31 for 21: More about eyes [ Down syndrome, glasses, eyes, nystagmus]

If you missed the previous blip about Braska’s eye appointment, you can start here.  This is gonna  be a long one, but if you’re have an interest in tots and odd vision issues, this might be, well…interesting.

As I mentioned as a teaser the other day, I had a couple of concerns that caused me to make the appointment we had on Monday.  One was the tilting chin-up habit that Braska’s been perfecting for over a year now.  Though it has become more persistent and more extreme in the past few months.  The other issue is that she has been unable to sit on the couch and remain engaged in her shows.  She has been requiring to be closer to the TV than ever before in order to stay tuned in.

She has her yearly ophthalmologist appointment with Dr. C coming up in early December, but I decided these things needed addressing sooner than that.  Plus I wanted to make sure that if we needed new glasses, we could get that done with what was left of our flex spending account.

So off we went…  Dr. S (optometrist in Dr. C’s office) asked how we were and what was new, and I launched into my info-sharing mode, without overwhelming or sounding fatalistic. A delicate balance, but an important one, as I learned in years of hearing doctors express frustration about the way people present issues back when I was managing practices.  I explained how she looks down her nose at everything that required detailed attention.  I reminded him that we had addressed this previously with Dr. C and she didn’t feel it was visual, but instead thought it might be a strength issue and recommended we talk to PT about it. 

After last year’s appointment, we DID investigate, via a variety of other modalities, the cause of this habit of hers.  We talked to the PT, and it was determined after evaluation that this was not purely a core strength issue, but that since Braska does, in fact, have a VERY weak core, we would focus on trying to increase work on that area in order to help her posture and ability to hold her head properly.  We also talked to OT who also made adjustments to their exercises and activities to include more things that caused her to focus in various places and at different distances, hoping to help with her visual motor as well.

So neither PT or OT found the issues to be directly in their wheelhouse, so to speak, but they both agreed to assist toward the goal.

I have felt from the beginning that this was more visually related, as in Braska’s vision—her ability to see, not just visual motor.  She has nystagmus, which is not uncommon, and looks like her eyes are wiggling back and forth when she’s focusing.  This wiggling is much more easily controlled when she is looking down.

For those of you around from WAY back in the day, Braska was totally enamored with her hands for quite some time around 3 to 5 months of age. She was evaluated by a visual therapy specialist and it was found that she was finding her “null point,” or the place where she could make the nystagmus stop and see most clearly.  She generally held her hands down by her chest and peered at them for long moments at a time.

What I found when I did my own unprofessional testing recently is that Braska’s nystagmus is once again still when she’s looking down her nose with her chin tipped up high to watch something.  When we hold her head in a proper posture position so that she’s looking straight forward at the intended target, her nystagmus is quite obvious and she doesn’t stay focused on the target for long without looking around and then returning to the target.

The other element of this head-tipping situation is that when I held her in the proper position, encouraging her to look straight at the target, she had to raise her eyebrows to get her eyes to open enough to see straight ahead.  Like she didn’t have the strength to open her eyes all the way.  She CAN open her eyes, don’t misunderstand.  But in order to watch one of her videos or follow along with a book for several minutes, she cannot hold her eyes open in that position without looking away, resting by looking down, and then trying again. 

These findings brought our OT/feeding therapist to encourage us to have her evaluated by an OT who has specific experience with vestibular and visual motor.  We did have this evaluation done, and the OT was great.  She found what we’d suspected, that Braska’s low tone (hypotonia, common in DS) is causing her to struggle to work her muscles around her eyes and in her face to USE her eyes as she should.  Crazy stuff, I think.  This OT recommended specific vestibular therapy and strength exercises focused on the muscles used around her eyes.  Unfortunately, our insurance wouldn’t cover these things at that location, so we have to start over again somewhere else and hope we get someone who knows about this sliver of the OT element.

I could go on for days, and it might seem I have, but I’ll sum this part up like this…  things that don’t seem right often aren’t.  I was convinced that this was not just a quirky behavior or low-tone slouching issue.  And as it progressed, I insisted it be investigated.  I’m very glad I did.  Though we’ve still got some ground to cover to make headway, I’m pleased that professionals are seeing the problem, addressing the underlying issues, and are willing to help us find a plan that will benefit Braska.  That’s the primary goal, of course.

Dr. S was very open, understood where we’ve been with this, asked great questions and took lots of notes.  He will be reviewing the info with Dr. C and when we see her, and probably him also, in December, we’ll be going with photos and video in hand of Braska in action with the tilting issue, per his request. She did “perform” well for Dr. S on Monday, as he put in a video on the TV in the room and she did just as she usually does.  He played with her position a bit—it was Elmo so she didn’t mind—and he tried to hold her head up, manipulate her position, etc.  He was able to get a great example of how she lifts her brows, how she cannot stay focused on the show when forced to watch straight on, and how her nystagmus changes with her position.

All this info will be compiled and we’ll come up with a plan soon. 

Seemingly uninteresting in the situation was my second concern, that she has to sit so much closer than she used to when watching something.  He also did some super special scientific testing on this while she was watching Elmo, rolling her forward in the stroller to see where she engaged.  And after dilating her eyes and seeing that her prescription has changed quite a bit, that fit as well. 

So we have answers, or at least the right start toward finding the answers.  That’s good.  I felt great about how the appointment went, and I let him know that.

Now we wait for the new lenses to be done.  We evaluate how the updated prescription helps, and we return with new date in December for consultation with Dr C on the situation.  I’d like to avoid another surgery, but it’s always a possibility.  We’ll hope that we can come up with a non-invasive approach that works.

If you have any questions about this, don’t hesitate to ask…  eyes are something we’ve had experience with.  She’s had her glasses for almost 3 years! Wow!

Mommy report: The clock is ticking

Because Jen said I won’t have time to get an update up…I just HAD to do one in the quick time I have before they tell us she’s done.

We just walked her back to the OR.  She’ll be back in no time.  She was dancing with her daddy on the walk there.  Of course I caught the moment between giggles.

Thanks for all your well wishes…we know this is a little routine thing, but it’s always nice to have people pulling for our girl.

Mommy report: Bright and early

We get up with the chirping birds tomorrow and head to SLCH.  We are to report with Braska at 6:45am to the 6th floor, so that means leaving home by 6:15am.  Some of you are familiar with that area of the hospital.  We’ve not had the pleasure of procedures on that floor yet, so it’ll be new for us to be on that side of things and not just hanging out with friends while they wait for their littles.

It should be a quick and fairly uneventful morning, we hope.  I’ll be updating on here (Braska’s blog) via my phone if I don’t have time to deal with the computer.  Bear with me if things look a little odd in the process.

Prayer team: Please pray that all goes well, no hitches, no complications, smooth sailing.  She’s a tough cookie… but we don’t want her to have to hurt more than absolutely necessary.  She has had more than a few rounds with anesthesia, but each one is a new risk and challenge.  We expect no issues, but we prefer to err on the side of extra prayer! (That’s not an “err” that’s a good idea!)

In the meantime…anyone got a funny joke or embarrassing story (doesn’t have to be about YOU) they wanna share so I can pass the time while we wait?? Do share!

Mommy report: Wired and ready to sleep

I’m home, after dropping Braska and M off at Children’s.  We got her all set up and wired up, and she did SO well.  I didn’t think she’d tolerate all the sticky things and leads, but she didn’t flinch.  Well, until they wanted to use one that would hook around her lip.  Nope, that was not going to happen.  Thankfully, her super nice tech Donna had another cannula without that hook, so all was ok.

Here’s a pictorial version of the process.


The little TV with Sprout on it was the saving grace.  She stayed focused on that and didn’t mind the rest of the action happening to her. 


She was happy that Daddy was in p-jammies too and was ready to snuggle.


The final look, cannula and all.


A hug from Mommy before I left for the night.  She was plenty tired.


Last minute adjustments.  She had leads on her legs, chest, face, and head.


Ready to sleep, Daddy close to make sure she went down ok.


Quite a bunch of wires for such a small girl.


And finally, here’s a little clip with one sleepy girl’s “good night.” 

Braska: Sleepover at the hospital

Tonight I get to sleep at the hospital even though I’m not real sick or anything.  They’re going to watch me sleep and see if they can figure out how to help me feel better and sleep better and breathe better.  Daddy’s going to stay with me all night, too, because Mommy isn’t very good at sleeping at the hospital.  KiKi is staying with Auntie Rachel and Uncle Patrick so Mommy can take us down tonight and pick us up really early tomorrow morning. 

See you tomorrow!

Love,
Braska

Braska: Me ‘n Jack: Heart buddies

Not every kid has the kind of cool toys we do at my house.  When Jack was over to play this week, he found my s’tef-a-scop.  Mommy and Daddy used to use it when they put my tube in, back when it had to go in my nose down to my tummy for my milk. 
Both of us had our hearts fixed when we were little babies, we have seen lots of doctors, and they always have these things and want to listen to our insides.  So we know just what to do with them. 

(Mommy note: Jack was SO impressive with this.  This is not a fake stethoscope.  The ear pieces are very stiff, but he managed to get them wide enough to get around his head and in his ears correctly.  Then he picked up the other end and placed it perfectly on her chest and then waited. Like he was actually listening… and she let him, not seeming the least bit surprised. So cool.)

Mommy report: ENT visit

What’s new, you ask??

You might have seen on the Twitter gadget on my blog that we had several things to talk to the ENT about yesterday when Braska saw him.  I took my handy dandy fancy clipboard with my questions ready. 

We addressed her sleep issues, waking frequently, and apneic episodes that have been getting worse lately. 

We’re now waiting for the sleep center to call and schedule her appointment. Depending on what is found, she may be having tonsils and adenoids removed.

We addressed her hearing issues, the fact that she’s been getting lazy with her speech, and seems to show that she’s not hearing as well as she has in the past. 

After the oh-so-fun microscopic exam of her ears, she has fluid again, 4th time in 3 months, and we’ll be scheduling surgery to insert tubes after the results of the sleep study are in.  If we need to do the tonsillectomy, we’ll combine the procedure with her tube placement to avoid anesthesia twice.  Most likely her hearing issues are related to the fluid distorting what used to be clear to her.

We addressed her incessant teeth-grinding, letting him know that it happens when she has ear issues, and it lessens or stops when her ears are clear.

After the typical “kids just grind their teeth,” he did agree that it will likely help to have the fluid situation taken care of via the tube placement.

So that’s where we stand.  We’ll hopefully get the sleep study scheduled in the next few weeks, then after those results are in, we’ll set up the tubes procedure and whatever additional things need to be done at the same time under anesthesia… possibly even dental work that is soon due.

There. You’re up to date. Thanks for asking!

One CUUUTE baby boy!!

A couple weeks ago, my friend LC’s new little brother, Jace, came to my house.  He is SOO CUUUUUTE!  I love things that are cuuute.  That’s how I say it, too. Cuuuuute!

Jace was coming to see my heart doctor that I’m sharing with him and LC, Dr J.  He’s really good, and Jace needs a good guy, so I thought he would like Dr. J alot.  Dr. J is going to have Dr. H help Jace too, and then he’s gonna be all fixed up!

After Jace had his appointment, he and his mommy Miss Courtney stopped by my house to say hi.  We told Miss Julie and Jack that they were there, so they came by to see them, too!

Jace was kind of hungry, so Miss Julie gave him some milk.  He doesn’t drink much because he gets tired when he drinks.  I used to do that, too, before my heart got all fixed.

Jack checked out Miss Courtney. 

She’s really super cool, and she always plays with us when she visits.  I hope I get to go to her house someday, because I bet it is SO fun there!

We were sad that we didn’t get to see LC that day, but she was having a blast with her friend Alayna.  Maybe I’ll get to play with them both when I go visit.  I’ll have to tell Mommy to get movin’ on that!

Psssst. Miss Courtney, maybe I’ll sneak Mommy’s phone and send you a text.

Hanging out with my friends

This week I’m sick, so I can’t play with my friends.  But I found some pictures that I forgot to show you of some fun times we had lately.

Here’s me and Jack watching Veggie Tales on Mommy’s computer.  Kinlee was climbing up on us but she fell down right before Mommy took the picture.

Then another day I was showing Jack my favorite present from Grandma C that I got for Christmas. 

You put the letters in the little sun and push and it sings a little song about the letter.  Like this… R says rrrrrr. R says rrrrr. Every letter makes a sound, R says rrrrr.  I know the whole song, but I like to push them alot of times before the song is over.  Mommy makes me go to a different toy when I do that, though.

Then on a different day, we left school early to go see Sophie and her family at the place where we see my doctors.  It’s called Children’s.  They are the best, I think.  Sophie has some of the same doctors I do, so she was seeing them that day.

Me and Jack and Sophie had alot to talk about.


Then we let our brothers and sisters in the picture with us.  Except Jack’s weren’t there, but we let him share ours.
 

There’s another friend I got to see, too, but you’ll have to wait til tomorrow to see who it is!

No school today

I like school alot, and when Mommy gets me up in the morning I always tell her “Sa-kool tuh-day!”  And today was P-Jammie Day!! But I didn’t feel very good when I got up.  I tried to tell Mommy what was wrong but she didn’t understand.  So I just laid on the couch and cried.  She knew something was wrong, but she didn’t know what it was.

So we went to pick Daddy up at work so he could come to the doctor with us and help with KiKi.  Doctor told us that I have a bad ear infection in my right ear.  (My first one ever in my life!!)And my throat is really red and spotty.  Doctor stuck a thing in my throat—that I did NOT like—and it told her that I didn’t have something called “strep.”

On the way home, I went right to sleep.  Mommy snuck a picture with her phone.

I got new medicine, so I hope it makes me feel better.  I don’t want to be sick for Christmas!

Mommy report: DS center, 3-year check up

It’s late and I’m more than tired, but if I don’t get some of this down now, I’ll totally forget. So bear with me as I document a little.  If I leave something out that’s interesting to you, feel free to ask.

Today was Braska’s 3-year appointment at the DS Center at St. Louis Children’s.  We love this place. It is a large part of why we now live here.  If you have a kiddo with DS and you’re anywhere within about 3-4 hours of St. Louis and you’re not seeing these docs for yearly check-ups, you are missing out. I’ll have to talk more about why it’s helpful and important to us later, but really… it’s totally worth a day once a year.  To talk with people who deal with and know DS thoroughly and often.  Priceless.

We used to make these days very full, seeing up to 6 specialties in one day, plus labs, but part of the beauty of living nearby instead of 3 hours away is that we don’t have to do it like that anymore.  Today we saw the doc at the DS center, the cardiologist, the ophthalmologist, the optometrist, and had labs drawn and x-rays taken.  And it was a short day, relatively.

Dr. Grange is the DS doc, and she is wonderful. She knows her stuff.  We don’t have to prompt her on what’s up with things, we don’t have to wonder if she’s read the latest info or guidelines.  DS is what she does, and it’s great to have that available.  She was very pleased with how much Braska has progressed in the last year, especially with her speech.  Braska was in mimic mode today and had to repeat practically every sentence-ending word all day.  She was especially into her “hi” and “bye” today as well as “thank you, you’re welcome” which all comes out like one response and tends to crack people up.  She “you’re welcome’s” herself after she says “thank you” and it’s just too funny.  I need to capture it on video. 

Dr. Grange ordered labs to test for thyroid and blood counts and she ordered x-rays of the neck to rule out AAI, which can be common in kids with DS, so they check it at 3 years old.  We’ll get those results back soon.

Dr. Johnson, cardiology, is one of our faves. He is just so nice.  He listened to her heart for some time and said it was great.  She has the faintest murmur that at times isn’t there at all.  She doesn’t have any trouble with leakage that would cause concern, and he didn’t even feel we needed an echo today, which is a first at a check-up, so we’re good for another year.  We’ll take it, happily.

Braska weighed 22 lbs 5 oz today, and they measured her at 33 1/2 inches (though this seems to be ever-changing, depending on who measures her). That means in the last year she’s gained just under 3 lbs, as she was barely over 19 lbs 10 oz at her 2-year check.  She’s not anywhere near the “normie” growth chart—height or weight, and she’s barely on the weight chart for DS, at about 8th percentile.  For height, she’s at about 50th percentile on the DS chart.  (For reference, a typical kid in the 50th percentile at age 3 is 37.5 inches and 31 lbs.  Her weight is 50th percentile for a 13-month-old and her height is 50th percentile for a 23-month-old, both on the typical charts.  No wonder she seems quite tiny.)

We also had appointments at the eye center today. We first saw Dr. R, who checked out her prescription, dilated her eyes, and verified that she’s not changed much at all in the last year, which is not great and not bad.  Then we saw Dr. C, the ophthalmologist, and she said that it’s always nice when they actually improve at this age, but it doesn’t always happen.  And as long as it’s not getting worse (the farsightedness), we’ll take it.  We’ll see them again in a year unless there are issues.  We’ll reevaluate at that point if they think any kind of surgical intervention would help.  At this stage, it doesn’t appear that it would. So we’ll stick with the glasses, and we’re ok with that.  Though we will need new frames in the next several months sometime.  She’s wearing the same ones she got when she was 13 months old, and she’s getting close to outgrowing them. 

We did talk about Braska’s tendency to tilt her head to the right to look at things, and often she tips her chin up too, though she doesn’t look under her glasses, just through the lower half of the lenses.  I’ve talked to her PT about this too, to see if it’s a strength issue, and we’re still unclear.  The eye docs agreed that they don’t think it’s a vision issue, so that’s good, I guess.  They recommended seeing an orthopedic doc, though…one specialty we haven’t yet seen.  So we’ll check on that.

Overall, it was a good day.  A few little unhappy times in lab and x-ray, but that’s understandable, and it’s always very short-lived.  Big thanks to Grandma C for keeping Kinlee so I didn’t have to wrangle her in the midst of all the appointments.  It would NOT have gone well, if I had taken her, too.

There was alot of other little tidbits of info that were very helpful, but for now, this is what I need to jot down to remember, so it’ll do.  And I’m off to bed. Sweet dreams to you all… 

I’ll leave you with how we spent our free time waiting and goofing like silly girls.

 

Braska: Shopping with Sophie

Last week on Tuesday, my friend Sophie from where we used to live came to town because she had to see some doctors. Can you believe those doctors put some tubes IN her ears? Isn't that crazy? Anyway, after she was done, we met up at the mall. I love going to the mall or to the store or anywhere at all. And now that Kinlee's here, we have a new stroller and I get to sit in the front!

I tried to give Sophie a fist bump, but she was still tired a little.

While Sophie was getting some shoes, I checked out the neat store.


We got some lunch, and I took a nap in my stroller. Glad I got to see Sophie though!

One seriously long day

I can't even fathom going through the details right now, but I need to for good record keeping. It will have to wait. I left the house at 8:03am and returned home at 7:05 pm. And I don't live 3 hours away anymore!! These days usually go so smoothly...but the honeymoon is over. This will be the last day we do the full day of visits. We moved here to be close, so we'll not do more than 2 or maybe 3 on the same day from here on out.

Today's accomplishments:
ENT--Check
DS specialist--Check
Cardiology--Check
Echocardiogram--Check
Eye center--Check
GI--Check
Audiology--Check
Lab--Check

Braska did marvelously, with some understandable rough spots. But she was great overall. And thank God that my mother-in-law came along... what a day.

Details later, probably on Braska's blog in the next few days. Ahhh! And I still haven't talked about our good day yesterday... I'll get there. Sometime soon.

It's a...

Baby, just one, and it wiggles. That's what we learned today from the MFM specialist, Dr. H. The due date is still iffy, in my opinion, but it'll be the first half of Feb sometime.

I was given all the ins and outs of the screenings and tests available. I explained that I'm not worried about things unless it's something that requires a change in care or delivery plan. We'll do the basic stuff and have plenty of ultrasounds.

The doctor asked what resources I found to be helpful when we got Braska's diagnosis. So I had an opportunity to talk about everything from our local group in Champaign to the blogs and forums that really made the difference for me. I let him know that I always want to be available to any practices that I'm involved in with work or as a patient if they have a situation where I can be of help. This is the office that delivers prenatal diagnoses to women, so I love that he is open to learning how to do it in a more helpful way. I told him of Braska's blog and he asked if he could write it down to share. I had blog cards with me, so I gave him a couple and said I'd be happy to talk to anyone if they ever thought it would be helpful. But often, it's much less intimidating for someone with new fears and questions to be able to simply look through a blog or forum than it is to talk to someone. So I'm so glad that we might be able to help someone get a more realistic view of Down syndrome and put a cute little smiling face with the big bad diagnosis.

Doctor Therapists Realtor

I knew this was gonna be a busy week, but today was a little ridiculous.

9 am: Braska pediatrician appt. Just to get established and make sure she had all the right info. It was pouring rain when we left, and I'm no good at kid and rain combinations. We made it barely on time. My first concession of the day was to go out in schlumpadinka fashion. Yep, I've gone there. Capris, neat shoes, and cute top--didn't happen. Yoga pants and T was it. What has happened?!?

10:15 am: Back to the apartment. It's so darn trashed there's not anywhere on the sectional to sit down. But I feel rough, so it's plop in the recliner for me while Braska plays. Dealt with some work and emails but mostly I just sat still and tried not to be dizzy.

11:00 am: Knock at the door. The PT is here. Forgot about that one. I sent an email to find out when my appt was, but didn't get a response. Darn email keeps going to spam. Ok, welcome to disaster central. Braska did great, made some big strides with pulling up to her knees at the couch. But I could hardly keep my eyes open.

12:10 pm: Feed the kid in 3 minutes. (Thank God for tube feedings at times like this.) Rock her for a minute, put her to bed, and collapse into bed myself for a quick nap. But it doesn't happen. I can't nap. I always just race through the things I need to do and what I'm NOT getting done by resting. I get so mad that I can't go to sleep that I end up more agitated every minute. I laid there for about an hour and closed my eyes even though I couldn't sleep. We've got so much to do still today! I need to get some energy!!

1:10 pm: M comes in from work for lunch. I get out of bed. I've made no lunch obviously, so he has a pudding cup and some pretzels. Thank goodness he's not a foodie. We chat a minute. He gets Braska up because speech will be here in a few.

1:30 pm: Jocelyn comes for ST. Braska plays and cooperates some. She's not much for mimicking on command yet. But she had a good time. She likes Miss Jocelyn. M heads back to work at 1:45.

2:30 pm: We leave as Jocelyn does, heading out to the realtor's office. I had texted my sister Rachel to pick me up some food on the way to meet us there since I hadn't had a chance to eat yet. She came along to corral the kiddo while we visited several places.

2:45 pm: We met up with Sandra the realtor. Headed out on our tour of 6 places. We ruled out 3, I'm on the fence about 1, and we like 2. That's not bad overall. Houses in this price range are going quickly here, so a few that we had wanted to see had already sold over the weekend. I was pleased we found a couple standouts at this price point. It was really hard to actually walk through places that we were considering. I love looking at houses. Love it! But we are downsizing, and that's proving to be more of an adjustment than I expected. We loved our 2-car garage, but no more. We loved having 2 baths, but no more. We loved our spread out room for us and guests, but no more. It will be fine. We'll have room to be, but it will be an adjustment for sure. Not to mention the pool....... but it's ok. It really is. It'll be less for me to keep up with, and I like that. I actually was pleasantly surprised, as were Rach and Sandra, at the good places we saw. I was afraid everything would require a great deal of work, but two of the options are just about turn-key. That's important since we're trying to get all this done and moved in by 8/31...the end of our short-term lease in the apartment.

5:15 pm: Back to the realtor's office. We head home. I collapse and hand Braska to M. The local DSA meeting is in 45 minutes, but nope...just can't do it.

And from that point on, my mind races. I'm replaying every bedroom, bathroom, kitchen, finishes, carpet, neighborhood, etc. I'm betting there won't be much sleep tonight. My brain doesn't have a turn-off switch when I need it. So I pray God will show us "our house" just like he did 4 years ago, clear as day. I gleaned a few little hints today, so maybe more will come. We go back tomorrow night, me and M, so he can take a look at the top 3. My hope is for a clear choice or more rule-outs.

The new same ol'

I've had alot I thought about blogging about, but I can't seem to find 5 minutes of lucidity to compose any thoughts. How you 3-a-day-post-people do it....I'm so clueless.

Braska's got 5 therapy appointments per week now, so that in itself makes for busy. And this week we added an appointment for me today, and an appointment for her with the pediatrician tomorrow. That's alot of places to be in 5 days. Oh, and we're also going to look at houses tomorrow night, but it's very preliminary.

This weekend we spent 3 days in South County with the fam, I'm thinking we need a vacation home there already. Am I glad the drive is only 40 mins? Yes!! Do I kind of wish for weekends like this it was 10? Yuppers. I'm so darn exhausted. We had a great 4th hanging out at Cindy's place by the pool. Then Saturday Cheryl had a graduation party and we hung out some with Jerry and Nadine, relatives from Iowa, who were in town. Sunday it was back down for church and lunch before Jerry and Nadine took off, then hangtime at the parents for the afternoon. This coming weekend my brother-in-law is getting married, so we're headed south again, but they're worth it.

We had to find another place for Belle to go. She offended her host, so we found another willing party to take her. Thank you Nancy!!!!!!! I think she'll be very happy. I just want her to be happy, but I'm sure she is confused, and that's sad to me.

For those of you who like preg updates... I'm feeling icky and un-good, but nothing like the bad most of you probably deal with. Just a constant not-good that lets up for a few hours in the middle of the day. It sure makes normal things more difficult. I'm having some sleep issues, but I think they're related to exterior influences, not the tummy baby. I went to the OB today, very nice doc. She is sending me to an MFM (maternal fetal medicine specialist) next week for an ultrasound to determine when this baby's gonna get here. And of course, I'm high risk, ya know. Will be 35 when I deliver, history of baby with chromosomal issues and heart defect.... and some other stuff. High risk. Watch out! I agreed to go because I don't mind ultrasounds, but I made clear that I'm not interested in the invasive testing... what? we may have a kid with a chromosomal abnormality? No! Say it ain't so! Yeah, that would be the easy option, we've decided. We KNOW how to do THAT! It's them regular kids we don't know what to do with.

Alright, enough of this stream of consciousness blogging. Dangerous, it is. And I don't cotton to such things. Time to try to sleep again.

Liquid baby

If Braska continues with the eye watering and nose running and rattling wet cough, she's gonna just soak into the floor and disappear I think. That girl's gooey. Now, granted, she doesn't drool, even now, and that's good. Drool gets to me for some reason.

The good news is that she slept better last night thanks to our pals ibuprofen and benadryl. All night. We all slept all night. How spoiled we've been!! Let's hope it continues, though.

We saw her new pediatrician yesterday for a quick meeting. I like her, and I think she'll be willing to do whatever we need for Braska, so that's what's important. We actually go in tomorrow for a before-the-weekend check on Braska's cough, but we'll see her associate since she's out.

BTW... Stay tuned for the return of Random Questions next week... are you ready?

A few winks

Last night Braska had some trouble initially, but M was nice enough to take her so that I could go to sleep, and he returned to bed sometime a little later after she was snoozing in her bed. She slept from about 11 to 4:30am, which normally would be a bad night for her, but after the last few, that's pretty good. I brought her in to our bed at 4:30am hoping she would snuggle up and go back to sleep, even if I couldn't. She was so restless, but she slept for bits here and there. She just thrashes around with her eyes closed like she just can't get comfortable. For her, that's especially weird, because when it's time for bed, she's like a stone. She zonks out in the position she lands in and doesn't move much at all.

She has had two short naps this morning, one that I got to snooze during as well. The other was on my lap, so I just managed to get some work-work done with one hand since the laptop was next to me on the couch, so as not to disturb her. We're headed to have a consult with a possible new pediatrician today (thanks Julie!) in about 45 mins to meet her and discuss Braska's history and see if we feel comfortable with the match. The really good part is that her office is less than 1/4 mile from our apartment, super handy, so that would be a nice switch, for sure.

Thanks for all the tips on things to try with Braska for some comfort. I have had her on Tylenol regularly, but no Benadryl. Don't know why I didn't think of it. Oh wait, she's not been sick in 18 months...that might be why! We're getting some today, though.

OH! And the other news... she has 5...count them...5 teeth coming in right now!!! That could be the problem. I only knew of 2 til I did some forceful checking this morning. Ouch!

Heading south

It's big news time--We're moving to St. Louis. Well, actually St. Charles, just NW of St. Louis. It's where I lived before we got married 7 1/2 years ago and I moved to Champaign. It's where M got a new job, just finalized yesterday after a whirlwind process that only began late last week.

It's a bittersweet time, as we will miss Champaign a whole lot. This is the longest I've lived anywhere in my life, and that's something. It's been very good to us, and sometimes it's been a little cruel to us, but that's life in this world. All in all, I will think on my time here very fondly.

We are excited about being close to family, close to friends in that area, close to Braska's doctors, eliminating the trips down for appointments and such, trading a 3 hour drive for about 30 minutes to downtown. The new job is very good, and it seems like it will be an easy transition for M to slide right into. He starts in 2 weeks, so the chaos will be overwhelming for a while, but in the end, I really believe life will be much simpler and that's a BIG deal to me.

Big kudos to my husband for making this move. He is not a fan of change, to say the least, but he is putting his family--specifically Braska's best interest--first, and for that I'm immeasurably grateful.

More details will come as we know them. It's all so very fresh still. So far things have been miraculously smooth, so we know this is the right path to take.

(While I blabber on, here's how M announced it.)