAY too mobile kids! Gavin has some medical issues, we've discovered over time, but we're taking it 1 day at a time, and getting things resolved. Gav had like 18 ear infections over the last 9 months, so we finally got tubes in last week- what a difference! He's babbling, saying "dadadadadadada"- of course, daddy is thrilled. I won't burst his bubble and let him know that most kids say that word first because it's easier than mama. We'll let him think he's all that and a bag of chips ;).... Gav also had a modified barium swallow in August. I fully expected normal results- we just were sick of the reflux. Sadly, he failed miserable. Penetration to all levels up to honey thickness. What a shock! So, we began simply thick and it was TERRIBLE! He had such terrible gas and stools, I actually had to go to Bath & Body Works and get portable sprays for my car, otherwise I would gag and vomit. He was drinking like 80 oz per day too, just going right through him. So, now we thicken with oatmeal... It's been going fairly well. Today we had Gav's GI scope. Again, expected everything to be normal, maybe some signs of reflux... I was wrong, AGAIN! I don't think I will go into any other procedure with expectations- I'm clearly doing this wrong!! Gav has abnormal esophagus bumps, nodules, and folds. Apparently, they did 3 biopsies, and we'll know more next week, but it looks like long-term allergic reaction. Unfortunately, we're already on the most hypo-allergenic formula on the market (and the most expensive!), Elecare. Our GI explained we will probably have to do a complete allergen workup to figure out what specifically is causing this, and then if it is in his neccesary daily food, find a medication to eliminate it, if possible. Good times!

Grace is HUGE! She's so tall!! Sadly, she's only 19 lbs (Gav is 17.8), but we're working on weight gain. She's eating by mouth, but we can't seem to get her to take in enough calories. She gets her night drip for 12 hours, at 30 calories, 2 ounces per hour. She had a cath last week. Conduit looks GREAT. Wide open. Still leaky, but they typically only replace if there is narrowing. Her pulmonary artery pressures were getting higher, and the viagra wasn't making much of a difference. The cath was to check pressures and intervene as neccesary, or possible. They tried ballooning her left side, unsuccesfully. They stented the left pulmonary arteries- success! They ballooned the right, and it helped a tiny bit, but the arteries are so close on that side, that if they were to stent, they'd lose an entire artery (collapse). They may take the route at a later date, but for now, they left it at that. The cath was supposed to take about an hour- 6 hours later, with unexplained bleeding in the surgery, she was in recovery. Grace is nothing but normal when it comes to cardiac procedures, so frightening! The next day, true Grace style, she was up and scooting, as if nothing had happened. Crazy resilient girl! Pre surgery her pressures were at 60, now they estimate them to be at 35- improvement! By Christmas, fingers crossed, we should be off all medications (viagra & aspirin).

Grace's continual "side-effects" of surgery, ie. complications, have us worried, frustrated and concerned. After talking with other heart mamas, we decided to look at other hospitals. Right now, Dr. Handley @ Stanford (Lucille Packard Children's Hospital) is looking at her records and putting together an operative plan. He's AMAZING and if there are extreme complications, Stanford is where she'll need to be. (I refuse to mention the "T" word...)

We moved into a bigger home- thank God! Our other home is still on the market, but we've got an approved short-sale, so only time will tell. Hopefully this whole thing will work in our favor, and we'll be able to buy again soon.

I considered going back to school, but with the kids and their appointments, therapies, etc. there is no time left. Which is fine, I'm okay with being home with them for a while longer. We'll see what time brings..

There is a TON I'm leaving out, I'm sure, but we'll catch up over time. Here are some recent pics of the kiddos- so big!!

My computer is being crazy stupid, so I'll post another blog with them... UGH!

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Friday, April 2, 2010

Stomach Flu Funk!

Miraculously, I am the only person awake in the house at 5:30 on a Friday afternoon...

The stomach flu has stormed through the Marchese household and taken both Grace and me hostage. Gavin, Felix, and Mimi have seemed to weather the storm thus far, but it's not over till the fat lady sings, and I'm not singing! :) The last 4 days have been filled with pediatrician visit after pediatrician visit, I literally went 3 times in 1 day!! After getting a virus diagnosis, I suddenly came down with the same symptoms- and they weren't pretty. In the last two days I've drank 2 liters of Ginger Ale and managed to eat 5 crackers- it's truly a great diet plan, but I feel like I have the world's worst hangover because I'm still uber dehydrated! I can't even imagine how poor Gracie must feel- she just can't decide if she wants to lay down, sleep, be held, play.. and I haven't seen a "real" smile in almost a week. Poor baby! On top of that, we've got her molars coming in- the bottom left has come through and both the bottom right and upper left are starting to. I guess when it rains it pours, eh?

We never did make it to the Disney on Ice show. We had to give up our tickets, because Grace was too sick and I didn't want anyone else to get this monster sickness, especially other immuno-suppresed kiddos. No fun!

Off to bathe my babe- hopefully she'll feel a bit better. She's down to 17 lbs 10 oz wet and with clothes on... NOT a good sign... Prayers, please!!

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Wednesday, March 31, 2010

A Long-Awaited Update!

After much harassment (Tasha, Danelle, Andrea- you know who you are!), I have decided to visit my blog, or lack thereof... I am seriously (cross my heart!!) going to try to update this at least once a week, letting it serve as a sort of family journal. At least, that's my intent. We'll see how long I last, eh?

Lots going on, as usual. House is officially on the market- it makes me cringe looking at the listing price. After much debate, consideration and prayer, we have decided to short-sale our home. We owe over 230k on this small 3 bedroom 1475sq ft home, and I can't see us ever making our money back, and we've CLEARLY outgrown this home, so... on the market it went, for a measly, MEASLY 94k!! Can you believe it?!? UGH! Darn Phoenix market!! We'll be moving, regardless of the sale, on May 1st. We're renting a good friend's home, allowing them to buy the bigger home they've been dreaming of. Eventually, in a year or two, we'll buy again, since Felix isn't on the title of this current home (bizarre- since we bought it together??)... Alas, packing with two children will prove to be interesting. Felix was supposed to go to Connecticut for another 2 weeks, right up until moving day, but thankfully, his trip was cancelled- HALLELUJAH!

These past few weeks have been mad-crazy too. We had Papa & Grandma from Wisconsin visit for a week while Felix was in Connecticut- what a lifesaver! I banked up my sleep during their visit and they happily visited with their grandchildren. During the visit we managed to do a few Spring Training Games along with my aunt and two cousins.


It was an awesome visit! We even did a mini-family reunion at Oregano's with my aunt, uncle and another cousin who I hadn't seen in over 20 years!!

Mimi, or Grammy Pammie, moved back from Michigan this month too. She's been staying with us and helping me with the kiddos- HUGE help! I seriously don't know how I could do it without all of the support from my family and friends.

Grace has had pneumonia, severe constipation, gas issues, a yeast infection, an ear infection, RSV... Gavin has had ear infection after ear infection. If he keeps up his trend, we'll be seeing ear tubes in his future, poor little man! He is growing like a weed! Almost 11 pounds, slowly catching up with his sister. Grace is hovering at 18 pounds, despite increasing her caloric intake. We're back to formula food again, since she became extremely constipated, but things have improved greatly, so we'll stick with it for a bit. She's been vomiting a TON today, but apparently, it's some sort of viral infection, so we wait it out with lots of Pedialyte on hand. Good times! Grace is able to pull herself to a sit and a tall kneel from lying down, and now able to army crawl- PT is working! I about fainted the morning I walked into her room and she was sitting up playing in her crib. Now, she never wants to lie down- she's always sitting, even falling asleep most nights sitting up! Silly girl! Gavin is cooing and doing everything age appropriate. He's such a wiggle-worm. If I lay him on his belly, he'll inch worm off the mat, and onto the cool hard-wood. He's constantly bearing weight on his legs and pushing off of me. His smiles melt my heart- he's still only smiling on his terms, but when I see it, I melt. Both of the kids were SPOILED by Papa & Grandma, of course. Grace got her own car, which she adores. We try to get the mail in it every day, when the weather permits. She also got her own drum set, so she's continually banging on her drum. Gavin got a new remote control mobile. What a great concept! He will lay quietly in his crib cooing and chatting with the animals, while his glow worm sings soft lullabyes.

Tomorrow we are doing Disney on Ice with Grace, a Hope Kids event. I'll post some photos. Hopefully we'll have a smoother experience than my cousin Danelle did with her son.

So, that's it for now- stay tuned for another update, coming your way soon!

Cheers!

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Thursday, February 18, 2010

Colicky Craziness!

WHEW! I'm still alive- although, you probably couldn't tell by my lack of blogging. What an exciting two months we've had... (okay, so it really has been 2 whole months since my last post)...

The Wisconsin trip was a blast! We spent most of our time with family, doing family dinner, having Grace play with her cousins, celebrating the new year with my step-brothers, and even visiting friends from high school. Grace wasn't such a fan of the cold, but neither were we. Getting her in and out of the vehicle in -20 windchill weather was, well, unpleasant. It didn't snow the entire time we were there- I was bummed, as I was really looking forward to a majestic quiet evening. The first snowfall is always so magical- it's quiet, and it's like a fresh start. I think the best I've heard it described was in an episode of Gilmore Girl's. Yes, I watched that show. Yes, I loved that show. Yes, it was entirely unrealistic.

Rewinding a week or two before our Wisconsin trip, and possibly to one of my more recent posts, I referenced adopting another baby. Grace's birth mom was pregnant, and didn't seem sure as to what she was going to do- it was another little girl. The timing wasn't ideal, but we would have been blessed and thankful, and stressed, but blissful. God had his hands in this, as Grace's mom decided to parent her, and we were able to focus on Grace. After examining the timing, and getting ready, we decided that maybe we were ready, after all, to have another baby. We debated trying on our own (I battle with PCOS, and my husband with less than ideal sperm counts), knowing the cost and stress involved, or adopting again. After praying, and talking with friends and family, we knew in our hearts that we were meant to adopt. We decided to stick with the agency that finalized Grace's adoption, AASK (Arizona Adoption of Special Kids), a very small, slower agency. We figured on a 2-3 year wait, at max, and prepared our birth parent letter.

Back to Wisconsin... while there, I got a text from the social worker advising me to check my email. A local couple in their 30's were unable to financially keep their baby boy, and they were looking for families. We fit their ideals- would we be willing to submit our profile? We prayed, and decided that yes, we would. We figured it was out of our hands, and that 4 other families were being submitted too, so if it was meant to be, it would happen, and if not, God would provide. Honestly, we didn't think we'd be chosen as I was very honest about Grace's heart defect, and about the fact that we had adopted her- I figured they would choose someone who was unable to have children, giving them the opportunity to be parents. So, we got on the plane to come home, and got the phone call the next morning- they picked US!!! The parents wanted to meet us, and the baby was set to be born within 6 days. Wait- 6 days?!? OMG!! We scrambled- we wanted to get stuff, but you never know with adoption, the parents can change their mind at any point until consents are signed. We debated- do we plunge both feet forward, or do we wait? We plunged, and thankfully so! We bought a dresser, had a painting party, and received boy clothes from friends, and even strangers (friends of friends). We are so very blessed by the love and support we receive. My friends insisted on throwing me a shower, so I got my essentials, and tried to calm my nerves. On January 17, 2010 Gavin Wyatt Marchese was born. Gavin weighed a tiny 6 lbs, 4 oz and was 19 inches long.

We were able to be there immediately after birth, and we were the first people to ever feed our son- AMAZING! You have to imagine how foreign this was to us- we never had the opportunity to do any of this with Grace. Heck, we couldn't even hold or touch Grace for the first few weeks! He is perfect in every way. Being the neurotic heart mom that I am, I took him to the doctor and grilled our poor pediatrician. Our pediatrician, one of the most amazing men, simply laughed at me, and told me that try as he might, he just couldn't find anything wrong with our son. He proceeded to tell me that this was common for parents of special needs kiddos.

Gavin came home 24 hours after birth and was a perfect angel, until about 2 weeks ago. Then, he started crying non-stop, especially in the evening, arching his back, tightening his stomach, screaming and screaming and screaming.... Couldn't take it anymore- thought I was seriously going to lose my mind. Once he starts crying, Grace chimes in too. Went to the doctor. Diagnosis: colic. We're switching to an elemental formula, one that's already broken down so his stomach doesn't have to work so hard. In the meantime, we've tried pretty much every possible hold, swaddle, swing, stroller, walk, car-ride, etc. We tried gripe water and it worked like a miracle for the first night, but not so much there after. We are officially in a bad place! Hoping and praying that this gets better- I am massively sleep deprived, and my hubby and I are irritating one another non-stop.

Grace has started a blenderized diet of real food. I couldn't handle the puke fest every day, and figured there had to be something better and healthier than what she's been doing. She's almost 15 months and still on an overnight drip- time to get things in check. So, we went to GI with high hopes.... and got shot down. I won't name names, but our experience with them on this visit was awful enough to prompt me to write a letter. The letter still hasn't been written.... but I'm still pretty peeved. So, I did some research. There is a book about this kind of diet written by two professionals out of Tucson. I emailed one and begged for a name of an RD, and was emailed immediately- Hallelujah!! In the meantime, I dove in feet first, taking Andrea's lead (Owen's mom). We've had a few hiccups, but mostly she's doing AMAZING! She has more energy, and seems to be in a better mood. We've found she's allergic to bananas and possibly milk, but we're being creative. The RD is putting together a more balanced menu for us, and trying to lessen volume but increase calories. Either way, this is the BEST thing we've ever done!

Life is obviously chaotic for us- a CHD toddler and a colicky infant, could it get any more exciting? :) We take it gladly, except in the middle of the night, but even then, we survive. Grace is on the cusp of crawling, her hips are a bit too weak (low-tone from being a preemie), but we're getting there. She can stand holding on to an object for almost 20 minutes.

She's got PT, OT and feeding therapy at home, and then PT at PCH. Heart-wise, we're looking good. We've increased her viagra (the pressures were still a tad high), but we're hoping to not have a cath until this next winter. We had an RSV scare this past month, but Grace made it through with flying colors- mostly because of having access to Synagis. Seriously, that is a blessing!

We've been watching the Olympics (well my husband has), and I heard from another heart mom, Melodie (Scarlett's mom) that Shaun White is a CHD survivor, dx'd with Tetralogy of Fallot. The same thing Grace has! So, I read up on him, and I'm completely confused.... he's only needed 2 open heart surgeries, both before the age of 1... So, what did he do? Why is it that every other TOF kiddo has multiple surgeries throughout life, as they outgrow their conduit? Maybe there is another kind of TOF?

Throughout this mass of craziness, I've had amazing support, as mentioned above. But, seriously, Tasha & Adam, (Bree's parents) I couldn't have done this without you. Your support, at all hours of the night, has been life-saving. I'm thankful to have such a great friend living so close (5 houses away), and Grace and Gavin are blessed to have such wonderful kids to play with!

Making a Valentine's Day card for Daddy- so sweet! She ate the crayon and colored her face instead...

A lot, right? WHEW! We made it... and I again, will set a resolution to blog more. The little stuff and the big stuff. Night all!

PS- Pray for Gabriella! She's on the transplant list, but she's running a low-grade fever. God Bless that little warrior!

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