I was walking between buildings on campus earlier this week and I was delighted to see a young LP woman sitting outside. I wanted to run up to her and meet her, but I didn't. It was perfect- she was sitting by herself, clearly not in a rush or in the middle of a conversation, I could have gone up and introduced myself. But... I didn't know what to say. So, I just walked by and went into my office.
Then, I thought about it some more and tried to figure out what to say, screwed up my courage and went outside again.. but she had gone. I've been looking for her all week, but haven't seen her again. It's a small enough university/campus/town that I'll most likely see her again some day, but it's not a guarantee.
My initial hesitation partly stems from my innate shyness- I don't often approach strangers for anything. However, in this case, I also hesitated because I didn't want to offend her. I mean, I wanted to meet her, I wanted to tell her I thought it was so cool to see her on campus, that my daughter has hypochondroplasia... but what if she thinks, so what? or worse, what if my being excited about seeing her on campus somehow is taken to imply that I think it's extraordinary that she is a college student? I've read several articles that make a huge deal out of someone "overcoming their challenges" and getting a college degree, as if being an educated little person is an amazing feat- I didn't want her to think that was what I was saying. So, I hesitated and I lost the opportunity to meet her, at least for now. I still worry a bit about what I'll say, but I can't just walk by next time.
Thursday, August 30, 2012
Saturday, August 25, 2012
We found out about Belalu's diagnosis a couple of days before we left town for a month and a half. I had already mentioned it to her daycare teacher when the Dr. suggested dwarfism at her 9 month appointment. I was in shock, because of the way he had said it to us, and it just came out in a conversation with her. So, when we got the official diagnosis, I followed up and told her it was indeed hypochondroplasia, as we had figured out. Her question to me was "Who do you want me to tell? Are you ok with me mentioning it to the students or would you prefer I don't?" (Belalu and Essie go to the Children's Center at our university, which has a strong early childhood education program. So in addition to each room having a main teacher, it also has a number of students who work there, usually for most of their time at the university, and a few other practicum students who are there a semester at a time, though some then are hired on and work there until they graduate. It's an amazing program, and has been rated one of the best daycare programs in the state.)
When she asked me that, I didn't know what to say at first. It's not like it was going to be a secret, but at the same time, I wondered, do all these students need to know, especially those that will only have contact with her for a few months? I asked J when I got home, and he said, "of course she can tell them- it's not a secret." I couldn't really say why I still hesitated, but I did wait a few days before going back and telling her that she could go ahead and mention it to the student staff. Then she asked me to repeat again the name of her condition, and I told her, but I said that all she needed to mention to the other staff is that Belalu has a bone condition that restricts the growth of her arms and legs. I also emphasized that at this time her condition would not affect her mobility in the classroom or call for special treatment. Then she said something that surprised me- the students had already noticed that her arms were short. I think I've mentioned here before how I'm so used to her proportions, that they don't seem unusual to me. If you work with children all day, however, differences are more obvious. When she told me that, I realized that I had been hesitating to give her the go-ahead, because deep-down I was thinking that if they didn't know she had a condition, they wouldn't notice she was different. Ridiculous, I know.
Essie and Belalu started back a daycare this Tuesday, and last weekend I decided to email the program director, who is also someone I interact with on campus for other things, and tell her about Belau's condition. She will likely be here through preschool, so I figured the sooner they knew, the better prepared they could be. I cc-ed the infant room teacher and attached a .pdf file of "It's a Whole New View," the parents' guide from the Little People of America's website. She responded that she didn't know about Belalu's diagnosis, and has not worked with that condition in the past, so "we can learn together." She also thanked me for sharing the guide, because it answered a lot of questions. She closed the email telling me that Belalu will surely thrive in such a great family and with the teachers there. Once in a while I still picture them all in a staff meeting, being "updated" on her condition, but I just have to let it go. Yes, people will talk about her. However, with her personality, I doubt that they will linger long on her condition. There'll just be too much other great stuff to say.
Friday, August 24, 2012
Weight: 8.54 kg; 18lb 13 oz
Height: 66 cm; 2'1"
I also checked her hypo test results and confirmed that she does have the same mutation as the GH study. I must have misunderstood when I thought the Dr. said hers was different, because JC didn't hear that. Good thing we were both there. Six hours is a long time to be talking to doctors.
Wednesday, August 22, 2012
We were at the hospital/clinic all day today. Belalu had six appointments (!) to get through and managed to do it without getting too fussy. Most of them were NICU follow-up visits. One of these days soon I need to start from the beginning and talk about all the drama and excitement we've had with this little miss from, well, basically conception. But for tonight, I'll just explain that we were in the NICU for the first 10 days of her life because of neo-natal seizures. I like lists, so I'm going to do a list run-down of the days' appointments.
- Neuroscience: We weaned Belalu off her seizure medication by the time she was two months old and she's had no seizure activity since the NICU. Now, the Dr. explained, she is basically watching her physical and mental development. No concerns there. She wants to see her again in six months.
- Physical Therapy: As always, she had Belalu do a bunch of activities while she scored her. The baseline score for her age was an 83, and she was over a 100 in each, so no worries there. She said she expects her to start walking any day (yes, we've been thinking that for months). Since we see a PT and OT every other week at home, she said we needn't come back until she's 3 years old.
- Nutritionist: She didn't even know Belalu had hypochondroplasia, so was completely unprepared. We asked about the conversation we had in Spain with the family of N, who has achondroplasia. They had told us she was not supposed to eat red meat because the protein could be too much for her already-muscular arms and legs. The nutritionist told us that didn't make a lot of sense science-wise and since we eat very healthfully already, she wasn't concerned at this time with Belalu's diet.
- Someone else: She took Belalu's footprints and mounted them on some nice paper for us and told us about her office's services that provide comfort and/or distractions for kids undergoing treatments, getting blood drawn, etc. She was nice, but her suggestion for them to do an ECG while she was napping did not get us extra lunch time, as we had hoped. In fact, instead of getting out at noon, we got out at 12:30 and had to be at the next appt at 1pm. They did not push back the 1 pm appt as she had said they would, so we ended up with a half hour for lunch and another half hour between the last two appointments that was just waiting around in a consultation room.
- Cardiology: Belalu had some irregularities with her heart when she was born, which didn't shown up again at her 6-month ECG, but at that time some "slow beats" appeared that made the Dr. want to do a follow-up at one year. She'll be wearing a monitor for 24 hours later this week to check this out again. She told us that she didn't have reason to believe that any of this was related to her hypo diagnosis. At this time, she has no issues with her chest cavity and organ placement.
- Geneticist: This was interesting, as always. This time, she brought up an endocrinologist and said she thought Belalu should see someone to have a baseline of measurements. She also brought up the possibility of GH therapy, which she had said was not a possibility last time. She referred to the study that we've talked about, but did say that the people getting GH treatment in that study have a different mutation of hypo than Belalu's. We talked very briefly about limb-lengthening, but she said that she didn't think that her disproportion or her height would be extreme enough that we'd be interested, but that we'd see with time what our family decided in that regard. They used the AH growth chart rather than the acon chart to plot her measurements. Since she knew we were going to see Dr. Pauli in October, she just kept deferring to him and told us to ask him such and such, check with him about that, etc. So, we left it that we'd go see Dr. Pauli in Oct and then later that same week we'd go see an endo and an ortho at our regular clinic. I forget when she said we'd see her again.
I left Belalu's measurements upstairs and I'm heading to bed, so I'll post those tomorrow. All I remember now is that she grew 2 lbs and 2 cm in the past three months.
Monday, August 20, 2012
Wednesday we have a day of appointments for Belalu. We have four related to her NICU follow-up and two related to her hypochondroplasia. Essie will be in daycare, but we will have to take 11-year-old Juju with us. I'm wondering if anyone has any advice for me on what you do with your other children during these long appointment days. He's into his computer, so he'll bring that along with a couple of books, but 6 hours is long for anyone to be in the same place for all that time, let alone a very active 11 year old boy. Help!
Saturday, August 18, 2012
|On the day she was born|
|One year old!|
She has such a charming personality. Ah, if only I had half her ability to engage people. Almost from the start she would engage people in eye contact. It was intriguing. This tiny little thing would look at you and establish a connection with you. It was not the flirty make-you-drool-from-cuteness baby look. It was a direct, acknowledging-you-as-another-person look. And she still does this everywhere we go. We cannot be in public without Belalu turning the heads of everyone and leaving them all smiling. (I seriously wish I had this ability). This girl has a presence.
I love that she is different from everyone else. I am proud that I have a daughter who has been challenging my expectations from the first moment of her existence. She is an incredible person, and she's mine.
Here's to another year of discovery and learning for us both, my love!
Friday, August 17, 2012
After being gone for a month and a half, I see it all with a new, critical eye. All the things that need changing or repair disappear into the background of our daily lives after a while, but during the first few weeks home, they seem to be the only things I can see . Before we left, I had cleaned and organized the house. However, the first thing I did when I woke up was clean the fridge before it was filled with food again. Then came some other things that I hadn't gotten to before we left. Then I started de-cluttering the counters of knick-knacks that have been there since we moved in 3 years ago. Suddenly, I had no idea why I would want them there (JC asked me what took me so long- apparently they've been bugging him the whole time). Then I took out a pad and pen to start making notes of all the things that needed to be done- big and small. It's a pretty long list, but there's no deadline, other than doing as much as I can before they fade back into the background of complacency.
It's not perfect, that's for sure, but it's our home and I'm happy to be back in it.
We took two days of driving for 12 hours to get home, and Belalu screamed all the way. Both days she took three half-hour naps and almost all the rest of the time was screaming. I wish I was exaggerating. But it's done now, and we're home!!
Sunday, August 12, 2012
It's nice to be back. The first thing I did was get an iced latte. Yes, after a full 24 hours without any sleep I needed the caffeine, but I'd really missed them in Spain. There are Starbucks in the bigger cities, but nothing like that in Vigo.
The schedule changes have been brutal. The kids keep getting up earlier and earlier- today it was 5:30 am. I'm really hoping that changes soon.
We're visiting with my folks for a little while more and then back home. I'd be more excited about that if it didn't mean I had to start working right away, too. But for now, I'll enjoy visiting my family. We have an early-birthday celebration to orchestrate and a visit to the Island of Sodor in the works. Should be a fun few days!
Thursday, August 2, 2012
We're headed to a tiny village in the country where JC's dad grew up with his 10 brothers and sisters. The first weekend of August, the whole family gets together from all over Spain to celebrate the town's patron saint day. I'm not sure of the Internet situation there, so I'll likely be gone for a few days. Enjoy the start of August!