Baby Tjader's Journey

A life undefined by pPROM, prematurity and Cerebral Palsy.

EEG results October 26, 2012

Filed under: Lila,Updates — Aimee @ 9:54 am

Lila completed her EEG last week and the results were not what I hoped for. While she did not have a seizure during the test, it did show abnormal brain patterns reflecting the potential for seizure activity. While medication may be necessary, I decided to hold off on that until we are sure her seizure wasn’t isolated. That means if she has another seizure, she will start anti-seizure medication right away.

For two weeks now I’ve been a nervous wreck. I can’t take my eyes off of her and I’m analyzing every move and facial expression she makes. If she makes a funny face, I brace myself. The rearview mirror has been stuck in a position where I can keep an eye on her in the car seat. Probably not the safest course of action … I wish I had eyes in the back of my head.

The good news is that she has been seizure-free for two weeks and has been her happy joyful self. She’s bursting with new vocabulary and while she still hasn’t formed full sentences, she’s starting to put more two-word combinations together and use words to communicate what she needs and wants: help, up, down, more, etc. Her voice is so sweet.

Please keep Lila in your thoughts and prayers as I am CERTAIN the energy you all have put into the universe is keeping her (and me) on a path to success. xoxo

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Hello, it’s me again October 12, 2012

Filed under: Lila,Updates — Aimee @ 10:46 am

It has been a long time since I posted here. So much has changed in our lives over the past several months. I’d like to get back to blogging about Lila and her progress regularly. She’s such a shining star and I want to remember every moment.

Overall, Lila is doing quite well. She’s a healthy, happy 2 year-old with a smile that lights up the room and can turn the worst day around in a second.

Last night, however, something really scary happened however. Lila had a probable seizure. I say “probable” because there’s no way to know for sure at this point. Based on her medical history and what I described to the doctors, they believe it was a focal/tonic seizure. We were in Target, Lila was sitting in the cart, and she starting flailing uncontrollably. I grabbed her out of the cart and she fell limp into my arms and looked at me with a blank stare. I started running out of the store with her and about halfway out, she started laughing at me. Typical Lila. So if it was a seizure, it was short and I guess that’s a good thing. We have to follow up with a neurologist next week. If she has another episode, back to the emergency room we go and Lila will likely start anti-seizure medication. I’m a nervous wreck and can hardly take my eyes off of her.

When the seizure happened, I wasn’t entirely surprised. Freaked out, but not surprised. Many kids with cerebral palsy experience seizures and I’ve counted my blessings that Lila never did. I hope and pray that this was an isolated incident.

As of this morning, Lila is back to her normal, happy self. She’s chatting up a storm and has new words daily. My current favorite: bubbles. She’s obsessed with bubbles. She also loves Mr. Potato Head, so she likes to say “hat.” Man I love her. Thank you all for your continued thoughts and prayers for my Bug. We are so lucky!

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Despite her surroundings, still smiling in typical Lila fashion.

 

Dr. Wiki-Neuro-Jackhole October 8, 2011

Filed under: Lila,Updates — Aimee @ 10:05 pm

Nothing tops the confusion, anger and fear I felt last June when a doctor “strongly advised” us to terminate our pregnancy with Lila. Seriously, can you imagine a world without LILA?!

Three days after Lila’s MRI, another doctor insulted my sensibilities and my role as a mother TO THE CORE! I finally got the call from the neurologists’s office regarding the questions I had for the doctor about Lila’s scans. Once again, the doctor himself was not the person on the other end of the phone line. Instead, it was a woman in the clinic’s call center who I don’t believe is a nurse and probably has no medical background. She just makes calls, takes notes — the go-between the doctor and the patient. To the best of my knowledge, this is the conversation we had:

LADY: I talked to Dr. [Wiki-Neuro-Jackhole] and he said that, yes, what Lila has — the periventricular leukomalacia — is what is causing her motor difficulties. (I’m thinking, “NO SHIT!? I’ve known this FOREVER!)
ME: (Stunned) Ok. I’m aware of this, but I want to know exactly which parts of her ventricles have the injury.
LADY: Dr. [A-hole] suggested you look up PVL on Wikipedia to get a broad understanding of PVL and if you have further questions, he’d be happy to see you in his office.
ME: (Steam coming out of my ears) Fine. When can I get in to see him?
LADY: His next available is in two weeks.

That a doctor told me to Wikipedia my doctor’s diagnosis and couldn’t speak to me directly about the results of her MRI is BEYOND me. I simply do not understand and never will. What the doctor doesn’t know is that I have looked at the Wikipedia site and every other godforsaken website about PVL and CP. I wanted basic information about a specific question about my daughter’s brain. To me, it seemed pretty cut and dry. The lady on the phone giving me the neuro’s message was nice as could be and I didn’t want to waste any more of her time so I made the appointment for the simple fact of getting a chance to tell this doctor where to go and what to take with him. It seemed that in having a person translate information and questions about a topic she was unfamiliar with, the information between myself and the doctor was lost in translation.

Fast forward two weeks. I’ve had time to cool down. Lila’s wonderful pediatrician, Dr. Thomas Stealey, called the radiology department on my behalf and spoke to the radiologist directly about Lila’s scans. The damage to her ventricles is moderate. There’s damage on both sides so they call it bilateral. It’s worse on the left side of her brain, which causes the weakness to the right side of her body. Dr. Stealey took the time to make those calls and fill me in. Thank God for him.

The day of the neurology appointment arrived and I smiled as the neuro came into the room and proceeded to talk to me as if I had NO CLUE what Lila’s diagnosis was. He drew a picture of the brain just as Dr. Hoekstra did for me the day we found out about the PVL when Lila was just a week old. I listened and let him go through his spiel.

As the appointment wrapped up I told the doctor there was something I wanted to talk to him about. “Why couldn’t I get you on the phone following Lila’s MRI?”

Doc squirmed in his chair. “Ah. I don’t know. I guess I don’t recall what happened.”

I told him exactly what happened, the calls made, the questions asked and his heinous response. “Besides having to wait two weeks to get the report on my daughter’s MRI, you had someone tell me to look up her diagnosis on WIKIPEDIA. It was insulting, insensitive and unprofessional,” I told him while remaining very calm and matter-of-fact.

“I’m sorry you feel that way,” he said. “We have hundreds of phone calls coming in every day and I wouldn’t be able to see patients if I took those calls. I guess I wasn’t aware you felt so compelled to speak directly to me and for that, I apologize. We usually have a very seamless system, but every once in awhile something like this happens. I get one complaint a year, so I guess this is that complaint?”

The jerk went on to say he couldn’t have discussed the MRI in the full detail that we did in today’s appointment, with which I replied: “I wasn’t asking for a half-hour of your time on the phone. I wanted a few minutes to get a very basic question answered and I was very happy to wait until our February appointment to talk about the rest.” Not to sound like a know-it-all, but I already knew everything he told me in the appointment anyway, because he treated me as if I were a parent learning of a diagnosis for the first time. To be fair, he did apologize and told me to call with any other questions and let the nurse know he said to call me.

I won’t be doing that. I will find another neurologist who is equally qualified and more gentle with his bedside manner. They’re a dime a dozen in this town and we have too long of a road ahead of us to not be comfortable with our doctors.

Ok, jumping off my soapbox now. Here’s a picture of Lila’s brain. The two white areas on the left and right are her ventricles. Although it’s hard to see, the ventricles are surrounded by areas of “brightness.” This is the dead brain tissue, a result of a lack of oxygen to her brain.

"Periventricular Leukomalacia is a type of brain injury that affects infants. The condition involves the death of small areas of brain tissue around fluid-filled areas called ventricles. The damage creates "holes" in the brain. "Leuko" refers to the brain's white matter and "peri" refers to the tissue around the ventricles."

 

MRI, but no answers October 6, 2011

Filed under: Lila,Updates — Aimee @ 11:41 pm

The week following her birthday, Lila had a MRI of her brain and neck. The main reason for the test was to rule out any problems in the neck that could be causing Lila’s head tilt. The neurologist also thought it would be good to have an MRI in her file — I guess to have something to compare with if she should ever need another one. I had major reservations about doing the test. In the month before the scheduled MRI, Lila’s head tilt all of a sudden went away one day. When she was tired it would reappear at times and there were three days where it was pretty bad, but other than that, her head control is under control. I didn’t want to put Lila through sedation just to have the images in her file. I needed to be convinced, so I called the neuro’s office several days before the MRI. An office staffer — not the doctor — called back to say he thinks we should go forward with it, because the head tilt could come back and we want to make sure everything is anatomically correct in the neck. In my heart, I knew her neck was fine.

We checked into Children’s Hospital at 7:30 a.m. The parking ramp, the walk through the skyway, past the gift shop, the smell of the hand sanitizer was all too familiar. We checked in at security and they even printed my badge using the picture they’d taken of me the day after Lila was born. Eh, not pretty! The worst part for Lila was getting an IV in her hand. I held her while she cried and two nurses poked her with the needle and wrapped it up so she couldn’t pull at it. We were with Lila right up until the started the procedure and then we had to leave. It was awful. Ten seconds after they administered the anesthesia medication, her tiny body went limp in my arms and she fell asleep. I kissed her and laid her on the table — that massive MRI machine.

An hour later, Lila was already waking up, but still a little groggy. She did great and although I was so sad for her, I enjoyed the extra cuddle time as she slowly woke up. We were taken to recovery where I rocked her in the same style of chair I did when she was in the NICU. The beeps of the same monitors and the hustle and bustle of the nurses was a bit paralyzing for me. “Can we go yet? Yes, she is drinking milk, she’s fine, can we go?” And within 20 minutes, we were back home and back on schedule. For Lila it was like nothing ever happened and she went right back to her cute happy self.

Meanwhile, I got on the phone with the neurologist’s office to find out results. “Overall, good news. Normal neck and spine and no changes to the brain from the previous ultrasounds.” But I had a few more basic questions and the woman on the phone didn’t have the answers. She’d check with the neuro and get back to me, but it would have to wait until Monday. Annoyed, but fine, I can wait until Monday and spend the weekend thinking about it.

Next time I’ll tell you about the second most insulting and offensive thing I’ve ever been told to do by a doctor … and what I did about it.

 

Busy bugs October 3, 2011

Filed under: Lila,Updates — Aimee @ 10:22 pm

I’m still here!!! I know, I know. A lack of new posts doesn’t encourage any of you to return to this page, but I hope you will keep coming back every so often to check up on Lila. Oddly enough, this is one of the only places I feel comfortable being “almost” entirely honest about EVERYTHING and I just haven’t felt like telling the truth lately. I was really struggling for awhile coming to grips with the shit storm we’ve been living in the past 15 months and the realities of the road ahead. But, I’m here.

For those of you who are still with me, thank you for hanging out. I’m making a point to get back to this blogging thing. Going forward, I will always make an effort to shine a light on the good stuff in our lives — there’s a lot of it — but I will never gloss over the difficulties we face on a day-to-day basis and pretend that things are easy.

So … there’s a lot to share and I won’t dump it all in one post. The biggest, happiest, brightest and BEST thing that’s happened since we last visited is our Lila Bug turning ONE! The days leading up to her big day were some of the hardest I’ve had. I cried. And cried. And cried. It was insane. On an average day I feel many different emotions as Lila’s mommy. I grieve the loss of her “normal” childhood — both for her and for Tyler and I — and I worry about the future. I’m angry that this is the hand we were dealt and I’m afraid we’re not doing enough for her. I’m starry-eyed when I look at her happy face and all I can see is that giant grin. I’m hopeful that she will do just fine and will end up living a life as fulfilling as yours or mine. I’m proud of how far she’s come and how hard she has to work every day to get where she wants to go. And I’m simply honored that someone somewhere chose me as the woman to help her along the way. The days before her birthday all of those emotions were swirling around x100.

But the day finally arrived and it was incredible. We went to Children’s Hospital for a visit with Lila’s NICU nurses, whom we haven’t seen since she was discharged last November. Lila had a physical therapy assessment, which she blew us away at. Then we all had dinner together and Lila had a piece of carrot cake. It was low-key and perfect.

All the while, of course, I had a big party in the works. So many people showed up to show their love for Lila and in many ways, this was our thank-you to them for supporting us through the past year-plus. We had family from West Virginia and Missouri show up to surprise us and it nearly knocked my socks off! (THANK YOU! I will NEVER forget that!)

Here are a few pictures and videos.

Lila, 12 months old

 

Amsterdam International July 21, 2011

Filed under: Lila,Updates — Aimee @ 9:11 pm

With Lila’s impending diagnosis of Cerebral Palsy, my emotions have been all over the place lately. When she’s awake I feel blessed and happy and so very proud of her. But when she falls asleep at night I hop on the computer and start researching CP. I know I shouldn’t, but it’s what I do. It’s been hard to accept that Lila will have some issues and I guess I’m preparing for the worst, hoping for the best. Tyler, on the other hand, is incredibly positive about everything. We balance each other out, but I often feel like preparing for Lila’s (our) future is all on me and that’s incredibly stressful. Not that he doesn’t care or WANT to make sure Lila gets all the support she needs down the road, but he’s very busy with work and he’s a live-for-the-day kind of person anyway. I wish I could be more like that.

Instead, I’ve been joining online support groups for parents of children with CP, e-mailing directors of camps that offer intensive (read: expensive) therapy, shopping for items to build our home therapy space and educating myself on controversial CP treatments like botox injections and hyperbaric oxygen. I’m researching some pretty crazy things, but I often feel like I’m not doing enough. I think that’s probably a common concern of many parents of children with special needs and we’re willing to try almost anything that provides a glimmer of hope. I pray that I will never need to fully explore these things, but I don’t like surprises. I don’t want to get hit with a ton of bricks at once. I’d rather be hit with a million small stones over a long period of time.

I have a new favorite blog and wanted to share one post with everyone. Consider it part II to my “Welcome to Holland” post:

In the special needs world, there is a poem (essay? whatever.) called “Welcome to Holland.”  It is supposed to explain what it’s like to have a child with special needs.  It’s short and sweet.

It skips everything.

While “Welcome to Holland” has a place, I used to hate it.  It skipped over all of the agony of having a child with special needs and went right to the happy ending.

The raw, painful, confusing entry into Holland was just glossed over.  And considering the fact that this little poem is so often passed along to new-moms-of-kids-with-special-needs, it seems unfair to just hand them a little story about getting new guidebooks and windmills and tulips.

If I had written “Welcome to Holland”, I would have included the terrible entry time.  And it would sound like this:

Amsterdam International

Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything—you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.

You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . . but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.

(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this goddamned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)

A flash of realization—your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.

(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all.


And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)

You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how (s)he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing.

(Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up—you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious—how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?)

And what you keep thinking but can’t bring yourself to say aloud is that you would give anything to go back in time a few months. You wish you never bought the tickets. It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.

Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”

Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.

But you will leave the airport. You will.

And as you learn more about Holland, and see how much it has to offer, you will grow to love it.

And it will change who you are, for the better.

 

 

GI test a success March 3, 2011

Filed under: Lila,Updates — Aimee @ 10:10 am

Lila successfully passed her upper GI test this morning. I knew she would, but it’s reassuring to know that everything is anatomically correct. We still can’t figure out why Lila will only eat when she’s sleeping. The past few days, she’s gotten better, but she still has trouble getting into a rhythm when she’s awake. The most she’ll take awake is one ounce and it’s a struggle with lots of starts and stops. At least she’s not yelling at the bottle like she was before. I’m hopeful she’ll grow out of this, but in the meantime, I’ll follow-up with the feeding clinic at Children’s and I’ve also asked an occupational therapist to come to the house and work with us.