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Friday, November 30, 2012

Tests

Dr. Pauli recommended that we get Belalu's hearing tested since it is so common to have issues with hypo. We have never had reason to believe that she has difficulty hearing, and her speech is so well developed we have not been concerned. At her age, E was dealing with once-a-month ear infections, while she's only had one ever. Nevertheless, her test showed mild hearing loss. Since she's battling a cold, he suggested we come back in 6 weeks and try again. I'm really hoping it's just congestion.

A few weeks ago, J got back from his trip and was appalled to get a call from the local cardiac clinic. It seems I had been ignoring their attempts to get Belalu hooked up to a Holter monitor. Ummm... well, sort of... See, the thing is, this is such a P.I.T.A. for a toddler, I just couldn't find the right 24-hours period to deal with it. She has spent the last month and a half waking up every couple of hours due to teething and a nice pm vomiting flu thrown in for good measure (wow- has it really been that long since I've slept!?!?). To add this on top of all that was just not going to happen.

Anyway, this is the second time she's had to wear one of these, and honestly, I'm not really clear on what they were looking for. The first time they checked her heart, they found one thing. The second time, the first hing was fine, but they found something else. Now, they wanted to check one more time to make sure all is good. It's awful, but I really can't get into too much more detail than that because I was dealing with so many other things regarding her health, I just don't remember these details. It's in her files in the next room, I'm sure. But I'm convinced she's fine, so I'm not worrying about it. And if J hasn't been concerned and researching the heck out of it, than I know there's nothing to worry about.

The Dr.s have also assured me that they are not too worried, that it's all routine to make sure, blah blah- all the things they tell you until they throw bad news at you, I know, but I really think she's fine, so I was more annoyed at the inconvenience of trying to keep five electrodes on a baby that doesn't stop moving, even in her sleep. And the cord that attached them to the monitor was looooong. You know, made for an adult not a smaller-than-average 15 month old. So, we wrapped it around her waist and tucked the monitor into the side of her pants, beeper-style. (Her hand is covering it in the pic below).  Thankfully, as long as nothing appears, this should be the last time we have to do this.


Thursday, November 29, 2012

Fall Holidays

Since I got behind this month, I'll combine Halloween and Thanksgiving into one. Before we know it, it'll be the winter holiday season!

Belalu had two costumes. My mom bought her a honeybee costume, but it was a bit big on her, so for an indoor party, she was a cowgirl instead. Then, the night of trick or treating she wore the honeybee costume, though she lasted a block and a half before she was ready for bed, so E went on with our friends, I put her to bed (J was home handing out candy), and then met back up with everyone.

The Queen Honeybee in her carriage
 Essie was a fireman. He's obsessed with Fireman Sam and rescuing, helping, and saving the day.
There happened to be a rocking horse at the party- too perfect!





































This year was the first time I have ever carved a pumpkin- I'm not kidding! I usually leave that job to others, but this year J was dragging his feet and one night I just decided it needed to be done. E helped, of course.


Thanksgiving was low key. We spent the day at home cooking and then went to our friends' house for dinner.




Wednesday, November 28, 2012

Clothes That Fit: Polarn O. Pyret II

Yesterday I talked about POP pants, today I want to show you their outerwear. The company's motto is "There is no bad weather, just bad clothing." Most Swedish kids spend hours outside, even in the cold Nordic winter, so their clothes are warm, waterproof, and windproof.

I first got Essie a jacket and pants the year before last, and he's still wearing them. Their jackets and pants come with lots of adjustments to accommodate growing ones for more than one winter season. The pants have a wide elastic in the waist, as well as velcro tabs to adjust the fit even more.

The bottoms have the same bottom tabs to keep snow and wet out, but also are handy for shorter legs, since you just tighten the bottom and let the extra fabric bunch along the legs, without interfering with play.

















Belalu's pants came with suspenders that are VERY adjustable (and removable, too), so I think she may be wearing these for years. (I bought the pants and two jackets for her last winter, before I knew she had hypo, so they are a size 1-1.5 yrs.)
The jackets allow for adjusting the length of the body as well as the sleeve tabs that mean I don't have to fold them up, just cinch them and let her play. The hoods are removable and adjust for different head sizes, both around the face and the crown of the head.


Many of their jackets, like E's below and B's polka-dot fleece, come with these little hand warmer layers that fit over the thumb.
All POP's jackets have a snap system that lets you attach difference pieces together for deep-cold layering. Thus, Belalu can wear her polka-dot fleece alone or underneath her water and wind-proof shell for serious snow fun.

Tuesday, November 27, 2012

Clothes That Fit: Polarn O. Pyret Part I

One of the questions that came up at the LPA chapter convention and I've since seen around the web is the topic of finding clothes that fit our littles. I have a couple of companies I'm really happy with, so I thought I'd share them with you here. First up, there's Polarn O. Pyret, a Swedish company. They say that their clothing designs are about 30% girls, 30% boys, and the rest are gender-neutral. I love that they have such fun patterns and use bright colors. (The shirt is from there, too. It's 9-12 m, though she also has one in 6-9 that fits just as well).

I bought all these clothes for Belalu before she was born and she's been wearing them since last fall. I can't say that about any other brand's clothes. The quality of the fabrics and construction is very high, so they stand up to years of use, whether from one sibling to the next or just for the same kiddo whose growth is slower than average.

I got her two pairs of these "harem pants." The grey ones are size 2-4 months and the green are 4-6 months (the pants she is wearing in the Madison post), but she's been wearing them both since last year. The top of the pants has a wide waistband that can be folded over at first, and then laid flat as they age. The bottom cuffs also allow you to adjust the length, and allow the fabric to bunch a bit in the legs while still being comfortable for play and movement.

She also has more legging-style pants with the same cuff style, and I got her a pair of jeans a few months ago. Besides rolling up the bottom cuff, the waistband allows for adjustment. Thus, Belalu can wear pant sizes from the same company that range from 2 months to 12 months.
Sizes 4-6m, 6-9m, and 9-12 from left to right- cuffed and uncuffed
Adjustable waistband is a must, and all their stuff comes with name tag for school/daycare
A close up of the super-cute gender-neutral print. Those green pants are from their ECO line and are so soft I had to buy myself a pair in black and white for lounging/sleeping- yes! they do make some stuff for the parents, too :)

Monday, November 26, 2012

LPA Chapter Convention: A newbie's perspective

The week after we went to Madison, J took the train out west to visit Juju for a week. After he bought his ticket, I realized there was an LPA chapter convention in the Twin Cities. I thought about traveling with two little ones for the weekend, and decided it was worth  a shot.

The hotel where the convention was held had a wonderful pool area. It had a huge hot tub, a big regular pool and then a zero-depth pool with a slide and lots of water toys. This last one made it very easy for me to make sure both kids were safe and having fun, since I didn't have to hold on to both of them at all times. We spent many hours in the pool over the course of the weekend.

I'm not an outgoing person at all, but for some reason I wasn't nervous about attending the convention alone. I suppose because I knew we had an immediate conversation starter. I was a little concerned about saying or doing the wrong thing, since this was a new social situation for me. For example, I found myself leaving all shoes with any sort of heel at home- it seemed rude to widen the eye-level distance between myself and anyone I would meet. I did have a couple of awkward moments. The first time someone asked me if I knew what kind of dwarfism Belalu had, I said "yes, hypochondroplasia?" as if talking to someone unfamiliar with the concept of skeletal dysplasias. Their response: "oh, hypo," reminded me that many people there would have heard of it, and I could just use the shortened name. The first night we played in the pool, three young girls were tossing a ball back and forth and Belalu was very interested, so at one point, a girl presented her with the ball and said "do you want to play, too?" As soon as I said "oh, she's too little to play," I felt like the sentence just hung in the air. Has this girl heard that before in cases where she wouldn't be too young to play, but might have been perceived as such? Did she even think twice about it, since she probably knew what I really was trying to say, and I was just too worried about being cautious and PC?

It was kind of like middle school in that way for me. I was hyper-aware of how I said things to/about people, nervous about offending someone unintentionally or saying the wrong thing. Socially, there were clearly people who were friends and others who were not, even if their kids were similar in age and they lived near each other, so I found myself wondering if there was a past history there that I didn't know about, and if I was choosing sides without knowing it. Overall, though, people were very friendly and since ours was the only new family there, many came up and welcomed us to the group and wanted to know more about Belalu.

We met a family whose daughter has acon who's only a month younger than Belalu, and we also met a boy who was about 6 months older than Belalu, so essentially the same age. I hope to keep in touch and meet up with them again in the future, since we live less than three hours away from each other. I also met two families whose daughters had hypo- one was 7 and one was 13, and a woman with hypo who said she had never met a baby so young with hypo, since her kids were both AH and usually hypo kids are diagnosed later.

I did notice that the presence of so many little people in one place drew the attention of the other guests. Several people had these amused smilies on their faces and gave each other knowing glances- one family was practically laughing out loud at the breakfast area one morning. I tried not to get too upset about it, but of course that image is still burned in my mind. That's how people are going to look at Belalu, and there's nothing I can do about it. At the parents' meeting, I had wanted to ask them about how they deal with comments and glances, but didn't get up the nerve to do it. I felt like for most of the people there, this was an old topic- they've already been where I am and have figured it out. Of course, I could have been wrong, and I'll never know now, but I just listened to others' concerns and questions at that meeting.

I wish J could have been there, too, but I'm glad I went. I had wondered how Essie would react, and for the most part, he didn't seem to notice anything different about anyone. The first morning, however, after having already met many people the night before, a woman with acon came up to the table to talk to us, and after she left he said very softly "She's little." I asked him "what did you say, Essie?" and he said it again "She's little." It was just a statement, with no surprise or wonder to it, so I just said "yes, she is," and we kept on eating. That's how I want it to be for him- to realize that just as people have different color hair, eyes, and skin, people have different shapes and heights, too, and to move on from there to get to know them for their personality. At the final dinner it was so cute to see a girl in a wheelchair playing tag with a group of kids- Essie was in the group, just chasing her around like he would any friend on the playground. So, this time around I got more out of the convention than the kids did, but I hope that we can make it a regular occurrence for our family. That way, they grow up knowing lots of people with dwarfism and not thinking of Belalu's condition as unusual.

I was also excited to finally meet the girl I had seen on campus. She was in the lobby when we got to the hotel, so this time I went right up to her and introduced myself, since I haven't had a chance to talk to her on campus yet. I was glad I did, because I didn't get a chance to talk to her again that weekend. All the teenagers hung out together and obviously didn't go to the parents' meeting. They came into the ballroom after the dinner, but just as we were heading out with Belalu in full "I-need-to-go-to-bed" meltdown. At least now I can address her by name if/when I see her on campus again.

Sunday, November 25, 2012

Madison Meet-Up

After Dr. Pauli's visit we got to meet up with three other families familiar with hypochondroplasia. Fi is about 2 1/2 months older than Belalu. A is almost three years old, and P is five. The kids all had fun playing together, and the adults had plenty to talk about. It was really nice to meet everyone, and we decided we would coordinate Fi and Belalu's appointments with Dr. Pauli again next year so everyone could meet up again. 
The whole gang: of course we couldn't get a photo where they were all sitting still and/or looking at the camera at the same time ;)
It was interesting to compare experiences. P, A, and Belalu all had neonatal seizures. A is currently weaning off her medication now, so hopefully they are in the past for her. Fi was the only one diagnosed before birth, Belalu was diagnosed at 9 months, A was in the past year, and I think, if I remember correctly, P was diagnosed when he was three. 
The Boys
The Youngest Girls


P and A
I didn't know the other two families before we met in Madison, but was such a treat for me to meet Fiona and her mom after becoming friends via our blogs. Belalu is so lucky to have a friend so close in age with hypo, and we realized that when we're in Vigo, our families aren't too far away, so we're hoping for another meet-up before Madison next year.
Did you notice Belalu's shirt???

I've mentioned before how lucky I've felt to meet so many wonderful people since Belalu's diagnosis, and I definitely felt that way after our visit to Madison. To know there are such loving families just a phone call and/or car ride away makes me feel very grateful and fortunate. 

Friday, November 9, 2012

More on Dr. Pauli's Visit

I forgot to talk about the whole last part of the appointment with Dr. Pauli, so in my next post I'll talk about our gathering post-appointment. (I don't dare say tomorrow, since the way my week's been, it might be longer than that)

Honestly, I didn't go into his office with a lot of questions. I figured he'd know better than us what we needed to know. Basically, I wanted to know Belalu is going to be ok health-wise and I was curious if he could give us an idea of her adult height, since the range for hypo, depending on where you look, is about a foot difference. And we wanted to talk treatments and get his opinion on them.

In terms of her height, he said that right now she is actually still on the AH growth chart, which surprised us because no one else has found that to be true. So, she is way at the top of the acon chart. (There is no hypo-specific growth chart). If this is true, right now she is "tall" for having hypo, but since J and I are both exactly average for our sex, it is most likely that she will also be average for her condition- which I think would put her at about 4'6" at her full adult height. Dr. Pauli said that the best age for predicting adult height is age 2- until then we really have no way of knowing.

After talking to him, we both came away with the impression that she will not be disabled, either due to health conditions or her height. She will face some challenges adapting to a world made for taller people, but she will not be hindered from doing what she needs/wants to do.

This led us into talking about possible treatments. We have decided not to pursue growth hormone therapy. As her mother, I think she is perfect the way she is.  I won't actively encourage the limb-lengthening procedure, but if she decides that it is something she wants to do, I will support her decision. J is approaching things a bit differently. Whenever we talk to someone about her condition, he brings up limb lengthening, saying "if that's something she wants to do." He wants to keep her possibilities open and also I think it assures him in a way that she does have this option. I'm concerned that if we raise her telling her that she can do this in the future if she wants, that we are cultivating an environment in which it is implied that it is something that she should want to do. Of course, a lot of this depends on how we express this idea to her, and we still have some years to figure that out, but we'll be talking about it to her brother before then, and it will surely come up in conversations with others along the way. I want to make sure we're cognizant from the beginning about how we talk about her condition at home and to others.

We also recognize that our perspectives are shaped by our culture. A much higher percentage of little people in Europe decide to proceed with limb-lengthening surgery than in the U.S. (I don't have exact figures right now, though I'd like to find them in my *ehem* free time). Dr. Pauli mentioned the concept of "bella figura" in Italy, where one's exterior is believed to be a reflection of one's interior beauty. J says he thinks the difference between the perception of limb lengthening in the U.S. and in Europe is the difference between individuals adapting to society (Europe) vs society adapting to individuals (U.S.). I would be interested to know others' opinions on this. I have seen plenty of evidence of people in Spain working to make their society more open and accessible to all. I think in the majority of cases, the reasons behind the decision have to be more than just conforming to society, and are likely to be as varied as the people opting to do it.

Since each of us are approaching this subject from a different angle, we had different questions for Dr. Pauli. Recognizing that his answers were anecdotal and not scientific, J asked if anyone who had done the surgery regretted it, and he said no. When I asked if he had met anyone who had decided not to do the surgery or hadn't been given the opportunity to do it and wished they had, he said no. I then asked if he thought that the family culture and one's experience with LPA affected someone's perception of limb-lengthening, and he said he thought that it did. There are many cases, though, some that I know personally, where the parents didn't push the procedure, but the child wanted it.

The limb-lengthening procedure will only get better and less invasive in the coming years, so for now we're going to be aware of it and we'll see what Sabela thinks about it as she gets older.

Tuesday, November 6, 2012

Seeing Dr. Pauli in Madison

Oh my! How long it's been! Work, a teething then night-vomiting babe (then teething some more), a week of single parenting, accidentally giving my computer a nice bath... all have conspired to make blogging impossible these past few weeks. I'll start more or less where I left off last and try to catch up this week.

We went to see Dr. Pauli in Madison on October 24th. It was challenging with the two kids vying to take attention away from our conversation with him, the office was uncomfortably hot for everyone, and I could tell that those factors combined with the long morning of appointments was wearing on him. Nevertheless, he did a thorough history and then exam of Belalu, then addressed all our concerns for the future the best he could.

History: He said that her neonatal seizures (presented as apnea) were definitely related to the hypo, in spite of what the geneticist had told us. However, when they did the EEG they did not check for temporal lobe dysgenesis, so he wants them to go back and check to see if there is, since in most cases he's seen there has been. Conversely, the cardiologist has been keeping an eye on her for a couple of different things, and he said that he did not believe those to be related to the hypo. I mentioned that at my 17-week ultrasound they noticed that her legs were short, and he said that that would be unusual since the hypo does not usually manifest itself that early.

Currently: Belalu is doing really well. He said she was extremely advanced in speech, and she's doing well walking. He noticed a slight bowing to her lower left leg, but nothing to be concerned about at this time. It's possible it will straighten itself out (though it's also possible it could worsen). Although she cannot straighten her arms fully, and never will be able to, he said even more important for her independence and reaching was the rotation of her wrists, which looked fine. Her ears were "near perfect" and while he still recommends a hearing test to be sure, her advanced speech and ear structure gave him no concerns for now.

In the future: Since she's been off her seizure medication since last fall, we hope she is in the clear, but there is no guarantee. So, when she's sick we should try to keep any fevers down because they could potentially percipitate seizures. We'll have to watch her legs for bowing and be sure to measure her head at each appointment to watch for hydrocephalus, because it could sneak up on us at any time. He said she shows no signs of curvature in her spine. We'll have to watch for learning disabilities when she reaches school-age, but he assured us that beyond that, once she reaches school age, most of her health concerns, if she has any, will have already manifested themselves.

It was a very reassuring appointment. Unless anything appears suddenly, we won't have to return for another year. He also told us the endocrinologist, orthopedic specialist, and the bi-weekly Birth to Three visits were all optional. So, we canceled the first two that we were going to see on Friday and tomorrow the Birth to Three group comes by again, so we'll see what they decide. They had already implied at the last appointment that they, too, didn't think they needed to see Belalu as frequently as they have been.

Tomorrow I'll post about our gathering with three other hypo families in Madison.