Oh How I Love His Sensitive Soul

Image courtesy of Lisa B Photography – http://www.lisabphotos.com/

I’ve often wondered to what capacity my son can love me. Part of me wants him to feel the kind of love for me that I do for him but part of me doesn’t because this much love often brings me to tears. The tears are often good, in an oddly painful way. For instance, after one particularly rough day last week as I sat holding my son, rocking and reading a bedtime story, I was moved to tears because I was just glad to be in that moment. It rejuvenated my heart.

I think I’ve learned more and more about my son’s capacity for love over the last month. One morning, before we even made it out of the neighborhood my son vomited. We pulled over and I changed him into a spare outfit. I’ve learned to always have two on hand because he will always need a change at daycare. As we’re driving down the interstate I hear my son giggling in the backseat saying “all gone” over and over. I looked in the review mirror and was horrified to see him shaking the milk out of his sippy cup onto his clean pants. Panicked, knowing he was down to only one spare pair , I started yelling “no no Thomas, no no!” I wasn’t angry, I just couldn’t reach him and I needed to get his attention.

Poor Thomas did not take my reaction well. I’ve never been that forceful and his lip went out and the tears started flowing. Talk about breaking my heart. I genuinely hurt his feelings. I spent the rest of my ride stretching far back to hold his hand as I tried desperately to explain that mommy didn’t mean to hurt his feelings.

Then just this week something else happened. That same night that I was having a moment, I wiped my tears dry so he wouldn’t see them, pulled him a little tighter and started reading a book we read together often. “Night Night, Little Pookie.” We open the book and Thomas always reads the first line “Oh Pooooooooookie, it’s time for bed now.” Then we got to the last page. The same words I’ve read 100 times to him, but I was feeling emotional that night so perhaps I read it differently. or perhaps he was actually feeling my emotions as I read the words. I’m not sure, but I whispered the words to him as I always do: “There are gentle winds blowing and stars all above you. Night Night, Little Pookie. I love you and love you. And love you and love you. And love you and love you.”

As I read these words, I saw something happening. Thomas’ little lip started poking out. He was fighting an emotion and I’m not sure he even understood it, but he was feeling something powerful. That image has been burned into my brain for days. It was amazing to see and hard to see all at the same time. As you can read, I’m even having trouble putting it into words.

He has the best personality and the best heart. I love his little sensitive soul. So we sat a little longer, rocked a little longer, sang a little longer and snuggled a little longer that night. I think maybe he and I both needed a moment of rejuvenation and  together we got there. Oh how I love his sensitive soul.

Eating Like a Dinosaur

As you all know by now, my son has Eosiniphilic Esophagitis. For those of you that don’t, this essentially means that my son has an allergy to something, (what we don’t know) and his body reacts by producing Eos in his esophagus which is an over-production of white blood cells that form scarring that, if untreated, will cause the passage way for food going down his esophagus to become smaller and smaller creating a very scary choking hazard. Additionally, it seems that his body also reacts by regurgitating the contents of his stomach. Unfortunately, you never know when it will happen so connecting that to the food he has eaten has been impossible.

So how do you identify the allergy? Elimination Diet and a lot of endoscopies. We’re currently working with an allergist and for round one, we’ve eliminated 4 major allergens from his diet: Wheat, Soy, Milk & Eggs. In other words, convenience foods are a thing of the past. Everything must be made from scratch. I was very lost and uncertain of where to even start to eliminate these allergens. Let’s not forget that my son also has pediatric dysphagia and his therapist has the types of foods he can eat very limited as well.

Luckily, I have a  friend whose a registered dietitian and she turned me on to the Paleo Parents and they’re amazing recipe and guide book: Eat Like a Dinosaur. I love this book because it isn’t just a recipe book, it has taught me a lot about how removing processed foods and foods our bodies simply were not created to digest can help with so many different issues.

Additionally, they really encourage you to get your children involved in the cooking and baking process. This is really important for us because I work full-time and therefore my time is already limited with Thomas. Add to that the need to prepare ALL of his foods from scratch, and that takes away even more time. So, Thomas does the grocery store runs with me and he helps me cook everything we prepare him. By allowing him to help, he is naturally curious about the taste and he tests everything. Luckily, there isn’t a lot he rejects but occasionally we’ll have to create a second batch to make up for what he eats during preparation. I’m not mad about it.

I’m also very intrigued by and impressed with the untold benefits of simply eating what your body is meant to eat. Not only does it resolve issues related to food allergies, but it also has the possibility to help resolve disciplinary issues, ADHD/ADD, Asthma and more.

The opinions in this post are mine and mine alone. I was NOT compensated in any way for this post; I simply wanted to share something that I find pretty amazing with you.

18 Months – A Letter to Thomas

Dear Thomas,

18 months have come and gone; just like that. I can’t believe it. I feel like it was just yesterday that we were welcoming you into the world.

You are truly the silliest, most intelligent little human I’ve had the pleasure of knowing (and I’m not just saying that because I’m biased). Wow, it amazes me how quickly you’re growing. You’ve experienced a lot of challenges with the GERD/Dysphagia/Eosinophilic Esophagitis diagnoses you’ve received and that causes bad days and occasionally bad weeks for you but despite all of that you continue to laugh, dance and enjoy life. It makes me wonder just how much more you could enjoy life if those had never been a factor.

In just 18 months, you’ve taught me how to unconditionally love harder than I’ve ever loved before. You’ve taught me to slow down and enjoy every moment and I certainly take every opportunity I can to do just that. If we need to stop and pick up leaves, I say let’s do it. If you need to be held a little longer before bedtime, then I’ll hold you and tickle you upon request, and kiss you as many times as you ask and give you as many hugs as you ask because I know one day those requests will stop, or at least won’t be as often. I love seeing you grow but at the same time I find myself begging you to stop. I wish I could slow down time so I could enjoy each stage a little longer.

I know one day I’ll be looking into the face of an adult and not a child but there are three promises I can give you now that I will keep until I’ve taken my last breath. It doesn’t matter how old you are, I will keep these promises to you.

I will ALWAYS be there when you need me.

I will give as many hugs and kisses as you request (and more) and I will rock until your heart is content (and mine); I will kiss every boo boo; I will help you adjust to new situations and though as you get older you will be faced with situations that won’t always come with an easy answer, I’ll still be there to help you through. NO matter what, I will ALWAYS be there when you need me.

I will say “I’m Sorry”

I can’t promise that I won’t make mistakes as a parent. I will, however, promise you that when the dust settles and the realization that I was wrong is brought to light, I will tell you I’m sorry. I will do this because I want you to do the same. Not just to me, but to your friends, to your current loved ones and to your future loved ones. Those two words are so powerful because they set the stage for forgiveness and healing.

I will ALWAYS Love you

I’m your mother so that means no matter how awesome I am (and I’m pretty awesome, just ask me 😉 ) and not matter how amazing you are, there will be times that we will not agree on something and we may even fight. My hope is that you will make good decisions your entire life, but I know what it’s like to be a teenager and a young adult and bad decisions happen. I may be angry, I may be disappointed, I may even feel hurt but there is something that will never change and that is the love I have for you. It runs deeper than any other love could. It’s the awesome part of being a mom. So read these words carefully: No matter what, I WILL ALWAYS LOVE YOU!

Love Always,

Mommy

Therapy is Boring

So here’s the thing about having a smart kid – you know how some really smart kids don’t excel in school because they’re not being challenged? Well, that’s Thomas with his feeding therapy.

Every time he has been introduced to a new training or practicing technique, he loves it. He practices it over and over again and even enjoys therapy if we make it a game. Until he’s done it for about a week, then he’s over it. Now we’re out of new techniques and the best advice that could be given is to take a week long break then go back to practicing. I’m not a fan of this because I fear his progress will come to a standstill and that’s more frustrating to me than you could imagine.

Add to that my lack of motivation when everything must be forced and you have a bad combination. When he’s a willing participant, we make a lot of progress in a short amount of time but he’s strong willed (Really! I have no clue where he gets this from *looks around to see if anyone is buying it*). So when he’s uninterested, he will just completely refuse to participate. When this happens, I feel a bit like this. 

On a positive note, despite taking a break from therapy between sessions and simply focusing on chewing, we got a great report at this morning’s session. Per his therapist, he’s at stage 4 and there are only 6 stages. I was told he’s actually progressing faster than most children do. She equates that to our sticking with the plan and never cheating (haha, if she only knew).

So this week he gets to add steamed carrots and sweet peas to the mix. Carrots by themselves and sweet peas in mesh for practice. Also, snack time at home is now supposed to be focused on the solids that he has been approved to eat and keeping purees to meal times. Thomas’ reaction can best be summed up by Cookie Monster.

Despite feeling like we’re not making the progress we could make, I’ve been watching Thomas closely and it’s amazing the progress he has made. I’m so glad we sucked it up and moved forward with Therapy. I am seeing that happy little boy again.

Side note, I did give Thomas a cheat night and allowed him to have steamed broccoli instead of broccoli puree and you would have thought I gave the kid cake for his supper. He screamed “BROC!” over and over and danced in his highchair as he shoved the broccoli in his mouth. I guess for him, as it relates to food, it’s the little things that count and we continue to push forward.

Last Night I was Angry

Last night I was angry and then I was sad…

Yea, this post is about puke. You see, we have celebrated a significant decline in Thomas’ vomitting. In the last 13 days, he’s only vomited three times but something hasn’t been quite right in his little world over the last five days or so. Sunday night I had maybe four hours of interrupted sleep. As I held him crying, he finally settled but even as he was sleeping in my arms he was whimpering in his sleep. A soft, constant whimper. I felt helpless to do anything but hold him.

Then last night happened. Putting him to sleep is no issue. We read; he grabs “blank” and “Dogga,” his blankie and lovey; and when he’s ready to go to sleep he’ll say “mama, nite nite” which is my cue to kiss his cheek and put him in his crib. An hour later I’m so exhausted that I feel like I may puke so I head straight for bed in the hopes of getting a good night’s rest. I wasn’t asleep for even an hour before the screaming started and I was angry. Not at Thomas, but at the situation. It feels like he can’t catch a break, which means we can’t catch a break either. I’m embarrassed to say I was so angry that I took it out on my pillows…seriously, I’m glad my husband had not yet come to bed because I just needed to release my frustration (I would NOT have wanted to be my pillows last night). Just imagine an adult throwing the tantrum of a two year old and you get me.

I get up, go make a bottle and stop right at his door to take two deep breaths to make sure I don’t walk into his room frustrated. I actually don’t think all of that was necessary because as soon as I walked in, picked him up and kissed his tear streaked cheeks, all frustration left me and I was just sad. Sad for Thomas because he was obviously uncomfortable and not feeling well. For the next hour and a half I held him in different positions to try to help comfort him as he screamed and cried out in pain. We walked the floors, we rocked, I cradled him, I placed his head on my shoulder, nothing was working. Then he simply started crying out “Mama, nite nite, NITE NITE Mama.” At this point I just started sobbing along with him because all he wanted to do was sleep and he wanted me to make it better so he could sleep, but I could do nothing. He was so exhausted he couldn’t keep his head up but he was not well, then it happened. Vomit. Everywhere.

Normally, the vomiting would have been an added frustration but last night it was the sweet sound of relief. It’s at this point he and I actually know what to do to make things better. I strip him down to his diaper and he sits on the floor holding his blankie and lovey while I scrub puke and change sheets, then it’s in to clean PJs and off to bed.  Today will be the test to see if last night was a one time thing or if we’re getting ready to go back into a cycle of non-stop vomiting. Fingers crossed, I guess.

You know, I often feel guilty posting about this because so many parents deal with issues that are far worse than Thomas’. Their children have disorders, medical conditions or diseases that attack the body in ways incomparable to what we experience but the underlying theme in all of this is the same. The hardest thing for a mother to do is see her child suffer, in any capacity, and to feel helpless because you know they’re looking to you to make it better and you can do nothing but be there, crying right along side them.

5 Moments That Make Being a Mommy Worth It

You know the moments I’m talking about. They’re just small moments or gestures, nothing crazy, yet they’re so significant. These moments tend to happen just when things feel like they are falling apart,  you’ve been elbow deep in puke for days, or you’re so sleep deprived you’re sure you’ve gone crazy; then suddenly, your child does something that simply erases all the bad and your heart feels full and you may even shed a tear.

These moments don’t just happen in the middle of bad times. They can happen randomly in the middle of your daily routine, but they happen and in those moments you stop dead in your tracks to take it in. It’s those moments I live for; those moments remind me that I really am meant to be a mommy.  In no particular order, here are 5 Moments that make being a mommy worth it:

Moment 1: Holding a Sleeping Baby

The first few days home when you should be taking advantage of your baby napping by getting some shut eye of your own, but instead you just watch him as he sleeps.

Moment 2: Those First Coos

Somewhere around the 8 week marker, everything stops being so scary to your new baby. It’s at this time you can strap him into the swing and walk into the other room for a few minutes without him crying out for comfort and while in the other room, you suddenly hear your baby cooing over something (maybe a mobile, maybe the ceiling fan, who knows) and those coos are the sweetest sounds you’ve ever heard.

Moment 3: Every First

It doesn’t matter if it was his first time eating rice cereal, his first tooth, his first Christmas, or his first steps. Every first moment was a moment of celebration.

                     

Moment 4: Your Child Learns to Give Affection

My son is learning the art of affection and he knows how to use it to get my attention. Sometimes he’ll want to hear “I love you” so he’ll just look at me and say “mama” then stare at me expectantly. When I respond with, “I Love you,” his face lights up, he smiles and he snuggles down. He has learned how to give big bear hugs and sweet kisses as well. Recently, while working from home, I had my back turned to him typing an email response when he randomly ran up behind me, wrapped his arms around me, said “mama” and gave me a big smack on the cheek. Of course I immediately stopped what I was doing because how could you not?!

                        

                       

 Moment 5: Your Child Starts Expressing His Own Unique Personality

My son certainly has a personality all his own. He’s extremely expressive and he’ll do ANYTHING for a laugh. Because of this, he keeps us on our toes and keeps laughter in our home.

                           

What are some of your favorite moments?

Update: Tests and Puke

This week  was rough and yet we’re still not any closer to having an answer.

On Tuesday, we had a Barium Swallow Study where he ate different foods and textures, mixed with a bit of Barium, while sitting next to an X-ray machine where his therapist watched as he swallowed each bite.

Tuesday was a rough night. We were up all night as Thomas proceeded to scream and cry out in pain every hour or so with stomach pains and acid reflux. It seems the Barium may have triggered his reflux to go into overdrive (not sure how or why). By Wednesday morning he was sick as the constant refluxing often causes upper respiratory issues which only makes the puking issue that much worse. Regardless, we carried on. First up was a 15 month check up and despite the three shots that made for one unhappy baby, it went well. He’s way above average developmentally (I already knew he was, nice to get confirmation 😉 ).

Next it was off to the Pediatric GI Specialist. Here we talked through his symptoms and discussed all the possibilities (of which there are a lot). One big thing she wanted to look at immediately is what happens to the food once it is inside his stomach. When there’s continuous vomiting, blockages and intestinal twisting are always a concern. So that was today, another Barium Swallow Study.

The results showed no blockages or intestinal twisting, which is great news. Sadly, however, it means we still don’t have real answers.

Next steps

We continue with feeding therapy and double his dosage of Prevacid to see if there are any improvements over the next 2 months.  If not, then we do an endoscopy to check for eosinophilic esophagitis, which is a clinical way of saying we’ll test for inflammation of the esophagus resulting from food allergies. Fingers crossed this works because I’m not sure how many more times I can bring myself to clean and scrub puke.

My main focus is to relocate that little boy that dances  and sings “nom nom nom nommy nommy” every time he eats again.

The End….

I Didn’t Sign Up for This!

Interesting how I created this account right before my son was born, now 15 months later I’m finally posting again. Why did I wait, you might ask. Well, I wasn’t sure if I wanted to be labeled as a mommy blogger, and I couldn’t figure out exactly what I wanted to talk about, but now I have some things to say, so sit back.

Meet Newborn Thomas:

OK, fast forward to now, and this is what you get

Happy, healthy Thomas! Well, he was…..

You see, at 4 months after several doctors visits, a change of physicians, and finally a moment where I screamed at the physician to stop talking over me and listen, we got a diagnosis of GERD. OK, that’s manageable, right? Well, things were going well but periodically they’d take a turn for the worse and the medicine would stop working. When the medicine isn’t working, I have a fussy, crying baby that pukes ALL the time and fights the burning sensation he gets from horrible acid reflux.

I didn’t sign up for this. I signed up for the occasional puking episode due to a stomach virus or fever. i didn’t sign up for cleaning puke daily. I’ve scrubbed it off my floors, from my wall, from myself and so many times from his car seat. I’ve thrown away sheets because it’s just too much to think about cleaning.

Somewhere around the 9 month marker, Thomas stopped gaining weight. On the outside, he still appeared happy and healthy. He was an eating machine, but no weight gain. At 14 months we went for a feeding evaluation where Thomas was diagnosed with Pediactric Dysphagia, a feeding disorder that essentially means he doesn’t accept and chew food properly so his body has to work overtime to absorb nutrients, he is at risk for choking and aspiration pneumonia.

Now, 4 weeks into therapy, it feels like we’re back to square one. My happy baby that used to dance at dinner time while singing “nom nom nom, nommy nommy nommy” now screams through dinner time. Every car ride is a nightmare because he’s refluxing the entire ride and often puking. He’s refusing food, he’s not sleeping through the night and I think I may lose my mind.

Next steps is a Pediactric GI Specialist that will be testing for Esophageal abnormalities and looking at food allergies because switching from solid foods back to purees should have resulted in less puking, not more…….hold on to your hats because this is going to be a bumpy ride.