More doctors, sunny day, soccer diva...

Walter and I feel a lot of relief in knowing we made it to Isaac's first birthday. Some days and many nights were spent wondering how we were going to keep plugging along with our crabby, high needs boy. But we did it! And I can officially say that our days are better, nights are questionable, but as of Thursday I have an explanation for why our nights might be so miserable.

Because Isaac and I love hanging out in waiting rooms and meeting new doctors, we saw an ENT for a consult. The recommendation for this came from the Feeding Team because apparently a lot of the kids in the program have enlarged tonsils and adenoids. I was going to hold off on scheduling the appointment, but I called and we got in right away which also meant that Isaac had three appointments in one day. Turns out it was a good thing we went because apparently Isaac's tonsils are "enormous" which also means his adenoids are enlarged, and what does all of that mean? Well, he needs them removed, but she won't even consider the surgery until he's eighteen months. Most likely, this is why he is a "mouth breather" and drools a lot, and snores (really loud) and breathes really loud, and the reason for why he still needs to sleep upright. She actually said it's a good thing that I've kept him in the bouncy seat because otherwise his tonsils would constrict his airway too much. This could also be one of the reasons he's having trouble eating.

Did you know there's a nifty tool that can suck ear wax out of your ear? Yep. Isaac can tell you all about it. Just an FYI, ENTs have really cool tools. The doctor discovered fluid in his middle ear--so technically we have three ears??? So, I was very confused, and for the record, this does not mean he has an ear infection, because it isn't that kind of fluid. We were then sent over to Audiology where of course I was questioned as to why I did not have his hearing test repeated after he failed the one in the hospital. Obviously I couldn't tell them that I left a very curt message for the people who kept bugging me to have it done and told them in no uncertain terms, that they should never call me again because I was tired of them calling me and he was having a surgery in a few months and I wasn't worried about his hearing. Yeah, couldn't share that little bit of information. With that said, I felt really fabulous when they tested how his ear drum moves and one of them doesn't really move. We have a follow-up appointment in six weeks or so to check the fluid and then he'll also have his hearing checked that way I'm not a delinquent mother. I think I'll schedule an appointment for Isabella too.

The ENT also referred us to have a sleep study. Or in Isaac's case, an awake and scream study...that should be interesting. She also referred us to Genetics, because she feels that we need to rule out any of the syndromes related to Craniosynostosis, so we have that appointment in June. I thought about just skipping genetics altogether assuming it was important only in the case that we would have more children, which we aren't. But after asking another doctor, it sounds like a good idea regardless of the fact that there will be no more babies in our house unless they are visiting.

We left the Cleveland Clinic just in time for Isaac's one year check-up. Where he was totally bummed about getting some shots but very excited to show off his clean ears to Dr. Leslie. Between the two appointments he made out pretty well with two tongue depressors and two stickers. This appointment also confirmed that he needs physical therapy, which I already knew because at this point I'm basically a doctor. No, actually he's had a curved spine since he was born and all this time I've been like, "what's up with his back, don't we need to do something about his back?" So yeah, now we do.

It turns out his stool sample is completely normal which means his pancreas is functioning as it should. Delivering the poop to the lab was quite an adventure. Try explaining to a stubborn three year old who has her own plans, that you have time sensitive poop to take to the lab. And then try explaining that this time sensitive poop only happens once a week and therefore, this poop is extra special and important. Yeah, it didn't go over very well and there were many "poop" related questions until I reached my limit and said there was no more talking allowed until after the poop delivery was successful.

And after all of that we went to OT and Isaac did quite well. He didn't gain any weight this week but they weren't worried because last week he did really well in terms of weight gain. I'm really glad we're working with the Feeding Clinic. The Occupational Therapist, Dietitian, and Developmental Psychologist are amazing. I don't think I could handle the stress of feeding Isaac without their support and encouragement. Feeding Isaac means daily and weekly we take two steps forward, one step back and that can get really discouraging. The good news is that he's consistently eating two ounces of pureed food a day and anywhere from half an ounce to two ounces of fortified whole milk. I know, it doesn't sound like a lot, but for him, that's some major success.

Last Sunday we had the special treat of a beautiful day and spent just about every minute of it in the backyard and later in my parent's backyard for our first outdoor dinner of the year!

Mommy, watch my beautiful dance!

Isaac wasn't too thrilled with the day.

Mommy, stop taking pictures of me!

Mommy, take a picture of this really cool rock I never did see!

As you can see, those six ounces Isaac gained a couple weeks ago went straight to his belly.

Soccer diva

A mad Isaac (he didn't want a hat on his head and is obviously very good at folding his body completely in half)

Mommy, I'll take a picture of guys! Let me take a picture! I want to take a picture! 

I walked Isaac around and around the yard and the woods and the driveway....finally he fell asleep...

Some quotes: 

Repeat the following scenario as many times as you can possibly imagine for one day...

-Isabella, when I'm done nursing Isaac we're going to go. Did you hear me?

-Yes.

-What did I say?

-I don't know. 

-Isabella you need to go to your room and you can come out in five minutes.

-I don't like five minutes, I like ten minutes. 

-Even better. I'll see you in ten minutes. 

This one happened about a month ago but I keep forgetting to write it down...

-Oma, that's not how you spell 'Maya'

-How do you spell it?

-You just have to look on Sarah's blog! 

-Mommy, after you had Isaac your belly got smaller, and smaller, and smaller until it zipped right up!

As we were pulling out of the park yesterday, a high school student walked by with his jacket open and no shirt on and I heard Isabella say, "zip it up, man." Then she asked, "mommy, why is that man walking around showing his nurshes? I never want to see that man again."

Next time I'll share pictures from Isaac's birthday.

Happy Birthday Isaac!

In true Isaac fashion, he decided to only sleep for a few hours last night. He was just really excited to bring in his new year. I'll write more tomorrow...well, probably not, Isaac has three appointments...maybe in a few days. Isabella woke up this morning very crabby and wanting to know when the party starts. She's also wearing her sunglasses (inside) because our house is "too sunny". Isaac did say "mum mum" when he woke up (first time), so I guess I'll forgive him for not sleeping! Turn up your sound, because of course there's music with the video! Enjoy! (I wouldn't enlarge it, that just makes the pictures even fuzzier). 

finally, some success!

It feels like it's been such a long week and all day today I've been wishing that Isabella was born with volume controls (including a mute button). I kept reminding myself that it is Friday and I am so excited that Walter will be home this weekend! He's been working a lot of weekends, which is totally a bummer, but this weekend it's supposed to warm up (I might even have to shave my legs. Don't worry, it hasn't been since last summer that I shaved my legs, that would be a little extreme, but let's just say, it hasn't been a priority) and tomorrow we're going on our monthly double date with Sarah and Michael. This week I found out that a friend is moving and I'm taking it really hard--like, really hard. No, don't worry, it's not Sarah! If Sarah were moving you wouldn't hear from me again because I would move with her. We're a package deal.

We've made major progress this week: Isaac is finally drinking milk out his squeeze bear! What is a squeeze bear you ask? Imagine a honey bear (the plastic one you buy honey in) and add to it a food grade straw = squeeze bear (because you squeeze the milk into your child's mouth). I told Isaac's "team" at the Feeding Clinic that I would rescind all negative statements, including the one in which I stated to my whole book club that I "hate this dumb squeeze bear." As usual, Monday night I was dreading our daily attempt to use the bear. Trust me, until this week it presented ten minutes of complete torture for both me and Isaac. And then, BAM! (like Emeril) he drank the milk without screaming! Yes, I was cheering, I was jumping up and down and clapping, and I was SO proud of Isaac (I was proud of myself too because I almost gave up that bear several times)! And thankfully, he's kept up the good work all week and gained a whopping six ounces! So finally, at year, he's doubled his birth weight! He has two more pounds to gain before he is within his own proportion of weight and height. His goal each week is to gain 10-13gms/day and this week he gained 24 grams per day! So basically, he's a giant and I need to start lifting weights because he's getting so heavy. Just kidding. Speaking of weight lifting, do you want to know what my birthday present to Isaac is? Signing him up for the gym nursery! I've been waiting a year for this because for some reason they don't take kids until they're twelve months. So yes, on his birthday, we will be at the gym and I will be working on my six pack.


Isaac can't stand being put on his tummy, but this was actually the first time he didn't immediately protest and actually lifted up his head (and what picture of Isaac doesn't have a string of drool attached...he was also very into hanging his tongue out of his mouth all day)...

This egg just might hold the key to the universe. It's also a very special egg because it kept Isaac entertained all day Sunday....

Isaac loves balloons. His liking of balloons is kind of out of control. He gets so worked up we have to take it away because he starts panting and can't catch his breath...such a unique child!

"Girlfriend, this is MY balloon so you better back off!"

Watching The Dinosaur Train. Isaac's personal favorite is Word World--he thinks the dog is hilarious.

Stella's been making me pretty jealous lately. Every single time I walk into my room this is what I see and I wish it was me...

This is what they were up to while I was taking a shower....

(This pad thing is supposed to be some sort miracle worker for getting Isaac to sleep. A lady Walter works with sent it home with him the other day and Isabella has claimed it as her own)

Most common face made by Isaac....

Yay! Da is home....

"Whoa, this wand thing is pretty cool...."

Bummer, she saw me...fun's over....

Here's a rough sketch of my garden plan (Linda, you are the expert, let me know if I should make any changes!)....

Have a great weekend!

pants, make-up, and my ballerina....

This morning when I put my pants on Isabella looked at them and said, "I don't like those pants." Um, okay. Do you want to know what my mom did when we told her we didn't like a pair of pants she wore (and they really were ugly, I promise)? She came to pick us up from school, in the middle of the day, in the middle of a school assembly, wearing those ugly pants and a (fake) nose ring. Seriously. I'm not kidding.

We spent most of the day yesterday at my parent's house. My mom picked up the kids in the morning so that Walter and I could take a nap and despite the horrible night we had with Isaac, he managed to be rather comical throughout the day. And Isabella, well, she's in a stage of defiance, which includes lots of whining, falling on the floor, and exploration--in places she shouldn't be exploring. Meaning, Jesse's make-up bag which contains things like, a Trish McEvoy "planner" (yes, apparently you buy "pages" to put in a very nice make-up "binder"), foundation from Bobbie Brown, and several kinds of lip gloss and several kinds of mascara. Need I say, Isabella took an interest in Bobbie Brown products? Mmmhmmm. Let me just commend Jesse for remaining calm, cool, and collected!

Some of Isabella's latest artwork:

Boy with a balloon

Self Portrait

The red thing on her head is a crown--duh!

Hunting for spring last week....

"Mommy, look at this pile of mud! Come walk in it! Why won't you walk in the mud, mommy?"

Man, my sister really needs to clean her room. And what's up with Ariel, her clothes must be around here somewhere.

"Mommy, just watch this dance competition. Look at ME! I'm Angelina!"

"Mommy, if you won't dance with me I'll just dance with this animal"

And I leave you with her signature move...

Exhausted....

Reader Warning: This is a negative post. People always comment that they're happy for a positive post but this is just the way it is--sorry.

There is no other way to say it, Walter and I are simply exhausted. Last night Isaac screamed from 10:00 p.m. to 2:00 a.m. Next week is Isaac's first birthday and I'm so excited but I'm also discouraged because there was so much hope in mind for the changes we would see by April 13, 2011. I'm trying to focus on the good things, the things that have changed. He's happier during the day; he can get around on his own; he's starting to entertain himself; I can walk out of the room without him screaming (most of the time); he's loving and strong and brave for his little self.

But I'm exhausted. This past year has been the most draining year of my life. During Isaac's first hours we feared the unknown as we knew there was a birth defect but didn't know yet what that meant. In his first weeks we anticipated the CT scan which would show if his brain was okay. Then we waited until the neurosurgeon and plastic surgeon made their final recommendations for surgery. Then for six months we tried to forget about the pending surgery and just live. We prayed. A lot. We cried. We held him a little closer each time because we knew what he would endure while he was still so tiny. We prayed that if it was God's will he would be healed and we prayed that if it was God's will he would come through the surgery. Once the kids were in bed, Walter and I would lie in the darkness and share our fears with each other. With each month before the surgery, the thought of handing him over became so much harder--he was getting a personality, smiling, and we were falling in love with him.

Then we spent twelve hours knowing that our son was in God's hands. Then we spent twelve more hours watching him fight the breathing tube. Then four days waiting for him to nurse. And then five days blown up to twice his size on fluids.  During those four days we waited to see what taking the bandage off would reveal. Though the results were good, I spent a month trying to get used to my changed baby. Two weeks were spent cleaning the incision and applying ointment. Days were spent crying. We were so thankful though. And we prayed.

Not only did I feel disappointment with his head and the fact that I no longer felt connected to my baby, but he still screamed...all the time. Why didn't the surgery make it better? I still don't know.

Then we waited to see if he would need the helmet. Yes, he needed the helmet. Then we tried to get used to the helmet. I hated it.

Then he stopped growing. Still screaming. I was told I just needed to be tougher on him. He depended on me too much. Let him scream. Dumb doctors.

Not pooping. Why can't anyone just tell me why he doesn't poop? He needs to gain weight. Nurse him more.

Finally, some good news--the plastic surgeon was thrilled with the results of the surgery! Still not growing. Might need a G-tube. Nurse him more. Give him a bottle. Feed him solids. Give him formula. Don't you think I've tried all of that!? Still screaming. Not sleeping. What do I do? Will someone just tell me what to do? More doctors. Lactation consultant. Dumb GI doctor. Feeding Clinic. Lots of phone calls. Lots of dumb music while I'm on hold. More doctors. Blood work. Good GI doctor. Medicine. Medicine not working. Why is he still screaming? No sleep. Developmentally on track. Finally gaining but not enough. That's okay, we'll take it.

He's happier during the day but why is he still screaming?! I don't know. Maybe there's no explanation. Maybe that's just who he is--I hope not. More praying. Please, please just let him sleep. I jump when he wakes up and my heart starts racing. We never know if he'll go back to sleep after nursing or if he'll just scream. Please don't let him scream too long. Tell us what to do. We just don't know what to do. On bad nights he screams for three hours or more. It doesn't matter what we do. I cry. I want to run away. I don't want my own baby near me. Walter tells me I'm doing a good job. I don't feel like I'm doing a good job. He tries to help but there's nothing either one of us can do. Should we have the CT done? I don't know. Should we see __ doctor? I don't know. I cry. We try not to get mad a Isaac. We hate that we take out our exhaustion on Isabella. I know I've already said it, but we just don't know what to do. 


Tired of talking about Isaac. Tired of complaining. Tired of not knowing what to do. Tired of being tired of my baby. Tired of nursing. Tired of looking like crap. Tired of not caring what I look like. Tired of drool. For almost a year I've been looking forward to his first birthday. Surely a one year old wouldn't scream for hours in the middle of the night. Surely a one year old would eat food. Surely a one year old would sleep a little bit more. Surely a one year old wouldn't sleep in a bouncy seat.

Today Walter said that maybe by the time he is two it will get better.