Sam's Adventure

Sam's illness adventure started Saturday December 12 when he woke up with noticably swollen lymph nodes in his neck. The following Tuesday he went to the ED on the recommendation of our pediatrician after his neck swelling and high fevers failed to improve with oral antibiotics or IM rocephin.



Sam in the ED on admission. One very sick little boy!

Day after admission, checking out the view from our 8th floor hospital room.

Sam has spent the last 8 days at Children's Hospital recovering from a somewhat mysterious illness that we have yet to fully diagnose. We think that a virus or bacteria caused him to get sick, but no specific organism has been identified in spite of many tests and cultures. Saturday night he was started on a different, stronger IV antibiotic and his high fever finally began to subside after 8 days. His case was followed closely by pediatric otolaryngology, infectious disease, and general pediatric medicine teams.

Jake and Ben doing "doctor play" provided by the child life specialist. This really helped them cope with Sam's hospitalization (and incidentally their own recent trauma of the 2 step H1N1 vaccination experience!)

Thankfully, we have not experienced the hospitalization of any of our children up till now. I had no idea how physically exhausting it would be to care for one sick little boy in the hospital. Being 37 weeks pregnant made it hard for me to care for him alone for very long. For the first few days it was impossible to even go to the bathroom without having someone there to take over for a few minutes. He had to be constantly supervised to prevent him from pulling out his IV or jumping out of the bed. In all of his misery, he slept very little and needed constant holding and comforting which ended up looking like wrestling much of the time. Jason's parents were so helpful to be with Jake and Ben or stay with one of us while we helped Sam. Jason or I have been with him constantly since he went to the hospital. Several friends and relatives also came to offer support or stay with us.

We spent a lot of time in the crib like this in order to help him get some rest.


It has been hard on our family to be so divided this week. It is hard for Jake and Ben to understand what is happening, but overall they are coping really well. Jason and I celebrated our 7 year anniversary on hospital day #7. He has demonstrated amazing endurance in the setting of terrible sleep deprivation as he has been with Sam nearly every night in the hospital and then spent his afternoons with the big brothers trying to perserve some sense of normalcy for them at home. What a blessing to be married to such a loving and self sacrificing man! I am certainly not complaining about a lack of romantic date for our anniversary.

Sam and Daddy with Sam's primary doctor who is also a friend of Daddy's from medical school.

It is hard to be a "medical parent" and we struggled to find the right balance of being appropriately involved and advocate for our child but to trust his doctors to make the final decisions for his care in the setting of debate and uncertainty about his diagnosis and treatment.
Over and over God showed us how he has protected Sam through this hospitalization, not only because he is getting better, but also through his orchestration of events to prevent Sam from undergoing certain tests and procedures that in hindsight would not have been necessary or helpful.
This experience has been a big perspective adjuster for us. We have been guilty of complaining about things being "hard" and "busy" as we anticipate the birth of our 4th child. Having a sick child in the hospital has been just a small glimpse and healthy reminder of how blessed we are. I know that many familes suffer far worse things. I want to have an attitude of joy in all circumstances and need God's grace to do this.

Gingerbread Houses

We had a fun time making gingerbread houses with our cousins this weekend. The boys stayed interested in the activity much longer than I expected and did are really good job with the decorating! It is fun to watch the kids (all 10 of them) grow up together and enjoy their visits more and more as they get older.

Christmas tree fun

I have fond childhood memories of going to the local hardware store "Chubby & Tubby" to select a fresh Christmas tree each year. We are carrying on the tradition at our local Home Depot. Not quite as adventurous as cutting your own, but maybe simple is better at this stage of life with small kids. The boys were bubbling over with anticipation of the annual event. They were even excited to help hang the ornaments, which was a first this year. The decorating process was a little crazy, but I let them hang as much as they could without help. I hope they will will look back on these Christmas traditions as delightful memories, and most of all I hope they remember Jesus being the focus of our Christmas activities! In a few days we will start the Advent wreath readings and candle lighting.

Baby shower for little sis!

My neighbor hosted a baby shower for me today for ladies on the street and a few friends while my mom is here visiting. It was so fun to be surrounded by such special ladies. We ate some great food and enjoyed opening the little girl things! I am still not used to the idea of having a little girl in the family soon, but all this pink is making it seem much more real!

Sweet friends from nursing school.

Petit fours!

Sam

As many of my friends know, Sam has not had the easiest first 18 months of life. To make a long story somewhat short, he has always had trouble with food. He had terrible colic starting at 2 weeks old. When we introduced solid foods, it became apparent that many things restarted his colic symptoms and he developed eczema and diarrhea. He has never eaten or drank well and mealtimes consisted mainly of a lot of screaming and crying. He has been constantly irritable and a poor sleeper and had frequent infections. Between 12 and 15 months of age his weight gain had stopped to the point of his falling off the growth curve. Dealing with all of these unexplained issues began to consume our family. It was becoming hard for me to interact much with our older boys through the day because Sam's constant misery and sickness required all of my time and energy. All of us shed many tears of frusteration and discouragment over not knowing how to help him. After taking him to an allergist and dermatologist without helpful results, we took him to a pediatric GI specialist who started him on some anti-reflux medication. Meanwhile we did more research of the medical literature and started experimenting with his diet and found that his symptoms improved dramatically with elimination of certain foods. MANY foods!

Sam at Vanderbilt Children's before his procedure.

By this time we had found that he cannot tolerate any dairy, wheat, soy, eggs, peanuts, fish, white rice or beans and had eliminated them from his diet. Sam finally underwent an endoscopy at the end of October. Biopsies of his esophagus showed some significant inflammation. The GI doctor feels that these findings in the setting of his dietary restrictions and treatment for reflux suggests that Sam probably has a condition called eosinophilic esophagitis that is being partially managed by these measures. This condition is basically a reaction to foods or environmental allergens in the esophagus that can cause pain and inflammation. Unlike anaphylactic food allergies that cause an immediate reaction, this kind of allergy often has a very delayed symptom response of 36-48 hours or longer and often does not show up on traditional skin prick type allergy tests. This explains why all of his allergy tests were normal and it took us so long to figure out what foods make him sick.

Sam with his special pancakes and EO28 supplement. Its this look on his face that keeps me going!

Since changing his diet, Sam has been like a whole new child we have never known up until now! He is able to play, laugh, smile, sleep through the night and even eats! His skin rash went away and his poop is normal. Because his diet is so restricted, he drinks a special hypoallergenic supplement to help him get enough calories. Sam gained almost 2 pounds in a month after starting this supplement. It is tricky for me to maintain this special diet- most packaged foods contain at least one ingredient that will make him sick. Because he is still too little to understand why he can't eat what everyone else has, we have made some major adjustments in our family's diet and mealtime routines and provide him with as many foods that look "normal" as we can. He seems to have an uncanny ability to detect off limits foods on other people's plates, and then throw a fit that ruins the entire meal for everyone. Clearly we are working on this as much as we can and it will get better as he gets older, but its hard to stick to a tough "eat what's in front of you or go hungry" approach when your child has been sick and underweight for months. We are also getting help from a special feeding therapist at Vanderbilt to use appropriate strategies to help him develop and maintain good eating behaviors.

This means cooking two versions of everything or just cooking everything allergy free. At first every trip to the grocery store was a major anxiety provoking nightmare. This lead to the necessity of learning the special considerations of gluten, egg and dairy free baking! Thank you Jesus for allergy cooking recipe blogs! Seeing my baby eat special treats that make him happy and won't hurt him makes it all worthwhile.

There are still many unanswered questions about additional foods that Sam probably reacts to and how his disease will evolve over time. For many kids it is a lifelong condition. The main treatment is dietary managment. We are looking at taking him to Cincinnati Children's Hospital for special allergy testing called an atopy patch test, which is not available in Nashville. Managing a child's diet based on the results of this test has been shown to successfully treat eosinophilic esophagitis in 75% of kids.

I am so thankful that God has been faithful and near to us as we have walked this challenging road with our precious little boy. I am so constantly aware that there are many families dealing with problems much more scary and serious than this. We are thankful for all of our friends and family who have and continue to pray for us and Sam and support us through this discovery process.

Bible memory fun

A mom at church shared with me how she prayed over her kids every day from Ephesians 6- the armor of God. We have taken up the ritual at our house each morning at breakfast. The boys love to pretend to put on each piece of their armor and know the scripture to it quite well. When we get to the shield of faith, they always add with particular gusto, "...that extinguishes the flaming arrows of the evil one!!!" Recently the boys have also been particularly taken with the story of Samson and Delilah, and we have been discussing what the Bible teaches about being careful of wayward women who will lead a man into trouble. Now when we get to the shield part of our armor, Ben exclaims, "the shield of faith, that extinguishes the flaming arrows of the evil WOMAN!"

RIP old laptop.

My laptop has officially died, and this has really put a damper on my many legitimate and not so legitimate uses of the computer- the special food allergy recipe lookups, the photo downloads from the camera, the free homeschooling printables, researching the pressing and important questions of the day, perusing craislist and realtracs. Not surprisingly, it has also freed up a lot of my time. I strongly suspect this was a divine intervention! So, while we wait for the release of Windows 7 on October 22 to purchase the new machine with a fresh, clean install of the new version, I will just keep on realizing even more ways that I probably rely too much on the computer. And my little homeschool will only be half as great without all our little handwriting, cutting and glueing printables. But really I think we will make it :)
Culinary adventures are underfoot! I could write for several hours about the culinary adventures of the past several months driven by having a child with yet-to-be definined serious issues with tolerating foods. But lets not do that today. I just wanted to share that I just bought a leg of lamb. Lamb is supposed to be one of the best tolerated meats for people with odd food issues such as my little Sammy. SO here we go into the crockpot with the big bloody mess of meat. Should be interesting. Would consider posting photos of the finished product, (and of Sam's face when he tastes the meat) but that will have to wait for a day when I have my own hard drive to clutter up with such items. Okay then. That's all I have to say about that.

Rainy day activities

Here's what we have been up to during all these rainy days... The boys are really into having tea and cookies in the afternoons. Its a comforting treat, even when its still a bit hot outside for my Seattle blood. They are eating some delicious gluten-soy-dairy-egg free banana chocolate chip muffins. Jake is not so crazy about the alternative grain baking, but I'm determined to get them more accustomed to it. Not that I would have picked gluten free baking as a top choice for ways to use my free time and money. But it really helps little Sam, AND its pretty healthy, so lets all make the best of it!

Homemade stilts. My husband likes to give me a hard time about saving lots of empty containers, its a genetic trait passed down from my father for sure. But these here containers have provided hours of free entertainment!

The boys thought the washer and dryer would work perfectly as deep sea submersibles. They came up with this all on their own.

Last but not least, poor little Sam has been struggling with a high fever for several days. His favorite comfort has been to snuggle with Daddy for hours on end. Jake and Ben, being the compassionate big brothers that they are, had very pure intentions when they tried to help snuggle Sam too. Here is the result... I love the expression on Sam's face- it says it all!

Two wheelin'

On Tuesday, Jake decided that he was ready to take off his training wheels. Since Daddy was home, we all went outside for the big event. Mommy did the honors with the socket wrench and let Daddy get him started. It took him all of 5 seconds to take off and he hasn't looked back ever since! Meanwhile, Ben was waiting on the sidelines, having a fit because he wanted his training wheels off too. I held him off for about 3 minutes to make sure Jake didn't need any more help, then I took Ben's off. It took him all of 2 trips up the street with Daddy before he was cruising along on two wheels without much problem either! He still needs a little steadying getting started, but once he is going he is gone. I can't believe both boys ditched their training wheels on the same day. And Ben has just turned 3 years old! Now if only he will want to be a big boy enough to poop in the potty, what a milestone that will be.

Baby sister photo shoot

We had a follow up ultrasound to follow up a few things from the 20 week scan. Baby sister checks out beautifully! We are so thankful she looks healthy and is growing well. Here are a couple pictures of her from today. In this one below, it kind of looks like she is smiling!

Happy Birthday to Ben!

Ben turned 3 today! Jason and I took him out for a special date to see his baby sister on the ultrasound and then for cookies and a trip to the Dewalt store. He had a great time. Then we had a neighbor friend over for orange creme cupcakes in the afternoon. They were gluten, soy, dairy, and egg free! I wanted Sam to be able to enjoy what everyone else was having. They tasted pretty good, since at least there was still sugar in them. Ben is my easy going predictable child. Since last Christmas, Ben has been asking for a forklift almost every day. Thankfully they just got them in at Costco right before his birthday! So that was his big fun gift.

Yes! Its a forklift!

Jake's first soccer game

It was a cool August day in Tennessee, if you can imagine that. Jake's first game was a blast to watch. He did a great job listening to the coach and staying with the ball most of the time although he did not actually kick the ball himself during the game. He seemed to have a fun time playing and Ben and Sam enjoyed watching, eating their snacks, and kicking balls on the sidelines. We look forward to watching his skills develop this season and most of all just enjoy having a new fun activity to do as a family.

Baby sister on the way!

Today we all went as a family to the big 20 week ultrasound. The big boys were interested in seeing the baby on the screen for a couple minutes. The tech was able to tell right away that we are expecting a little girl! After that Jason was pretty much wrestling with the 3 squirmy boys in a dark corner of the room while trying to watch the rest of the study. We are thankful that the baby looks healthy. Now just to come up with a name...

Grandma

Have you noticed that the older people get, the more opinionated and outspoken they become? My 94 year old grandmother is a sweet, holy, Norwegian, assembly of God pastor's wife. Over the past few years she has kind of surprised us at times with comments she makes. So tonight I was talking to her on the phone and mentioned that there would be another little Pereira joining us soon. First she said, "What brought that on?" and then without waiting for a reply she added, "What are you going to do, populate that whole area?" I said, "Grandma, YOU had SIX children you know." This line of reasoning didn't phase her in the least. "What are you going to do?" she asked, as if I am the first person in the history of women to have four children. We had a very similar conversation when I told her about the third child. I just laughed.

The littlest Pereira

We can't wait to meet him or her sometime around January 9! The boys are certain that they want a little sister. We will definitely be finding out in a few weeks.

Henry

Well, for all 2 of my friends who read my much neglected blog, we have happy news to share about our dog. After a long and arduous search for a suitable home for him, it seems that he has finally arrived. A precious family saw our most recent ad on craigslist. They shared with us that that had tragically lost their beloved yellow lab in February and had been waiting for just the right dog to come along. On Saturday they came all the way from Columbia and decided to give Henry a try. The main concern was that he and their 18 year old cat would tolerate one another with reasonable civilty.

So far Henry is having the time of his life. He is a house dog with a 50 acre farm to play on and a dog friendly swimming pool next door. He has been grilling out with the family, discovering horses, chasing moles and riding in the car to dunkin donuts and the park. Apparently he is going to the groomer next week! I have never heard of taking a lab to the groomers! The family has been so kind to call and email us with frequent updates. Most importantly, it sounds like they are completely in love with Henry and are enjoying having him around. It is hard to say goodbye but we are truly thankful that he is being loved and appreciated like he deserves. No more long lonely days out in the yard for him. And the cat seems to be "allowing" this new addition to his family begrudgingly. What an answer to prayer.

Bible 101

Throughout the grind of daily life, I am always trying to weave some lessons of truth into my discussions with the boys. After reviewing the resurrection and the meaning of Easter for the 50th time, Jake said, "Jesus will come back one day and take us to heaven." then Ben immediately chimed in adding, "And we will go to Egypt."

Today as we finished reading a book called How Much God loves You, I asked the boys, "How much does God love us?" Jake replied earnestly, "Twenty dollars?"

I guess we have a ways to go here.

Cold winter days.

Another un-original idea. But so fun! Playing in the rice container. This particular time however, I had to run to the bathroom and while I was gone, they spilled a lot of rice on the floor. It wouldn't have been so bad, but they also tried to clean it up. I came out to find rice EVERYWHERE! It took me at least 30 minutes to clean up from this activity. Next time I will be sure to go the the bathroom before we bring out the rice box.

Yes, the boys are in their pajamas. It was a really cold day and we were staying at home all day, so why not? They love to stay in their pajamas.

Sam is finishing his breakfast and wanting to get in on the action.

Drink your vegetables

I know this is by no means an original idea. Recently we have been making "smoothies" with kefir, frozen fruit, and spinach. Its a great way to hide fresh, raw vegetables in a yummy treat. It also helps that the finished product looks almost exactly like the berry smoothie the boys love to get at Costco. Next I will try adding protein powder to it. They are always so hungry these days its hard to keep them full long enough to crank out the next meal.
Here's the proof- they really do love it!

Any time Jake sees the camera come out he makes faces like this. You have to fool him somehow to get a smile or anything natural looking. This is why I have very few cute pictures of him and thousands of Sam. He loves to ham it up for the camera!