Laryngitis, 42 Bites and Failure To Thrive

I'm not done yet. I know it seems like it, but I'm not.

I've lost my voice for awhile now. I haven't had time or energy or inspiration to write anything and I'm not sure how long it will be before I'm able to do so again on a regular basis but I wanted to get some things down during this time so I don't forget.

Things have been good at times, blissfully incredibly wonderful. We've done a lot of incredible things in the last few months and have had visits from friends and family. But life has also been difficult and draining and frightening.

I'm going to borrow text from an e-mail I sent to some wonderful blog friends who have inquired in the last month or two because I literally do not have the energy or the time to come up with something new but I want to get this all down so I don't forget. Because I figure someday soon, things are going to be better and when they are I want to look back on this time and see how far I've come.

Myles' first birthday was April 28th and I cannot believe how fast this year has gone. He's walking. Oh my GOD. And he's sweet and and smart and funny and happy (sometimes) but he's also difficult and emotional and high maintenance (I think the politically correct term is spirited and man is he ever) and he's been diagnosed with an eating/speech delay that we are trying very hard to correct.

I don't get much time to myself when Myles is awake because he pretty much relentlessly demands every second of my attention. And while we have finally got him sleeping mostly through the night (he only wakes up once or twice and I don't feed him anymore), he's not much of a napper which leaves me very little time during the day to get anything done. I rarely get to check my e-mail anymore and blogging is a luxury.

There are times when I have to put Myles in his crib and let him cry (okay, scream) just so I can get a shower or brush my teeth. I didn't think things would still be this intense at one year and I know many of you seasoned parents will chuckle here at my naivete.

The eating delay - at 12 months, Myles still cannot eat/chew/swallow anything that has any kind of texture. This means that we are still feeding him stage 2 (pureed) baby food and it has been a major struggle to get him to eat and gain weight. Two weeks ago at his one year check up he weighed 15 pounds 13 ounces.

The thickest food that he can manage is the stage 2 stuff. If we give him anything with chunks in it, he swallows the more liquidy part and spits out the chunks. He doesn't seem to have an issue with putting food or other things in his mouth, but he just never swallows any of it. On the bright side, I don't have to be as vigilant about him eating the cat food because he won't swallow it anyway.

Thus far he has been tested for Graves' disease and thyrotoxicosis (both negative) and a blood screen has been ordered for Cystic Fibrosis, Leukemia and Celiac disease because he hasn't gained any weight in three months. Yesterday we did a complete upper GI radiology series just to rule out any physical malformations or abnormalities.

Right around the time of my last post I was in the middle of trying to get an evaluation through our state's Early Steps (early intervention) program. Though it's taken a few months and several rounds of beurocratic bullshit, he was finally seen by a team of developmental specialists a few weeks ago. This is HUGE for us because it means we don't have to pay out of pocket for therapy which we are doing for all of Myles' other treatment and testing because our private health insurance has excluded GI conditions as pre-existing due to a reflux diagnosis he got as an infant.

As I suspected, he has no major developmental delays other than the oral motor problem that is causing him to gag at any kind of textured food. This will probably also mean a slight speech delay. At this point, we've had one session with an occupational therapist who has given us some exercises to help strengthen his oral muscles and desensitize his gag reflex.

I'm pretty sure there is something physiological going on that may be causing the hypersensitive gag reflex but that it is not the only problem. After we get the radiology results, we'll be heading back for a radiology swallow test that will show exactly how the mechanics of his mouth works as he eats and drinks and I am hoping more than I can say that this will tell us what is wrong.

I'm not going to sugar coat it. All of this has been so hard for me. I know in the grand scheme of things we are incredibly lucky that Myles' problem is not worse. In the last few weeks, I have seen some kids Myles' age and younger in much worse situations. But the truth is, trying to get Myles to just eat and to eat enough to sustain his weight is a full time job on top of the fact that he's an extremely high energy and emotional kid and I end each day exhausted and frazzled.

I'm still battling major hormonal issues. I quit taking the anti-depressant I was on two months ago because it didn't really seem to be helping with the negative stuff and it basically dulled me out so much I felt like I wasn't experiencing any emotions at all, happy or sad. I went to see my doctor for a new prescription (Lexapro -  anyone know anything about it? I've never tried this class of drugs that works on dopamine rather than seratonin but I'll try anything at this point.) that I can start when Myles is weaned.

I've decided against my better judgment to wean him now because I need this medication desperately and additionally we need to know exactly how many calories Myles is consuming each day (as if I didn't already aside from the breastmilk).  I'm struggling to get enough calories into him with the pureed food. I've been mixing in powdered formula and oatmeal with everything he eats and his doctor has also recommended that we start putting olive oil in his food. Doesn't sound very appetizing to me, but I'll try anything.

Jeff is traveling a lot for work and I struggle to keep my head above water when he's gone. There are many days that I feel like a terrible mother for getting frustrated with Myles when he won't eat or sleep. I don't want mealtime to become a battleground, but every feeding seems like an insurmountable obstacle and I worry about his nutrition/weight gain almost constantly.

I feel like I'm admitting defeat because this isn't working for me. Sometimes I hate being a mother because it just all seems so fucking hard and I know it shouldn't be and I feel like Myles is missing out on a lot because we waste so much time trying to get him to do the most basic things like eat and sleep. I resent that I don't have time for myself and that I'm not taking care of myself the way I should and I feel guilty for resenting anything that has to do with Myles when none of this is his fault.

I wish I had the time and energy to get back into writing on a more regular basis. It would really do me good right now, but I just can't, not only because of time constraints but also because I don't know what to say anymore. I don't feel like I have much of anything positive to write about and the negative stuff is just swirling around in my head in an incoherent jumble.

I hate to sound like such a downer. Aside from the feeding and weight issues, things are pretty good, but unfortunately the eating thing pretty much dominates our lives. And I know I need to take care of myself because my energy and patience levels are nowhere near where they need to be to handle all of this and that really just scratches the surface of how all of our lives have been affected.

It simply shouldn't be this hard, but it is. And my beautiful boy deserves a mom who can handle things much better than I have been. And I want to find my voice again. And I want things to be okay, for him and for me and for Jeff.

Mostly I want to find my voice again.

42 Bites referred to in the title - the exact amount of spoonfuls it takes to get 4 ounces of pureed baby food (mixed with olive oil, oatmeal and powdered formula) into my son in any given meal. Sometimes on rare occasions it takes ten minutes. This morning it took an hour an a half.

***Failure to Thrive - the diagnosis Myles has been given as a result of being under 16 pounds at 12 months when according to the doctors based on his height he should be closer to 22. That's 35% or more underweight for anyone keeping track.

Comments

[HeatherK]

I wish I wasn't reading this so late, so I could manage a coherent supply. All three of mine now have feeding issues of one sort or another and it is draining. My first was a gagger/puker and ate purees til 18months or so. Now with my 6mo--he can't even swallow stage 1s. So it's all bf'ing all the time. There are all kinds of creative things you can do with high calorie purees. If you don't already have one, a magic bullet can be your best friend. For my now 2yo, I would find the highest cal stuff (dinty more in a can or what have you) and thin in with heavy cream. You'll find your way. You will. Trust. It's just who he is and at least with my oldest, she has that same sensitive/high needs personality and then it was most apparent with food struggles, but now it's other things. **hugs**

[Christina]

Oh hon, it's OK to feel overwhelmed and mad at the situation sometimes. Even moms who have babies that are perfect on the growth charts still get frustrated and hate the job sometimes.

I'm sorry you're still having feeding problems. I could make the joke about how you're well ahead of the curve for the toddler years when kids usually turn their noses up at most foods, but I know you're worried about his growth.

It sounds like you're doing everything right. Are there any support groups through the early intervention program or a children's hospital? Meeting other moms with similar issues could help.

And while he may be lightweight, he's one adorable little boy! I can't believe he's a year old now! You're doing a great job with him - just look at how happy he is.

(Oh, and Dopamine anti-depressants are my drug of choice. Love them. If you're in Columbus anytime soon, let me know and I'll tell you all about it.)

[mothergoosemouse]

xoxoxoxo times a billion

You know I'm here for you if there's ever anything at all I can do, but it sounds like you've got it all under control. Really.

And he's just gorgeous. Happy first birthday to your big boy.

[Elizabeth]

Oh Tammie. I have been wondering and worrying and hoping things are ok.

FIrst of all, I can't believe how gorgeous that tiny boy of yours is! He is so grown up now.

Secondly, If you want to blog streams of complaints, I am here to listen. I can't believe what a dedicated and amazing mom you are - you have my utmost admiration. Eli is little (in the 3% range) and a few months ago, when I was spending 2/3rds of my day trying to get him to eat, I thought I would just about my lose my mind. I can't imagine how hard it must be with no naps and no eating...I just can't imagine.
Hang in there. It just has to get better. It just has to do.
Please know that you are a fabulous and amazing mother and I am in awe that you are coping as well as you are.
I think about you guys all the time and I hope and pray it gets easier.
But you are doing such a great job - hang in there, and don't be too hard on yourself.
I wish I had some other words of wisdom - we also tried the olive oil and cream and powdered formula and mushed up avocado, but it did get a lot better when E started feeding himself - he has more interest in the process.
Thinking of you. Hoping it gets better any day now.

[MsPrufrock]

My daughter (P) had quite bad reflux until she was a year old, and it was tremendously difficult and stressful, so to a lesser extent, I know how you feel.

A good friend of mine has a daughter P's age, and at 20 months she has only *just* started to eat anything other than stage 1 purees - in this case, bread. Anything else makes her gag and/or vomit. My friend has some really rough days dealing with it, so I see what a struggle it is.

I'm sorry. I hope they find out why Myles has this issue, and that it resolves itself soon. Not to be Pollyanna-ish about it, but quite often feeding problems suddenly stop depending on what the initial issue was. I hope that's what happens here.

[madge]

Oh, Tammie.

It's true, even those of us with eating sleepers still want to run away some days. So, please, cut yourself some slack in the guilt department.

I hope you'll get some resolution from the coming appointments. I'm so sorry I haven't been in touch. Please know that I haven't stopped thinking about you guys. (We read Nedobeck's Alphabet almost every night. Actually, The Bird reads it to us. That's how much we read it.)

XOXOXO

[mayberry]

Aww, Tammie, I am sorry this is so rough. It IS hard and it IS okay to feel frustrated and angry.

He is beautiful and he loves you and you love him and we love you.

[Motherhood Uncensored]

When he's playing college ball, you'll look back at this and smile.

It's so hard now -- like many other commenters have said, even just plain old reg'lar kids are tough -- I can only imagine how this is for you.

He's simply lovely -- 3% or 100% percentile :)

[Feral Mom]

Beautiful boy! He is just scrumptious. I echo what everyone says above--you're doing an incredible job with limited resources. And, though it may seem like it's going to last forever, you'll get through this hard period and the struggles will become just memories. You will find your voice again--actually, I still hear it here! Write when you can, but even when you can't, I'll be here.

[Amy]

Tammie, I have been wondering about you and hoping you'd post. Myles is beautiful!! I think you ARE handling it remarkable well, even if it doesn't feel like it to you. The stress you are under, worry about him, on top of just the physical stress of a no napping baby etc would drive most moms to the brink. You are doing great, and try to believe that!

[Mrs. Harridan]

It's good to see you writing again, I just wish things were going better for you!

This, too, shall pass. You'll get through it, and that boy WILL thrive! Look at how cute he is. It'll be a struggle, god knows - I mean, I don't know anyone who has as much piled on her plate as you do. But it's got to get better, and it will.

We're all thinking of you and pulling for you. Anything you need, just ask. Wish I lived closer so I could come by with a plate of brownies, a spa gift card, and babysitting time for an afternoon.

[savia]

I'm so sorry to hear things have been rough for you guys. I am thinking about you and sending you positive happy thoughts.

[smussyolay]

TB. i'm sorry. i feel bad that i've been obsessively checking your site and never thought to check in with you personally. how selfish .. "isn't there anything NEW for me to read?" not maybe i should email her and see what's up?

i've heard really good things about lexapro, btw.

i don't want to add more money stress to you, but have you considered a special nurse/sitter person who can give. you. a. break? so you can go out, go for a walk, get your hair done, take a drive, sing to the radio/scream/make a personal phone call? do something only for you? that's okay and perfectly something you should do.

are there support groups you can attend/get playdates for? i want you to be with other humans. one thing i've learned along the way is that the WE is absolutely, positively ESSENTIAL. no questions asked.

thinking of you and loving you from chicago.

[apathy lounge (stacy)]

First of all, I'm just so glad to hear from you. I can't imagine how you're holding yourself together. Doing so much with just the Hubs around for backup is hard enough. Doing it while he's out of town is even harder. Of course, your boy is simply beautiful and you are obviously being so very proactive about finding an answer to his eating issues. Once you do...I know he'll feel like a different kid. And you'll be all the better for it. Maybe his "high-spirited" issues stem from being frustrated. Maybe he's just not able to tell you how he feels. Despite that, I know that he knows you love him and are working hard for him. He's a lucky little guy. And, like Mrs. Harridan, I'd love to live close enough to lend a hand. You know I would.

[Chris]

It's good to hear from you, even if things are rough. *BIG BIG BIG HUGS* When do you find out about the celiac? If that's the diagnosis, DO NOT HESITATE to contact me, ok? THAT I know something about - and reflux can be a symptom of celiac (as well as a standalone thing).

Speaking of which, have they ruled out ongoing reflux? Does he take medicine for reflux? My brother had undiagnosed reflux as an infant - it was described as "he was colicky for three years" and contributed to him being a high-needs baby.

Anyway, I hope they figure out what's up soon - KNOWING is powerful. *MORE HUGS*

[mdog]

sigh. i'm sorry things are feeling so shitty right now. they won't always be this way.

lexapro has worked well for people that i know. hopefully it will work for you, too.

tammie. don't be afraid of the negative topic thing. i know that i would much rather read rants than wonder what is going on with my friend. maybe you could start blogging twitter style, little bits here and there... keep the writing going but without the pressure of creating a grand post, you know? your public, we are not so demanding. :)

be well.

[JO]

What an inaccurate and wholly unhelpful term- "failure to thrive". I've seen that gorgeous, funny, smart, active little booger myself and if that's not thriving, I don't know what is. You're doing EVERYTHING you can, plus another 3 million things, to make sure you do right by him- and it shows.

I agree with an earlier poster that said you'll find your way- well put. Whatever path you take to get there is the right way- and I hope you can see what the rest of us can about what a truly amazing mother you are. I'd have seriously, clinically lost it by now. You are strong in the most important ways.

Thinking of you more than you know.

[Suebob]

Oh sweetie, just sending good thoughts to you. Myles is a darling boy!

[mamatulip]

Tammie, I have been thinking of you so often, and wanted to email but then felt like maybe I was being nosy, or inappropriate. I'm so glad to hear from you.

When those kind of textbook terms get thrown at you, don't lose sight of what you've got within you and in front of you, love. Thinking of you both as you find your way.

xoxo

[Elizabeth]

Tammie...

Cymbalta. You're start off at 30 mg, but when I was increased to 60 mg I finally feel the "normal" that I think everyone else feels...presumably. Minimal sexual side effects. Seriously, check it out if you still want an antidepressant.

[stella]

Wow.

Alright. So Lexapro. Is really the only thing I can contribute to about here.

I took it on and off for several years for my anxiety. Was the only (and I tried several: zoloft, celexa...) that had the most minimal side effects on me. In fact, I never felt like I was 'on' anything - but people close to me said it made a difference in my level of general anxiety.

So I will be interested in how it works for you. Its a popular one.

As for Myles. When will you know something more difinitive?

The private healthcare drama scares me...we have had it for years now..and are now trying to concieve. Its so shitty..our premiums are going up - i can't imagine having to deal with any real serious health issues and drudging through all the beurocracy.

ACK.
thinking of you.

xoxo,
s

[Bethiclaus]

Both my girls had failure to thrive at one time or another. Mimiclaus is actually dealing with it right now. I will be thinking of you in the coming days. Best.

[Denice]

I am rooting for you. I know parenting can be really, REALLY hard. Don't feel bad because it is hard and you are tired and you get frazzled. Do take the meds, if you need them and take it day by day. It gets better and the fact that you care about what is happening and want to fix it is a great sign. Hugs to you and your beautiful family.

[Amy]

Hugs, T. It will get better- I hope sooner rather than later.

Your boy is absolutely adorable!

Sometimes I hate being a mom, too. You don't have to love it all the time to be good at it. And you don't have to be perfect- make sure everyone gets through the day alive- some days that's all ya need to do and it's an accomplishment.

[Debbie]

Sweetie! So glad to hear anything at all. Myles is gorgeous!! You will both survive this and in a short time it will seem so inconsequential.

Lexapro - good. I am very close to someone on it. Very light anti-depressant with few side effects but it made all the difference in the world for my friend. good luck and know that you are loved.