31 for 21: 2 meals 1 day. Very good.

Braska took two of her meals today orally. 

What’s up? You’re just sitting there looking at the screen like nothing’s happening here.  Let’s try this again…

Ahem.

Braska took two of her meals today orally!  Do you get that??

She consumed, by spoon and via her mouth, enough food to count for a meal. Twice. In one day.

This is HUGE!

Has she done it before? Yes.
Can she do it regularly? Probably. If Mommy will get in gear and do it right.
Is this a normal occurrence? Nope. Not at all.

Braska CAN eat enough calories to be “a meal” if given the right combination of circumstances.  The elements are not often aligned to make that happen. Liquids are another story, but she did take almost an ounce over about 25 minutes of feeding time and 12 to 15 sips.

The news is big. But it’s really largely because Mommy set aside made the time to do it.  That’s big.

I rely on the tube because it’s no hassle, no mess, super fast, and it gets the job done.  Those are all things I like in just about every part of life.  But I know that we have to make room in the schedule to help her get used to taking in real (though pureed) food and drink.  A meal in this scenario takes about 40 to 50 minutes total.  That’s a lot of time to set aside and be available to sit and wait. Assist here and there.  Feed manually for a while.  Allow breaks to happen. And go again when she gives the cue. 

I have to reign in my disciplinarian self when she pushes the food away. I have to give her time after she refuses to take a drink for the 8th time.  I have to try NOT to speak too firmly to her when she swings at the spoon as it comes. I’m learning from the pros that this isn’t the time for confrontation.  I need to make it a good experience.  So much thought. Just to eat. (And we’re not even CHEWING yet!)

All that to consume about 6 ounces of pureed food. Tonight it was pork roast with veggies. She really likes that one.  Followed with a chaser of yogurt, always a hit.

I need to get this. I need to make this a priority. I need to slow down, even more than the “slow down” I’ve done in the past few weeks schedule-wise, and really give her the opportunity to do it.

But goodness… If you ever need to be shown just how impatient you are, and I am in no way delusional about my impatience, just try to feed a severely averse child who could NOT care less about food.

We’ll get there.  But I may not make it with my sanity intact.  Lord willing, I can hang on!

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!!

Fighting for feeding

Ok, so it’s not so much a “fight” but it has felt like it a little in the last couple days.  If you didn’t see the post on Braska’s blog about yesterday’s feeding demo (and if you want things to make sense) you might want to start there first.

Today the goal was to talk to the contact at the school and Sue, a superb OTR/L with excellent feeding skills and experience.  She was our OT for about 3 months at the end of the summer, right before Braska’s transition out of EI.  She is wonderful, as a person, with Braska, and at what she knows as a professional.  I wanted Braska to stay with her when starting school, since Sue works there as well as privately, but the school is set up so that each classroom has an OT who works with the kids in that room.  Since Braska wasn’t in one of Sue’s rooms, we went with the OT in the room.

 Let’s just say that has not worked out the best.

There’s a lot that could be said about that, but I’ll leave most of it alone except to mention that this is actually great timing.  I was only becoming aware of some concerns within the last couple weeks, so a change now is great.

Sue didn’t work with Braska on feeding when she was our OT. This was at our request.  At that point we were still under the impression that Braska’s issues were behavioral, for the most part, and so we weren’t doing focused feeding therapy at that point, trying not to “push her.”  Oh what I wish we’d known then…

Anyway, the good news is, for right now it seems we will be able to make the changes needed to get Braska back with Sue and working specifically on feeding.  We’ll be trying to make this work in Braska’s school schedule on the days Sue is there.  But if that doesn’t work, we’ll possibly go early or something like that to work on the oral motor specifically.  And if all else fails, we will see Sue on a private basis outside of school.  In fact, depending on how receptive Braska is and how it goes initially, we may do both if we can handle it financially. 

We have a lot of lost ground to make up.  But I was so encouraged by the fact that Sue wants to work with her and is sure that it’s not “too late.”  Her muscles can be trained and what behavioral habits have been learned are not too deep to relearn correctly.

We will also be developing a plan to includes Braska’s ST, who we really like a lot.  Ann works so well with Braska and Braska responds well to her. This way they will be coming at the oral motor elements from different directions but working on much the same skills, used for different things.

I’m hopeful that things will be righted soon, and I’m glad to know that we do have good people available.  Of course, I’m still frustrated that we were on a wrong path for what seems like such an important part of her young life, but I have to let that go. 

If I could hang out in NICUs and tell parents in our position NOT to take kids off the bottle completely, even if it just means letting them take 5 or 10 cc with the bottle before tube feeding… oh how I wish we’d have had someone to clue us in…  what a different picture we’d have now.  But it doesn’t work that way.  I can only help those who come behind us, and every child is different, but it’s worth sharing our experience so people can make a more informed decision.

Hopefully, over the next few weeks we’ll see some exciting things.  I acknowledged to Sue that we are willing to take the risk of regression in oral intake to get things done right and help Braska to get where she needs to be in the end. In other words, we may have to take some steps back before taking steps forward. We’ve always been hesitant to have specific feeding therapies because Braska would then refuse to eat for days or weeks at a time after something new was presented in therapy.  But now, I fully believe that we need to back up and do this right.  Teach her the right way to use her mouth and tongue and all the parts around them.  We need to help her eat properly and it won’t be such a difficult thing for her.  THEN maybe she will want to eat as it gets less difficult because her oral motor skills are better.  So if we must rely on the G-tube solely for a while, so be it.  She’ll get her nutrition and we’ll start the journey to being rid of the tube eventually. 

A journey I thought we started long ago, but we were following the wrong map.

***As I was proofing this, the school called.  They are willing to check out the options, create a plan, and help us make some changes to get Braska the therapy she needs.  The ball is rolling…I’m so glad for that. 

****Oh my goodness.  As soon as I posted this, the school called back.  They already have discussed with appropriate people and we have a plan in place.  Woo Hoo!!!  Sue will be handling the oral motor part of Braska’s OT (30 mins a week) and the classroom OT will be handling the fine motor part (also 30 mins a week).  I’m pleased with this and I hope that it works out as well as I expect it to! Yay! 

Thank you, God, for presenting and then solving a problem I wasn’t even aware of…and in short order.  Awesome!

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.

Braska: Me ‘n Jack: Testing the playroom

Today Jack is at my house playing while his Mommy and Daddy go to a meeting that’s important.  I’ll tell you some about it soon… it’s great!

So while Jack’s here, we are playing in my new playroom, Mommy says testing it out to see if it’s fun for all three of us.
 

We have been having a good time so far, playing with everything, doing some dancing, and laughing and just being silly.  Then we decided we’d take a break and get a snack while KiKi went to nap early.  She was kind of grouchy and tired, so Mommy let her to go sleep.

Do you see something neat in that picture?  I mean, Jack’s always the coolest thing, but look at me.  I’m holding my spoon for “scoop and bite” which is what I’ve been working on so I don’t need Mommy’s help so much.  I like to do it, but sometimes I can’t quite get it in the right place.  But yogurt is my favorite, so I try really hard!

I gotta go play more now.  Back to the playroom!

Mommy report: Update, part 1--Feeding

Dishes, showering, laundry—all on hold.  I just can’t keep putting off an update on this girl or I’ll forget all this before I can get it down.  Since this is my main record of Braska’s goings on, it’s important at this stage.

We’ll start with feeding, and there will be at least a few other categories to follow soon.

To refresh for anyone who might be a newer friend here on the blog, Braska doesn’t eat orally, not regularly, never has.  She has a g-tube/button, and she gets all her nutrition via Pediasure through her button.  She has no medical issue that causes this problem. This is not a “Down syndrome thing.” She chooses not to eat.  She does not show hunger or thirst, and she couldn’t care less if she eats or not. This is a behavioral issue.  Even with our ability to feed her without her help, she still has always been underweight.  At 34 months, she is just under 22 lbs.  Because her weight is low, we cannot do more stringent caloric challenges (holding back on nutrition/food/milk, causing her to become more physically hungry and want food) because she’s not got any weight she can afford to lose in that process.

The day Kinlee was born, Braska ate some pudding, if I remember correctly.  But she ate that day, and the following days.  It was very small amounts at first, a tablespoon or two on a good day.  Sometimes only a spoonful, but we offered it and required that she eat something a couple times a day.  After about a month, she was eating fairly consistently at the 2-3 tablespoon mark, usually twice a day.  We started up again with her nutritionist/feeding specialist, and I could tell immediately that it was not going to be a good thing.

You see, the smallest thing can change her course when it comes to feeding.  A strange person present during feeding, an unpleasant experience because she’s too tired.  A little choking sensation, though recovered quickly, can ruin her for days.  When the nutritionist came that day, I had a bad feeling.  She’s not a bad person, but I just had a gut feeling it was too soon for Braska.  And I was right, unfortunately.

She refused to eat for her, and she then refused to eat for me for the following 3 weeks.  Yep, it can go just like that.  She decides she won’t eat, and that’s it.  There’s no “oh, she’ll get hungry and eat” thing.  She can go days without food or drink and still not ask for it.  She’s shown that by ending up in the hospital when she was younger.  Super stubborn is her thing.

With alot of work, we got her back to eating a little, and she has continued to progress slowly.  We cut out her feeding time with the nutritionist, and made those visits only about making sure she was getting enough and doing a weight check.  This has gone well.

Most recently, she’s been surprising us with how much she is accepting.  Generally, her habit has been to just taste things.  She would accept as much liquid (like a sauce or something) that would remain on a fork.  Not much.  But taking quantities of food has never been something she’d do.  She also has always been a high-flavor girl, preferring tastes that are very spicy, highly seasoned.  Nothing as bland as baby foods or unseasoned vegetables. 

But lately she has been taking baby foods, straight from the jar, sometimes with added fat and calories from various sources.  And she has taken an entire 4 oz jar at a sitting on several occasions in the last couple of weeks.  That’s a BIG deal around here! She is also becoming much more willing to take whatever is offered.  She hasn’t really rejected a food in a while.  She’s also taking sips from a sippy cup with no no-spill valve in it. Very small sips, but it’s something. No straw, no open cup, and of course, no bottle.

She still doesn’t ask for food. She will not remind us that it’s time to eat if we’re busy and don’t offer solid food. But she’s accepting it when offered with greater consistency. Sometimes she will still get obstinate and not want to open her mouth, but she can be coerced with minimal work.  That’s great progress for her. 

Textures and self feeding are still a long way off.  She only takes pureed foods, yogurt, pudding, with the most textured accepted food being baby oat cereal with Pediasure or juice.  She takes it a tad thicker than Kinlee does, but still not that challenging.  For now, we’ll continue to work on quantity.  Soon we’ll try to address textures, attempting to chew (which she will NOT do at all), and self feeding.

Feeding issues are so frustrating.  And I’ve yet to find any other kid who is as old as Braska, has no medical issues related to feeding/digestion, and still refuses as thoroughly as she does. It’s not like she only eats 5 things, or she only wants PB&J with crackers for breakfast, or she won’t eat her vegetables at dinner, or even that she’ll only take a bottle. It’s lonely in this kind of position, and there’s not alot of info out there, but that makes our progress even sweeter.

We know very well that she could decide tomorrow not to eat for days, weeks, or months.  We always rejoice with a bit of a guarded sense.  But I’m glad she’s come this far.  We’re working very hard to protect the experiences so that we don’t suffer any setbacks. I’m proud of her that she’s come to this point.

Stay tuned for update, part 2—gross motor.

Braska: Wanna know how big?

Mommy likes me to keep track of how big I’m getting, so she wanted me to put it on here so she won’t forget.

Yesterday we went to a place and they checked to see if I had gotten bigger.  When they put me in the little chair that tells them if I’m eating good, it told them I was 22 lbs.  That’s really big!! I think that’s bigger than I’ve ever been before!  And then they made me lay down on this big hard thing to see how far down my feet went.  I did not like it at ALL!  But when they let me get up, they said I was 33 1/2 inches.  I think that’s good, but I’m not sure.

Anyway, I’m with Daddy and KiKi at Grandma C’s today so that Mommy can have some quiet time at home.  We’ve been kind of hard on her this week, and she was asking us to start being good girls again…especially KiKi.  She was really bad.  I’m the good girl, don’t worry.

Like no big deal

I just sat in the kitchen with Braska in her booster chair, tray and bib in place. She ate an entire pudding cup, half chocolate (which she typically hates, but took willingly) and half butterscotch (which she apparently LOVES). She sat there, opened her mouth, even grabbed the spoon several times and fed herself. Then she finished, took almost an ounce from her cut-out cup of warm water (not on purpose, I just didn't notice it was warm--but she loved it) and then she was "aw dunnnn".

In our world, we may just throw a big party for this kind of thing.

Braska: Long sunday dinner

Sunday we went to Papaw's church so the nice people there could see Kinlee. We dressed up nice since it was a special day. First I had a bath and put on my robe. I have had it since I was a tiny baby and I think I'm gonna let Kinlee have it soon. (Mommy note: This robe is 0-9 months!)

Kinlee wore a cute Pooh dress and fancy shoes too.

I wore a new outfit from my friend Miss Trish.


After church, we went to a place to eat. But we just sat on some seats by the door for a looooooong time with no food. It was almost all of us from Daddy's family, and all of us grandkids were there. We were pretty good even though we waited a long time. Finally we got to sit at a table. My uncles and Daddy helped me color my paper.


I ate some of Mommy's food because she had some mashed taters and gravy. It was good, so I ate a bunch of little bites. Everyone said, "Yay Braska!" That's my favorite part.

Feed them and they will grow

Ok, so this might be so not exciting to most people on the planet, but my kids are gaining weight. In our house, that's SOMETHING!

When the girls were weighed on Friday, Kinlee was 9 lb 3 oz. Less than 5 weeks old, born at 7 lb 6 oz. What?!? How does that happen? Maybe that's normal to some people, but not for us. I weighed her THREE times just to be sure it was right. I can't believe she's gaining that fast. Braska was at least 2 months, closer to 3 when she got there. She was 11 lbs at her surgery at 3 months after us stuffing her with tube feeds. Then she was back to 10 lbs at 4 months, 15 lbs at 12 months.Which brings us to the next bit of info....

Braska was 22 lb 1 oz!!!!! That's crazy! This from the girl who gained only 4 lbs between her first and second birthdays. 3 months ago she was just shy of 20 lbs, now she's over 22?

I suppose it's about the intake...go figure. Kinlee is eating like a champ, though I didn't think nearly enough to gain that much. And Braska has still been eating her few tablespoons of food a couple times a day, in addition, of course, to her regular tube feeds of Pediasure. But her few tablespoons add up to some decent calories, sometimes 30% more calories in a day, so it's making a difference!

Crazy. Just amazing. But we'll take it.

Braska: Back from Grammy's

I had a good time at Grammy's. I played with Auntie Joy alot, and I practiced my eating with Grammy. I've been eating some little bits every day that Grammy was at our house and when I was at her house. That's right... eating! I'm still only taking a little bit, but it's pretty yummy and Grammy and Mommy say I'm doing a good job!

Here's some pictures from Grammy's house when she made me some carrots. They were good!

(Mommy note: She is really doing well, and we're cautiously optimistic. If you've followed Miss Stubborn for a while, you know that she tends to do things that are encouraging, when it comes to food, and then she just quits it all. So we usually are a bit skeptical that new things like this will last, but she's been consistent now for close to three weeks. AND she's doing it for me, which is a good sign. She generally eats well in these phases for my mom and occasionally a therapist, but never for me. At this point, she's eating two to three times a day, about 3 tablespoons of food each time, either applesauce, yogurt, or pudding. I'm glad, and I'm doing my best in this new period of busyness and sleeplessness to keep up with very regular feedings. So far so good... we'll see how it goes as we move forward. We're celebrating this progress, though. I'm thrilled that she's taken these steps!)

On Sunday, after church, Grammy and Papa took me to see Mommy and Daddy and Kinlee. I was very glad to see Daddy especially! We had some lunch and then we came home.


Well, we didn't go home right away. First, we went to meet Baby Xander, my new cousin. He's just one week younger than Kinlee. He's pretty cute!


Then we went home because we were having friends come over. Oh, I forgot to tell you about my cute hair. Grammy put little braids in my hair, and Mommy and Daddy thought they were really great when they saw me at the restaurant! They're kind of messy here, but we'll do them again soon and take better pictures.

Our friends Amber and Katelyn came over with their parents to meet Kinlee and they brought us dinner, too! The girls are so funny. They were dancing and we played alot!

Princess Eliana

We have about 40+ blogs that we keep up with for kids and families with DS. I often say that the blogs have been our lifeline, and I have most definitely learned more from them than any medical or "official" site. So many of you have become like "real" friends, and it feels like we just never get to really hang out! I appreciate all the emails and behind the blog stuff that we share with so many of you... that makes my days brighter every single time.

I could list all the adorable kids who make me smile and it could go for days... but today I want to pick out one little gem. Miss Eliana is a princess who has traveled much the same road as Braska, and her mom Leslie is a marvelous example of a great mother and a kind and caring friend, it's clear. Eliana was born about a month after Braska, she had similar heart issues, she had a G-tube for a while, but she has blossomed into just an absolute doll who is wowing lots of people and especially her family who adores her.

Yesterday, Leslie posted a couple of pics, both are beautiful, but one of which just stole my heart. It captures what I imagine is Eliana's wonderful personality and obvious spunk. Even though I've never had the pleasure of meeting them in person, I really am thankful for the influence they've been on me in the logistics of the things we've been through and the encouragement it is to watch Eliana do so well.

Take a minute and go see Princess Eliana. She is one very special gift from God. And please give your little ones a hug for us too... we wouldn't be nearly as sane without all of you blogging buddies!!

Pink and Minty

I love peppermint ice cream. It's only around for the holiday season usually, so I enjoy when it shows up in the stores. Tonight I snagged some and learned a little something.

Braska loves it!

That's my girl. She ate more than 1/4 cup of the stuff, and in our world of no food orally, that's HUGE!!!! Now understand that she has these moments. She does something then won't repeat it afterwards, so we're cautious, but we're still excited. She just kept asking for more, so I kept giving it to her. We don't care much what she eats if she will eat by mouth. For now, anything is a win.

Like I say often... celebrate the little things!!

Braska: Buddies and braids

Last week on Monday, Daddy came home from work with a present for me! A coloring book and colors! We practiced coloring for a while before he had to go back for a special work meeting.



Since Daddy had a meeting, Mommy and I went to eat dinner with Jack and his family and some of his friends. It was fun! Jack thought there was alot of talking, I think.



I found a new thing I like alot... Mommy says it's called mashed taters and country gravy. I ate alot of bites of it!


Mommy did a new trick with my hair last week, too. She said it was french or something.


"What do you think?"


"Huh? Really? Gee, thanks!"

We went to see the guy that gave me my Steps. He was checking to see if they still fit ok. And they do, for a couple more months, he said. I waited for him like a big girl, but I kept looking to see if he was coming soon.


When Daddy got home that night, I told him and KiKi all about it.

On Thursday night, Grammy, Papa, Auntie Julia, and Uncle Ryan came by. I sat with Auntie Ju and watched some TV.