The Purpose of this Blog

The goal of this blog is to provide education and bring about higher awareness about Down syndrome. It is to share that life with Down syndrome (DS) is not scary, horrible, or to be feared.

My experience comes from raising my daughter, Nebraska Larae (Braska), born November 2006 with Down syndrome.
The posts on this blog are related in some way to life with DS or disability, and they are reposted here from my other family blogs. There are links to those blogs in the margin on the right side of this blog if you would like to visit them directly.

Thank you for coming by.

Wednesday, March 31, 2010

Not a spring chicken after all

This was mid morning.  She was pretty chill and quiet this morning, but smiles were there.  (Note the shirt…spring chicken…funny.  Thanks Amy and/or Jen!)

This is about 5:30p. 

She stayed there for a while, then sat up, scooted over a little, and…

Something’s not right.  She has a fever of 100.5, which is quite significant for her generally cool normal temp. 

My issue: She is on day 4 of her Omnicef, Zyrtec, Singulair, and Nasonex combo.  She has been very obstinate and difficult at school this week—though she was a little better today, according to report.  She’s only going half-days (90 mins) at school this week, on advice from the doc to give her more rest and time to strengthen from all this illness. Her congestion is better, though she’s still pretty snotty.  It’s been nice to have her sleeping better, breathing quietly while sleeping, and I’m pleased with that improvement.  So until the fever today, I was a fan of the new regimen.  And I have no hard evidence that any medicine is causing her personality changes.  But I don’t like unknowns.

Could it be that she’s just 3, as far as her behavior?  Sure.  But combined with the other issues, who knows. 

Oh, and she has not wanted to walk tonight, while she’s had her fever.  She won’t hardly sit up, and will NOT stand or walk.  She’s been loving walking, since she’s progressed so well, and has been spending more time on her feet.  Then yesterday at school, and before school even, she wasn’t wanting to walk.  She did do ok at school, bearing weight some, but she was throwing things and yelling her protests, not cooperating, all very unlike her.

Once again, no answers, but something in my gut feels like something’s just not right.  I’m about ready to have some blood work run, just to make sure nothing odd shows up.  I called the dr tonight that we saw on Saturday, so we’ll see if she calls me back. I told them it wasn’t urgent, so it might be tomorrow.  Hopefully she’ll perk up soon.

Thoughts or ideas anyone?

Tuesday, March 23, 2010

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!


Saturday, March 13, 2010

21.3.10: Meet the precious Zoe

In honor of World Down Syndrome Day on March 21, Reece’s Rainbow has a special project this month to help sponsor children for adoption. 
I have chosen little Zoe as my special girl, to spread the news and put her cute little face out there, hoping that someone might want to scoop her up and bring her home. 
zoe-rr Her birthday is just 6 days before Braska’s.   She has just 8 months left in her “baby house” before she will be sent to a mental institution.  Rarely do small children live more than a year in that environment.  I just can’t bear to consider my Braska going to a place where no one would interact with her and she would be left to fend for herself, IF she’s not restrained to her bed.

How I wish I could go and get her, along with several other little ones, or at the very least find families to give them homes.  Yet all that is open for me right now is to tell everyone about the need, and pray that people will open their hearts for little Zoe.  She’s healthy!  She’s walking and eating and active and will blend so well with a new family!

From the Reece’s Rainbow site:
Beautiful blonde hair and a glowing personality. She is healthy, with no heart condition. She is fully functional...walking, active, many words, able to eat and dress with minimal assistance, and an orphanage favorite.

She is facing the institution, please consider adopting Zoe!

More photos available, please inquire.

We have many children waiting in this same orphanage who can be adopted together. Children in this orphanage are not held much past the age of 4, so we need a family quickly.

I’m asking 3 things of you all, every reader…
1. Prayerfully consider if Zoe might be waiting for YOU specifically.  Do you have a place in your family for her?  You may not feel you have much to offer, but is a family not better than an institution for a 4-year-old??

2. Can you give just $21 to Zoe’s fund?  If you are unable to adopt her yourself, can you share this minimal amount with the family who WILL come for her?  There are so many families who desperately want to adopt but simply do not have the finances to do so.  Can you help THEM if you’re not in a position to bring her to your home? You’ll see a Chip-In box in the right margin under Zoe’s button. Donations are tax deductible.

3. Will you post Zoe’s button on your blog or Facebook page, asking others these same questions?  The code for the button is below and in the right margin.Photobucket

Friday, March 12, 2010

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!

Tuesday, March 9, 2010

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.

Sunday, March 7, 2010

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.)

Friday, March 5, 2010

Exciting news (almost) in our family

Jack’s going to have a little sister!!! Woo hoo!  Julie and Allan have committed to and started the process of adopting little Dasha from Eastern Europe through Reece’s Rainbow!  Her name will be Dashlyn Belle, which I think is SO neat.  This has been on Julie’s heart for some time, and it is now so very neat to see them finally able to move forward!

Grab This Button

Be sure to visit their adoption blog here (put it in your reader, Reader users), grab the button above to add to your blog or your Facebook page, and spread the word that another little one has a Mommy and Daddy on their way to get her soon!  Of course, if you’d like to donate to the costs of bringing her home, they’d more than appreciate that as well.

I’m kind of living my adoption dreams vicariously through my friends, and this family is practically family to us, so I’m really happy for them and can’t wait to get to see this little doll smile and play with my girls as they all gang up on Jack.  She’ll be Braska’s new best girlfriend. Can’t wait!

Congrats Julie and the rest of the fam…and many prayers for a smooth process!

Braska: Jack’s gettin’ a sister!!!

Guess what Mommy told me???  Jack’s gonna get a new sister!  She’s already born, so she’s not in Miss Julie’s tummy, but she lives far away, so they have to go get her and bring her home. 

Grab This Button

We are really happy about this because I’m gonna get a new friend to see ALL the time, just like when I get to see Jack ALL the time!  We’re going to have SO much fun!  Me and KiKi and Dashlyn are gonna do all kinds of fun things together, and we’ll let Jack play with us too, of course.  But think of how cute us three girls are gonna be in all our pink!  Miss Julie likes pink, so we are going to make sure Dashlyn has lots of it, don’t you worry.  Me and KiKi have plenty to share.  Mommy even helped make Dashlyn’s blog pink, so you can go see it if you want.

Mommy says it will be a while before she gets to come to visit our house because they have to do a lot of work and go a long way to get her, but I hope she comes soon!

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!