When a Toddler Calls The Shots

As the mother of a pint-sized fashionista, you have to embrace the fact that someday she will call the shots when it comes to her wardrobe. So when you decide to see if last summer's clothes still fit, you have be prepared for said fashionista to insist on wearing an outfit like this:

-I bought the dress before she was born. It's supposed to be size 12 months.

-She absolutely must wear her snow boots when she goes outside. Who know why?!

-The pale yellow and pink strings hanging below the hem of the dress are the halter straps of last summer's bathing suit. I tried to take it off but she insisted on having it put back on.

Oh and by the way ....

Don't forget to add the hat!

A Day At The Beach

Dover has seen some unseasonable warm weather. Well it's over now. Snowing at the moment, actually. Last week, however was beautiful. Lots of afternoons playing outside.

Saturday we took Emma to a playround. A rather new experience for us since I'm such a scaredy-cat mom.

Letting her climb around this big structure with steps and openings to nowhere was scary, but she loved it.

After a few trips down the slide, she found a sand truck. Eventually she found the sand box, which she immediately called 'the beach'. She's never been in a sand box and hasn't been to the beach since she was 11 months old, but somehow she made the connection.


'The beach' was fascinating to her. She spent the rest of the time there digging in the sand/dirt. She found two sticks and a bucket, turned the bucket upside down and started to drum. She loved it so much, we headed to Toys R Us on the way home.

Now she has her own 'beach'.

It kept her entertained for another 30 or 40 minutes once we got it set up on our deck.

The next morning, she begged us to go out. In her fleece, bunny-footed pajamas, she stood on her tip toes trying to open the sliding glass door, chanting 'Open the door. I go to the beach. I go to the beach!' I guess it was hit. We were a little cold out there that morning and as I said it's now snowing a bit, but the warm weather will come back and I'm sure we'll be spending hours at 'the beach'!

The Ability to Accessorize

I'm not totally sure, but I think we've entered into a phase in which playing dress-up is king (or queen, as the case may be). As of late, Emma is often found wearing random articles of clothing. Just this morning, in fact, Emma coaxed Daddy into putting her snow boots and winter coat on over top of her fleece, 'feetie' pajamas. I think she thought if she had the gear on, she'd get to go outside. Sorry, lovebug. Not at 8:30 in the morning in March!

Anyway, last week, I posted the picture of her coloring in her winter hat while wearing pajamas. Yesterday, at 'art class', I peeked over at her and saw her very enthusiastically pounding her paint brush on a plate of glue with a little boy her age while very nonchallantly wearing a floppy, red, wide-brimmed, old lady-ish hat atop her head like it was something she wore everyday. I'm not sure I've ever wished that I'd had a camera more in my life than at that moment. It was one of the most adorable and perfect things I've ever seen. Apparently her aversion to hats has come and gone.

Her ability to accessorize is emerging at a young age it would seem. Sometimes, she's looking for just the right pair of shoes (usually mine) ...

... a fun pair of flats (ignore the fact that they need to be polished)

... a good pair of clogs - a staple in a young mom's wardrobe


... or just the right pair of boots for a night out

or for a slightly more sophistocated occassion

Sometimes the accessories, as I mentioned, come in the form of head pieces ...

... perhaps your uncle's new black hat

... or maybe a lobster claw head band
(especially appropriate if you live so close to maine)

And, sometimes, it all comes together for the perfect look ...

... the shoe (when your feet are so small you really only need one)

... with a hat - backwards baseball caps are a favorite around here -

and a puffer coat

... and a pair of star-shaped sunglasses to pull the look together!

I mean, does the girl know how to accessorize, or what?

MRI Results

Before I delve into the world of neurology as it pertains to Emma, let me first say that the pictures included in the post really have nothing to do with it's content other than the fact that they are of Emma. I don't typically take pictures at Emma's doctors' appointments and what do you take pictures of that relate to Emma's brain, anyway? They're just recent and pretty darn cute so I put them in to make the post a little more interesting since it is a lengthy one. Then again, when are my posts not?

Now on to the topic at hand ... Yesterday, Emma and I took another trip to Boston to see her neurologist. We last saw him in July when, in spite of all the screaming, he was able to assess Emma's development giving her a glowing report. Much like that visit, screaming ensued ... for the ENTIRE time we were in his office yesterday. She didn't even stop when we went back to the waiting room. She only calmed down once she realized Sesame Street was on. It also helped that I was smart enough to bring along Goldfish, a juice box and some Gerber Yogurt Melts along. The combination is magical.

Anyway, somehow, he again was able to see through the screaming. He said she seemed to be progressing very well. He tested the reflexes in her legs which he said did indicate that her muscle tone was on the high side. I would think that would be a great thing. I'd love someone to tell me I had high muscle tone in my legs, but in a baby, I guess it can be problematic. He didn't seem concerned though and said he didn't see it causing any problems.

It was a good review overall, although he did start the visit by saying, "Have you talked to her neurosurgeon since she had this MRI?" I told him no and said "Why? That doesn't sound good." He reassured me that her MRI results were good, but that he felt I should get in touch with her to get her take on the scan. Not exactly what you want to hear especially before you've even seen the images.

I know she's not even looking at the camera,

but what could be cuter than a strawberry on a 19-month old's little hiney?

He pulled her MRI images up on his computer screen and first showed me last year's scan. Last February, her right ventricle was enlarged and the left was compressed a bit. Although, it seemed like a bad thing to me, both he and the neurosurgeon said it was not uncommon, that they may or may not stay that way - asymetrical - and that it shouldn't cause any problems.

This year's scan showed the opposite had occured and to a greater degree. Her left ventricle is now very large and her right is very compressed. Almost to the point that I couldn't see it on the MRI image. He wasn't really sure why this was the case or what it means which is why he wants me to talk to her neurosurgeon. Somehow I knew this MRI wasn't going to come out all sunshine and roses.

He did say that although the venticle size is of interest, there aren't any signs that she is 'under pressure' which is neuro speak for having too much cerebral spinal fluid in your brain, and the rest of her brain looks perfect. So I guess the results were good ... sort of. I have a call into her neurosurgeon so we'll see what she has to say, if and when she calls me back.



So part two of this appointment was with a neuropsychologist. I had never heard of this title before, but am now quite interested in the field. They deal with the effects that neurological disorders have on the brain's function - cognition, behavior, language, etc. The appointment was to be an evaluation of all of these things as a result of Emma's hydrocephalus, meningitis and brian bleed.

I was really quite worried that the screaming would carry over from the neurologists office into this office because, well, Emma HATES doctors and their offices. I couldn't imagine what would be different about this doctor and her office. Screaming during a cognitive evaluation would be the opposite of helpful. So thankfully the magical Sesame Street-juice box-snack combo came between the two appointments. She was calm ... until we started walking back down the hall of exam rooms. The crying started again, but this appointment had a few things going for it that the other one didn't.

1) This doctor was a woman. Emma is a bit intimidated, it seems, by men. I'm not sure why, but she even takes a little while to warm up to her grandfathers and uncles when she sees them again after a long period time away from them. Anyway, the fact that the neuropsychologist was female made all the difference.

2) Emma would be getting to 'play' essentially with this doctor. No testing of reflexes or head measuring. No touching of any kind actually. Just puzzles, games and coloring.

3) Truthfully, the most significant difference - this doctor pulled out the big guns right from the start. 3 little life savers by the names of Big Bird, Cookie Monster and Elmo. Never underestimate the power of Elmo when it comes to a toddler! Once she saw, and was able to cuddle, her little buddies, the tears stopped and the doctor had magically earned Emma's trust and cooperation.

I'm not really sure what to say about these pictures. She found a hat that she likes wearing -finally- and wants to wear it with her pj's while she colors. She even took a nap with it once.

The point of this appointment was to get a baseline cognitive assessment. A starting point from which to measure her development in the future, I suppose. If she were to ever show a regression in her developement or a slowing down in her cogntive skills, it could help us diagnose a problem.

She started with a language assessment which she deemed 'superfluous' from the get-go because just in hearing her talk to me about her trio of Sesame friends, it became clear that language is Emma's strong suit and not at all an area of concern. We proceeded anyway so we could get an idea of exactly how far along she is in her lanugage development.

She asked me a series of questions about Emma's language tendencies - Does she understand me? Does she follow 2 step directions? Does she identify pictures with words? Does she combine words with gestures like waving while saying hi or bye? Does she combine words? Does she use plurals? - the list went on and on. A few of them, I couldn't answer because I never noticed whether or not she did the things in questions. I was happy to be able to answer 'yes' to almost all of her questions though.

We were supposed to end the language assessment with a vocabulary inventory. She decided there was no point in doing it though. Keeping track of all the words Emma know is impossible and the number of them in her vocabulary is closer to 200 than the 20 - 50 that is typical for her age, so we didn't even try.

The next part of the assessment was the part Emma liked. She sat in a seat that looked like a miniature high chair. The doctor put a rectangular board on the tray that had a row of holes down the middle. She showed Emma how to put one of the pegs in a hole, took it out and asked Emma to do it. Emma gathered all of the little pegs in her tiny little fist and one by one placed them in the holes counting the pegs as she did it. Then one by one she took them all out again so she could try it again.

Next, the doctor put another board in front of her. This one had indentations, like a simple puzzle, for a circle, square and triangle. She showed Emma how to put the circle in it's space, took it away and asked Emma to do it. Emma dutifully put the circle back in it's spot, then followed suit with the square and triangle without being shown where to put them. The doctor rotated the board so it was upside down, showed her where to put the circle and then asked her to put the shapes in their respective places. Again, Emma put the circle in it's place - 'Circle here.' Then 'Triangle here. Square here.' (Well it doesn't come out sounding exactly like triangle, but rather some approximation of the word. She gets her point across though.) She realized she didn't have the triangle and square in the right places and tried to turn the board around so it was in it's original orientation. When the doctor wouldn't let her turn it around, she studied the shapes again for a second and then moved them to the right spots.

I sat watching in amazement. It was my job to sit there as silently as possible so that I didn't inadvertantly give her any help. My baby, no longer a baby, sat in this chair, looking like a student at a desk, completing one puzzle or task after the other as if she'd done the activities a hundred times before. She built towers 10 blocks high, put pennies in a piggy bank, found matching pairs of pictures, etc. It was fascinating. I couldn't believe what she was able to do it all by herself with only one simple direction given for each task. I was incredibly proud, yet I had this feeling that I was watching someone else's child. She seemed so grown up and capabel. So intrigued and eager for the next challage. I felt sort of giddy inside while I quietly observed. I've always been interested in child development and how the mind works, but it's even more interesting watching the mind of my baby in action. I could see myself doing this - evaluating a child's cognitive abilities. Who knows? Maybe I'll pursue it.

Emma in her hip-hop/rapper gear -

I have a whole post full of pictures for this outfit coming soon.

We won't know the official results of the assessment for a few weeks, but the doctor said that she'd done quite well. She did mention that although her hand-eye coordination is very good, she moves her hands more slowly than other kids her age. I think she referred to it as 'fluency of movement'. She also said she had some 'postural' issues in the way she holds her hands. I hadn't paid much attention before, or noticed that it was abnormal, but once she mentioned it, I did realize that she keeps her fingers very straight a lot of the time. She holds a crayon between her thumb and the tips of her fingers, if that makes any sense.

I also mentioned that the thumb on her right hand is sometimes bent and stiff at the first knuckle and can't even be forced straight. At least, not with the amount of force I'm willing to exert upon it. It usually works itself straighter by the end of the day, but is definitley stiff and has limited flexibility. I told her that it doesn't keep her from doing anything, but she said it was something to pay attention to.

The issuses in her hands may make it difficult for her type well or play the piano. If they get worse, she may need a splint or a brace when she's older for a period of time, but right now, the problems are mild and don't keep her from doing the things she needs to do. We will most likely consult with an occupational therapist to find out how to proceed. The doctor said the earlier we intervene, the less likely that it will be a problem in the future. Until then, I'll be keeping her hands busy with coloring, blocks, playdough - anything to keep her hands moving and working.

The issues with her hands took me by surprise. I really didn't consider those kinds of problems especially not in the future. Everything has gone so well so far. I forget that we're not 'done' with hydrocephalus. She's done so well and exceeded so many expectations, but it would be foolish of us to think that she would walk away from of all this without any ongoing problems outside of possible/probable shunt revisions in the future. Kids who've been through the same things deal with far worse than our little Emma. So as the neuropsychologist said, if these are our problems (some mild issuses with hand movement that wouldn't even be noticable to most people), then, all things considered, we're doing remarkably well. That's no surprise though, right? Emma is a remarkable little girl ... if I do say so myself!

Emma's New Room

This isn't all that exciting, but I know a few people who will like these pictures.

I've been hard at work, transforming this house from bland and beige to something more colorful and inviting. I've painted almost every room in the house in the almost 10 months that we've lived here. Originally, Emma's room was to be the first completed. I wanted to have the wall paper stripped and a new coat of paint up before we moved in. Not only did I want to take advantage of an empty room, but I wanted her room to feel familiar when we made the move. I'd even planned to paint the walls the same pale blue as her room in Somerville.

So I'm not exactly sure what happened, but instead of being the first, it has been on of the last. I guess once we moved in, it just seemed too daunting to move her and all of her things out of the room long enough to get it done. I finally did it though! I stripped the wall paper one weekend and took advantage of night when Jeremy was on duty, and I had nothing to do but keep myself busy, to paint. Thanks to my need to just get it done once I start painting (and a few new Jonas Brothers albums) on my iPod. I painted 2 coats that night and the wood work the next day!

I have a few things left to hang on the wall and some picture frames to fill, but essentially it's done. So here it is - Emma's room - start to finish:

Emma's room as it has been since we moved in.

Sure, the wall paper is pink and green, but it didn't really go with all of Emma's pinks and greens and it really wasn't my style anyway. (I'd already started peeling so of the top layer off above the changing table.)

Here it is with the wall paper off. Lots of scrubbing and scraping still to do to get off all the glue and bits of paper.

Sorry this picture is so dark, but here is the corner of her room as it is now!

On either side of Emma's crib hang two of these needlepoint pieces. Jen, my sister-in-law, gave them to me on Emma's 1st Christmas. She and her mother stitched the words of one of my early blog posts about what I want for Emma. They are perfect and beautiful. Of course, I cried after I realized what they were when she gave them to me. I finally found perfect frames and made a mat with this green grosgrain ribbon. Now my wishes for her can surround her when she sleeps. Is that cheesy? Okay, I little, but I don't care.

So here it is. All done. Much more my style and I'm hoping Emma likes it too. Maybe some day I'll put up pictures of the other sides of the room.

Poor Baby!

Emma's had a rough week. Poor baby. Last Friday, all of a sudden, Emma had a runny nose. Not too common, but he's been known to have a runny nose, that never progresses into anything else, for a few days. We were supposed to go to an indoor play place with friends, but knowing those kinds of places are full of germs this time of year, I decided taking her wouldn't help her possibly-developing cold. Nor did I want to be one to add to the germ factor of this new place. Mostly, though, I just didn't want to risk her runny nose turning into something more over the weekend. Emma had an MRI scheduled for Monday, but a sick baby can't have an MRI. Knowing she needed to have it done by our neurology appointment on the 24th, I really didn't want to worry about rescheduling, not to mention the fact that Jeremy had already planned to take the day off on Monday to go with us.

All weekend, her nose ran and soon a cough developed. Not sick-sick, but I decided to call the MRI nurses on Sunday to report her condition. It would be my luck that we would get up at 4:30 in the morning Monday so that we could be on the road to Children's Hospital in Boston by 5 only to be told when we arrived that she was too sick to proceed. The nurse said as long as her nose was running clear, her cough wasn't keeping her up at night and no fever was present, she thought she would be okay.

Sunday night, she took a turn for the worse. She was cranky, coughing and not wanting to eat much. I was ready to cancel, but decided it didn't make sense to call it off until morning. I would feel really dumb if, after cancelling, she woke up feeling fine. She slept soundly so we made our way to Boston before the crack of dawn.

Emma was all smiles in the hospital waiting room. She spent the time walking all over the room and up and down the halls in her fleece, footed pj's earning the admiration of many nurses. She even greeted two older girls coloring at one of the pint sized tables meant to keep the little patients occupied - "Hi, kidsth!" The older she gets the worse I feel on these days when she is so blissfully happy not knowing what lies ahead for her.

We were soon called in to an exam room. She was immediately on edge, knowing something was up. I was dreading the insertion of her IV most of all for obvious reasons. The nurse put numbing cream on her feet, noting that they seemed the most likely location for a successful IV placement. Even having the cream squirted on sent her over the edge. Thankfully, I had spoken to the nurses ahead of time about what a hard stick she was, about how the last time we were in there, the nurses had to call a time out because she was screaming and gagging after 3 failed attempts, giving them hot flashes, resulting in the use of an oral sedative. She was too old this year for oral sedation, so they had called in an IV specialist. So wrapped up in blanket like a burrito, which, in itself was absolute torture for our little one, being held restrained from the waist down by a nurse and waist up by me, the specialist successfully, and rather quickly I have to admit, placed the IV.

Emma, of course, screamed, and struggled to get away from me, for several minutes after the IV was in until slowly the medicine started to knock her out. She really wanted to fight, but eventually, she wasn't strong enough and conked out right on my shoulder. I put her on the table and they took her in for her pictures. They had warned me that if she coughed during the scan they would have to stop and most likely wouldn't try again, but, instead, would just reschedule. So while Jeremy went in with Emma for the scan, I went to the waiting room worrying that she was going to cough and all would be for naught.

I called my mom to let her know that the scan had started. After chatting with her for a bit, I opened my book, read about 3 pages and was interrupted by Jeremy telling me were done and I should come into the recovery room. What? Done already? It should take about 45 minutes. I was sure she'd coughed and ruined the scan. Or maybe she woke up and they couldn't get her back to sleep. He assured me that she was perfect and they just got the pictures really quickly.

In the recovery room, Emma woke up, crying, for a brief time. Having all the wires and monitors attached to her made it more difficult to hold her. It was hard to believe I used to spend all day holding her like that. The neurosurgeons came in to check the setting on her shunt which luckily hadn't changed. Soon she was back in my arms and asleep. An hour later we were on our way back home. MRI successfully completed.

I was so glad that I hadn't cancelled. As the day progressed into night and then into the next day, it was apparent that the few hours we spent at the hospital were a calm before the storm. They were a few peaceful hours. Just long enough to get the scan completed.

By Tuesday morning, Emma was feeling a little less peppy. As the day went on she seemed to drag even more, pushing away any food I offered her. By evening, she had a fever. Low grade, but still, her first fever since the one when she was 5 days old and on the verge of meningitis. After off-and-on sleeping that evening, I gave her Tylenol to bring her temperature and soothe any pain she might feel. At 11 pm, she FINALLY went down for good.

Wednesday morning, she was a little better initially, but faded fast. Her cheeks began to flush and her eyes began to droop. She wandered aimlessly and lethargically around the living room not knowing quite what to do with herself.


Soon she wanted nothing more than to sit on my lap and watch TV all day, so that's what we did. I was hoping having a sick toddler justified leaving the Disney Channel on all day long. She barely ate and I struggled to get her to keep her fluids up.

Her fever came back so I made her a sick bed on the floor hoping that not having our body heat added to her own, would bring her temperature down.

It worked, along with a little more Tylenol. I just felt so bad of her. She looked so pathetic and miserable. Actually though, in all honesty, she wasn't THAT sick. This was her first real illness though since those first few weeks in the NICU. Neither of us knew what to expect or how bad it would get, so to us, it was bad.

Emma finally took a good nap at 4:30. When she woke up again at 6, she was on the mend. She climbed down the stairs on her own, went into the 'offith', climbed up on the chairs and slid off - 'Wheee!' - repeatedly. Just like that, she was better! A perfect night's sleep followed by a day of normal behavior.

She still has a runny nose and a pretty strong cough, but she's acting like herself. I'm not sure how, but we made it through the week! No MRI results yet. We'll find those out in a little less than 2 weeks, but I expect the news to be fairly good. I'll keep you posted!

18 Months

While we were in Pittsburgh, yet another milestone passed. Emma turned 18 months. Each passing month seems to fly by faster. Although, somehow each day seems to pass by a little slower. Maybe it's because Emma only takes one nap these days, which is usually in the morning shortly after she gets up, leaving all afternoon for me to entertain the little one. Living through a New Hampshire winter doesn't help either.

We've been spending a lot of our days coloring and painting with water. Emma's getting quite proficient at scribbling and has been learning her colors. Most of the time, everything is either blue, red or orange ('oh-ange'), but every now and then she gets purple, yellow or brown right. As long as she doesn't eat the crayons, which is often a problem, I consider the coloring successful.

Monday we had her 18-month well-baby check up. We seem to be gearing up again for around of doctor's visits. It's funny. I used to go to doctor's appointments constantly and looked forward to the day when the load would be lighter. Doctor's appointments were easier back then though. I don't know why, but it was just a routine we were in. They didn't really stress me out and I didn't dread each one. Now that the day has come when they are few and far between, I have a much harder time dealing with them, imagining all the things they could tell me were wrong even though I didn't see any symptoms.

Anyway, her appointment went pretty well. She weighed 22 pounds. They weighed her naked this time which I was happy about. At her 15 month, the weighed her in a sweat suit with a very full diaper and shoes on. I'm not sure how they thought that would be a good comparison to her previous weights, but whatever. So although it seemed that she gained less than a pound since October, she is actually still on her growth curve, right in between the 10th and 25th percentiles.

Her head circumference was about 19 inches which was the same as 3 months ago. I'm not sure how much of an indicator of a problem head size is for her anymore since her sutures are fusing together not allowing her head to expand the way it used to to accomodate a pressure build up, but I supposed it's still good to know that she isn't having huge changes. She's still about 90th percentile for head siez, but like I've said before, she comes from a long line of big heads.

The big surprise was her height. She was almost 34 inches putting her in the 95th percentile. She grew almost 3 1/2 inches in the last 3 or 4 months! I guess it shouldn't have been a huge surprise. I had noticed that her pants were all a bit short all of a sudden.

The doctor was happy to hear about all of the things she is going developmentally especially her vocabulary. He asked if she was building a vocabulary. I said, 'Oh yes'. He asked is she was using 7 words or so regularly. I wasn't really sure how to answer since there aren't many words she can't say. I told him that she is more in the '100 +' range of regularly used words, that she speaks mostly in phrases and a few sentences, and can identify the numbers 1 - 8 along with almost all of the letters of the alphabet. He was quite surprised by all that and simply said that she was clearly accelling in that area.

The only thing he was a bit concerned about, as were we, was that Emma's left eye tends to wander outward when she's tired or thinking hard about something. So we're going to see a pediatric opthamalogist in March. He didn't seem overly concerned, but felt like it was worth looking into. I don't think it is much more than strabismus which I THINK is fairly easily treated. Maybe some eyedrops or a patch for short periods each day until the eye gets stronger. Of course, in the back of my mind I wonder if it could be neurological, but she isn't giving me any other signs that she's having a problem with her shunt. So we'll see ...

On the 8th, she has an MRI to see how her ventricles look. Then on the 24th, we see her neurologist and a neuropsychologist for a cognitive evaluation. I think it's just to get a bench mark so that if she were to have a decline in cognition, we would be able to catch it. I suppose if the eye wandering is shunt related, they'll be able to tell us. I don't suspect that will be the case though. Hopefully, the MRI and neuro appointments will just be routine and will tell us what we already know - Emma is doing REALLY well.

I've really noticed a change in Emma lately. She just seems so grown up. She eats with a fork and a spoon. She feeds her baby doll a bottle. She wants to constantly climb up the stairs instead of being carried. She really is a little kid. She doesn't even look like a baby anymore. I know before I know it, July will be here and we'll be celebrating her 2nd birthday!