Monthly Archives: July 2015

A Simply Deep Kind of Day 

Yesterday was a simple day, yet one of deeper, unexpected meaning.

To start, my son and I ran errands and went to a toddler class. Then, we even got ” daring” and drove to my chiropractor, taking the hour drive in traffic that we have not done since school/work let out for the summer. Sounds like nothing, but for us long car rides especially on a hot day are super challenging without someone sitting in the back seat with TJ to keep him from scratching at and irritating his eczema.

However, on our way up, he made a weird noise and starting fussing, causing me to look back to make sure he was okay. Something my worrying self does too often. As I quickly checked him in a moment of panic, eyes off the road I must admit, what I didn’t realize was that a car a few cars ahead had made a sudden stop. While I only turned around for a second, that second almost caused a huge accident. I had to swerve to the right as the car in front of me swerved to the left almost reading my mind on what I would do. Somehow, no one hit anything or anyone. After thanking God for taking control of my car in that second, I also realized that I need to let go of more of this food allergy/eczema fear, trusting in Him. I think it was a way of showing me that He truly has control of this wheel.
As we were out and about, I received texts from a close friend that her friend was looking for breast milk donations. Shortly after her daughter’s birth, she had been diagnosed with breast cancer. Since then, she has completed radiation and is cancer free. However, her daughter never took well to formula and she has not been able to produce milk due to everything. While she has other moms such as my friend who have been donating their milk and pumping extra for her, she is in need for more. Therefore, the 238 ounces that I was looking to donate is now with them. =) I feel good knowing that this milk is able to help them in so many ways. It’s funny how something that seems so simple like donating milk really shows how much I’ve changed as a person over the past year. While a year ago I would have been slightly uncomfortable with the thought of donating my milk, a year later it brings me such comfort knowing I’m helping another sweet baby and amazing mom.
( I did, however, keep 24 ounces just in case. Not sure what that ” just in case” is for, probably just my need for planning and being preparing shining through.)
Finally, in a conversation with one of my closest friends today, the word surrender came up. It’s such a contradictory word. While to surrender sounds like such a weak thing to have to do, it requires such a great deal of strength to actually do. During times of hardships, it’s that letting go, surrendering, that allows our faith and strength to grow. With that being said, we surrender a little bit more, smiling on…

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Baby Steps Move Ahead Faster Than You Think

I have been trying to take all of this step by step throughout the summer by challenging myself each day with something.   It could be introducing a new food or taking TJ to somewhere new like the pool. While they don’t seem like anything crazy, for us, these baby steps are necessary and more nerve-racking than the typical person or situation.  Sometimes, I get frustrated with myself that baby steps are all that I am comfortable taking.   However, On Saturday at my mom’s party, I realized that may these baby steps aren’t baby steps at all.

As I was feeding TJ his dinner there in a highchair that was not ours, everyone came in to have dessert.  First of all, I would not have used that highchair a few months ago even though TJ uses highchairs used by other babies at daycare. Also, by the time that TJ finished eating and was running around, there were about 15 people, both adults and kids, everywhere eating birthday cake.   And I mean  everywhere, on the floor, at the dining room table, on the couch, in the kitchen, there was dairy, wheat, eggs, and who knows what else everywhere TJ was running around.   Even a month ago, I would have never been there in that moment.  I would have planned ahead and left before the cake was distributed.   However, I hadn’t even thought about or worried about it beforehand.   This is a huge step for me.   Don’t get me wrong, I instinctively know how to react.   It was time at that point for us to leave and I watched TJ like a hawk, picking him up once people were on the floor.  However, we were there and I wasn’t losing my mind with fear.   As everyone ate, I made a comment to everyone that, “TJ would be blowing everyone kisses this evening.”  That’s all I needed to say and everyone understood that I was just keeping him safe.   It was the first time that I did not feel like a “crazy” allergy mom around food and people.  But instead, I felt like his biggest advocate, speaking up for what he needed me to say. Only, I knew how to do that perfectly for him. Realizing that we have come a long way since December, we smile on…

Allergy Levels

Until recently, I have obsessed about TJ’s blood tested allergy levels. When his dairy level came back so high in April, we, or rather I, panicked.  I just kept asking myself how his dairy allergy could have gotten so much higher when we both were not consuming any dairy at all.  I drove myself nuts wondering…

Was it cross contamination?

Was it exposure at day care?

Was it from the Puffs that were produced on equipment that handle dairy despite them following cleaning codes?

The questions and obsessive thoughts just kept coming and no matter how many emails I sent or phone calls I made about the issue, no answer was in sight.  However, what I should have done back then was listen to our allergist.  In a weird way, I don’t think I was ready to just give in to the thought that I had no control over much of this.

Anyways, TJ’s main allergist as always explained to us that the numbers only show the likelihood of a reaction, not severity. They can change from day to day and aren’t even super reliable.  You can have false positives which is why in-office food challenges are the only true way to know if one if allergic to a food.

The following site explains this further…

https://labtestsonline.org/understanding/analytes/allergy/tab/test/#what

TJ’S LEVELS IN DECEMBER AND APRIL

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Notes: Peas and Soy were both either false positives or outgrown.  In my heart, I believe they were false positives.  Coconut is a true allergy that caused mild vomiting despite being so low in numbers.

For All My Impatient Moments

Since December when we learned the hard way about all of TJ’s food allergies, I would be lying if I denied that there were not days that I wished away.   I wished away the moments because I was so fearful of a reaction that I could not wait until nighttime came so that I could be relaxed that I had kept him safe another day. Then, I would start to feel so guilty for thinking that and doubting myself as a good parent.   Before all of this, I had truly felt like I was great as this new role of Mommy.   TJ was thriving and so happy all the time.  I felt that that had to do with how we were both raising him.  The world of food allergies and eczema truly made me doubt all of that for awhile. That irrational thinking was definitely not helping any of us at all.   Therefore, with lots of prayer and faith in God,I have really been recreated, for lack of better words, as a different, stronger person. However, since I have always been one who cannot tell a lie, I must admit that there are still moments, not days, when I start to wish away  to a day when we can all eat dinner together like a family or when I don’t need to worry about issues like cross contamination.   As awful as that sounds, it is simply the truth. It doesn’t make me a horrible mom like I used to feel about it.  Instead, it shows how much I care as long.   However, I didn’t want to waste my days away worrying anymore.  I have always been a planner who writes everything out and then gets right to accomplishing that list. “Don’t put off until tomorrow, what you can do today” has always been my motto in life…really, to a fault sometimes.   Anyways,  since eczema and food allergies are beyond my total control, time has become my friend. While I trust in God to heal TJ, I do have to remind myself to slow down and enjoy all of these moments even the stressful ones because they will soon become some of the most cherished memories of my life. Here is the link to a poem that helps me to remember this exact thing as we smile on…

http://www.bellebebes.co.uk/2014/08/the-last-time/

Donating Breastmilk

While I am still going to give it a few more days, I have started to research how to donate breast milk.   I have 228 ounces still in my freezer pumped between May 20-June 12. TJ’s skin is on day 4 of being so much better and much less itchy.   It has also been 4 mornings in a row that I did not give a bottle of breast milk.   I still find it so crazy that such a small amount of coconut could be affecting his skin.   And by small amount I mean that I only used a serving of coconut creamer in my morning cup of coffee.   It amazes me that even after my body metabolizes it, it can still be irritating his skin through my breast milk.   Coconut was considered his lowest allergy and thought to not even be a true allergy by both allergists before his food challenge of it.   In fact, Allergist #2 told us that we could try coconut at home without a doctor.

Unless there was something else in my milk that I had been eating that he is allergic to that wasn’t tested.  I don’t even know what that would or could be… cinnamon? tomato? Regardless, I will probably be donating these 228 ounces of milk soon so I looked up some organizations and Facebook pages. If TJ can’t use this, then I definitely want another baby to be able to so we smile on..  

Two of the websites I found are:

http://www.hm4hb.net/

http://www.nationalmilkbank.org/

What’s On the Menu- TJ’s Food

Mealtimes are becoming better and better.   However, for awhile there, they were so stressful.  While we are very limited in what we give TJ, there are great resources out there for babies/toddlers and eating.  Here is one of my favorites.

1) http://wholesomebabyfood.momtastic.com/ – TJ loves the meatball recipe especially.   We just modify it, replacing some of the ingredients with ones that he can have such as buck wheat.

2) Also, the following site was extra helpful with how to add more iron into TJ’s diet. Fingers crossed that his levels went up when he is retested in two weeks. http://scienceofmom.com/2011/08/31/practical-ways-to-increase-iron-in-your-baby%E2%80%99s-diet/

3)This third site is a great resource that I do plan to use when I am ready.  (As of now, I am not quite there yet.  Keeping things simple and as they are for the next two weeks until this next round of blood work is done. Why add more foods when TJ has been really doing so well with his current diet? At least for now…) http://www.kidswithfoodallergies.org/page/milk-allergy-recipe-substitutions.aspx

4) The following is the chart that we try to use to ensure that TJ is receiving well-balanced meals.  Grains are most difficult for us due to being limited with wheat, oat, and barley allergies.   Also, egg is present in most breads and baked products which makes it even more difficult. IMG_0772(1)

Eczema/Skin at TJ’s Worst

I debated whether or not I should post some pictures of TJ’s skin when he was having reaction.   While I do want to keep the positive spin on all of this, I also want to show what different types of reactions can look like.  Of course, they are all different from person to person.   In addition, they were often different from trigger to trigger.  Before October, we never saw any of this.   Then, in October, “random” (or so we though) occurrences began… 1) First hives ever! We were terrified and called the pediatrician.   They went away after Benadryl. This was in October before we knew of any food allergies.  While TJ only gets a random hive or two here and there if off of Zyrtec, nothing like this picture, hives still terrify me.

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2) In November and December, TJ would sometimes start the morning off with this type of red rash on his face.   This was once again before we knew about food allergies and it would last about an hour until it faded with no medication. Looking back at this, I believe it occurred on mornings after I ate something like pizza (with cheese) for dinner.

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3) These two pictures were sent were from daycare in April and May.   Since all of the allergens were eliminated from his diet and my diet at this time, it is difficult to pinpoint a cause.  Both times, I rushed to see if he was okay and he was there smiling.   The redness disappeared after about an hour again.   We believe it was a contact reaction of some sort to either something environmental or food.

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However, like usual, TJ doesn’t fret much and instead smiles his way through life, an important lesson he has taught me…just have faith Mommy and smile on…