Monday, November 9, 2009

9 months

These photo sessions are getting a bit more difficult. Before I could get the first shot, she had a letter in hand. (Don’t mind the diaper that’s a little too big… ran out of our normal kind.)

Then Mommy took it away in an attempt to get a pretty shot. Yeah, that worked well.

So I gave up and let her go at them.

Highlights this month: She’s finally cruising.  It seems she took a little break in her speedy development between pulling to stand and cruising.  That’s ok with me, but now she’s on the move again.  Several people are betting she’ll walk in the next 6 weeks… I’m not sure, but it wouldn’t surprise me.  She loves to walk with two hands held, but she’s hesitant with just one.

She’s enjoying feeding herself, prefers it BY FAR to being fed with a spoon.  She likes all kinds of veggies, bananas and apples, multigrain fruit bars, all kinds of crackers, breads, puffs and cereals.  But as for *real* food, we’re struggling because we’re real-food challenged around here.  We need to fix food she can eat, but that’s going to be a big change.  It’s a process to eat less processed foods.

She’s working on teeth 5 and 6 right now, on either side of her lower front two.  Here’s a peek at 5 of them. 

The uppers are through, one more than the other, and the 6th tooth is just finishing cutting through.  How painful must teething be?!?

In the last couple days she’s decided she wants to clap, so that’s fun.  At first I thought she was trying to sign more, but it’s evolved into a flat-handed clap, so we just chime in with “YAY!” whenever she starts a’clappin’. Here’s a few seconds of her showing her new skill, though a little dark.

Friday, October 9, 2009

8 Months

Once again, we're here to mark another month. This will be quick since I'm borrowing M's computer again, and I don't have the same little gadgets I usually do. (Blogger is hard sometimes! Relatively, of course.)

Before baths this morning, we snapped a few pics. These little shoots are getting tougher as we go. Lie still?? Yeah right.

And Braska wanted in on the action, so in she went. Hugs and kisses are always first on the docket for her.

Then KiKi returned the favor, as she usually does, by pulling hair. Hard.

Then they were both up in about 10 seconds, ready to go. So to the bath we went.

Highlights this month: I can't even keep up. I really need to document better. She's eating pretty well again, after her little phase. She much prefers to feed herself, and gets frustrated when she can't do it all herself. But really, pureed foods, at this stage and self-feeding?? I don't think so. We're doing alot of little "meltables" and such, and she's quite good at it.

Today, she did her first cruising down the side of the couch. She loves to pull up on anything at all, and she really likes the walking toy also, and spends alot of time going around with it. Crazy girl, I just can't get used to this kind of skill with motor. It's so amazing to me. She is mimicking a little with sounds, mostly da da da when we are changing her diaper. She loves to babble with Braska. They seem to have some inside jokes, and they get tickled by something and just sit there and giggle. Too cute.

Here we come, month 9. Ready for what's next. Maybe.

Friday, September 25, 2009

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.

[Edited to add: Because Braska insists on being different, her oral motor is NOT as poor as one would think for a non eater. As most of you know, her speech is extremely good and she does not sit with her mouth lax or open, and her tongue is generally in her mouth with her lips closed. Our first speech therapist said her great jaw strength is due to the fact that she spent all her time keeping her mouth clenched to resist food. Ha!]

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.

Thursday, September 17, 2009

Feeding what after jarred food?

Ok, so you guys have given me some good info on Kinlee's feeding for the present. Thanks a bunch!

But let's go one step further...

When she's ready to go from baby food to table food, what do you start with there?

You have to remember that we don't eat real meals or even usually real food in our house. Lunch is whatever I can grab in 3 minutes before M gets home for his lunch hour. I usually throw something together for him and I'm still feeding kids or working on some other task while he's eating. Mac n cheese, LOTS of cereal, ramen (for M), frozen burritos...these admittedly less than healthy foods are the norm for us. This new thing of having a kid who eats "normally" is going to be a full-on change for the whole household. I'm trying to do better lately. I got alot of fresh fruit this last trip to the store and made a fruit salad (fruit only, not added stuff), I bought veggies, but we still haven't used them and I have to do that today or they'll be no good. We are once again on a major no-spend-money month, so I got some basics like turkey and cheese for sandwiches and pasta

Tuesday, September 15, 2009

Feeding this baby--What and how much?

Ok, all you moms with littles... I've never had a kid that eats before, so give me some help.

What do you feed a 7-month-old?
What's the progression from cereal to baby food to _____ look like?
How does the balance go between milk/formula and "other"?

And don't give me the "oh, you'll know...she'll tell you." I don't work that way... need some specifics here!

Sunday, September 6, 2009

Milestone: Or two or three

Kinlee’s been flying through the milestones lately.  I suppose she’s been doing that her whole life.  I can’t get used to it, and I definitely can’t keep up with the blogging that I’d like to in order to document it.  But I’ll do my best in short bits…

She had her first cereal on her 5-month birthday.  She was a fan.  I marveled at the fact that you could just offer her a spoon of mush and she happily opened her mouth. 
I’ve never experienced such a thing!!

She did have a few faces that were kind of funny, but for the most part, she was very pleased with this new element to her routine.

At 6 months, we started introducing some veggies, touched with a tiny little bit of pears to make it a bit more enticing.  She has done great with all of it except the green items.  Those will have to wait a bit more.  She’s a fan of squash, carrots, sweet potatoes, pumpkin, and chicken with apples.

This past week, I gave her the little crunchy things from Gerber Graduates, and I just stared and laughed at how she just seemed to know what to do, and she enjoyed it!  This is so foreign to us with Braska and her feeding refusal.  I can’t believe that a kid can just take food, put it to her mouth, and eat it.  Chewing!  What a novel idea!!

She started army crawling just after she sat independently before she was 6 months.  She’s gotten quite fast at it and she can get anywhere she wants in no time flat. And if that weren’t enough, now the girl is crawling too!  She’s not even 7 months!  Maybe that’s normal, maybe that’s what all kinds of babies do, but I’m amazed at this little crazy girl.  No video yet, but we’ll get some.  She’s still kind of wobbly and slow about her steps, but she does it.

Check out this pic I got this week, it reminded me of another and I looked back on Braska’s blog to find it. 

Same hand-me-down shirt, same BabyLegs, and almost the same weight.  Kinlee is the same length as Braska was in that pic, and she’s less than a pound under the weight that Braska was there.  The big difference is that Kinlee was 6 3/4 months, and Braska was 16 1/2 months. Almost 10 month difference in age.  So funny to me to see how similar and still different.

Tuesday, June 2, 2009

Time mismanagement

I have so many things I want to write about. Not so much because YOU want to know as that I need to work through them, and it's very cathartic for me to "write through" things. But I don't have time. Or at least I can't seem to find the time to sit down and write for a couple hours... and that's what I need just to scratch the surface. I am not one who can write for a few minutes and then come back to it later to continue. Not on this kind of stuff.

I've debated doing some video blogging, like talking to the camera, because it would be quicker than typing it all out, but I can't get past looking at myself on video. That's a whole different issue. I've debated pulling an all-nighter to get some stuff fleshed out, but I can't imagine missing sleep right now. Again, another issue.

So for now, it will have to wait. I don't want to wait too long, though, because Kinlee's getting older, and I have so much I want to get documented about her birth and first few weeks here, the adjustments and the ponderings. I keep saying I need a blogging/digi-scrap weekend...just me, all alone, no housework allowed, just free-flowing thoughts, my laptop, all 1 million of my pictures from the last 30 months, and time to edit my writing thoroughly. (I'm big into editing.) Don't worry, I'm not holding my breath. I'm not *totally* delusional.

As a reminder to myself....topics I need to hit...
~Kinlee's birth story.
~Why I'm thankful Braska came first.
~Asking for help
~The trouble with helping others
~Current parenting strategies
~Braska updates: feeding, development, personality, IEP prep.
~Kinlee updates: milestone documentation

Those are the ones ok for public consumption...there are many more lately that aren't. Don't know what I'll do with them, but for now, it all waits.

Sunday, May 10, 2009

*REAL* Mother's Day

It's 8:08 am. I got up about 6:20 am because I woke up and knew Kinlee would be up very shortly. She was stirring, but I thought I'd check my email and pump before she got up. (Since she's sleeping through the night, the morning provides help to our surplus supply.) She woke up just before 7, so I changed her, fed her, burped her, and dealt with a MAJOR blowout diaper, which brought with it a bath and clothes washing for her and for me. Then Braska woke up while I was re-dressing Kinlee, so we went to her room, put Kinlee in B's bed, then changed Braska. We all went out to the living room for Braska's medicine and water dose (little bit to help wash out that overnight goo that she's had this week, helps before her full feeding). My nose quickly told me that Braska was already in need of another diaper, so back to her room we went.

Now I'm having my bowl of cereal. Braska's watching her Blues Clues (by that), and Kinlee's in the swing. In less than two hours from now, we'll have to manage my shower and dressing for church, Braska's morning feeding, a bath for Braska, dressing both girls for church (I don't put the good stuff on them til right before we go), and packing for a day with the in-laws to celebrate Mother's Day and M's birthday tomorrow.

Baths, blowout diapers, feedings all around, laundry, and changing clothes several times. All in about 90 minutes.

That's what a REAL Mother's Day looks like in our house.

And M is still sound asleep.

Friday, May 8, 2009

Lessons learned: Conference on DS, Behavior Session

On Saturday, I went to a half-day conference at Children's.

Feeding, Speech, and Behavior: Caring for children with Down syndrome from infancy to adolescence.

If I hear of a conference, I'm interested. If it's related to DS, I'm more interested. If it's gonna talk about feeding, speech, AND behavior, I'm there. I love to hear all the new things, tips, what's worked for others, and what the pros say. This particular conference was geared toward therapists and caregivers as well as parents. I like this type of format because the information is a bit more detailed and clinical, not just anecdotal, and I enjoy that alot.

I took alot of notes on the materials and outlines that were handed out, so I want to put together a few posts to document more clearly what was discussed and what I noted about things. It might be a bit choppy and random, but I'll try to be sure it makes some sense. As many of my posts are, this will be mostly for my own purposes but I'm sure there might be a thing or two that could be helpful to others. I'm starting with behavior because it's been a hot topic lately in a few of my circles, and I found it especially interesting.

And for the record, I have implemented a few new things that are working with Braska. She was having more "issues" with my time being occupied by Kinlee than I realized. If you want more details on that, I can address that soon.

Understanding and Supporting Behavioral Development in Young Children
Mary Michaeleen Cradock, Ph.D.

  • We all want our kids to be happy, develop to their potential, and have meaningful relationships. Behavior is a necessary element of this because it is related to happiness/satisfaction, it's critical in how children are perceived, it can support or interfere with abilities, and it can optimize experience during critical period of brain development.

  • Factors that impact the behavior of young children: Age; Health: sleep/fatigue, illness, medications; Temperament (personality); Environment, including parent behavior.

  • Most children, regardless of their degree of ability or disability are classified as "flexible/easy," as opposed to "feisty/difficult" or "fearful."

  • The lovely stereotype that so many try to debunk whenever possible--all kids with Down syndrome are happy and amiable--is obviously not true for everyone. BUT--even though kids with DS have a range of temperaments just like other kids, it does appear that kids with DS are generally more pleasant, happier, and have a higher compliance at a younger age than kids without DS.

  • Discussion/presentation focused largely on the elements of the child's environment, specifically parenting style and response to the child's behavior.

  • For kids with DS: Most do NOT have significant problems in emotional, social, behavioral, or occupational realms. Many have healthy social adjustment.

  • A small percentage of kids with DS have a type of behavior disorder, like ADHD, oppositional disorder, phobias, or autism.

  • Kids with DS tend to have these behavioral characteristics
    Increased off-task behavior, avoidance, strong-willed behavior. This is often seen when they are presented with tasks that are above their level. Most often used: avoidance.
    Limited persistance. If they are unable to do something the first or second time, they will often give up and be satisfied to do something different instead of the original task. Example: If given several toys to play with and one of them has small switches or knobs that they cannot yet grasp or use, they may be just as pleased to go on to the next toy instead of trying repeatedly over a period of time to conquer the difficult toy.
    Limited self-regulation. Delay of gratification or waiting may not be understood.

  • Avoidance often includes "charming." Though we all like the cute smiles, the sudden cuddles, the waving or blowing kisses, charming can often be used to avoid experiences or lessons that would be helpful and are necessary. Charming allows the child to focus on the social element instead of the problem solving that might be required in the situation. It can cause them to miss a learning opportunity. And it can become a habit. We must teach the appropriateness of actions like this as they grow up so that it does not become a crutch for them that costs them important learning experiences. Example: When a child is working with a therapist who is requiring them to do things that are difficult or uncomfortable, they may (Braska does) begin to smile or attempt to hug or distract with another cute trick like saying silly things, dancing, giggling, etc. The therapy is important and needs to be continued, so the charming must be handled appropriately so that the learning is still primary and the child is not allowed to succeed in changing the direction of the situation.

  • It is a myth that children with DS cannot change their behavioral style. Evidence suggests behaviors CAN be changed, and, often, modifying the environment makes a difference.

  • Remember that kids with DS are visual learners. Their verbal working memory is less well-developed than typical kids their age. Example: When telling a child to go to their room and get their shoes, they may go to their room, see a book, sit down and read, while completely forgetting that there was a second task in the instruction. This skill takes longer to develop, so expecting one without the skill to do this can cause what is perceived as behavioral issues, but it is simply that the child is not yet able to complete this task in that way. Give one-step instructions, and when transitioning to two-step, go with the child to assist them in remembering at first, so that the distraction is caught at onset instead of after they've been sitting there reading for 10 minutes when you go to find them.

  • Social attention is a powerful force. Especially parental attention. Removing it can be a very effective method of discouraging unwanted behavior.

  • Inconsistent behavior is expected. Kids with DS tend to show more instances of doing something several times and then not doing the same skill, for no apparent reason. This is why consistency is necessary when teaching a new skill.

  • Behavioral challenges interfere with learning new skills, socially isolate the child, may result in self-injury or injury of others, and can cause damage to environment.

  • Solving behavioral challenges:
    Define current behavior and the desired behavior
    Identify the function of the behavior
    Analyze environment for contributing factors
    Make a plan to address
    Test your theory

  • Define behavior.
    Antecendents: setting, activity, time of day, others present, child's condition--before the behavior. What was going on before the behavior? Be specific.
    Behavior: Specifically what is the child doing that is, in this case, unwanted.
    Consequences: Actions and others' behavior that follow the behavior.

  • Most parents or caregivers tend to focus on the B(behavior) and C(consequences) but the biggest difference is made in A(antecedents).

  • Scenario: Jacob's doctor visit. Antecedent: Going to the doctor's office. Behavior: Protesting, Kicking, Pulling away. Would run away if not being held. Consequences: Taken out of the office by mom, remained out for 15 minutes til calm. Returned to the office with mom and nurse.

  • Name desired behavior: Go to the doctor's office without protest.

  • Questions to ask: Is this in the child's skill set? Is additional skill development needed to meet the requirements of the desired behavior?

  • It's helpful to think in non-negative terms for desired behavior, eg. "Enter doctor's office calmly and politely", instead of "Don't kick, scream, and protest when going to the doctor." Another example, related to potty training, eg. "Let's keep pants dry today," instead of "Don't wet your pants."

  • Identify the function of the behavior. What is the payoff? Possibilities: Gain attention, gain tangible consequences, sensory experience, escape or avoidance, communication, emotional regulation, release tenion, fill a need.

  • The most common functions of unwanted behavior in kids with DS: Gain attention, through charming behavior, social gaze, crying, hitting. Escape or avoidance, through tantrums, charm, focus on other activities/distract.

  • Function of Jacob's behavior in scenario. Possibilities: Avoid new situation or old traumatic situation, gain attention of nurse/mom.

  • Analyze environment for contributing factors. Setting, time of day (very important!), others' behavior/reinforcement. Ask who, when, and where.

  • Behaviors are maintained by reinforcement, either positive or negative. Positive reinforcement: Behavior results in the desired activity or item. Negative reinforcement: Behavior results in removal of preferred activitiy or object.

  • Consider when the unwanted behavior does NOT occur. What is the setting then? Eg. Braska's behavior of refusal to eat. When does it not occur? Braska eats much better in a restaurant or public setting usually.

  • Adjust desired behavior according to information about skill set and when the avoidance does NOT occur. Example: If the desired behavior is that I want Braska to mind when I give her an instruction, it might be too vague at her current level. If she seems to always avoid if I am not right there next to her to enforce the instruction, I might want to scale down the expectation to begin by requiring her to mind if I am sitting next to her (Give me the book.) Then expand as that skill becomes more consistent to where she can mind if I am across the room. (Put your toys in the drawer.)

  • Make a plan to address the behavior. Address the antecedents: Modify the environment if it seems to contribute to the unacceptable behavior. Modify the demand by offering choices or offer collaboration/assistance to help them accomplish the task so they are not instantly overwhelmed with the request. Address the consequences: Pay attention to the positive things and remove attention from the negative (when no harm is done). If the desired behavior is to sit calmly in the doctor's office, praise the child for sitting quietly even if it has only been a short while. Praise for calmness can even be given when the child is being held or read to. The key is to associate positive attention to the positive behavior so that the child is not only getting attention, though negative, through unacceptable behavior.

  • Extinction burst: Try to extinguish the behavior, they ramp up the defiance, parent escalates the extinction attempt, child ramps up again. Example given: When a person puts money in a soda machine and no soda comes out, they push the button a second and third time, pressing it repeatedly. If no soda comes out, they may bang on the front of the machine. If there is still no soda, they may shake the machine or rock it back and forth. If this does not work, they throw up their hands, yell an expletive, kick a wall, and walk away. Extinction burst. Like a child who almost seems to have to work himself to a frenzy and then they seem to find a release finally and become instantly much calmer. If the soda came out after the shaking of the machine, that would cause that person to go directly to that level each time he wanted a soda. The same is true of a child. If they receive their desired reaction, be it attention, candy, a toy, or an activity, when they scream and writhe on the floor, they will then use that over and over to get what they want. If they are given what they want ONLY when they are exhibiting acceptable behavior, they will learn that is the best option. (Unexpected factors of hunger, fatigue, and outside changes can alter this, of course.)

  • To solve behavior challenges, the hypothesis must be tested more than once. If a behavior has been around for months, it will take at least a few weeks of consistency to re-teach the desired behavior. Trying something a couple times and counting it a failure is giving up to soon.

  • Never forget to involve all the "key players" in working on new behaviors. Extended family, friends who are around often, daycare providers, teachers, etc. If a behavior is allowed by grandparents it will be almost impossible to avoid at home. Consistency is ultimately important. Again, this seems to be even more important in kids with DS than typical-developing kids.

  • Sometimes it is helpful to get input from others who know the child well to determine the antecedents of the unacceptable behavior. They may notice things a parent doesn't. A common pitfall in solving behavioral challenges is setting the bar too high. Make sure the child is able to comply with request. Expecting actions that are out of the child's skill set will only encourage frustration and thereby avoidance.

  • Always choose ONE behavior issue to work on at a time. Choose battles carefully and focus attention on one thing instead of solving all the issues at once.

  • Parents must make sure to maintain their own health, mental and physical, in order to be able to have the energy, positivity, and stamina to deal with these challenges. Take care of YOU.

  • Example given by audience of issues they are dealing with: Child with glasses, removes them immediately when grandma turns attention away from reading or playing to answer a phone or tend to cooking. Suggested actions: Praise the child for keeping the glasses on even for one or two seconds during a quick look-away. Start by turning face away but leaving hand on her shoulder or arm to show attention but not visual. Praise when she leaves them on during that turning away. Build up time turned away, then begin to step away, sometimes for only a second or two, and return to praise her for keeping them on. Return to read or play again before attempting again. Increase slowly of several days or weeks depending on the child's response. If the child removes the glasses, replace them without speech, no lecture, no scolding, just replace them and continue on. This is taking away the "drama" that can often be the desired response. If grandma must step away for a moment, remove the glasses and take them with her (like to check on dinner) and then return to replace the glasses and continue the one-on-one time. This will help remove the possibility for negatve reinforcement and the chance to defy.

  • Example of issue given by audience: Running away when outside playing or in parking lot. Suggested actions: Praise child for walking next to parent, even when parent is holding onto child. "I love when you walk next to me. It's very nice to have you hold my hand!" Spend more time praising the child for remaining close in the yard than time spent chasing or yelling at the child as the parent chases the child. If the child runs, when she is caught, do not lecture or scold again, this is once again attention/drama. Remove the child from danger without excessive talking. Practice can be very successful. Take the child to the car or to the store solely to reinforce proper behavior, so that there is not the stress of actually needing to accomplish shopping or being in a hurry to get somewhere.

  • Book suggestion: Achieving Best Behavior for Children with Developmental Disabilities by Pamela Lewis.

Session notes on Feeding and Speech to come soon.

Monday, May 4, 2009

To move or not to move

I'm sitting here in my all-too-usual spot. The recliner. Kinlee's asleep on my left shoulder, Braska's asleep cuddled on my leg. I'm "typing" with my right hand while the laptop sits on the arm of the couch next to the chair. (I'm getting much faster at this one-handed typing lately.)

Do I wake them both to attempt to put one or both in bed? Do I just sit here and let them sleep even though Braska is due for a feeding? Braska missed school today due to lots of goo in her head, so she really needs sleep. But she might sleep longer in her bed. And do I want to sit here stuck for the next hour or so?

They are both so cute when they sleep. But dang, they are little heat machines!

Would you get up or stay put?? Go ahead, tell me...I'll be here.

Wednesday, April 22, 2009

Different States Early Intervention

Attention all parents involved in Early Intervention(EI): Help me out a minute, pretty please?

I've talked to a few of you lately about a variety of issues related to EI (AKA, Birth to 3, Babies Can't Wait, First Steps, etc.) and I'm finding that alot of the states are really different in how they handle things. I had no idea that there was such variety in the services and the processes.

So as a point of awareness for those who surf the web for this stuff, and just as a way to share with our fellow parents how things are where we respectively live (Maybe there will be something you didn't know about your own state!), can you take a minute a summarize a few points in a comment here? For the friends out there who have discussed this with me recently, can you still comment here so that we have the best grouping of info? Thanks!!!! If you've done a post on your blog on this, feel free to put the link in a comment too!

1. Some of you have mentioned looking for a preschool for your child who is about to turn 3. How does your city or district or region handle this? Do they assign a school based on your home location or do you have choices? For you that have kids in the 3-6 range, how often do they attend school and how have you felt about it?

We chose to live in the area of our city that we do in order to take part in our current situation. Some districts in our county have their own Early Childhood building that includes the preschoolers transitioning from First Steps. But we chose to be in the district that utilizes a special organization/facility that has 60/40 classes and in-house therapists. The whole place is designed for those with special needs but there are peer models there as well. (That's not the official description, but that's my simple summary.)This is where Braska goes to her pre-preschool currently, and she'll continue at that location, just going more often after she turns 3. We've been very pleased with our therapists from that organization that we've had already through First Steps and Braska really loves going to "school" on Monday mornings. So there's no "choice" for us to make, and I'm curious how that works elsewhere. It seems like several of you bloggers with kiddos this age are looking at preschools, and that's not part of our process, I'd like to know how it works.

2. Does your EI service provide equipment for you? Like walkers, specialized feeding things (Z-vibe, jigglers), or Sure Steps or orthotics? I've heard some even do things like swingsets!

Ours has a system (IL did too) that basically provides what is reasonable and needed when it is written up by the therapist and/or the service coordinator. I don't know the details, but I know it works. We got Braska's Sure Steps through this, and it covered it all. When we were in IL, they offered some of the feeding things, but I was too impatient for the paperwork and waiting for approval, so I just bought what we needed.

3. How does your EI work as far as payment from parents? Is it on a sliding scale based on income? Or is it a free service to everyone regardless of income?

In both MO and IL, it is a sliding scale. In MO, the fees are lower than in IL. I think the highest amount is $100/mo.

4. For those of you with 2-year-olds, have you had opportunities to attend training or information sessions about how to prepare for the transition to an IEP? What are you doing to get ready for this transition?

I've been blessed to know Adrienne, the leader of our local DS group and a friend I knew online before I moved here. I call her the IEP Queen. She is a wealth of information. She's involved with MPACT which gives training sessions for in-depth info on what to expect and how to be the best team member you can be for your child's IEP team. Here's a link to some great resources if you're interested. I'm trying to learn all I can so that I don't just plain accept what's told as fact but can make sure we get what we need and what's best for Braska.

5. And finally, how often do you have therapy and what services does your child get currently?

Braska gets weekly PT, speech is every other week, and OT is every other week and happens while she is at school on Mondays. She also has a nutritionist who visits twice a month and works on feeding and makes sure we're getting her enough food/fluids by mouth or via the G-tube.

Thanks, friends!! I really appreciate your time, and I think it will be very helpful. I am contacted often with some of these questions, so this will be a great resource!

Friday, March 27, 2009

Wonderful welcome home

Today the girls, both canine and human, and I made the trip back home. Kinlee does not travel nearly as well as Braska did at that age, that is for sure, but overall, they did well. Both trips, down and back, had stops at about halfway for a hold-over feeding for Kinlee. And it's only a 2-hour trip!! She doesn't go to sleep and snooze the whole way as I'd like, so we adjust. When she starts to cry, Braska yells at her, and if Kinlee doesn't stop--which she doesn't--then Braska melts into one of her previously rare crying fits. Then the dog barks at both of them. It's good times. So even though I prefer a straight-through trip, we stop and calm them all, then we continue on.

When we arrived home today, there was a very delightful surprise here to greet us. A sweet bouquet of flowers.

It might look simple to you, but to me it's absolutely perfect. I knew immediately that there was thought behind it, and I'm all about that kind of thing. I called M right away and told him we were home and that I loved the flowers. And he confirmed that I was right in thinking that he'd planned this little bouquet very carefully.

There's the rose for me.

A carnation for Kinlee...

And, my favorite detail, a tulip for Braska...

Many of you will know why that tulip is so special. For those that don't, read this. We like Holland, and especially it's beautiful flowers.

Thursday, March 26, 2009

Mommy report: Words, words, and more words

Braska has taken off with her speech in the last month. She's been mimicking, for the last few months, everything that's said, in person, on TV, in the store, etc. But now she's using the words, identifying what she wants, "labeling" as the ST calls it. We were all excited when she first looked at the TV when there was a cat food commercial and said, "Cat! Meow!" Then in the next 4 days there were another 6 words used, and we just kept looking at each other like, "Holy Cow?!?" We started keeping a list, so we wouldn't forget, and so we could reinforce them. It got to where we were adding new words, sometime 2 or 3, every day. I'm just plain blown away by this, let me tell you. She's cracking us up with the mimicking still, and we really have to watch what we say or what's on the TV, since she doesn't so much have an "appropriate" filter. She just says it if she hears it.

She's come a long way, also, in completing her words clearly. Nose is now nose, not just "no." Sheep has the SH and a clear P on the end. Bottle is plainly two syllables with the appropriate sounds in both. We're to the stage that when she will allow those outside our house to hear her, they can actually understand her. That's pretty fun, I must say.

Her teacher at school has said that she's just talking up a storm at school the last few weeks. She was all shy the first few, so I'm pleased that she's getting comfortable enough to chat with them. Some uses are more inconsistent than others, but all of these on the list have been shown properly more than a few times. Here's what she's got so far... unfortunately, we've not been successful getting much good video yet, as she's not so cooperative at performing, but she uses them as she needs them.
  • Cat: Especially when she sees them on TV or a movie. And she yells this one!
  • Drum: She requests her water drums when she gets in the bath, and she has an ice cream tub that she uses for a drum as well.
  • Bubbles: This has recently been a request from the PT, as Braska found them in her bag and wanted some bubble action. She also identifies them when asked.
  • Nose, Ear, Hair: She prefers to identify these on bodies not her own.
  • Picture: This is what she calls the camera. She says it when she grabs the camera if it's been left within reach and when she looks up to see it pointed at her.
  • Movie: This is said, generally with animation, as soon as she gets in her carseat in my car. There's a DVD screen that she uses on longer trips. She seems to think they are all long enough.
  • Bottle: Every time Kinlee gets a bottle (when we're away from home for a feeding), Braska has to get in on the action, come grab the end of the bottle and identify what she has found. She has a tendency to want to take it out of Kinlee's mouth, but we're working on that part. One step at a time!
  • Car: One of her puzzles has a car piece, so it gets identified when she plays with it. She will answer, "What is this?" for that piece too. And sometimes when she's looking outside at the front door she'll say car when one goes by. Oh, and of course, when we go to the garage to leave, she lets me know where we're supposed to go.
  • Puppy: She doesn't seem to like the word "dog" so it's always "puppy" instead.
  • Sweet: This is her word for a hug lately. She'll lean in and cuddle for a second and say "Ohhhhh, sweet." I think we must have said this and not realized it. She also does this to Kinlee in the morning when she comes to say hi.
  • Nice: When she pets Kinlee's head, she says, "Niiiiiiice." We have told her repeatedly to "be nice" so I guess that's where she got it.
  • Bless you: When someone sneezes, including herself, she greets with this. So funny to hear.
  • Wash: This is used whenever she's done with eating, or if I wipe her hands when getting into/out of the shopping cart or something.
  • Bouncy: She loves this one, and it's all for Daddy. They have a knee-bouncing good time in the evening, and she hardly lets him sit down after work before she starts insisting, over and over and over... "Bouncy!!!"
  • Poop: This one shocked me, but when I get her out of bed in the morning, if she has messed her diaper, *most* of the time she will tell me "Poop." It's not 100%, but it's been pretty consistent.
  • Bib, Tray: When it goes on before eating, and when it comes off...she labels them each both times.
  • Door: Any door, she goes to it, knocks, and says, "Door."
  • TV: This is what she says sometimes when she gets in the car, instead of "movie," and she hands me the remote in the morning after breakfast and says, "TV!" (sometimes TB) as she knows it is time for Sesame Street.
  • Makeup: This is what we call her Aquaphor that we use on her face (also arms and legs, but then it's "lotion" which, I's confusing). Anytime she sees the container come out, she yells "makeup!" and occasionally it sounds like "nakeup" for some reason.
  • Bath: If we forget to close the bathroom door, she stands at the side of the tub, knocks on it, and says, "Bath" over and over until someone removes her or complies with her request.
  • Diaper: Everytime we change her, we ask, and she answers. And if she gets into the diaper bag and empties it, she labels each one as well.
  • Brush: A comb or brush gets called a brush. And she will take it and attempt to comb/brush whatever hair is near. She usually tries to do her own RIGHT after I've done pigtails or something nice and neat.
  • Shoes/socks: These are favorites of hers. She taps on them and labels them as we put them on her or if they are left on the floor. And if we put them both in front of her and ask her to give us one or the other, she will get it right. I love that!
  • Hat: This one almost always is both a sign and spoken at the same time. And it usually comes up when Daddy shows up with one on.
  • Pat pat: This one is for Kinlee. She will lay her hand on K's belly and then lift just her fingers and pat, telling us what she's doing. I think it's quite interesting that she doesn't lift her whole hand.
  • Glasses: She occasionally will just touch her glasses and label them. Or when she's around Grandma or others with glasses, she'll label them and grab, but she's better about not taking them off of the person. She also says "glasses on" when we put hers on in the morning.
  • Mommy: She has taken to patting me on the arm and saying it, just the last few days. She doesn't use it to request my presence yet, like from her crib or anything.

A few other fun things that we do every day are her ABCs, when I say each and she repeats them all. She's now able to give the following letter on about 6 of them. We also work on numbers 1-10 (10 is her fave), and she will do 2 and 3 when given 1 to start with. And she now has a few animals that she knows sounds for: Cow, Sheep, Cat, Bear, and Horse. She can say the word and then answer, "What's a ____ say?" with the right sound. Bear is our favorite, because she says "raaooor" with a very bored and un-scary tone....a very mild bear, for sure.

We are very pleased that she's doing so well. As most of you know, every kid is different, including kids with DS. Every kids has strengths and areas that they struggle with more. Braska's strength is her speech/communication, whereas gross motor (walking, standing) is her area of great struggle. No matter how that changes or evolves, we'll still celebrate all the accomplishments and continue to work on areas that need more help.

I hope to have video to share of some of this soon!

Monday, March 9, 2009

1 Month

Is it true? Can it be? One month old!

That's worth doin' a jig!

Miss KiKi spent some time resting in the big chair with her little protector today.

Highlights this month: Birth! And finding a workable schedule, feeding "alternatives" (see post below), lots of introductions, and her first smiles just in the last few days (pics soon)!

We made it to one month in good shape, and it kinda went quick! Here's to many more...

Thursday, March 5, 2009

Finding a groove

**FYI--There is a picture link to Kinlee's blog in the left margin below Braska's picture link. For those of you who wanted a direct connection...there ya go!**

I'm really not keeping up with this blogging stuff like I'd hoped, but hey...what else is new!? Me? Learning something different than I had planned? No way! I know there are a particular few of you who especially enjoy these epiphanies of go right ahead. The girls are both in their beds sleeping right now, I just got out of the shower, and I've got about 40 minutes to say hello to blogworld and pick up the living room before the PT gets here.

How are we? That is the most popular question. Depending on it's context, there are several answers...

Physically--We are all well. I'm feeling pretty good, much better than I have for months since all that pregnancy aching is gone. The girls have been healthy. M is finally feeling better after having a couple rounds of frustrating symptoms. My net gain for the pregnancy was 8 pounds, and I've lost 22 or so as of the 3-week mark, so I can't complain. Now just to get my appetite in order... I've been famished lately! Breastfeeding is not a topic I'm one to discuss, usually, but it's going well and I'm even storing up a supply in the freezer for later, so that's encouraging. I did learn a valuable lesson about what I eat affecting Kinlee... poor kid.

Mentally--I'm good! Red Raspberry Leaves capsules ROCK! For being such a skeptic about herbal remedies and such, I'm sure a believer in this particular one. If you've got hormone-related symptoms, either with PCOS, pregnancy (morning sickness!!), PMS, postpartum, or whatever, try these. They can't hurt you (according to physician and pharmacist that I consulted) and in my case, and several others that I've now come to hear from, they have been amazing! I've not had any panic since the day I started them, and after the following day, I've not had much of the anxious stuff at all. That's really really really great in my book! The dose on the bottle is 2 capsules per day, but I started with 3 twice a day when I was at my worst, then I've dropped down to 2 twice a day right now, soon to drop to the maintenance 2 per day. Again, this was checked out with the pros. (Now, having worked in medicine for many years, I have to add the disclaimer that I'm not making any guarantees and I'm not a doctor... but if your issues are hormonally driven...I'd say give it a try!)

Maternally--I'm slowly figuring out how to be the mom to two girls, how to have time to be a wife, and how to sleep in small nuggets of time. In all honesty, I think we have been way blessed and fortunate. Kinlee is SO good, and she is much like her sister in ways that many swore wasn't possible. She's very easygoing, rarely cries unless she's hungry, and then it's such a quiet and short-lived cry. She sleeps well in her crib ,and at night she's taken to a 4 hour schedule for the most part, and I'm loving that. Both the girls travel well when we need to go out. Kinlee is happy to have a bottle or the "real thing" either one and does great with both, so what's not to like about that?!? I am sure there will be days when I crumble and want to run away, but thankfully, the last week or so has been quite manageable.

**Ok, both girls just woke up at the same time, so I'll have to adjust... time to wrap up**

Overall, we're just finding our way to figuring out how to be a happy family of four. So far, so good. Again, thanks so much to all of you who have sent cards and gifts and goodies of all kinds. We SO appreciate you all, and one day I might get caught up on my thank-you cards!!

Monday, February 23, 2009

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!

Thursday, February 12, 2009

Improvement is nice

She's picked up a bit on the feeding, so that's good. She's been performing biological functions consistently, so that's good.

She's still cute, so that's good, too. There's more info on her blog if you feel the need...oh, and pics are there too, of course.

I'm tired, so it's time to attempt one more feeding and off to bed for a bit.

Late-breaking news...we've found a way to wake her to eat. Give her to her Daddy. She seems to not be so fond.

Home sweet home

It's so nice to be home. I love my bed. And I love my recliner. And,'s home.

Kinlee is doing well. Yesterday she had a day of almost no eating, and she didn't produce her required number of wet diapers. (You might have seen the post on my blog...I think she decided she didn't want to be talked about like that.) We gave her an ultimatum, and she responded. Good little girl. We were finally able to wake her enough for her to eat before bed, and she had a good feeding. She slept 4 hours, and we got her up and awake enough to feed again. Then back to sleep for 4 more. I cannot complain. I enjoyed the sleep, let me tell ya! (It's partially due to my mom letting Kinlee sleep next to her, as I wake with every coo and noise she makes. Same reason I can't sleep with Braska in my room either.)

Today, she's fed ok and she's napping very well. She had a little bit of a sunbath to try to prevent any jaundice issues. So far, we're in good shape there. Her "output" is getting more in line with where we want it, so I'm feeling good about things.

And by popular's some more pics for you to enjoy.

From Tuesday... little skinny hands with LONG fingers. Everyone in the delivery room commented on her hands right after her feet... maybe we're just used to Braska's cute little short ones.

And wrinkly knees. I just think they're funny.

She was not a big fan of the going home outfit.

Doing a little sunnin' today.

Giving us the indication that we might need to have a particular talk about not smoking, earlier than usual.

Wednesday, February 11, 2009

Hmmmmm...same deal, different daughter

We're home, with the all clear. How are we??

Let's see, does this sound familiar?

Newborn girl. Content to sleep all day and night. Not interested in food. Won't wake to eat. Doesn't wake crying when hungry at night. Doesn't complain for diaper change. Doesn't cry when getting shots.

Yeah. Good times. At least this time there's no heart issue...

All in all, it wouldn't be a bad deal if it weren't for that nutrition and necessary fluid intake thing. We shall see if things improve on the feeding homefront very soon. Otherwise, we'll have to take the next steps.

I'm totally fine with the contentedness and good demeanor, don't get me wrong! Just need to eat enough to sustain. She's down to 6 lb 12 oz. One super skinny little thing, that's for sure, with the 21.5 inches.

We're employing every type of waking trick. It works enough to see the eyes, make her a little whiny, and then about 60 seconds after she is getting food, g'night and thanks for playing.

So we'll see... she's awfully cuddly with all this sleeping, though. That's not so bad.

Tuesday, February 10, 2009

A little update and more newborn pics

We had an ok night, got some sleep, ate ok, until about 5:00 am when she decided to just be awake and a little whiny for a while. We made it through.

Pediatrician's check this morning was ok...not perfect. There is an issue with her left hip, not unheard of, but something to check out. A definite click/clunk, as they call it. Possible hip dysplasia. We'll have it checked out with an ultrasound to see what's up in the next week or so, sounds like. But that explains why she has really hated being messed with on that leg for diapers. No biggie...we listened and said, "Got it. We can handle that." What a difference life experience makes, huh? We'll be here til tomorrow morning then head home. M may go back to work tomorrow, since my mom is here, to save a few days for when we're on our own next week.

Now, on to the pics, and I'm gonna see if I can catch a little nap after some feeding.

Sleeping beauty. (Anyone see a resemblance in that profile... and you SO better not say her mommy!)

Soft, dark hair, with one little blond patch that you can't see here.

One very wrinkled and VERY long foot!

One nibblin' good ear...again, some of you will recognize this ear.

Snuggling with one very tired (but freshly showered...yay!!) Mommy.

Checking things out on day 2.