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…

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

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.

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.

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.

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.

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…

A Little “Experiment”

Since April, TJ has had red blotches of eczema on his legs.   While some days it does not bother him, other days he often scratches it, making it worse.   Throughout pollen season, doctors and allergists explained that this is due to the pollen.  Then, during times of cutting teeth, it was also because of that.   If he was sick, sometimes it would get better for awhile as his immune system was doing what it was meant to, attack a foreign sickness, instead of his body.  Therefore, sometimes, his skin would clear up for a day but then usually ended up worse than before. Well, pollen season is over, TJ isn’t sick, and he has his four molars.  Yet, his skin still has these problem areas. Now what?

Instead of emailing my poor allergist every other day (ha!), I play mommy detective…

After the coconut milk challenge did not go well, I asked the allergist if I could still continue to use my frozen stash of breast milk.   Since I stopped breastfeeding on June 12, I have been using 6 ounces of it every morning for his first sippy cup of the day. Since I was told that I did not need to cut out the coconut creamer I was drinking on the elimination diet because his level was so low, this allergen was and is in all of the frozen stash of milk.   Our allergist said that since he had been fine with it all along, there was no reason to cut it out now.  There was such a minimal amount in my milk, if any. Now, I was wondering, was he really fine with it all along? I mean I know his random skin hives and rashes got sooooo much better once I cut out everything else, I still felt uneasy about the leg eczema that developed in April.

So I continued using this breast milk once a day, but it was always on the back of my mind since we challenged coconut. Therefore, for the past two days, I have not given him this milk.   Instead, I only give soy.   Maybe it is a coincidence that only time will tell…his problem areas of eczema have been amazing! While they get slightly red if he is sweating or too hot, for the most part, they are gone! Part of me feels guilty for not cutting it out of my diet way back in December, but I can’t think that way.   I was only following doctors’ instructions.

If this continues, I may be looking into organizations to donate breast milk to. Feeling extra hopeful, so we both continue to smile on…

My Wish…

While I have come to accept that these challenges are ours and I would not change our lives for the world, there are circumstances that would make these shoes easier to walk in.  I also don’t wish harm or these experiences to anyone because I want them to feel pain.   That is the last thing I would want and why I really want to help educate other new moms before our experience with yogurt becomes their own.  Like most circumstances in life, I go into them with an open-mind ready to be empathic to something and someone that I may not fully even understand.  Since as early as I can remember, I have always tried to imagine walking in the shoes of others to understand them better.   Thus, it has become part of who I am or maybe it always was there.  I know it is a quality that many lack which I respect as everyone is different.   However, there are times that I wish that without feeling my pain,these people were able to open their eyes and hearts to better understand it and why I act the way I do..

To the other moms who only see us stay at play group or an event until nuts will be present or yogurt bites and sippy cups filled with cow’s milk are present, I wish you could understand that I pray for the day that TJ and I can socially eat not worried about cross-contamination or toddler sharing and exploring.   I wish you understood that sometimes even coming to play is a step in the right direction because it is a step out of our comfort zone and often something on these dates sets off his eczema, causing him discomfort.   However, I am trying to find the best balance for TJ.

To those who wanted to support me through some of the most challenging months ever for me, questioning the elimination diet was not what I had needed.  “I would never be able to do that.” … “I would definitely switch to formula.” … “Your health is important too for TJ’s well-being.” Those were just some of the comments that came my way that I knew had good intentions behind them.   In those moments during the months when I could not explain what I was feeling, I wish you had seen inside my thinking process. The choice to continue breastfeeding on a strict elimination diet, continuing it for six months, was ultimately decided through great prayer.  It really wasn’t about me and all to do with what was safest for TJ and his well-being which has become a lot to do with my own.

To the person who rolls their eyes behind my back or thinks I am being way too overprotective and need to let TJ live a little, I wish you had been with us the night that this all started, the night that TJ tried his first taste of yogurt, that unbearable minute in time that I watched TJ turn from fussy to extra fussy to then a swollen body and face full of red blotches and hives, not responding properly.   I wish you had been with me to hear the fear in my voice and see it in my eyes as I watched his symptoms becoming worse and worse, praying that he would be okay.  I wish you had been with me on that ambulance ride where there was no Epipen, just oxygen in case he stopped breathing.   I wish you had been on that ride when we hit traffic and there was nothing that I could do but wait and watch and hold on to TJ and the mask, praying that we could get to the hospital in time.

To the person in the car in front of me driving 20 miles per hour on a 35mph road trying to piss me off, I wish that you knew that I currently am trying to distract my crying son from making his leg eczema bleed and really wanted to get home before it did.  Please just drive the speed limit.

To the person sitting behind me at the traffic light that now has turned green giving me the finger because I did not hit my gas the second it turned from red, I wish you heard me loudly singing “Hot Dog Hot Dog Hot Diggity Dog” while holding his hand and dancing to distract TJ from scratching his face as I also check through the mirror if his face has hives or just red marks.  I wish you could have been in the car with me on the way to work/day care back in January when he fussed, started scratching his body, and then his belly and face were all covered in huge red blotches…. I wish you had been in that ambulance that morning worried that it would be like our first ambulance ride …

To the person who thinks that it is a little much that I put a shopping cart cover over the cart before TJ sits on it and that a little bit of germs is good for a kid. As I see you chuckle,  I wish you knew that it has nothing to do with the germs and instead, everything to do with avoiding unnecessary exposure to possible allergens that will cause his skin discomfort and hinder him outgrowing these. I wish you knew how it felt to not be able to take away something that causes TJ so much pain and to only know how to best limit it which is what I have to do.

To the person who thinks it is awful that I make sure people have brushed their teeth before kissing TJ especially on the lips.  Please know that there were several months that kissing him on the lips was not even an option for us.  I wish you knew how often there were mornings when kisses and touching his cheeks would cause red blotchy spots to develop.  I wish you had been a fly on the wall those mornings last fall and winter when we had to hold TJ for an hour or so after they developed to keep him from scratching and irritating his face more.   I wish you had seen how heartbreaking it was and how it erased his otherwise everlasting smile for awhile.  I wish you understood that we make sure to show him that he is loved in so many different ways that it is clear through his smiles he feels and understands it.

To the person who categorizes me as that “crazy allergy mom,” maybe you are right.   Maybe I am just an overprotective crazed mom of a child with multiple food allergies and eczema, but maybe that is only because you walk through life wearing your shoes, and not mine. But for now until the next phase of this all, these shoes fit me perfectly so we walk in faith and smile on…

Aftermath of Coconut Milk Challenge (July 11-21)

Following TJ’s coconut milk challenge that ended with a dose of Benadryl and monitoring him, I tried my hardest to remain confident that God is protecting him and leading our steps in caring for him.  However, it was extremely difficult.  Anxiety started to creep in more than it had been in awhile.   The intensity of this worry and fear did not show up until Monday since my husband had been around all weekend.  However, once Monday hit, against my will, I started to dread everything that we had planned this upcoming week.  The fact that TJ was cutting his fourth molar and his eczema had flared up, irritating him, was not helping the situation. I feel guilty even using the word dread to describe my emotion.   But, it was only the truth.   I myself wasn’t feeling well so that too intensified it all.

On Tuesday, one of my close friends had invited all of our friends over for the day and night.   If we had kids, they were invited too.   While I had always loved going there, being at the beach, and hanging out with friends, I had a sick feeling in my stomach.   Before Friday’s coconut milk challenge, I had seriously been considering staying over even though of course I worried, mostly about food and eczema issues.  (It’s funny how different the things are that I worry about now than what I worried about five years ago or even a year ago.) Anyways, after the challenge, I was feeling 50/50 on whether or not to stay the night with TJ or not.

Then, I found out that my friend would be making a pesto dish for dinner for us.  I knew then I could not go.   Now, this is where I battle myself often.   Do I realize that this may be irrational to most people? Yes! Do I realize that this may even be over the top for TJ? Yes! I even asked my husband over and over again (as I tend to do) what he would do and what he would have done? While he helps most of the time, his answer did nothing but frustrate me even more because I really had just wanted someone to decide for me.   It was easier than making the “wrong decision.” My husband continually told me that “I don’t know what I would do because I am not in that situation. There is no wrong decision.   You have to do what you are comfortable with.” Then, after more questioning, he admitted, “I probably would not have taken the 1+ hour drive down at all because I am lazy.” Oh, how I love him. =) Grrr… I was so frustrated mainly with myself.

Final decision: I drove down for the afternoon which only turned out to be two hours about since TJ’s skin was not good.   The car ride both ways where not so pleasant because cars are where TJ scratches with his eczema the most.  Car rides involve me singing, talking, praying, dancing, tickling, playing, trying not to crash…. Car rides with a screaming baby/toddler are the worst especially when he is making his skin red and more irritated.  Part of me did not want to go at all anymore due to his skin but then I thought about what was best for TJ and I thought getting out and socializing with a bunch of other kids would be great.   Not once, did I think about what was best for me. I wasn’t sure that is what you do anymore as a parent…

I did not stay over though because being in a room where pine nuts were being used to make a pesto that would be eaten by everyone and then being in a room full of people eating it, were both not what i was comfortable with for two main reasons. 1) We don’t know TJ’s reaction to nuts at all.   Both his classroom and our house are nut and peanut free for now.   We only know he is allergic based on his blood work results and levels.   After seeing that a low 0.6 level of coconut could make TJ mildly vomit, I did not want to find out whether or not he would have a reaction, nor what it would be.  2 ) We were over an hour away from home.

The hardest part was once we were there, I wanted to stay and he was having so much fun.   I know I am not suppose to think this but on the way home, I could not help but to reflect on the fact that if our story did not involve multiple food allergies and eczema, we probably could have managed staying over even without all of our packed belongings.   However, this is our story for a reason.   TJ is mine for a reason and despite how frustrating Tuesday was, I am forever thankful and blessed.

However, Tuesday night I cried my eyes out to my husband.   I wanted to stay.  I felt like I was losing a lot of friends with all of this.   I felt like I was very alone with it all.   It is a difficult feeling to describe when you have so many family and friends around you to be grateful for and then you have these thoughts of being standing solo.Then of course, I started to feel worse for getting frustrated because I know that so many people are living with much worse battles than ours.

The next day when a friend nicely questioned my decision to leave, asking questions about it.  At first, I started to get upset because I felt like this confirmed people everywhere in my life were judging me and how overprotective and careful I am with all of this.   Then, I realized that this is exactly what I needed and wanted.   I wanted people to question my actions and driving forces and reasoning.   I felt more connected that way.

On Friday, we had plans to see some amazing family and to go swimming in their salt water pool which I had read and heard so much about it being good for eczema.   However, TJ’s skin was much worse and as we were getting into the already packed car, he scratched at his legs so much that they both started to bleed. We couldn’t go…

However, TJ napped and woke up, like usual, smiling on and on…