The fam came today and primed and painted the living room and hall. It looks nice, though the color I picked is a bit lighter than I thought. It's good though. Sugar Beige, it's called. Yum.
Tonight and the rest of this week, Ryan and Julia, my youngest two sibs are staying with us to be my extra hands and helpers in these last few days before the move. And in exchange, you might say, Braska went home with Grammy and Papa for a few days.
I packed all her little things, wrote out all the instructions for feeding and such, and off she went. It's weird to think I don't get to get her up and have our morning playtime in the big bed for a few days, but she'll be fine with Grammy. I hope she's not mad at me by Saturday. She'll be happy to be home, to her new home, I'm sure.
Tuesday, August 19, 2008
Friday, July 18, 2008
Fun parts of therapy
All the nice ladies who come work with me on stuff are fun. And they always do some fun stuff. But sometimes it's hard work, too. I try to do my best, but I get tired sometimes. But today I'm gonna show you some of the fun stuff we've been doing lately!
Miss C came on Wednesday and we had a good time playing while I was having some yummy yogurt. I've been taking more bites from her, and some from Mommy too. It's kind of messy, but Mommy's trying to get used to that. Here's a movie from when Miss C was here last time.
Then Miss Lori came to help me get stronger. I showed her how I was climbing and everything, and she was so happy! Then we did some practice standing on a rocking board and up from my new feeding chair. I love my chair alot, so I don't mind when we get to use it for practicing. (Mommy note: Some of these therapy videos may seem like there's alot of nothing, but for those of us in this world of therapies and milestones that we work so hard for, these are glimmers of hope and quite exciting hints at what's just around the corner.)
I've been trying new ways to have fun climbing. This is the new way that I watched TV the other day. Mommy thought it looked silly, but I watched my whole show like this.
I like to turn around in my feeding chair, too. I haven't figured out how to get up in it on my own yet, but I'm trying.
Mommy even put another place up so I can climb even more. But then when I get up there, she takes me down so I don't fall. But I like to just lay like this and relax.
When I've been climbing a while, I get pretty tired.
Tuesday, July 15, 2008
Leaky belly
On Sunday Mommy was feeding me my vanilla milk when she looked and saw that I was sitting in a big puddle of milk in my chair! She put me down and Daddy looked to see what was wrong. The milk was coming right out of my second button where it's supposed to go in.
After they checked it out, Mommy decided it was time to put in a new button, so Daddy got the stuff and the new one, and he made it so it was ready to pull out easy. Then just like that... Daddy took it out! There was just my belly left with a little hole!
Mommy held my hands while Daddy was working on me, and he put the new button back in. I've had the same button since I first got it last year, so this was the first time we changed it. But it was really easy and it didn't even hurt.
When Daddy got it back in, he put water in the little balloon in my tummy so that the button stays where it's supposed to be.
Look, all done. New button!
And I never even got sad face. Just talked to Mommy while Daddy did the switch!
After they checked it out, Mommy decided it was time to put in a new button, so Daddy got the stuff and the new one, and he made it so it was ready to pull out easy. Then just like that... Daddy took it out! There was just my belly left with a little hole!
Mommy held my hands while Daddy was working on me, and he put the new button back in. I've had the same button since I first got it last year, so this was the first time we changed it. But it was really easy and it didn't even hurt.
When Daddy got it back in, he put water in the little balloon in my tummy so that the button stays where it's supposed to be.
Look, all done. New button!
And I never even got sad face. Just talked to Mommy while Daddy did the switch!
Wednesday, July 9, 2008
Retropost: LOTS of therapy
Last week I got to meet all my new therapist friends with First Steps. Monday Miss C came. She's an OT and she's going to help me learn to eat better. I ate a little bit of beans from the Mexican place that we had left over, and I tried to take a little bit of water from my nosey cup.
After Miss C left, Mommy let me play in some gooey stuff, and it wasn't so bad. Usually I don't like to have that stuff on me, but it was ok this time. I even got a little in my mouth, but not much.
On Tuesday, we went early in the morning to see a guy who measured my feet in a whole bunch of ways for my new Sure Steps to help me stand and walk. While we waited and Mommy wrote on some papers, I played in the chair.
Tuesday after lunch, Miss Jocelyn came to see me. She's an ST and she's going to help me learn words and say words. She brought bubbles for us to play with, and I wanted to do them myself.
On Wednesday we went to see Miss Stephanie again. She helps me learn to eat too, but I got a little upset again because Mommy wasn't there. She waits out in the other room during my feeding time at that place. I don't like that so much, so next time Mommy's going in with me. I did eat some pudding though.
On Thursday, Miss Lori came to play with me. She's a PT and she's going to help me learn to walk and climb and stuff. We had a fun time, and she showed me how to climb up on the couch. I even stood up for a little while with just a little help from the couch. I think I'm gonna have fun with Miss Lori and all my new friends!!
We didn't go see Miss Brandi on Friday since it was a holiday. I'll tell you about my fun holiday weekend soon. I'm trying to catch up!!
After Miss C left, Mommy let me play in some gooey stuff, and it wasn't so bad. Usually I don't like to have that stuff on me, but it was ok this time. I even got a little in my mouth, but not much.
On Tuesday, we went early in the morning to see a guy who measured my feet in a whole bunch of ways for my new Sure Steps to help me stand and walk. While we waited and Mommy wrote on some papers, I played in the chair.
Tuesday after lunch, Miss Jocelyn came to see me. She's an ST and she's going to help me learn words and say words. She brought bubbles for us to play with, and I wanted to do them myself.
On Wednesday we went to see Miss Stephanie again. She helps me learn to eat too, but I got a little upset again because Mommy wasn't there. She waits out in the other room during my feeding time at that place. I don't like that so much, so next time Mommy's going in with me. I did eat some pudding though.
On Thursday, Miss Lori came to play with me. She's a PT and she's going to help me learn to walk and climb and stuff. We had a fun time, and she showed me how to climb up on the couch. I even stood up for a little while with just a little help from the couch. I think I'm gonna have fun with Miss Lori and all my new friends!!
We didn't go see Miss Brandi on Friday since it was a holiday. I'll tell you about my fun holiday weekend soon. I'm trying to catch up!!
Tuesday, July 8, 2008
Doctor Therapists Realtor
I knew this was gonna be a busy week, but today was a little ridiculous.
9 am: Braska pediatrician appt. Just to get established and make sure she had all the right info. It was pouring rain when we left, and I'm no good at kid and rain combinations. We made it barely on time. My first concession of the day was to go out in schlumpadinka fashion. Yep, I've gone there. Capris, neat shoes, and cute top--didn't happen. Yoga pants and T was it. What has happened?!?
10:15 am: Back to the apartment. It's so darn trashed there's not anywhere on the sectional to sit down. But I feel rough, so it's plop in the recliner for me while Braska plays. Dealt with some work and emails but mostly I just sat still and tried not to be dizzy.
11:00 am: Knock at the door. The PT is here. Forgot about that one. I sent an email to find out when my appt was, but didn't get a response. Darn email keeps going to spam. Ok, welcome to disaster central. Braska did great, made some big strides with pulling up to her knees at the couch. But I could hardly keep my eyes open.
12:10 pm: Feed the kid in 3 minutes. (Thank God for tube feedings at times like this.) Rock her for a minute, put her to bed, and collapse into bed myself for a quick nap. But it doesn't happen. I can't nap. I always just race through the things I need to do and what I'm NOT getting done by resting. I get so mad that I can't go to sleep that I end up more agitated every minute. I laid there for about an hour and closed my eyes even though I couldn't sleep. We've got so much to do still today! I need to get some energy!!
1:10 pm: M comes in from work for lunch. I get out of bed. I've made no lunch obviously, so he has a pudding cup and some pretzels. Thank goodness he's not a foodie. We chat a minute. He gets Braska up because speech will be here in a few.
1:30 pm: Jocelyn comes for ST. Braska plays and cooperates some. She's not much for mimicking on command yet. But she had a good time. She likes Miss Jocelyn. M heads back to work at 1:45.
2:30 pm: We leave as Jocelyn does, heading out to the realtor's office. I had texted my sister Rachel to pick me up some food on the way to meet us there since I hadn't had a chance to eat yet. She came along to corral the kiddo while we visited several places.
2:45 pm: We met up with Sandra the realtor. Headed out on our tour of 6 places. We ruled out 3, I'm on the fence about 1, and we like 2. That's not bad overall. Houses in this price range are going quickly here, so a few that we had wanted to see had already sold over the weekend. I was pleased we found a couple standouts at this price point. It was really hard to actually walk through places that we were considering. I love looking at houses. Love it! But we are downsizing, and that's proving to be more of an adjustment than I expected. We loved our 2-car garage, but no more. We loved having 2 baths, but no more. We loved our spread out room for us and guests, but no more. It will be fine. We'll have room to be, but it will be an adjustment for sure. Not to mention the pool....... but it's ok. It really is. It'll be less for me to keep up with, and I like that. I actually was pleasantly surprised, as were Rach and Sandra, at the good places we saw. I was afraid everything would require a great deal of work, but two of the options are just about turn-key. That's important since we're trying to get all this done and moved in by 8/31...the end of our short-term lease in the apartment.
5:15 pm: Back to the realtor's office. We head home. I collapse and hand Braska to M. The local DSA meeting is in 45 minutes, but nope...just can't do it.
And from that point on, my mind races. I'm replaying every bedroom, bathroom, kitchen, finishes, carpet, neighborhood, etc. I'm betting there won't be much sleep tonight. My brain doesn't have a turn-off switch when I need it. So I pray God will show us "our house" just like he did 4 years ago, clear as day. I gleaned a few little hints today, so maybe more will come. We go back tomorrow night, me and M, so he can take a look at the top 3. My hope is for a clear choice or more rule-outs.
9 am: Braska pediatrician appt. Just to get established and make sure she had all the right info. It was pouring rain when we left, and I'm no good at kid and rain combinations. We made it barely on time. My first concession of the day was to go out in schlumpadinka fashion. Yep, I've gone there. Capris, neat shoes, and cute top--didn't happen. Yoga pants and T was it. What has happened?!?
10:15 am: Back to the apartment. It's so darn trashed there's not anywhere on the sectional to sit down. But I feel rough, so it's plop in the recliner for me while Braska plays. Dealt with some work and emails but mostly I just sat still and tried not to be dizzy.
11:00 am: Knock at the door. The PT is here. Forgot about that one. I sent an email to find out when my appt was, but didn't get a response. Darn email keeps going to spam. Ok, welcome to disaster central. Braska did great, made some big strides with pulling up to her knees at the couch. But I could hardly keep my eyes open.
12:10 pm: Feed the kid in 3 minutes. (Thank God for tube feedings at times like this.) Rock her for a minute, put her to bed, and collapse into bed myself for a quick nap. But it doesn't happen. I can't nap. I always just race through the things I need to do and what I'm NOT getting done by resting. I get so mad that I can't go to sleep that I end up more agitated every minute. I laid there for about an hour and closed my eyes even though I couldn't sleep. We've got so much to do still today! I need to get some energy!!
1:10 pm: M comes in from work for lunch. I get out of bed. I've made no lunch obviously, so he has a pudding cup and some pretzels. Thank goodness he's not a foodie. We chat a minute. He gets Braska up because speech will be here in a few.
1:30 pm: Jocelyn comes for ST. Braska plays and cooperates some. She's not much for mimicking on command yet. But she had a good time. She likes Miss Jocelyn. M heads back to work at 1:45.
2:30 pm: We leave as Jocelyn does, heading out to the realtor's office. I had texted my sister Rachel to pick me up some food on the way to meet us there since I hadn't had a chance to eat yet. She came along to corral the kiddo while we visited several places.
2:45 pm: We met up with Sandra the realtor. Headed out on our tour of 6 places. We ruled out 3, I'm on the fence about 1, and we like 2. That's not bad overall. Houses in this price range are going quickly here, so a few that we had wanted to see had already sold over the weekend. I was pleased we found a couple standouts at this price point. It was really hard to actually walk through places that we were considering. I love looking at houses. Love it! But we are downsizing, and that's proving to be more of an adjustment than I expected. We loved our 2-car garage, but no more. We loved having 2 baths, but no more. We loved our spread out room for us and guests, but no more. It will be fine. We'll have room to be, but it will be an adjustment for sure. Not to mention the pool....... but it's ok. It really is. It'll be less for me to keep up with, and I like that. I actually was pleasantly surprised, as were Rach and Sandra, at the good places we saw. I was afraid everything would require a great deal of work, but two of the options are just about turn-key. That's important since we're trying to get all this done and moved in by 8/31...the end of our short-term lease in the apartment.
5:15 pm: Back to the realtor's office. We head home. I collapse and hand Braska to M. The local DSA meeting is in 45 minutes, but nope...just can't do it.
And from that point on, my mind races. I'm replaying every bedroom, bathroom, kitchen, finishes, carpet, neighborhood, etc. I'm betting there won't be much sleep tonight. My brain doesn't have a turn-off switch when I need it. So I pray God will show us "our house" just like he did 4 years ago, clear as day. I gleaned a few little hints today, so maybe more will come. We go back tomorrow night, me and M, so he can take a look at the top 3. My hope is for a clear choice or more rule-outs.
Thursday, June 19, 2008
Mommy report: 19 month update
It's hard to believe that Braska is coming up on 19 months in just a couple days. Just doesn't seem like that's possible. But what do I know... I've never done this before. I thought I'd kind of summarize where we are, partly for my use later, as the blog is my electronic baby book, and partly because there are a few of you out there who actually are occasionally interested in more info than just cute pics and giggles. Shocking, maybe.
Feeding: She's not. Period. That's the short version. The longer version is that she does sometimes accept food in small amounts and very particular situations, but it's very rare. She's still fed about 99.8% by her g-tube. She does accept drops of "milk" (Pediasure) off my finger, and sometimes dripped from a straw, while she's getting her feedings, but that's about the only consistent element of her oral feeds. We're working to get started with new OTs through First Steps and privately, and they'll focus on feeding. We've also been looking into a few intensive feeding programs around the country, but we've found that it's highly unlikely that our insurance will pay for any of that, so we're trying the outpatient OT direction first. Just as a reminder... she has no physical reason for not eating. She has no esophageal or swallowing issues. She just plain chooses not to. That kind of makes it more difficult overall. But we're working on it. And I also like to point out that her feeding issues are NOT at this point caused by her Down syndrome. Initially it was due to her heart issues which are related to the DS, but she's gone far beyond the "norm" for feeding issues with DS. I just don't want anyone to misunderstand and think that this is a "DS thing." Her oral motor skills are actually pretty good, with her speech and all... This is just a Braska thing.
GI/G-tube: Her button is doing well. The granulation that has threatened to become a bigger problem has retracted and is not an issue for now. It is a natural part of having a g-tube as the body keeps trying to get rid of that foreign object, but thankfully, we're in good shape for now.
Cardio/heart: She is peachy as far as her heart is concerned. We've had no problems, all good reports, and she has her next check-up with her cardiologist and possible echo in November. We have no reason to believe there will be anything but a thumbs up then.
Gross motor: She's just getting ready to start regular PT. She's showing interest in standing and movement, though she is pretty firm about doing it her way. She is not crawling at this point, and she's not yet able to pull herself to a stand. She stands when propped into that position and when she can hold onto something. She can scoot around on her rear end some, but she generally rolls to where she wants to be and then sits up to get into things. She'll be getting her Sure Steps in the next month or so, and that will help with proper form for standing and learning to walk. One PT that we saw recently for an eval stated that she had "the lowest tone" she had ever seen. I said that's fine, but "can you fix it??" (This refers to low muscle tone or hypotonia, a common physical characteristic of DS, but not exclusive to kids with DS.) We know we can get her there, she's just gonna have to work hard.
Speech: She does really well with her communication, though she still has delays on the typical measurements. She can say a few words verbally: up, mama, daddy, fish. (In case you missed it, see yesterday's post.) There are a few more that she's doing sometimes, but we're not yet giving her full credit yet: badger (weird, I know...see here), teeth, and yes. She can sign several, at least some version of the sign, but it's a gesture which means the same thing every time, and she can use them in context to communicate, not just mimicking: yes, no, hi, bye, milk, please, clap. On the receptive language side (things she understands but cannot express yet) she has a bunch. Our faves to have her do for "tricks" are to give kisses and hugs, give five, put things in or out of something, splash, kick, wiggle, play music, and show her teeth. She also can lay down or stand up on command (standing with hands to grab onto). We're very pleased with how well she's doing in this. We're hoping to start with our new speech therapist in the next couple weeks.
Weight/height: She's now 18 lbs 4 oz officially. She's 28.5 inches long. She's definitely small, but she's not all bones, never fear. But it is funny that she doesn't have that little round baby belly.
Teeth: She got her bottom front two first, then her top front two, and now she's got 6 coming in at the same time. And they take SO long to come in! She's working on the two on either side of the upper front two and the bottom front two, and also two molars on the top. She's getting them in a "typical" order, and so far, no super sharp ones, so that's nice.
Overall health: She still has never had a sinus infection, ear infection, or other common sickness. She may have had a cold once, but we're not sure if it was that or her teething. But I think it's great that she's never had to have antibiotics or anything prescribed for any reason except her granulation on the button.
So that's about it I think. If you ever have questions about anything, please feel free to email me. My email is always in my profile (over to the right under Contributors). I can't tell you how much it means that we have so many people who care about our little princess. Thanks for reading her stories and watching her videos and enjoying all her cuteness!
Just for those of you who prefer pics to details and jabber about therapy, here's a few more from the tiny pool days last week.
Now how do I get it back in here?
Sorry, they just don't come any cuter than that.
Feeding: She's not. Period. That's the short version. The longer version is that she does sometimes accept food in small amounts and very particular situations, but it's very rare. She's still fed about 99.8% by her g-tube. She does accept drops of "milk" (Pediasure) off my finger, and sometimes dripped from a straw, while she's getting her feedings, but that's about the only consistent element of her oral feeds. We're working to get started with new OTs through First Steps and privately, and they'll focus on feeding. We've also been looking into a few intensive feeding programs around the country, but we've found that it's highly unlikely that our insurance will pay for any of that, so we're trying the outpatient OT direction first. Just as a reminder... she has no physical reason for not eating. She has no esophageal or swallowing issues. She just plain chooses not to. That kind of makes it more difficult overall. But we're working on it. And I also like to point out that her feeding issues are NOT at this point caused by her Down syndrome. Initially it was due to her heart issues which are related to the DS, but she's gone far beyond the "norm" for feeding issues with DS. I just don't want anyone to misunderstand and think that this is a "DS thing." Her oral motor skills are actually pretty good, with her speech and all... This is just a Braska thing.
GI/G-tube: Her button is doing well. The granulation that has threatened to become a bigger problem has retracted and is not an issue for now. It is a natural part of having a g-tube as the body keeps trying to get rid of that foreign object, but thankfully, we're in good shape for now.
Cardio/heart: She is peachy as far as her heart is concerned. We've had no problems, all good reports, and she has her next check-up with her cardiologist and possible echo in November. We have no reason to believe there will be anything but a thumbs up then.
Gross motor: She's just getting ready to start regular PT. She's showing interest in standing and movement, though she is pretty firm about doing it her way. She is not crawling at this point, and she's not yet able to pull herself to a stand. She stands when propped into that position and when she can hold onto something. She can scoot around on her rear end some, but she generally rolls to where she wants to be and then sits up to get into things. She'll be getting her Sure Steps in the next month or so, and that will help with proper form for standing and learning to walk. One PT that we saw recently for an eval stated that she had "the lowest tone" she had ever seen. I said that's fine, but "can you fix it??" (This refers to low muscle tone or hypotonia, a common physical characteristic of DS, but not exclusive to kids with DS.) We know we can get her there, she's just gonna have to work hard.
Speech: She does really well with her communication, though she still has delays on the typical measurements. She can say a few words verbally: up, mama, daddy, fish. (In case you missed it, see yesterday's post.) There are a few more that she's doing sometimes, but we're not yet giving her full credit yet: badger (weird, I know...see here), teeth, and yes. She can sign several, at least some version of the sign, but it's a gesture which means the same thing every time, and she can use them in context to communicate, not just mimicking: yes, no, hi, bye, milk, please, clap. On the receptive language side (things she understands but cannot express yet) she has a bunch. Our faves to have her do for "tricks" are to give kisses and hugs, give five, put things in or out of something, splash, kick, wiggle, play music, and show her teeth. She also can lay down or stand up on command (standing with hands to grab onto). We're very pleased with how well she's doing in this. We're hoping to start with our new speech therapist in the next couple weeks.
Weight/height: She's now 18 lbs 4 oz officially. She's 28.5 inches long. She's definitely small, but she's not all bones, never fear. But it is funny that she doesn't have that little round baby belly.
Teeth: She got her bottom front two first, then her top front two, and now she's got 6 coming in at the same time. And they take SO long to come in! She's working on the two on either side of the upper front two and the bottom front two, and also two molars on the top. She's getting them in a "typical" order, and so far, no super sharp ones, so that's nice.
Overall health: She still has never had a sinus infection, ear infection, or other common sickness. She may have had a cold once, but we're not sure if it was that or her teething. But I think it's great that she's never had to have antibiotics or anything prescribed for any reason except her granulation on the button.
So that's about it I think. If you ever have questions about anything, please feel free to email me. My email is always in my profile (over to the right under Contributors). I can't tell you how much it means that we have so many people who care about our little princess. Thanks for reading her stories and watching her videos and enjoying all her cuteness!
Just for those of you who prefer pics to details and jabber about therapy, here's a few more from the tiny pool days last week.
Now how do I get it back in here?
Sorry, they just don't come any cuter than that.
Monday, April 14, 2008
Peek at tomorrow
This weekend we were at my in-laws' place for a very quick visit. We went largely for a housewarming for Cheryl and Ethon, which was Sunday afternoon. They have a pretty darn cool place, so yay for you guys!
Sunday morning pictures are normal, we do them alot. This week, before we left for church, Carole took a few pics of my little poonchin. They didn't all turn out great, as she kept making funny faces and moving at the last second. I stole them off her camera for my collection, and when I looked at this one I just kind of stopped.
Sunday morning pictures are normal, we do them alot. This week, before we left for church, Carole took a few pics of my little poonchin. They didn't all turn out great, as she kept making funny faces and moving at the last second. I stole them off her camera for my collection, and when I looked at this one I just kind of stopped.
It's not any super great picture. It's cute, but hey, how could it not be? She's waving at herself, that's the reason the hand is up. But that's not what I saw.
Go ahead, click on the picture. Can you see it?
Go ahead, click on the picture. Can you see it?
I don't see Down syndrome. I don't see a feeding tube. I don't even see a tough cookie, open-heart surgery survivor. It's not my favorite picture of her ever, but I can't hardly stop looking at it. This picture, to me, is a picture of what's to come. She looks less baby-like here. She has a whole different look to her, which I think will be amazing to compare to a 2nd grade picture or something in a few years. I can't explain it, I just see our future there. I don't think she really resembles either of us, now or in this pic, but I do see more of herself coming out in her face here. There's something grown-up about that little smile. I just can't wait to see how she grows into her personality. She's going to be one great little girl.
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