31 for 21: Day off for exercises

Mommy reporting: Today we had an appointment with a PT who specializes in pelvic floor issues.  Typically that’s for older women who have bladder issues. But I took my almost-7-year-old to see her.

Maybe I should back up a bit…  I’ll try to summarize as simply as possible.

Braska is very verbal. We thought that since she could tell us “I need to go potty,” when she was 2 we would be knocking this potty training thing out with no problem.

And it has not gone that way. At all.

Braska will be 7 next month and, though she has success on the toilet sometimes, is no where near consistent.  We’ve tried scheduling, and every possible “sure-fire method” including those deemed as especially for kids with DS.

I’ve been convinced for a while that something wasn’t clicking, either with the right sensory messages getting to her brain or something medical.  But then she’d do ok for a day or so, and I’d think we were past it.

But as we approach her birthday and still spends what feels like zillions of $$ on pullups, it was time to go to the next step and have her evaluated.  So I took her to urology at SLCH last week.

Turns out, after ultrasound and different relaxing methods tried in the office, that Braska isn’t able to empty her bladder. This, in turn, means that she is not ever getting the sensation of the bladder filling and then learning that it means it’s time to go to the potty.

So when she does tell us, it means she’s going right then (which happens a lot) or there’s some other feeling she’s getting, which leads to frustration for all of us when we go in there and nothing happens.  She would often say adamantly, “I do NOT need to go, Mom!!” and then she would start to go before she stopped talking.  Several things like that which made us believe she didn’t get the right signals.

Bottom line at urology office: It’s a fixable problem, and apparently not a difficult one.  I kicked myself that we didn’t do it earlier, until the urologist said that she wouldn’t have been a candidate for this treatment before, she’s just now the right age. So I gave myself a break on the kicking…

We got orders for pelvic floor therapy with a specialized PT, and we also started her on a medication to help her empty. We have returned to miralax as well to be sure that all evacuation avenues are running as they should be, since the ultrasound showed that there was a lot hanging around in there too.  She’s “regular” so we thought that was all good, but apparently that wasn’t the whole story.

We also ordered a watch from Potty MD on recommendation from the dr, to help Braska get her own cues (vibrating watch every interval that we set it for) to remind her to go after we’ve made sure her body is doing it’s job.

So far, we’ve seen improvement, and I’m glad. 

So yesterday we went to the PT, and she gave us some exercises to do with B every night.  And we have a new position on the toilet as well…  against my previous advice to B, to sit with legs open more, and lean forward.  Oh, and the feet MUST be on a stool, not just hanging off.  That was new also to me.

So we’ll try the stuff, we’ll do the exercises, and I’ll keep praying it comes to be.  Dr says she could “be done by Christmas” and I laughed out loud.  Can’t imagine, but hey, bring it on!  I would seriously celebrate with a party if we could accomplish that!!

And since I couldn’t coordinate my schedule to work well with picking Kinlee up and helping with lunch at her school and still manage to get Braska back to her school for more than a couple hours, we called it a day off for Braska.  She got to relax in the morning before the appointment, go see her “other school” friends for lunch and recess again, and I’ll take that every time.  I just love watching those kids get so excited to see her each time she visits.  Priceless.

Mommy report: BIG news for a little girl

Kids eat. Kids drink. That’s what kids do. It’s built in. They just know how.

But mine doesn’t. Well, one of them does, but the other one, the older one, the way-tiny-for-her-age one doesn’t. (We will find out tomorrow if we’ve made our summer goal of 25 lbs! It’s going to be close…)

She’s been in feeding therapy for over 4 years. She’s made progress. Lots of it. But it’s VERY slow going. But this isn’t about that. (If you want more details about our feeding journey, please feel free to ask. I’m happy to address particular questions.)

We’ve been working on Braska’s oral liquid intake more diligently since the spring. The team initiated offering frequent drinks during her school day, between each activity, trying to increase her oral intake. She is up to about 3.5 to 4 oz a day (9am - Noon each morning). That’s a very VERY big improvement from a year ago! She only takes sips, like a mouthful at a time, (from a sippy cup with no valve) then she has to let go of the cup and swallow. This is done with assistance to hold the cup. Although she CAN hold it and take a drink, she is not at all motivated to do so on a regular basis. She will occasionally ask for a drink, take a couple of sips, and then be done. So we are still using her g-button for her fluids.

Yesterday, we had a bit of a discovery. I learned that Braska was keeping a little trick just for Miss A in class at school. She was taking continuous drinks. Like without letting go of the sippy cup, swallowing and then taking in more. This is HUGE! There is no way to describe what a big deal this was for me to hear.

So we tried it a little in feeding therapy yesterday, and I did it again last night a couple times. The trick, we were told, is to sing ABCs or some such song while holding the cup up for her. This is no surprise since singing is often a hit and a motivator for her. Last night she took about 5.5 oz orally, and I was thrilled!! It is A LOT of work for her to do, and it’s still a slow process, but she’s doing it!

Today, she took about 3 oz at school again, then when we got home, I offered her milk via cup several times. She was willing to tolerate me holding it up for her to try to swallow. No doubt, some does leak out when she struggles with it, but she is taking in far more than she’s losing. This afternoon, she took 6 oz from her cup in a matter of just about 10 minutes! I was SO excited!!!

BUT… that wasn’t all…

Tonight, she came and asked for milk. I took her in and set her on the counter in the kitchen, and we did several drinks. She didn’t lose hardly any, and I found a good rhythm of how long to push her and when to give her a break. She took ANOTHER 6 OUNCES!!! So from noon to about 9pm, she had 12 ounces orally!!!!!

I hesitate lately to even write about these things, because we have found that even people who have “feeding issues” under their belt are light years ahead of us in the journey. We’ve yet to meet anyone who has a situation quite like ours, with the limited fluid intake ability combined with the general non-interest in food (though that’s improving here too) AND the inability to chew at all at her age of almost 5. Zero. Zilch. We cheer lately when she closes her teeth on something, and it is good. But we’re a long way from handing her a french fry and watching her eat it.

So it’s ok if you can’t imagine what this means or truly empathize. You can still celebrate with us as we dance around in the kitchen and hoop and holler about the strides this girl is making.

This is HUGE!!

Stringing letters

My teachers at school are just the best. I like all of them so much. And it’s so much fun to see what new things we’re going to do everyday.

Miss J had a fun new thing for me to try a few weeks ago.  They are LETTERS! My favorite thing in the world!  Miss J helps me learn how to use my hands better and make them stronger, which is really hard for me.  But these fun new letters are so great I don’t even mind doing them for practice.

Then the coolest thing happened…. I got home and there were MORE letter beads, just like my ones at school!  It was like magic! Somebody special loves me a whole lot, I think!


KiKi plays with them too, but they are my special toy to practice with.  The first day we had them at home, Mommy let me play with them some after KiKi went to nap.    Here’s a little movie for you to see…  check out my skills!

Make an on-line slideshow at www.OneTrueMedia.com

Mommy note:   Neat things to note in this clip…
~~Fine motor is a VERY difficult thing for Braska.  She has only been in regular fine motor focused therapy for about a year, because prior to that most of her OT time was focused on feeding.  It is one of the areas that she shows the most delay. But we’re not bothered by that.  She’s doing great! She now has two OTs at school (the best two, in my opinion!), one for feeding and one for fine motor. (They are a GREAT team and overlap a lot in each area.)
~~ Suddenly every letter was her “fav’rit”. As in, “Oh, the letter U, my fav’rit!”
~~Most of the letters you will hear her say “makes the ___ sound.”  This is something we’re working on, mostly because Kinlee is obsessed with what everything starts with and what sound all the letters make.
~~You’ll notice phrases “I better go get it” and “I do it again” and others.

Mommy report: Skill surprises

I’m a horrible blogger lately.  No excuses except life. 

BUT--

There’s a couple things I just don’t want to forget that have happened lately relating to Braska’s development.

• We’re just beginning work on potty training.  I won’t go into great detail because that’s not really me in an area like this.  Suffice it to say that both girls are loving the process, and even though they’ve been totally fine to go for quite some time now, especially Braska, they’re picking up pretty quickly on the routine.  We’re not in “full training mode” or anything, but the preliminary work is going well.
• When I drop Braska off at school in the morning, she is to take her backpack to her cubby and then we go wash her hands and find her nametag.  The other morning she took her backpack (which is actually too big for her to wear…causes balance issues even though it’s a mini-backpack) and carried it right to her cubby.  Leaned over and patted her name on the bottom of it and said, “Braska’s cubby.”  Nice!  We know that she can recognize her name, but it’s been reinforced a couple times lately and with others besides just me, which is fun.
• She also can do her washing-hands and nametag-finding procedures by herself, too.  I generally help her enough that I don’t realize what all she can do herself.  I stepped back one day, not intentionally, but she didn’t wait for me and continued her morning routine just fine!  She stepped up to the big sink (on her stool), turned on the water, reached for the soap (automatic motion sensor kind…waited appropriately), didn’t quite get it scrubbed all around before it got washed off, but oh well.  She rinsed and turned the water off.  Then she stepped down (with assistance, steps are still very hard) and walked to the paper towel dispenser, pulled the rope 3 times like they’re supposed to (counting loudly “one! two! three!”), tore off the towel, dried her hands and walked to the trash and said, “Throw away!”  She marched her tiny self over to the table and found the correct nametag and said, “Braska’s nametag” and handed it to me to put on her back.  I told Julie that morning that I clearly have been holding her back by helping so much each morning.  She doesn’t need so much!  Amazing!
• Her teacher also told me that she can identify her two friends’ names from her own and will say each of them correctly when shown the names.  (On her “small class” days, two days a week, the class is just two little boys and Braska.)  The teacher held up one name and Braska proclaimed clearly, “Dominic!”  Then they showed the next, and she said, “Braska!”  And then the third one she studied for just a sec and said, “Colter!”  Apparently this has happened more than once and in various name order. I had no idea… 
• We’re preparing for her IEP meeting at the end of October.  Not too much to prep for this time, though. Our team is good, she’s met many goals, and I think we’re in good shape for this next year.
• She’s now good with her letters—upper AND lower case--thanks to Preschool Prep.  She can do her numbers 1-10 on sight and in order.  She can count to 20 consistently.  And she’s got at least 8 shapes down as well.  She’s doing well matching items of the same color, but she still struggles with naming colors appropriately.  She always says *a* color, but it’s not always the *right* color.
• And NO SICKNESS YET!!!  (For Braska, that is. Kinlee’s had it, but Braska’s not caught anything! Woo Hoo!)
• Her feeding is picking up a little, though it’s very slow. She’s just starting to agree to chew on something once or twice, and only if it’s in a pouch (so that pieces aren’t coming out into her mouth, which bothers her greatly).  But with a Ritz cracker, she will bite a piece, sweep the large pieces out of her mouth with her tongue, but she is handling the little pieces and crumbs pretty well. This is a HUGE improvement.
• Still no drinking of any real quantity. No straw success yet.  But she can raise an open cup to her mouth and sometimes get a little.  We only put a tiny bit in or she ends up soaked!  But she’s becoming more cooperative with the work process.  Our feeding therapist/OT is GRRRRRRREAT!

That’s all for now… I’m exhausted from a night of both girls being up numerous times last night.  Not sure what was up, but they really ganged up on me last night.  Hoping for better sleep tonight!!

Mommy report: Feeding demo/eval

You may have seen over here that we were recently scheduled to do a demo for a feeding therapy seminar that was held nearby.  Well that was today, and it was quite an experience.  A good experience, and yet one that leads to frustration…  let me explain.

Lori Overland, MS, CCC-SLP was the speaker, and the seminar was promoted by Leaps and Bounds, which is a therapy facility here.  We were to fill in where there was a need for a child with problems moving food around and maintaining liquids in the mouth.  What a good fit!  I was anxious that Braska might not cooperate in a group setting, but we went ahead and said we’d do it. 

We arrived a few minutes early, Braska got to meet Lori and play with her a bit while Lori did some visual eval and observed for a few specific things.  She tried a couple skills with her and shared some initial thoughts.  Immediately, she noted problems with Braska’s oral motor skill and strength.  This might not be a shocker to some of you, but the difference is that she pointed out things that we’ve not had anyone else mention before, or at least recently.  I had told her that we’d been led to believe that Braska’s issues were behavioral at this point, her refusal to eat being just that—refusing.  We haven’t worked on oral motor skills in over 18 months with any real intention, either in therapy or in general.  I always believed that since her speech is so good, and she can make all her sounds correctly, that her oral motor was not the biggest problem.  She is able to take food in and swallow it with no problem, so I just operated on the idea that she could eat if she wanted.  I know she can’t chew, she never has, so I figured we’d need specific work on that, but I wasn’t sure where to get it.

In less than 15 minutes of observing and working with Braska, she noted and explained numerous things that were “obvious” and pointed toward specific therapy needs.  I was relieved to know that there was something that could be done to help her, but I was amazed that we’ve not heard this from other therapists who worked with her quite a while.

We put Braska in her feeding chair, and Lori began to do the demonstration for 65 or so OTs and SLPs who were in attendance.  She tried a variety of things, like massage and vibration, to stimulate Braska’s mouth and face and prepare it for feeding.  Braska did pretty well overall, and she accepted this interaction better than I would have expected.  She didn’t like the alligator jiggler as much as she used to back in the day, but for the most part, she cooperated.  She did not want to bite things when asked, like the chewy tube, but that wasn’t really a surprise.

Lori tried to work on the inside of her mouth, on her tongue and cheeks, but Braska was not really having that.  Again, this isn’t new for her to avoid that type of thing.  I fed her some yogurt while the whole group watched and commented or asked questions.  Lori showed what things were indicating issues.  The position of her jaw, the way she led with her tongue instead of her lip, the way the top lip stayed up instead of coming down to meet the spoon properly.  She also noted things like how long it took Braska to swallow, I guess meaning that she had to work hard to get the food or liquid back there.  She also offered her some water in a honey bear, but Braska was not really interested in that so much.  She wouldn’t really open her mouth.

Braska is so finicky about who she will warm up to when it comes to working on feeding or around her mouth.  She is very quick to shut down around several therapists we’ve had, and it was amazing to me to see how well she did with Lori.  I really wish she didn’t live and practice in Connecticut!

We are proud of how Braska has done with her speech and language.  She does extremely well for a child her age with DS in the area of speech and language.  But Lori pointed out that, though she is speaking very well,  she could be even MORE clear and proper in her speech if we could work on these oral motor concerns.

Lori also felt that some of her feeding issues, at least currently, could be due to her ears and enlarged tonsils and adenoids(T&A).  I’ve heard from other parents who found that after their child had the T&A removed due to sleep apnea concerns their child also showed improvement in her feeding issues also.  Lori felt due to Braska’s noise respiration and apneic episodes that she’s having more frequently that she probably would show progress after the T&A were removed.  Braska is scheduled for a sleep study on 3/23 at which time the decision will be made about if they will take out her T&A at the same time that they put in her ear tubes.  The combination of these things will likely bring positive results to the feeding situation.  She also noted that it might be related to her tendency to sit with her head back, chin up, so frequently.  This could possibly be a position that allows for the most open airway.  We’ll see what the sleep study shows and go from there, but it’s encouraging to think that we might be on to something that could really make a difference.

As we left, I was happy that we’d found a direction to take to help Braska, and at the same time, I was really kind of mad that we’ve gone this long without this being stressed as important.  How have we had all these professionals in and out of our home and involved in her transition and evaluations and no one brought up that she needed focused oral motor therapy??  Now that we’re out of First Steps (EI), this will be all on us to take care of.  Insurance doesn’t cover it unless there is a medical diagnosis, and I don’t know that we’ll have a valid one right now.  So if we seek private therapy to correct the bad habits and learn the proper ones, it will all be out of pocket.  If that’s what we need to do, we will do it.  Money will not be the reason she doesn’t learn to eat properly.   I’m just frustrated that we’ve gone this long operating on flawed assumptions.

Where do we go from here?  Well, we start tomorrow by talking to the school and making some changes to ensure that the right people are working with her.  The good news is that there is someone who knows what to do and who Braska likes very well.  The bad news is that there is a policy in place that makes it hard for us to be able to have her work with Braska.  But I think we can work around it or run right through it.  If all else fails, we can see this person outside of school in her private practice, and that’s what we’ll do if we need to.  That’s where we’ll start…  it’s going to be a long road, but at least we now know where we’re headed.

Mommy report: IFSP meeting 12/08/08

It's that time again... time to look at what we've accomplished and where we're headed. Or I should say what BRASKA'S accomplished, since I'm not working all that hard, but she IS.

Let me back up for the sake of those who are newer to this fun of acronyms. IFSP is the individualized family service plan that is initially done with a kid enters the EI (Early Intervention) system, normally soon after birth for kids with special needs. Every 6 months, or when a change needs to be made sooner (OR when you change states), it is reviewed and updated. This goes on from birth to the 3rd birthday. In our experience, it has included the service coordinator--who keeps everything in line and organized regarding all our services/therapies needed, the various therapists and service providers, and the parent(s). We basically walk through the various therapy categories relating to the goals that we set 6 months ago, discussing how she has done, what goals she's met, what she needs to work on now, and then specifying what goals to set for this next period.

We moved to Missouri right after Braska was 18 months, so it works out nicely now that her meetings fall close to her birthday and half-birthday. I like things nice and neat like that.

So Monday afternoon was the big day. I don't really fear these meetings like some seem to, but it's not like it's fun either. I like our team, so it's not their fault. It's just sometimes hard to sit down and plot out what you want your kid to accomplish in the next 6 months. And I knew that some goals would not change from the last 6 months, in our case. Thanks to Little Miss Refuse-to-Eat. In attendance were Miss C (best service coordinator ever!), the OT, PT, and ST(By the way, that's occupational, physical, and speech therapy...all the letters...), and the nutritionist. Oh yeah, and I was there too. Of course, they always sit on the floor! Come on, people, why do I have sofas and why did I clear them of laundry and toys?!? Silly girls. They humored me and sat on the sofas. Aren't they nice?

Overall, it went well. I was pleased that everyone seemed to largely be on the same page as far as what we're looking at for the next few months, and they were very cool about the changes I wanted to make. I won't go into great detail. If you're interested in the goals, I can add more on them when I get the official copy of the updated IFSP in a few weeks. But I'll just give you an idea of what we're aiming for and what we changed or tweaked.

Kiddin' Around-- This is a new thing for us. We actually went on Monday morning and observed; well, actually we got to sit in for a bit of class. It's what I call pre-preschool, for kids that are 2 and receive some kind of EI services (if I understand it right), but there are a variety of issues. There were 5 kids there, though the teacher told me they would be getting 4 or 5 more in January when Braska starts. Her buddy, Jack, is one of those...and we're very excited that they're "starting school" together. One of the little girls in the class now has DS, and she's adorable, of course. Quite a live wire too. So there will be at least 3 of 10, and that seems cool to me. Side note: Since we live only blocks from Jack and he's just less than a month older than Braska, I'm hoping that they can go through school together. That would be so cool for a kid of mine, since I never went to the same school for more than 3 years. Anyway, KA is a weekly class, I think for a couple hours, and the teacher, Miss A, seems very nice. Since we'll be adding this weekly, and due to Kinlee's impending arrival, we decided to make some other adjustments to the schedule. Braska will start KA at the beginning of January, and from what we saw for the short while we were there on Monday, I think she's going to like it. She liked sitting in the circle in her chair and singing songs. She picked up on the Hooray! parts like a pro. And the romper room....it's like toddler heaven in the form of a colorful, cool playroom! I feel good about it fitting well into what we're working on with her now, and I like Miss A's approach to the few things we chatted about.

PT--This has been weekly, and we're keeping it that way. Braska has very low muscle tone, even for a kid with DS, so she has to work VERY hard at gross motor skills like crawling, standing, and taking steps. This is probably her most difficult element. She's just getting to where she will cruise a little at the couch, more at the bathtub. She loves to take steps when she's holding our hands, but she's not strong enough to hold it together to stand or step on her own. She'll get there, but we'll keep working hard in the meantime. She tries hard...it just takes so much more effort than it seems like it should for her. Braska likes her PT very much, so that helps alot.

ST--This has been weekly for about the last year or so. As many of you know, this is Braska's strength, in my opinion, and I think the pros would agree. She understands instructions and minds them, for the most part, and she is loving adding more verbal communication every day. Since we know that right now she is very self-motivated, we are going to back off to every other week. This will help me in easing the schedule, and we do not feel it will harm her at all at this point. We'll continue all the work we do at home on these things, which is quite a bit of reading, singing, and practicing words, sounds, and letters. And the ST sessions will focus on labeling (like pointing at a picture of milk when asked which is the milk) and working on two-word combinations. Miss J has some good ideas of what to do for our next steps, so I think Braska will continue to do well, even with the change in schedule.

OT--This has been weekly, and it has varied alot. Our OT in C-U was also kind of our PT for the first year of Braska's life and helped her through sitting, and transitioning to sitting, and working on crawling. Once we came here, our first OT was all about feeding, which was what our goals were for that area. When we changed to our current OT, the approach changed, and it has been more about interacting with food but not so much eating. Braska's never had much focus on fine motor in the "classic" sense, and she's not making any great strides in feeding, so I decided that I wanted to let go of the food element for now and go with more of the fine motor in a play-based environment. Her issues with feeding are less about sensory problems with food and more behavioral. Plainly, she's stubborn!! Well, that might only be 95% of it, but still. The cool thing with scheduling OT is that our OT is based in the same facility location as KA, so she is going to see her for sessions there during KA every other week. I think that's wonderful, and I think Braska will probably respond favorably to that change. It will ease up our schedule too. Big thanks to the OT for doing that!

Nutrition--We've been seeing the nutritionist every other week for a few months, and she works on introducing foods and feeding. Braska cooperates pretty well considering her history, but it's slow going for sure. We're going to keep it the same for now and continue this part of her feeding work. Honestly, we are just not worried about this. She will get it. It may take watching kids at school and her little sister eat and enjoy yummy food to get her to take an interest. And that's fine. We're definitely at a no-stress point with the feeding thing. It's exhausting to make it a big deal. It will come. I've no doubt. In the meantime, it takes all of 5 minutes to feed her and there's no mess. What's to complain about?!?

So there you have it....that's the important part of the meeting. It was interesting to look back over the IFSP from June and see how type A I was, and then to note how nonchalant I am about this stuff now. Life changes, priorities change, and the kid's needs change. We're alot more laid back now, and I like it. Miss C did make mention of the transition meeting in the spring. What?? Do we have to talk about that already?? Actually, I tease her, but I'm not so worried about it. I've got faith in this bunch to get us where we need to go, and I like that we have a few options about frequency for when she starts preschool next fall after the transition on her 3rd birthday. We'll deal with that later... For now, I feel good about the goals we came up with, the plan for the next few months, and Braska's progress.

Oh yeah, and I did let them know that we'd probably be off a few weeks in February when we're trying to figure out how to have 2 girls to deal with. I've gained a bit of wisdom since planning only a few days off when I had Braska! Ha...little did I know...

If you have questions about any of this, feel free to ask!

Fun parts of therapy

All the nice ladies who come work with me on stuff are fun. And they always do some fun stuff. But sometimes it's hard work, too. I try to do my best, but I get tired sometimes. But today I'm gonna show you some of the fun stuff we've been doing lately!

Miss C came on Wednesday and we had a good time playing while I was having some yummy yogurt. I've been taking more bites from her, and some from Mommy too. It's kind of messy, but Mommy's trying to get used to that. Here's a movie from when Miss C was here last time.

Then Miss Lori came to help me get stronger. I showed her how I was climbing and everything, and she was so happy! Then we did some practice standing on a rocking board and up from my new feeding chair. I love my chair alot, so I don't mind when we get to use it for practicing. (Mommy note: Some of these therapy videos may seem like there's alot of nothing, but for those of us in this world of therapies and milestones that we work so hard for, these are glimmers of hope and quite exciting hints at what's just around the corner.)

Photo and video editing at www.OneTrueMedia.com

I've been trying new ways to have fun climbing. This is the new way that I watched TV the other day. Mommy thought it looked silly, but I watched my whole show like this.


I like to turn around in my feeding chair, too. I haven't figured out how to get up in it on my own yet, but I'm trying.


Mommy even put another place up so I can climb even more. But then when I get up there, she takes me down so I don't fall. But I like to just lay like this and relax.

When I've been climbing a while, I get pretty tired.

Retropost: LOTS of therapy

Last week I got to meet all my new therapist friends with First Steps. Monday Miss C came. She's an OT and she's going to help me learn to eat better. I ate a little bit of beans from the Mexican place that we had left over, and I tried to take a little bit of water from my nosey cup.


After Miss C left, Mommy let me play in some gooey stuff, and it wasn't so bad. Usually I don't like to have that stuff on me, but it was ok this time. I even got a little in my mouth, but not much.



On Tuesday, we went early in the morning to see a guy who measured my feet in a whole bunch of ways for my new Sure Steps to help me stand and walk. While we waited and Mommy wrote on some papers, I played in the chair.



Tuesday after lunch, Miss Jocelyn came to see me. She's an ST and she's going to help me learn words and say words. She brought bubbles for us to play with, and I wanted to do them myself.


On Wednesday we went to see Miss Stephanie again. She helps me learn to eat too, but I got a little upset again because Mommy wasn't there. She waits out in the other room during my feeding time at that place. I don't like that so much, so next time Mommy's going in with me. I did eat some pudding though.

On Thursday, Miss Lori came to play with me. She's a PT and she's going to help me learn to walk and climb and stuff. We had a fun time, and she showed me how to climb up on the couch. I even stood up for a little while with just a little help from the couch. I think I'm gonna have fun with Miss Lori and all my new friends!!


We didn't go see Miss Brandi on Friday since it was a holiday. I'll tell you about my fun holiday weekend soon. I'm trying to catch up!!

Mommy report: 19 month update

It's hard to believe that Braska is coming up on 19 months in just a couple days. Just doesn't seem like that's possible. But what do I know... I've never done this before. I thought I'd kind of summarize where we are, partly for my use later, as the blog is my electronic baby book, and partly because there are a few of you out there who actually are occasionally interested in more info than just cute pics and giggles. Shocking, maybe.

Feeding: She's not. Period. That's the short version. The longer version is that she does sometimes accept food in small amounts and very particular situations, but it's very rare. She's still fed about 99.8% by her g-tube. She does accept drops of "milk" (Pediasure) off my finger, and sometimes dripped from a straw, while she's getting her feedings, but that's about the only consistent element of her oral feeds. We're working to get started with new OTs through First Steps and privately, and they'll focus on feeding. We've also been looking into a few intensive feeding programs around the country, but we've found that it's highly unlikely that our insurance will pay for any of that, so we're trying the outpatient OT direction first. Just as a reminder... she has no physical reason for not eating. She has no esophageal or swallowing issues. She just plain chooses not to. That kind of makes it more difficult overall. But we're working on it. And I also like to point out that her feeding issues are NOT at this point caused by her Down syndrome. Initially it was due to her heart issues which are related to the DS, but she's gone far beyond the "norm" for feeding issues with DS. I just don't want anyone to misunderstand and think that this is a "DS thing." Her oral motor skills are actually pretty good, with her speech and all... This is just a Braska thing.

GI/G-tube: Her button is doing well. The granulation that has threatened to become a bigger problem has retracted and is not an issue for now. It is a natural part of having a g-tube as the body keeps trying to get rid of that foreign object, but thankfully, we're in good shape for now.

Cardio/heart: She is peachy as far as her heart is concerned. We've had no problems, all good reports, and she has her next check-up with her cardiologist and possible echo in November. We have no reason to believe there will be anything but a thumbs up then.

Gross motor: She's just getting ready to start regular PT. She's showing interest in standing and movement, though she is pretty firm about doing it her way. She is not crawling at this point, and she's not yet able to pull herself to a stand. She stands when propped into that position and when she can hold onto something. She can scoot around on her rear end some, but she generally rolls to where she wants to be and then sits up to get into things. She'll be getting her Sure Steps in the next month or so, and that will help with proper form for standing and learning to walk. One PT that we saw recently for an eval stated that she had "the lowest tone" she had ever seen. I said that's fine, but "can you fix it??" (This refers to low muscle tone or hypotonia, a common physical characteristic of DS, but not exclusive to kids with DS.) We know we can get her there, she's just gonna have to work hard.

Speech: She does really well with her communication, though she still has delays on the typical measurements. She can say a few words verbally: up, mama, daddy, fish. (In case you missed it, see yesterday's post.) There are a few more that she's doing sometimes, but we're not yet giving her full credit yet: badger (weird, I know...see here), teeth, and yes. She can sign several, at least some version of the sign, but it's a gesture which means the same thing every time, and she can use them in context to communicate, not just mimicking: yes, no, hi, bye, milk, please, clap. On the receptive language side (things she understands but cannot express yet) she has a bunch. Our faves to have her do for "tricks" are to give kisses and hugs, give five, put things in or out of something, splash, kick, wiggle, play music, and show her teeth. She also can lay down or stand up on command (standing with hands to grab onto). We're very pleased with how well she's doing in this. We're hoping to start with our new speech therapist in the next couple weeks.

Weight/height: She's now 18 lbs 4 oz officially. She's 28.5 inches long. She's definitely small, but she's not all bones, never fear. But it is funny that she doesn't have that little round baby belly.

Teeth: She got her bottom front two first, then her top front two, and now she's got 6 coming in at the same time. And they take SO long to come in! She's working on the two on either side of the upper front two and the bottom front two, and also two molars on the top. She's getting them in a "typical" order, and so far, no super sharp ones, so that's nice.

Overall health: She still has never had a sinus infection, ear infection, or other common sickness. She may have had a cold once, but we're not sure if it was that or her teething. But I think it's great that she's never had to have antibiotics or anything prescribed for any reason except her granulation on the button.

So that's about it I think. If you ever have questions about anything, please feel free to email me. My email is always in my profile (over to the right under Contributors). I can't tell you how much it means that we have so many people who care about our little princess. Thanks for reading her stories and watching her videos and enjoying all her cuteness!

Just for those of you who prefer pics to details and jabber about therapy, here's a few more from the tiny pool days last week.
Now how do I get it back in here?

Sorry, they just don't come any cuter than that.

Mommy report: New record

During feeding therapy today, Braska decided to try a few new things, and show off a few others. She ended up taking almost 7 oz total (finishing 1 partial jar, downing a whole one, and starting a 3rd), which is a record, for sure. She showed off for Miss Louis with some raspberries, mouth full of food, of course, and with some very passionate short bursts of some apparently important information that we couldn't quite decipher.

Here's some visual evidence of the other recent mealtime fun.



A common theme during feeding therapy sessions has been Louise telling me that I have to let Braska make a mess, which I'm not good at doing. I tend to want to keep hands clean and all mess on the bib only. Today, I succeeded in letting her go at it. And we ended up covered in mush...both of us.

Mommy report: Overall update

I thought it might be time to kind of bring everyone up to speed on where we're at, in adult terms. :o) This might be a little long, but so many of you are so kind to ask about what's up that I thought I'd just put it all out there at once.

General health--Braska is doing well, hasn't been sick yet (except for rotavirus, of course) with any kind of cold or ear issue or anything, and for that I am SO very thankful. I think that's quite an achievement for 9 months, myself. Her heart seems to be pumping just fine after the repair, which is now 6 months ago. Seems like yesterday and 3 years ago all at the same time. Her thyroid is functioning properly, and her other labs have been good. EXCEPT for the last two draws which have shown increasingly elevated hemoglobin. (Very minimally elevated, though.) No one seems to be too concerned about it, but they are keeping any eye on it, I guess. We'll have it checked in 3 months at her one-year visits if not before. But we hope it's nothing. The only thing mentioned is that it might be an oxygen issue of some kind, which sounds like it needs to be checked out, but no one seems in a hurry at all and they all say it's nothing to worry about. So I won't, for now.

Therapies: occupational and developmental--These are going well. She continues to cooperate most of the time and is getting stronger, but it's all about when she decides she's going to do the next little thing. When she wants to sit, she will, and until then, there's not much we can do to entice her. The therapists have both noted that we have yet to find a toy that motivates her to do anything really. The only thing she reacts to every time is an open hand coming toward her face slowly. That's about the only time she will reach high with both hands and grasp quickly and firmly. She takes it directly to her mouth and gums like crazy. Any other toy may garner a gaze, and sometimes a lackluster reach, but that's about it. She's a picky one, that's for sure. She has become much more generally energetic in the last week or so, probably due to an increase in her amount of milk per day. Since she doesn't really indicate hunger at all, it's hard to know how much she needs/wants. Which brings us to the next category...

Feeding--Inconsistent is the key word. She will do several things, but none of them with any consistency. She will eat solids pretty well, but usually only once a day, and usually that is in the evening. She eats green beans with rice, sweet potatoes, squash, and beef with applesauce, each in little bits, and if she's in the mood that particular day. But she'll eat bananas and banana pudding about any day, as well as applesauce (not baby, big people applesauce), peaches occasionally, and pears rarely. She definitely likes her sweet things. She still refuses to suck on a bottle, but she will sometimes chew on it and swallow what she gets from that. She will take drinks from a particular sippy cup if they are given in small doses, but only a few at any sitting. Our big challenge is definitely to get her to take fluids, so most of her feedings are still done by NG. She's getting about 24 oz a day in 4 feedings, which we just went to about a week ago. Like I said above, she has responded to the increase in amazing ways with more playfulness, more general movement, wiggling, etc. She's always been happy and content, but she is now a bit more animated and less likely to sit still on a lap, which is good in the big picture, I guess. Louise was very happy with her first time to watch Braska eat yesterday, and she is optimistic that we'll be able to make strides toward being independent of the tubes, but probably not soon enough to avoid the G-tube. So about that...

G-tube--I talked to the GI dr's office again this morning and they're determining if we need to have any testing before we get on the schedule for the PEG process. (For those of you who are less "internet-familiar" you can click on PEG process to go to a description of the whole deal.) I would guess that we're looking at possibly the week of the 10th or the 17th of September to get it done, unless there are more things they want to check out first. I should get a call back later this morning about that. I'm resigned to the fact that it needs to be done, so it's ok. We'll handle it like everything else, learning as we go. Mostly I'm praying for no complications to what should be fairly "routine."

It's amazing to look back and see how far we've come. I find it hard to even remember how life used to be, and that might be a good thing in some ways. For now, we're moving forward and smiling as we go. She's a real peach of a kiddo, I must say, and I'm thankful for her everyday.

Thanks for taking the time to come by so often and keep up with us. It does so much good to my spirit to know there are so many friends out there who care enough to check in. And it's even better when we get to read your comments!!!

Mommy report: OT eval

Robin, the OT, was here today to do an initial eval on Nebraska. Overall, she said she was pleased with her progress considering her surgery at 3 months and recent illness. She did well with several of the little test elements, and there were deficits in several, which we expected. Her head/neck strength will be a primary goal and point of beginning for therapy in the next few weeks, on a weekly basis. She did give us some things to focus on when just doing normal stuff at home, to help her in between visits from the therapists.

So very soon we'll be seeing Judy, the developmental therapist, Robin, the occupational therapist (which I think is kind of funny in title, as Braska isn't all that into an occupation at this point), and Luann, the speech therapist/feeding specialist.