Empty Uterus Syndrome

As usual, things have been nuts around here.

We got the results from Lennon’s DNA back – she is 100% “typical” – which means that she has no genetic abnormality what so ever. I am actually shocked. I thought with multiple birth defects and low amniotic fluid (etc) that it was almost a guarantee. Alex was so happy when the news came in that he cried. I have mixed fillings. I am relieved but also still stumped. Something is still going on with my child and I am still no closer to answers.

She missed her MRI due to a major traffic jam on the freeway and that needs to be rescheduled. She missed her last speech therapy appointment for the same reason. Lovely.

She did see the cranio-facial plastic surgeon and the neurologist. The neurologist thinks she has CP (which is what is causing the shaking, in his opinion) but wants us to bring her back after her birthday to be diagnosed definitively.

The CFPS said that she had some gaps in her skull (hence, huge gap in the corner of her eye) from the surgery that her body was trying to fill in with new bone. Apparently this is rare and is also quite painful. This is our one and only theory as to Lennon’s strange behavior. I am afraid to hope that it is something this simple.

I’m also afraid to even post that she seems to have snapped out of it.

She still isn’t eating great most of the time (sometimes she eats like a champ) but at least she is eating like a typical toddler now. By that I mean she will eat fruit, french fries, some veggies, yougrt…you know…what SHE wants to eat.

The CFPS also said that he is hopeful that she will not need any more surgeries for the craniosynostosis. I am hopeful but going to keep my guard up until she is a teenager and stops growing as rapidly, because you just never know. Can’t ever trust cranio.

So the plan now is to get the MRI to rule out Chairi and then hope like hell that she doesn’t revert to her zombie-like state again.

I stumbled across a few blogs by parents of children who have had heart transplants today. Most of the time I try not to think about the fact that Lennon needs heart surgery too. It’s just more than I can deal with right now and, hopefully, something I won’t have to face for awhile.

Alex has been struggling with UTIs lately – which is not good news when you have a brand spanking new kidney transplant. Hopefully this next round of antibiotics will knock it out.

Other than the medical drama (what else is new?!) things are going well around here.

The girls birthday is coming up in a few weeks. I can’t believe they are going to be TWO! And they are getting ready to potty learn. Evelynn is more interested than Lennon is but I bought them some Yo Gabba Gabba underwear and I’m going out today to get the potty and some carpet soap. We’ll see how it goes.

Evy is also talking up a storm…we are up to five word sentences now. Len is right behind her. She’s a bit quieter, but talks well when she decides she wants to.

Nolan.

Sigh.

Muh baby.

He is starting to cruise. He is in size 24 month clothes. He has two bottom teeth. He is going to be a year old in less than nine weeks. *sob*

I also think that HE is thinking about weaning. I never thought he would want to so soon, he has loved nursing, but he has less and less interest these days. I think he’s just too busy to stop and sit down to do it. He has also started occasionally sleeping through his 5/6am nursing session. I’ll keep nursing him as long as he keeps showing interest, but I’m saddened to say that it may be the beginning of the end.

In between running around like crazy people to different Dr’s appointments we also had the privilege of meeting up with some bloggy friends earlier this week. I haven’t asked her yet if it’s okay so I won’t say who it was – but I *will* say that they were even nicer than I could have imagined and I was so, SO thrilled to meet them. How awesome, after reading someone’s blog for YEARS to actually get to meet up? Her’s was one of the very first blogs I ever started following.

* Hubby messed up his meds today. He took them 3 hours late and it is VERY important that they be taken on time. Everything seems to be okay though – thus far.

* Lennon is having her DNA run to check for any genetic disorders although the geneticist said that he does not suspect any based on her physical exam. We have five more weeks to wait for those results.

* The neurologist said that he thinks she has CP (cerebral palsy) and that is all that he thinks that she has.

* She has been eating better. Not nearly enough food (toddlers her age need about 1,000 calories a day – I’d say she gets about 500 on average. Maybe. On a good day.)

* She has an MRI on September 14th, which I would be raising hell about (not soon enough) EXCEPT that I, Evelynn and Nolan all have a cold and I expect Lennon and Hubby to get it next.

* Hubby’s name is Alex.

* Well, actually his name is Victor and he goes by his middle name, which is Alexander.

* I freaking LOVE that name and was pissed that he wouldn’t let me name Nolan after him.

* Lennon is also going out to Los Angeles with Hubby (I mean Alex) next Monday. He has an appointment with his transplant team and she has an appointment with her cranio facial team.

*I need them to check out the huge jagged gap I found in the corner of her eye socket.

* Evelynn has the most beautiful hair I have ever seen. Is it strange that I am jealous of my own child’s hair? I have NEVER had a good hair day. Lucky stinker.

* Nolan still seems to be suffering with the ear infection. The antibiotics are 1/2 gone and he has an appointment at the end of the week. He keeps pulling on his ears (both of them now) and is really fussy. No fever (anymore). Hmmm.

* Tonight I take my last birth control pill.

* I am having my IUD placed tomorrow morning.

* I am freaking terrified.

* It is 7:45pm and I JUST put dinner in the oven. Bad mommy.

* This picture, by the way, shows Lennon in her typical state. Zoned out, crammed into some sort of object not made for a human to fit into, covered in something (stuffed animals, blankets, whatever) stemming with her blankie and sucking her thumb. Trying to ignore the world around her.

This concerns me.

However, she does not do this ALL the time. Other times she is very social. Paradoxical.

I am a talker.

It’s how I deal with things. How I process.

This means I tend to talk about my kids, and, mainly their “issues”, and mainly LENNON’S “issues”. A lot.

I know that a lot of people probably think I’m being dramatic or attention seeking and they can assume whatever they want but really, I just need to get it all off my chest sometimes. Okay, a lot of times.

I’m not looking for sympathy. I’m looking mostly to vent but if you want to brainstorm with me that is also always appreciated

Because I know that it probably gets really, really old listening to me prattle on endlessly about cranio-this and developmental-delay-that I try to do most of my “talking” on my blog(s) and Twitter. I figure that way people can either read it if they care to (I’ve connected with a lot of other mommies in similar positions!) or not.

So when my IRL friends and family started following me on Twitter I took pause.

Should I remove the link to my blog(s)? Should I stop Tweeting as explicitly about every detail of my life?

In the end I decided to leave everything as it was.

The same rules apply, in my opinion. Just because you are my friend or relative in real life does not mean that you HAVE to follow me on Twitter or read my blogs. You can still choose to ignore my blithering and I won’t be offended one bit.

(And in case you are wondering this post in NOT in response to anything or directed at any one of you in the least. It simply occurred to me that I’ve never addressed this and figured that perhaps I should. )

This is also why I have recently stopped PWPing my pictures. I figure if I’d pass you on the street and you could see me and my kids and learn our names that way then why the heck am I trying to be anonymous online? Eff it.

So how about you? Do you follow or are you being followed by people who you know in real life? Do you sensor what you say because of it? Do you worry about the “drama”?

Did ya notice? Huh? Huh?

Go ahead and look around, I’ll wait.

Do you see what’s new?

I finally broke down and bought my URL. Yes, I know. It’s a big deal in LaLa land. I am also contemplating a new blog design. We’ll see how the funds pan out for that.

On a more somber note, Lennon’s swallow study did result in a diagnosis: oral dysphagia.

While I am thrilled that we have a diagnosis and, thus, we are supposed to finally be getting help…the help is way. too. slow. in. coming.

I emailed that video of Lennon refusing food to her pediatrician at the same time that I posted it here. About three weeks later I received a casual response asking how Lennon was doing. NO mention of the video or anything.

After the swallow study they scheduled her for therapy. Two weeks out. Then screwed up and cancelled it accidentally, and then said that they no longer had any appointments available until early next month.

I had a few choice words for their customer service department and now she will be seen in another week and a half.

This is bull sh*t.

Seriously.

Her public health nurse came out for her 6 month eval in the mean time (they evaluate the twins to see if they still need early intervention services every 6 months) and she recommended an appointment with a psychiatrist. She said that she felt and Autism diagnosis may be appropriate.

Still haven’t heard back from them either.

I hate feeling helpless, and I also hate what I have to do to feel empowered which is to call and make complaints and freak out at people until something gets done. That’s what I had to do when I realized that Lennon had craniosynostosis and that looks like what I am going to have to do now.

I’m not pushing for an Autism diagnosis because, honestly, I’m not convinced that that’s what it is. I’m not convinced that it’s not either. I know I’ve said it before but some of the things she does screams “AUSTISM” while others seem so completely UNautistic.

All I know is that my child is having some sort of VERY SERIOUS issue and even though she is supposedly hooked up with all of these special services and early interventions and yadda yadda yadda…here we sit while she wastes away! ridiculous.

::Sigh::

Lest this blog become a bitter rant about the worthlessness of the American medical system in it’s current state, my next post will be cute and fluffy and chalk-full of baby/toddler/twin cuteness. Promise. And I promise that it won’t even be a gazillion days from now. Cause I bought my URL and now I’m going to use it.

I pinky swear and everything.

***** PS – Anyone else having a problem using tags w/ WordPress? Mine haven’t been working for awhile. Hmmm.

This is what happens EVERY time I try to feed my daughter. Even foods she used to LOVE. Even (in desperation) “junk” foods:

Before you read further, go here and read about Lennon’s past diagnosis. Since writing that Lennon was briefly being seen by an OT for her eating issues. She was diagnosed with PTSD because of her cranio-facial surgery and hospital stays. I bought it at the time, but now I’m not so sure. She is back sliding – well, let me back up.

When Lennon first came home from the NICU shew as a GREAT eater. She would eat until she puked. She got really fat. Then she discovered that she could suck her thumb and ever since, eating has been a battle. She has gone through phases where she will eat and then not – after her surgery, for example, she lived on only dry Cherrios for about two weeks. Understandable.

It has never, EVER been as bad as it is right now.

She is down to 19 lbs (from about 21). She was in size 24 month clothing, she is now wearing size 6 month. My 22 month old daughter. Is wearing size SIX MONTH clothing. She’s a twig.

She does NOT need this – she has a heart condition!

I’m at the end of my rope and, honestly, spiraling into depression. I have no idea how to help her and I feel as though the doctors are not being much help.

This has been escalating for several months now and awhile back her doctor sent her to OT. We ended up with the same OT who we had for the girls in the NICU and I wasn’t very impressed with her then either. All she had us do was bring in food and feed Lennon in front of her. Most of the time she ate it – she was doing a bit better then. She saw her four times, for about 15 min each time, and just watched Lennon munch on pretzels. Then she discharged her.

That was a few months ago. Within the past month or so Lennon’s eating issues have spiraled out of control. She basically refuses EVERYthing. Even things she used to love. I’ve even tried offering her ice cream, cookies, etc, out of desperation – nothing. She. Will. Not. Eat.

On Friday we took her to her pediatrician and she is considering a g-tube, but isn’t ready to do it just yet. Next Friday Lennon has a swallow study and she will be seen by her cranio-facial team, a new OT, and a new developmental specialist (she has seen them before, to be screened for Autism – they always clear her, but she continues to struggle).

I am at a loss. All I know is that healthy children do not starve themselves to death. Therefore, SOMETHING has to be wrong. We need to figure out what is going on so we can help Lennon.

Here are some of my theories:

– Chairi Malformation

– Severe reflux

– Autism

– the fact that she’s teething is causing her skull to hurt since she has had cranio-facial surgery

– something is wrong post-op (she has HUGE lumps and dents all over her head which via telephone her neuro and plastic surgeons think sound like a normal part of the healing process, but they want to check her out in person just to be sure. Her pediatrician thinks there could be a problem.)

– Since Lennon has multiple birth defects and was “different” even as an embryo (very small, low amniotic fluid, etc) it is possible that she has some genetic condition that we have not caught yet. We have not had her DNA run yet.

Writing a guest post that is!

Go check it out here on The Adventures of Lactating Girl’s spiff-tastic blog.