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Fitness After Kids

October 25, 2016 //
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Over the last almost 6 years (quietly sobs), I have often been asked the question “how do you keep your workout routine with kids?” This post does not have a one size fits all answer. Because life is not one size fits all. Hell, even my little world isn’t always the same size. Some days work better than others.

A normal day consists of me waking up at 5am on the dot, coffee, then a workout. My workouts vary between Pilates, running, swimming, strength/weight training. On Saturdays I do karate, outside of the house. It gives me an hour guaranteed to myself. By waking up at 5 on weekdays, I ensure that I am up way before my boys (I have late sleepers, I know I am lucky with that) and I am able to usually get an uninterrupted workout in. This wasn’t always the case when they were shiny newborn humans, but as they age, their sleep normalizes.

There are mornings where littles wake up earlier than usual and I have a workout buddy. At this point, Jackson, the 5 year old, can pretty much fend for himself. Sometimes he joins me, sometimes he wanders around the house entertaining himself. Alex, well he is 2 so I keep him with me if he is up. In general, that is how I balance it. They have learned that mommy works out. It is just a simple fact of life here. They have to respect that time for me. I am happy to include them, but I am going to workout. There is no parent guilt in that either. We need to take care of ourselves in order to take care of others. You are important too. I am a firm believer in that!

I have been sick for over 2 weeks now. A cold that turned into a nasty sinus infection. I am on the mend. Due to some amazing herbal tea and a black walnut nasal rinse. When I woke up at 5 today I decided I wanted to run. I haven’t ran in over 2 weeks. I couldn’t bring myself to hop on the treadmill. I have a love/(mostly) hate relationship with the treadmill. I decided I would get Jackson off to school and then go running in the forest preserve with Alex. I had EVERYTHING situated to operate smoothly. I spent the time I would usually be working out getting everything together. I even filled the tires on my BoB while Jackson ate his breakfast. I was ready to do this.

Then we were in the drop off line at school. I asked Jackson where his backpack was. It was still at home by the backdoor. He forgot to grab it. School on a good day is 10-15 minutes away. The main road we take is currently under construction. It can now take 20-30. This morning was on the longer end. Meaning now my run was going to be pushed back significantly, maybe canceled all together. I had to drop him off. Then drive home, grab bag, drive back, then hike it back to the forest preserve. That is how today’s workout started. See, not even my days are always one size fits all.

I did all of that. In a little less time than I had predicted. There was less traffic on my second drive to school because it was a bit later in the morning. Some of the work rush was gone. When I realized this I thought “Ok, you can do this. This is working out fine.”

The run started off ok. Not great, but manageable. He complained for the first 5 minutes that he wanted to walk, but eventually I was able to persuade him to stay seated. He had his ipad, snacks, milk, and box (it is a small house he carries everywhere that is filled with his favorite toys. He even sleeps with it). Around the 1.8 mile mark again he asked to walk. We were nearing the park, so I lamented that he stay seated for just a little while longer, we would be at the park soon!

I am a momma of my word, so freedom he had! He enjoyed himself for a bit. Then said he wanted to walk. Refusing to get back into the stroller. No matter how many times I said the word iPad. Which, I suppose is a good thing. But I digress.

There is no running when you are walking with a wandering two year old. I had about 2 miles of actual running under my belt. And about 2 miles to get back to the car. The real adventure began. He had me wander up this cool tree house pavilion area we had never walked up before. I followed his lead.

He is my wild child. My wanderer. My very free spirit. My mischievous little dude. Jackson is a free spirit in many ways. He also has his moments as a 5 year old seeking independence yet still utterly reliant on our constant attention. He has that internal battle going on right now. Such is life at 5, nearly 6. When Jackson was 2, he was not quite so independent. We went on runs all of the time. I cannot recall any specific times he ended up walking. I remember once when he was an infant and I ended up carrying a crying baby home. For the most part, he always stayed put, very content. Alex is a whole different person. He seeks adventure and his curiosity is overwhelming. He has no fear. (unless it is Halloween decorations or the movie Ghostbusters) He didn’t want to stay with me. I tried the trick, “ok mommy is leaving, bye bye!” And I started to stroll away. HE LAUGHED AND THEN STARTED TO WALK INTO THE WOODS! He cares not for my silly bluffs. He knows I am not leaving him alone in a forest. Sigh, he won.

My 4 mile run today turned into a 2 mile run. With a lot of toddler walking. And a nice maybe half mile sprint at the end when I finally got him back in the stroller. Then we headed home. It was after 11am. I had wanted to be home around 10ish. But all of my plans fell apart one by one. I adapted. I didn’t forget to stretch, despite the late time. We headed up to my Pilates Room. I am getting too old to not get a post run stretch in. That shit is for 20 year olds, not women who have had two kids and turned 31 almost 6 months ago. We better stretch our muscles and cool down, lest we want to regret it later.

Which really made my entire chaotic morning worth it. That photo on the right. I can’t! My timing just worked out perfectly. The milk swan. I will be incorporating it into all of my future mat classes! Ha!

The takeaway here? The insightful lesson I wish to impart on all parents looking for a way to stay fit and have tiny humans running around your feet (literally)?

FLEXIBILITY! I don’t mean in the backbend sense. I mean in the life sense. You have to be flexible with yourself and your schedule. You have to be flexible with your children. You have to adapt to your surroundings. If that means that you only run 2 miles, but get a nice 2 mile walk/cool down in, then shit, at least you were moving! You moved 4 miles on your own two legs. Your kid was moving on his legs too! I even threw in a few walking lunges while pushing the empty stroller. Alex stopped in his tracks and laughed, but hey, you are the reason I am doing these buddy. 😉 Get back in the stroller and I won’t look so silly!

But seriously, sometimes you have to workout with your kids around. Squats in the living room. Pull-ups on the play ground. Pilates at 5:45 am and saying “hey sweetheart, sure join me,” when a tiny human waltzes in at 6:15. Sometimes your run gets pushed back by a good 30-45 minutes because of a forgotten backpack. I was annoyed, but hey, I survived and I ran! Shower was later, lunch was later, but I got that milk swan photo, so life works out sometimes.

For more Pilates and Fitmommaboom inspiration, follow me on Instagram Colev25 You can find frequent Pilates videos, my often self deprecating humor, adventures with two male tiny humans, and any other random things that inspire me to hit share.

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Categories Exercise, family, fitness, Momommahood, Uncategorized

Through a child’s ears

August 26, 2016 //
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Parenthood comes with the expectation that you will experience new things. It is filled with constant and changing experiences. You could write a year’s worth of blogs on every kind of new thing parenthood brings. There is only one on my mind today though.

My oldest started Kindergarten yesterday. We survived. That is for another post. It has given me some more one on one time with my youngest. For a couple hours 5 days a week I have an only child of sorts. This morning we spent a little time outside. While watching him I got lost in thought.

At the beginning of August Alex had tubes in his ears to clear up chronic fluid behind his ear drums. This fluid had caused temporary hearing loss in him. We don’t know exactly how long it had been causing it, but it was long enough to impact his speech development. Which is how we discovered the hearing loss, at speech therapy.

Since then I have gotten to experience what it is like to watch someone whose hearing loss had been remedied rediscover the world. That is an experience I have never had. It is an experience that I would not have assumed came with parenthood. However, let me tell you, it is one of the most amazing things I have ever been a part of. The difference in him has been amazing. He is no longer frustrated. He is sunny and happy and oh so chatty.

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He notices all of the sounds around him now. Small noises grab his attention. He is amazed when he hears a cacophony of nature outside. This morning I took time to explore this with him. We could hear so many different tunes. Birds tweeting, crickets chirping, acorns falling from trees, a small plane that flew over our home. We heard it first and then hunted the skies for it until it became visible.

We play this game where he says momma and I respond with a quiet whistle. He laughs and laughs and says momma again and again. I can whisper things to him now and he responds. He has more words and is saying phrases and sentences. He articulates what he needs, wants, and doesn’t want.

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Watching him hear the world clearly for maybe the first time in his life has been one of my favorite parenting experiences. I was so worried about the surgery. I felt awful for not catching this sooner. I was hoping with all hope that it worked and we didn’t put him through that for nothing. Every one of those concerns were squashed. When his face lights up at the sound of a bird singing a song, I know that I wouldn’t change a thing. He has allowed me to watch someone exploring their world for the first time in a new way. You can see the appreciation he has for his newfound hearing ability. I can see it in his face when he hears some random noise that grabs his attention. WOW OOOO OHHH Mamma!! I can see it in his face when he starts a conversation with me. I can see it in his face when he now says hi and bye to everyone that walks by him. I can hear it when he answers questions with real formed words instead of babbling or yelling. I can hear it when he plays his mamma game. I heard it that very post op night when he went from say “wah” for walk to “WALK.” Right now he is sitting at the end of the couch we are on together. He is hugging our cat and saying “kikey.” Which is a word he couldn’t even come close to forming before.

There are tons of thoughts on seeing the world through a child’s eyes. But for me, I am hearing the world through a child’s ears. And it is phenomenal.

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An Understanding and Forgiving Heart

June 1, 2016 //
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The rather hot button topic of what occurred at the Cincinnati Zoo last Saturday has been weighing on my heart since Monday morning. I have to admit I was a little oblivious of what had happened until then. Alexander woke us up Monday morning bright and early and very hysterical. Upon calming him down, we slowly started our day. That included lounging on the couch after he wiggled his happy way off my lap to go play with his toys. I decided to put on the news.

I heard a brief preview of what they planned to speak about after the commercial break. My husband sat to my left. Immediately I got a bit snippy about it. They couldn’t tranquilize him? He had been more apprised of the situation and began explaining things to me. I have to admit that my initial reaction may have leaned a bit toward the masses reaction. Then I opened my ears and my heart and listened carefully to the whole news story.

I sat on my couch in my pajamas and glasses. Sipping my coffee. Watching my very precocious and often mischievous 20 month old play with his things, often stopping to give me his sly little grin. I heard the story. I heard how he had been told just moments before that he could NOT go play with the gorillas. (Here is an account from an actual witness) And then in the blink of an eye he was gone. 15 feet below in a pit with a male Silverback Gorilla, who by all accounts, regardless of intention, was still whipping that small boy around. I turned to my husband and tried to say, “that would be Alex. Alex would do that.” I couldn’t. The words stopped in my throat. The tears came to my eyes. I physically ached in my chest. I hurt for that mom. I lost my breath for a moment. That could be Alex. He would do something like that regardless of my stern warnings not to. Jackson would likely never. Even at Alex’s age. Certainly not as the 5 year old he is now. He has always been more inclined to follow my rules. I discovered months ago that I am dealing with the horse of a different color when it comes to my sweet baby boy. I have to parent differently.

Yesterday I had to stop at Walgreens. Alex did not want me to hold him the entire time. He wanted down. He is a wanderer. He is a fast wanderer. I was waiting in line. Within the 10 minutes we were there he bolted from me 4-5 times. One of those times we were near the exit and I was trying to pay. I had to chase after him before he made his way out of the automatic doors. I then attempted to physically restrain him between my two legs so I could finish paying. He broke free. This time taking off towards the back of the store. I again, had to stop what I was doing to chase after him. The mom in line behind me smiled and laughed. I said “He is a wanderer.” As I scooped him up into my arms. She smiled and said “I remember those days.” Her older maybe 8 year old daughter closely at her side. Alex then dropped a sticker he had been clutching in his pudgy little hand for the past 30 minutes. She immediately bent down to grab it for me and hand it back to him. As I was clearly trying to wrangle him in and get him to listen as best I could. I don’t let him run free. I tell him over and over and over and over that he HAS to listen to mommy and he HAS to stay with mommy. He has two choices, stay with mommy on the ground, or in my arms/cart/stroller. He smiles and runs away. Some kids are that way.

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Alex. My bright, mischievous, brave 20 month old.

If you know me in person, it is fair to say I am not a neglectful mom. You may have even picked that up through following this blog or even my Instagram account. I have committed fully to being their mom. Maybe sometimes to the point that I do get burnt out, but yet here I am. Recently I was very sick and my husband offered to put the boys to bed without me. They both wanted me to come up and help. Jackson said “It’s fine, she will hear us crying for her and just come up anyway.” So even my very bright 5 year old sees me for who I am. A workaholic. They are my life, my job, my world, my very breath that keeps me alive (and often drives me crazy). So when Alex has wandered off for a brief moment and I happened to be in the middle of something else, paying, talking to Jackson, or any of the other million tasks I am balancing in one day, does that make me a neglectful mom? Does every other parent out there never ever take their eyes off their precious porcelain offspring? Have they never looked away for the briefest of seconds only to find their human being child with an active brain has made a decision for themselves regardless of all of the parenting they have done over the years? And the non parents, don’t even talk to me. As Ygritte would say “You know NOTHING Jon Snow.” Seriously, non parents should not judge what an actual parent has to go through with their child on a daily basis. You have NO idea. I had none before I had children. I admit that. Accidents happen. We balance life and children and pets and cleaning and interaction with other people in public and sometimes things happen. I have had bad parenting moments where I think “holy shit. I will NEVER forgive myself.”

There I was sitting on that couch. My heart aching for the whole situation. Then reading up further to try and learn more. I saw the angry cries for harm to come to the mom. I read people calling her a bitch. I felt a rush of anger myself. Anger towards the people who are so hateful. I am saddened that an endangered creature lost its life. I am more happy that a little boy didn’t lose his. I am empathetic towards that mom. Because being a mom is literally the hardest thing I have ever done. It takes a lot out of you every day, no breaks. You do so much as a mom. I wanted to hug that mom. I wanted to tell her that I am so happy her boy is alive. I wanted to tell her I am sorry that people are so cruel. I wanted to ask these people where is their outrage for people hunting these majestic creatures in the wild to eat them? Or the outrage for the NATURAL habitat loss? Are you as angry about that? Or just over the fact that Harambe lost his life while in captivity, a life that arguably was no life at all? Are you going to call for petitions to end the poaching and habitat loss? Are you going to call for petitions to help save them from Ebola? The link has some information about the real threats to Gorillas. Where is your outrage for the injustice that led to them being endangered animals? Or did you just wake up feeling like “today I could really go for some mob mentality?”

I am not perfect mom. Truly. I do dote on my boys. I am devoted to them. My world revolves around them. Sometimes they are all I have to talk about because I am literally with them 24/7. I have a wanderer, as I call him. I don’t know what he will be like when he is 4. I hope that we have worked through this a bit by then. I cannot guarantee that. He has a wild side. He is adventurous. He has little fear. He goes for things he wants when he wants them. He is incredibly smart and understands the world around him. He has a sly grin that lets you know he is about to do something you are not going to agree with. He is only 20 months old. So from one mom with an inquisitive child to another, I want to hug you. I want to tell you I know mistakes happen. I know you didn’t set out to go to the zoo and have your child end up in a gorilla exhibit. I don’t think you’re a bitch. I don’t think you should be thrown in jail. I empathize with you.

I came across this in my IG feed and it seemed fitting for what I have been grappling with since Monday. The world would be a kinder place if we all took a collective deep breath and remembered this.

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Not Your Average Hershey Squirt

March 19, 2016 //
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I have been so swept up in taking care of Alexander lately. As I should be. We are a few days shy of 6 weeks of his GI issues. He HAS had a few good days mixed in, but then a day or two later it seems to return. Thursday night I took a step back mentally and thought about how consumed I have become. I need to be his advocate because he cannot be his own, but a lot of other things seem to get pushed aside. One of those being posting recipes. I am still cooking and there have even been a few that I meant to get around to sharing but didn’t. Another has been making fun shaped meals for the boys.

Yesterday morning despite all the craziness. Alex waking up hysterical at 6am. It being a school morning. Me trying to film a Pilates video for MarchMATness. (I failed at that! I caught up today though!) I made time to make them a fun breakfast. Jackson was over the moon. Alex yelled at me that there were blueberries on his heart shape french toast sticks. He grumbled then picked them off. You can’t win them all I suppose. Jackson loved his shamrocks!

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We had his GI appointment on Wednesday. The only way I can describe it is awful. I have never felt like I wasn’t being heard quite so much at a doctor appointment. I explained what we had been dealing with. Chronic diarrhea with maybe 3 good days mixed in over nearly 6 weeks. She did a brief exam of him. She diagnosed him with CONSTIPATION. She actually said he is constipated and that some loose stool is just slipping around clogged poop. She then prescribed a colon cleanse for a 17 month old toddler! A colon cleanse. Following the 3 intense days of being on a laxative, she wanted him to be on the laxative in a smaller dose for SIX WEEKS. At which point we would “discuss weaning him off of it.” She also told ME that I don’t feed him enough fiber, without even glancing at his food journal I have been keeping meticulously. She said I also give him too much milk. Something I have never been told by a pediatrician regarding either of my boys. I always fill out their food intake at their physicals. I questioned her on this. My mom was there, she questioned her on this. She just kept insisting he was constipated.

I informed my husband. I told him to pick up the prescription. He did some research while I was getting us all home. Miralax is not greatly received and there are many concerns with it. We both then researched child constipation. We did come across some instances of loose stools being associated with it, however they were more of smears or as I like to call them “hershey squirts.” Alexander has full blowouts sometimes up the back diapers. Multiple a day. These are not squirts. They are giant diapers. We decided not to start any laxative that evening.

The boys’ pediatrician is off on Thursdays. During the day I contacted my husband’s aunt, who is a pediatrician and family doctor. She lives out of state. I explained in great detail Alex’s history and asked her opinion on the diagnosis and colon cleanse. She was very concerned with that recommendation and definitely wanted us to speak to Alex’s Pediatrician as soon as we could. I called her and left a message yesterday morning. When she got back to me she read me the report of the GI with a tone of surprise in her voice regarding the constipation diagnosis. I seconded her concerns immediately and explained that was the exact reason I left a message for her. We were NOT happy with that and we don’t feel that he is constipated with the amount of poop he has. She agrees. She has been at our side since this started 6 weeks ago. She has seen some of the diapers. She told me to monitor him over the weekend. Thursday he had a couple better diapers. Much more normal consistency but yesterday there was another loose one. She is on call all weekend if we need her. She wants to touch base next week. Possibly perform another exam herself and then if it is still ongoing send us to another GI at a different hospital.

I have told people this before, but I am so thankful for her. She has truly been wonderful through all of Alexander’s issues. She has been by our side. She has tried to find us answers and if she couldn’t she has tried to find a specialist that can. She listens to what I have to say. She calls me back whenever I leave a message for her with questions, updates, or concerns. She sees the boys when I want them to be seen. I am not sure what life would be like with another pediatrician and I don’t even want to know. I am so incredibly grateful I came across her when Jackson was 2. At that point in time I didn’t know that she would be such an integral part of our family’s life.

We still don’t have all the answers on Alex, but that is ok. We have been working hard to figure it out. We have someone who is his champion and wants to help us solve this. We will get there. It may take some more time. I have come to terms with that. This whole situation could be worse. We could have a pediatrician that acted like the GI we saw, and then we would be nowhere at all. Luckily, we have one of the great, amazing, and incredible apples in the Pediatrics world.

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He hates EB

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He LOVES chocolate

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These two are my world!

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He likes flying

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I Would Be Lying

March 15, 2016 //
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Life since having Alexander has never been boring! Today I rushed him to the 45 minute window of walk-in hours at our pediatrician. Over the weekend he had a fever that bounced around. He has been irritable, not eating, and barely drinking. Yesterday the fever was totally gone! Except he was covered in a rash on his torso and kept putting his finger in his ear. I called about the rash, they said that was normal after a fever. By nighttime it had spread to his pelvis. This morning the rash was worse and had spread to his face. When I went into his room his finger was in his ear.

I got them both up, dressed, fed, and out the door in record time. I am talking about 20 minutes here! That is unheard of.

He was cleared of having an ear infection! Phewf. However, he does have Roseola. Another virus. He keeps getting slammed with one after the other. On top of that he still has his chronic diarrhea. It flared up a bit yesterday through today.

Tomorrow he has his GI appointment. Our pediatrician did not want him to wait until the end of April to see one, so she called the GI office and had them figure out a way to see us sooner.

I would be lying if I said that I am not stressed out. I would be lying if I said I wasn’t totally exhausted. I would be lying if I said I wasn’t in a constant state of worry. I would be lying if I said that I didn’t feel anxious every time I went to check his diaper. I would be lying if I said I sleep soundly at night. I don’t. Not one bit. I would be lying if I said that this hasn’t started to take a toll on me physically. Last week I was nauseated for 4 days straight. Terrible nausea that barely allowed me to get off the couch. I forced myself to, because I had no choice, but I was barely able to be upright. It took all of my strength.

I have a hard time asking for help. Maybe I am stubborn. Maybe I am too proud. Maybe I don’t want to bother other people. Maybe I am a control freak. I think it is all of those combined. I have been dealing with 99% of Alexander’s medical appointments, symptoms, issues, hysterical moments, record keeping, etc all by myself. My husband is insanely busy with his company. It is in a good way. Growth! But it just so happens to coincide with Alexander going through this rough patch in his health. Life works out that way sometimes. Good and bad together. Nothing is ever truly perfect. Tomorrow my mom is coming to the GI appointment with me. I feel like a slight amount has been lifted off of my shoulders. Even if it means she takes Jackson into the waiting room because he is getting squirrelly from being at the 1203043 appointment of his baby brother’s.

This is hard on him too. He breaks down crying anytime Alex is hysterical and upset. He tries his best to always make him laugh. He just wants his little brother to be happy. Today at the pediatrician he started getting upset before she even performed an exam on Alex because  Jackson knew Alex wouldn’t like it and was going to cry.

I would be lying if I said this hasn’t been hard on all of us.

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Bros

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This pretty much sums up how he has felt since Friday 😦 

 

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Categories Food Allergy

Waiting

March 3, 2016 //
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Waiting is hard. For your entire life you learn little lessons in patience. They build up and are supposed to help strengthen you. As a child you eagerly await Christmas morning. As a teen you eagerly await the day you can get your driver’s license (unless you were like me and pushed it off as long as possible). As an adult you wait for all kinds of things.

I am finding all of the lessons in waiting that I experienced to be completely useless. We have waited so much with figuring out answers for Alexander. The more I end up having to wait, the less patience I find myself having.

This week we received the rest of his blood work. Alas, the waiting for that is over. Everything else came back negative for IgE allergies. I was definitely overjoyed about that. We are still not giving him bananas or avocado as he has had FPIES reactions to those. As a precaution we are avoiding kiwi, because kiwi is closely related to both of those foods. Eventually in a controlled setting we will test for them, but that time is not now.

This week we have had a bit of a setback with his bowel movements. His diarrhea has returned. I have been monitoring him all week. There have been worse diapers and better diapers. Today has been worse all around. We are up to 4. One was on the floor while he was airing out because the rash has also returned. After the second diaper today, but two of many this whole week, I made the decision to call and schedule an appointment with a Pediatric GI. I need to get some kind of answer in order to help him. Unfortunately, there are no appointments until nearly the end of April. More waiting.

After the 3rd diaper I decided to call his pediatrician and update her on the return of the diarrhea this week. I know she is out on Thursdays, but she is usually in on Fridays, so I intended on leaving a message for her. She will not be back until Tuesday. More waiting.

Waiting is not getting easier. It gets exponentially difficult. I feel overwhelmed with helplessness because I just want to give him a life that is as healthy as possible. I want him to be as healthy as possible. I don’t want him to get rash after rash from loose diaper after loose diaper. I feel a tightening in my chest at any given moment in a bad digestive day. I sigh a lot. I just stare at him and feel my heart breaking for his tiny little body. He has grown to detest diaper changes. I ache for him when he freaks out over that. I have started to let him watch videos on my phone in order to calm him for every single diaper change, even regular pee ones. He just freaks out. Today, that has not helped. His aversion to it is so strong, knowing he has these BMs, that he loses his mind.

I have Jackson, my helper during the days. He is quick to act if I need help with something. Today it was cream while I wrestled a screaming Alex down after he pooped on the floor. A 5 year old shouldn’t have to be my saving grace during a moment like this. My poor sweet oldest child. The other day at his school his teacher asked if he wanted breakfast when arrived. He had eaten at home but said yes. She mentioned there were bananas. Then he said “just don’t give the bananas to my brother. They make him puke.” It is so wonderful that he is so caring but it also breaks my heart that we are even in a situation that we had to drill that into him. He is amazing. His heart is huge. I am definitely way too cranky and short with him way too often. I keep my conversation open, explaining why I am sometimes so stressed out, especially on bad digestive days. I tell him how hard it can be and how I am feeling. I listen to what he has to say about he feels about it. We hug.

Sometimes after naps, Alex wakes up hysterical. Inconsolable for at least 30 minutes, sometimes longer. Nothing can settle him down. There were at least 2 days this week like that. Today and yesterday were better. Those hysterical afternoons are hard. I hate not being able to soothe whatever is clearly causing him distress. More waiting. Waiting for him to ride it out and I try to hold him and comfort him and offer him whatever he needs.

I hate waiting. For once, it is not from our instant gratification society. For me, it is because after 17 months of bumps in the road, I want answers for my baby. I am tired of waiting. I want to help him. I want to have the proper tools to help him. I don’t want to just keep him comfortable and his butt slathered in cream. But it seems for now, waiting is in my foreseeable future. I will be waiting until Tuesday. I will be waiting until April 21st. I will be waiting for his next diaper, anxious to see if it is diarrhea or not. I will be waiting to see if he wakes up happy or hysterical from his naps. Waiting for my answers.

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Rare Disease Day 2016

February 29, 2016 //
1

I love someone rare

It is Leap Day. It is also Rare Disease Day. My sweet little boy is the reason I am talking about this day. This sweet little boy has kept me on my toes since I was pregnant with him. He is always up to something and giving me some kind of scare. From being admitted at 35 weeks pregnant due to low amniotic fluid and possible very early induction to save him, to an umbilical cord that took a wrong turn and took months to close up and heal, to FPIES, to an ER visit yesterday morning because he got his sweet chubby thigh stuck in the crib all night and it was covered in welts, swollen, stiff, and he limped. I rarely have a dull  moment with him.

He is so full of life. He is very brave. I do not see him hesitate in life very often. If he sees something he wants to do, he will 99% of the time go for it. He loves to make me laugh. He loves to feed people or share his food with them. His smile is contagious. I dare you to see him smile and try to keep a smile off of your face. He is a fierce momma’s boy. I say this a lot, but it is true. I am always holding or snuggling him. Did you know, I literally get a standing ovation every time I walk into a room and he sees me. He stands up and claps, cheesy grin plastered across his sweet face. He loves his big brother so much. The way he watches Jackson makes my heart melt. Jackson had his 5 year vaccinations last week and completely freaked out. Alex had been fine mischievously walking around the exam room up until that point. As fat tears fell on my arms while I held Jackson, Alexander walked up, watching. I slowly watched his face transform from curiosity, to concern, to outright devastation, as he too began to sob. I love to hear him say Dada. If I just mention the word Daddy he lights up and says Dada, DA! DADA! That is his biggest buddy. He tries so hard to keep up with the two big guys around here, when they play catch or when they wrestle. Which is frequently to both things.

Then there are the moments where he does scare me because things seem to happen to him at a higher rate than did Jackson. Maybe it is because I am so hyper aware of all things involving him that I notice every small tiny deviation from normal patterns. Or maybe, things just do happen more frequently. It is likely a combination of both. We have had even more situations than I mentioned earlier. I really glossed over things there. I glossed over how scary it was when he was first having FPIES reactions and we had no clue what was happening. I will never forget when his tiny body went into shock and what he looked like. I will never forget the fact that when he was born, he didn’t cry. The cord was wrapped around his neck and the nurse took what seemed like an hour to get him breathing. It wasn’t an hour, it was probably a few seconds, but in that moment, having given birth previously, it seemed like an eternity.

His may not be the most dramatic rare disease. His may not even be the most dramatic case of FPIES. I am so incredibly thankful for that. Every day I am thankful that when it comes down to it, so far, he has just scared us with things that we are capable of managing in a healthy way. It doesn’t take away from the fact that these things seem to happen to him or that he does in fact have FPIES and is IgE allergic to bananas. Most tests came back negative, that one did not. We are still waiting on a few more results, including avocado and kiwi. I can manage these things. I can keep him safe. I am thankful that every day I get to see that toothy silly grin and those big blue eyes and that raspy voice say mom mom mama mom mama mama. There may be moments where I am utterly exhausted or feeling overwhelmed with doctor and hospital visits or just from worry or from regular mom stress, but all it usually takes is a hug and snuggle into my neck to bring me back down. And if I am lucky, big brother Jackson is telling me I am the most important thing in the world, even more important than monster trucks, and you know how much I like those mommy!

Happy Rare Disease Day 2016!

 

 

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Categories Food Allergy

The Halves of My Heart

February 20, 2016 //
1

Elizabeth Stone has said “Making the decision to have a child – it is momentous. It is to decide forever to have your heart go walking around outside your body.” I have known this for the last 5 years, since Jackson was born. It seems to be resonating even more this week. We are on day 11 of diarrhea with Alexander. The pediatrician wanted to see him yesterday when I spoke to her about it. It had been far too many days for her to be comfortable with just riding it out.

In the office he happened to poop, which was actually helpful. Unfortunately, they found black blood in the diaper. Have you ever had moments in your life where time kind of stands still? I would describe it as how they portray it in a movie. A monumental moment in the storyline, where the character seems to move yet the world around them is in slow motion or totally frozen. I have now had two of those moments in my life. This was the second one. I did not expect her to come back and say that. She was gone less than 5 minutes. Alex was trying to tear apart my diaper bag and I was texting my husband back. She sat down to explain this to me. She went through the list of possibilities and what we are doing moving forward. I heard every word, but the world around me seemed to slow down. The smile I had on my face when she walked in quickly vanished. I was oddly aware of the motion of my face changing.

Today, the diarrhea is actually worse than it was yesterday. It has kind of gone back and forth over the past 11 days. He is unhappy at times. Large chunky tears rolling down his squishy plush cheeks. I wipe them away and kiss his sweet little face. I hug him and he snuggles his face into the right side of my neck and shoulder.

He is his normal mischievous self at times. Trying to grab his brother’s robot toy. Tearing apart the cabinet in my master bathroom. Rearranging all of my makeup, serums, and creams. Smiling his big toothy smile as he walks up with his arms out and says “mama mama” He is always a momma’s boy.

This morning I dropped off the additional vials for them to run labs. Now we wait. Now we focus on keeping him hydrated, avoiding an ER visit if we can. Now we hug and kiss him. Now we watch him play as our hearts are in our throats. Now I sleep restlessly and wake often. Now I scrub things around the house because sometimes that is what I do when I am particularly anxious. Now I try to remember that Jackson is having a hard time adjusting to the new way of life around here. Now I try to explain to him that he is important and special too. Now I try to give him extra attention. Now I wonder, where does all of the time go during the day? There is a lot to think of at every moment.

My heart walks outside of my body. Split in half. Each boy carrying a piece with them. The pieces made of porcelain. Alexander’s piece seems to be particularly fragile at the moment. Or maybe it is the carrier of that piece that is fragile. Regardless, my heart has not been my own in a long time. Half a decade. My heart belongs to them and all I can do is sit back and hope with all hope that it doesn’t get even one little chip on it. Knowing full well, the world doesn’t actually work that way. It will get battered and bruised as I sit here with open arms waiting to welcome the halves back whenever they need me.

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Categories Food Allergy, Jack, toddler

The Last 5 Days

February 16, 2016 //
5

Last Thursday we received a final diagnosis for some issues our little guy has been having his entire life. Long story short he has Food-Protein Induced Enterocolitis Syndrome or F-PIES. In simple terms it is a food allergy affecting the GI tract. You can check out that link for a ton more information. He also has a blood test coming up next week to check for a ton of other food allergies. We will have some more information on those in the next coming weeks.

I have known something was off with him since he was born. He has always been a puker. He had a hard time gaining weight. Once we started introducing solid foods and eventually dairy milk (he seems to be lactose intolerant on top of F-PIES), his vomiting and diarrhea continued. The offending foods so far have been bananas and avocados. If he eats them, it never fails, a couple hours later is his vomiting profusely. One time he got so dehydrated and in distress that I rushed him to the ER.

From what I have been reading over the last 5 days, my breastmilk likely was not helping him. I say this because I live to eat bananas. Or at least I did. They are dead to me now. But I would freeze plates of them and eat them like chips. I would eat them in my smoothies every.single.day. Every day that baby was being exposed to something that made him ill. I had no idea.

I did bring this up on multiple occasions. I showed up to doctor’s appointments with a list of symptoms and incidents. Before he was on solids, because he was still happy and not seemingly in pain after throwing up it was dismissed as reflux. However, not a serious reflux so he never needed medication. He would just outgrow it. I was referred to some allergists by our pediatrician after the multiple fruit incidents. We researched them and picked one. When I called, they refused to see him because he was under 1. Since we wanted to see her and everyone else said they really didn’t think it was an allergy because he was only throwing up etc, we waited. I feel awful.

When we did finally see her, we hated her. The whole experience was miserable. I won’t go into individual details, but it was a bad time for all four of us. Then she had no idea about FPIES but thought it could sound like that. She left the room and literally Googled it. She printed what she found and gave it to us. Promising to call us back that week. She didn’t call back until a week later. We went home and found the exact information she gave us on our very first Google search. We were not happy. I called my pediatrician and explained the potential diagnosis. It then clicked with her that she has a couple patients with that and has another allergist who works with them.

I saw him last week. He was amazing. He is very versed in F-PIES. He went through the whole process with me. We scheduled the blood tests. He prescribed EPI Pens, that I now have to carry at all times. He needs them in case he gets to the point of dehydration he got to before the one ER visit. It won’t stop the allergic reaction, but it will bring his blood pressure back up and prevent a more serious situation that comes from that kind of distress on the body. We were given a letter to give to the paramedics and ER so they understand what this rare syndrome is. As we have learned, many doctors are not familiar with it at all.

The last five days have been incredibly reflective for me. I will literally never forgive myself for not figuring this out earlier. I will never forgive myself for eating the very food that makes him so ill and then continue to breastfeed. I will never forgive myself for his struggle to grow during his first year. I feel just terrible. I feel terrible that I didn’t demand more answers. I feel awful that I just accepted the fact that this one allergist didn’t see babies under 1. Why didn’t I pursue another allergist who WOULD see him? Why did I want to see her so badly based on silly online reviews? Why did I just accept his throwing up as reflux? Why didn’t I Google more and more and more? I get a lot of comments for how much I Google symptoms. I always hear that I shouldn’t freak out because of what I had found on Google. What if I had searched a few more terms and come across F-PIES when he was 6 months old? What if? What if? What if? Mom guilt, it is for real. I have never quite experienced it like I have in the last 5 days. I have felt guilty over other things, especially with balancing two kids. They are both playing around me as I type this. Jackson trying to show me some monster truck tricks and Alexander is raiding the pantry. I have fed, played with, read to, and bathed them already today. It is not even 10, so a few minutes to get this off my chest is not a big deal, yet I still feel kind of guilty. But nothing about how I feel over the first entire year of my sweet baby boy’s life. Maybe the next 5 days will be easier….

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Categories Food Allergy

One Day They Will Have Stubble

January 13, 2015 //
0

I have been rather nostalgic lately. There are a couple reasons. Jackson will be turning 4 in three weeks. I have been looking back at his baby photos comparing how he and Alex look as infants. Both of those together have supercharged my mommy emotions. I simply cannot believe how much Jackson has grown. I don’t even remember when his face stopped being so pudgy, round, and baby-ish. Did he just wake up that way one morning? Or did that sweet baby chub slip through my fingers one hour at a time like tiny grains of sand?

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My heart melts looking over these old photos. I truly cannot place how he grew. I cannot believe he is nearly 4. That he is this little boy who likes to arrange his toys and then ask me to take photos of them. He is going to be really good at whatever field he chooses one day because he spends 99% of his time debating me and trying to strike up deals. “That’s a good deal mommy.” Which, is debatable! Ha! He is a very passionate person. Whether he is loving on me or angry at me. Passion seeps through his pours. He gives his all to whatever he is feeling. He tells me I am beautiful. The most beautifulest mommy in the world. He loves to sing and dance. Then he likes to switch it up to “shooting guns” and ninja skills. He recently started getting into fashion. He has been picking out awesome shoes and shirts that do not have characters on them.

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His fingers are still pudgy, but they are much bigger. His feet are still adorable, but they actually get dirty and stinky. His face is still round with squishy cheeks, but it doesn’t have the look of a baby. It has the look of a little boy.

He loves to help me. If it is cooking, helping with Alexander, picking up things that are not his, shopping, everything. Well, everything except cleaning up his own toys. That he hates with that passion I mentioned. He tears up at ASPCA commercials, sad shows or movies, or anything that evokes a sad emotion. His empathy is boundless.

I look back on him being a baby and I understand those moments a lot more. His personality has always been similar to how it is now. Sometimes he doesn’t like to try new things. It freaks him out. I used to get so frustrated at infant and toddler mommy/me classes. He was so frustrated and I never understood why. That is just him. Change and people he doesn’t know well trying to touch him isn’t his cup of tea. I can now reason with him regarding trying some new things. But looking back, it all makes sense. It just takes him a long time to warm up to certain situations. As I parent him now, I have that voice in my head reminding me of that. I have to give things time with him.

I am sitting in the kitchen with him as I write this. He is watching Octonauts. His mouth is slightly open, eyes are wide, and he occasionally smiles at what they say. He keeps catching me staring at him. He asked me for a snack. He didn’t finish his lunch carrots. We just struck a deal, he has to finish all of them, then he can have a snack. Always a deal to be made.

I know he is only 4 but I already feel the time slipping through my fingers. I fully understand how fast it goes. I think it took birthing Alexander for me to realize this. I am now elbows deep in all things infant again. That phase had faded out a long time ago. I hadn’t noticed one hour, one day, one week, one month at a time. No. It just was business as usual. I was raising a little boy. I am afraid of what I will be feeling 4 years from today. How will 8 year old Jackson be? Even typing that sentence made my heart drop. One day he WILL be 8 years old. 8 years away from that tiny little babe I birthed during Snowmageddon! Terrifying.

Alexander is our last child. I think this fact has made me hyper aware to time racing forward while I try to hang on. I don’t want Alexander to stop being this squishy little babe (he could go ahead and sleep through the night though!) I don’t want Jackson to age another 4 years and be an 8 year old BOY!

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I want to hit pause. I want their faces to stay round, soft, creamy, and so squishy. One day I will kiss those cheeks and there will be stubble on them. Stubble. Ok, I have to slow down now. I am getting way ahead of myself.

For now, I will have to keep on kissing those cheeks and staring in wonder at those chubby little fingers. And requesting big passionate hugs from my little passionate guy.

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Categories Jack
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