Wednesday, April 28, 2010

Nearly Wordless Wednesday!

It doesn't really count when I put the words in a video does it?  ;-)

Please ignore the proud mommy cheering in the background. Until today Sweet Pea would cheer when she got up. Apparently once she could do it without help she didn't think it was worth cheering for. This evening is her first time really doing this and she did it over and over and over again in the 20 minutes we were playing. Apparently once she gets something, she really gets it!

Also, Sweet Pea army crawled to greet me at daycare today!  She has never done that before!  I was so very proud of her!!!!  I've always watched longingly at the parents who are nearly knocked over by the running hug that their kids give them.  This was my very own slow motion version of it and I loved every second!!!!  There really are benefits to raising a child in slow motion!

An hour early, but happy 13 month birthday Sweet Pea!  We love you!!!!!

Saturday, April 24, 2010

Catching Up

I feel that I should apologize for my dramatic drop in postings recently.  It has been hard to find the time or motivation to write anything that would be worth of reading.  Sweet Pea isn't really doing anything new and we are just muddling through here.  Some days we feel better than others, but overall things are good.  Let me try to think of all the things that I haven't shared recently.

Skills:  Sweet Pea is definitely creeping a lot more.  She moves around a lot in a small area and moves for whatever she wants.  We have a clear bin of toys and she creeps over to it and tries to grab things out of it.  I love that she is moving where she wants to go and know that it is just a matter of time before she is moving more than a few feet.

She is also working hard at learning to go from laying to sitting.  We jumped the gun when we announced that she was doing it.  I don't know if it was just the bed or what, but she hasn't repeated that yet.  She is definitely getting closer and we only have to put a little bit of pressure on her opposite hip for her to get up, but we do have to help her get started.  She is so adorable when she gets up because she starts clapping and gets the biggest grin!  We eat it up and feed into it as having her happy about making progress is a-ok in my book!

Sweet Pea is also working on the sign for milk.  Tonight at the grocery store she did the funniest thing!  She was riding in the cart and I was pushing it.  I had stopped for a minute while Daddy was looking for something.  Sweet Pea lifts her arms up and pats the sides of my boobs with a big grin and then with her right hand does the milk sign.  It could have all been coincidental, but we just cracked up!  First of all, she has not had any breast milk for almost a month now.  Secondly, she has NEVER patted my boobs like that or anything close to that before.  And we have only seen her do the milk sign a couple of times!  It seems impossible that she was really doing that, but who knows!  It made us smile though and sometimes that is enough!

I weighed her on our home baby scale the other night before a bath and she was finally over 18lbs!  She seems like she has grown in length too, but I'm thrilled that she is gaining at least a little weight.  That is about a pound in just under a month and I'm definitely good with that rate.  We don't know if it is because of all the dairy fat she was getting for a week or so there or just because she is finally eating again.  Either way I'm happy!  After we introduce a few more foods we will try some dairy again in lower quantity and see if her mini vomits start up again.

Speaking of food, we are trying all sorts of new things with her.  She is enjoying the tofu in chicken broth.  We gave her a lightly steamed carrot stick and while it worked well for trying to get her to bite on it, we had a hard time keeping her from choking on the pieces that she would eventually bite off.  When she finally gets a bite to break off she certainly isn't going to allow Mommy or Daddy to get it out of her mouth.  Any suggestions on what we can do?

We have her hearing test scheduled for the first week in May and hope that she passes with flying colors.  I'll feel better when we know the results.

Today was our second time to attend the DSALA Basketball Program and Sweet Pea actually started somewhat rolling the ball.  She is more swatting than anything else, but she is getting the concept down.  She has fun watching the other kids and loves that people find her so adorable and she just wraps them all around her little finger.

We also attended a Baby Signing class through DSAOC and I have to say that we were very disappointed with it.  They spent the first 45 minutes of the 2 hour class telling us why signing was so important.  We all knew that it was important and that is why we had paid the money and taken the time to attend the darn class!  I had hoped that they would have setup the class to be more about teaching sign to our kids with Down syndrome, but it was almost 100% a canned presentation that they would have given to a group of typical parents.  It was frustrating since it was through DSAOC.  Oh well, we still picked up a few things so it wasn't a complete waste of time.

Tomorrow we have our local support group play date and those are always fun.  It's nice getting to see all the other kids and their parents.  We always have some interesting therapists volunteering their time as well so we get some different ideas.  We always look forward to it.

Here are a few photos that we have been slow to download to the computer...

Poor Daddy was just trying to enjoy a glass of wine at the end of dinner.  Sweet Pea may not always eat or drink her own food, but she will always try to have a part of what we are having.  Too bad we normally have food that she can't have!  I really can't wait until that is no longer the case!!!!

She is so proud of herself and just so darn cute!

Birthday balloons provided a lot of entertainment!

She is a music girl alright!  This is her at her Wednesday morning OT session.

Monday, April 19, 2010

Great video

We were introduced to Luke Spinelli at the Tools for the Journey conference this weekend.  This is a great video that he did as his senior project.  Gives us hope as to what Sweet Pea might be able to do when she gets older.


Sunday, April 18, 2010

Tools for the Journey Conference

I would like to thank Club 21 for putting on such a wonderful conference "Behavior and Social Skills for an Inclusive Life"!  The speaker was Rick Clemens who is the Director/Founder of Inclusive Education and Community Partership (IECP).  The main purpose was to train parents and educators on how to not only ensure that our kids are fully included in schools, but how to make that inclusion successful.

There was so much covered, but I will give you just a few key take aways that I learned.  Some are relevant now (IFSP) and some will be relevant when Sweet Pea is in school.
  • The more inclusion the better when the child is properly supported and positive.
  • Properly supported does not always mean a one-to-one aid as that is actually often not the best path since that can mean the kid is in the back of the room with his aid and not really being included.  The better option would be to have the other students helping when necessary and setting up the environment so that an aid isn't necessary.  This is obviously not always an option and I don't have a clue how to implement it, but it is good to have that as a goal so that we can be thinking about it when the time gets closer.
  • Don't speak about the specific disability label (ie Down syndrome), instead speak about needs and challenges.  Some regional centers or schools will say for example, "behavioral services are only for kids with Autism", but if our kids require the services, they should get them too.  There isn't anything in the laws that limit any services only to specific disabilities, they talk about when the services are required for a child.
  • After the budget cuts in CA they stopped funding camps and some other services.  That is fine because families without disabilities have to pay for their child to attend camp.  The key is that although the RC doesn't have to pay for the camp any more, they should still be providing the behavioral supports to allow our kids to participate in those activities.
  • Always put a behavior goal in your IFSP to help cover you in a variety of situations.  
  • Inclusion is not about changing the child completely to fit into the environment, nor about changing the environment completely to fit the child.  Inclusion is where the child and environment fit together naturally (think of a blue circle and a yellow circle and overlap them together and the green area that is created is the match area.  The goal is to have both adapt some to increase the size of the overlap between the two.  Match area must grow over time or something is wrong and not working properly.  When the matched area isn't growing, look at the environment first before trying to modify the child. 
  • Planning ahead is imperative as it is easier to learn appropriate behavior initially instead of trying to erase inappropriate behavior.
  • Planning ahead involves planning for the adults, child, peer & the environment.
  • During the assessment, look at the environment, needs, etc and maybe an aid is needed at certain times, but not 100% of the time.
  • Keep in mind what you are trying to accomplish, just being there isn't enough of a goal.  Having fun, academics, etc are ok goals and we just need to know what the goal is before we can modify an environment to help achieve it.
  • Priming is preparing a child for a situation or experience.  It can be just talking to them before you go somewhere to let them know what to expect or it can be more elaborate and include showing them pictures from the internet of the museum that you are going to and talking about what is appropriate behavior and inappropriate.  So many situations can be helped by priming the child before hand.
  • Try to participate in community programs that others in the child's class are participating in because kids play more together and are better friends when they are in multiple activities together.
  • "The mere diagnosis of a disability does not warrant more rigorous expectations of behavior for the child."  This really made sense, but it is sometimes hard for us since we don't necessarily know what is age appropriate behavior.  They recommended looking at an activity and seeing what other kids are doing and then looking at what your child is doing.  Ask other moms of typical kids if their child ever does x.  This doesn't mean that if your child is 5 that it's ok if they are acting like a 2 year old if when another child was 2 they acted that way.  It's at the same approximate age.  A 12 month old would not be expected to be quiet in their babbling in a public place.  That's not a free pass for inappropriate behaviors, but it is something to keep in mind as we run into those issues.
  • Goal is to have peers support child because friends teach friends.  Make peers aware of the strengths and weaknesses of child and what support they can give to help.  Be specific with how peers can assist child. Tell teacher that it is ok to discuss child's disability.  You have to waive your confidentiality otherwise teachers can't discuss.  Waive in either a letter or in IEP.
  • Ability Awareness: All students have their own strengths and weaknesses.  Teach about strengths and weaknesses of child with disability.  Elicit support and educate the students on how to help the child the best.
  • Create environments that facilitate natural social interactions.  If child sits by herself at recess, try to get a social club (drama, etc) created that child and others would want to participate in.  
  • Try natural friendships before peer buddy models
  • There is less downtime in schools so we need to adapt schedule so child gets the breaks she needs.  Setup smaller sections for child and allow them to have a break between activities instead of moving from one to another.
  • If you want to be kept up to date on how your child is doing in their class create a checklist with yes/no and fill in the blank questions.  Keeps it more objective.
  • Cole & Meyers did research on inclusive education results: 75% meet goals in inclusive settings vs 50% in special ed classes.
  • When learning a new skill mix in a challenging new task with a mastered one.  If addition problems are mastered and subtraction is new, do addition problem, addition problem, addition problem, subtraction problem, addition problem, addition problem, addition problem, subtraction problem.
  • If dealing with teasing: 1) Ability awareness 2) elicit support of cooler kids 3) turn to the no tolerance policy
Turns out there were more key points than I thought.  I hope this helps someone else as it was very informative for me.

Thank you Auntie and Cousins for watching Sweet Pea so Mommy and Daddy could attend the conference!

Friday, April 16, 2010

New Skill!

Look what Sweet Pea showed us she could do today! Sorry for the poor quality, I was standing far away with the camera zoomed in so that I didn't distract her and the point and shoot camera's video doesn't work so well zoomed in.

The gal with her is our wonderful Infant Stimulation gal. Sweet Pea really likes her and shows off new skills to her quite often.

This happened shortly before we had her 1 year IFSP review. Turns out that our prior goals weren't as insane as they first appeared. We had only been given the rough draft that didn't have the sub goals broken out on it. We now know to make sure that we get the final version! We have asked for a speech evaluation so the speech person is supposed to call us on Tuesday and will likely try to get out of doing it. Speech is so important to us and it is frustrating that in CA (at least Southern California) they don't offer speech until 17 mths at a minimum. There are a lot of us trying to fight the system right now, but it really feels like a losing battle. The good news from the meeting was that they approved funding for the conference tomorrow so that is $150 that we saved! And no change in our services since we already are getting PT twice a week, OT twice a week and infant stim once a week.

Thank you to those that posted comments about good goals! I feel much better about what will be on the new IFSP than what was on our version of the original!

Thursday, April 15, 2010

Update from week of doctors

This week Sweet Pea had visits with three of her doctors.  Don't worry, two of them were just regular follow ups.

We started the week off with an early morning visit to the ophthalmologist.  She was happy to see Sweet Pea's eyes were working together well with the glasses on.  She didn't even look at her without them.  She wants to see us again in September so I guess that is a good thing.  This lady rushes us in and out of there so fast it is very disconcerting sometimes.  Oh well...all is well and we should be happy.

From there Daddy proceeded to take Sweet Pea to the ENT for a re-check after her recent cold.  She got the all clear!  No infection or fluid!  We were/are thrilled!!!!  She has been pulling at her ears a lot recently so we had convinced ourselves that she had another infection.  The doc says that many kids pull at their ears when they are teething so maybe that is it.  Who knows...but I'm just happy we didn't have to make the decision to do antibiotics or not.  We were getting worried that we had been giving her too many in the past 5 months and didn't want to give her more.  Avoided that decision for a little while longer!  We are going to schedule a hearing test and also investigate getting molded ear plugs so we have them when we need them.

Two days off from doctors and then we went to the GI today.  A few weeks ago during the EGD they had done a biopsy of her stomach lining to see if there was any damage being done by the reflux or the constant stream of antacid.  The best news here was that the biopsy came back negative!  He also gave us the go ahead to bring back other fruits except true citrus (orange, lemon, lime, etc) and soy!  I need to find some good tofu recipes because I think that would be a texture that she could handle.  She weighed 8.09kg with her clothes on (disposable diaper) which I believe equates to 17lbs 13ozs so apparently the all cheese diet is working for her.  He recommended that we continue to mix the dairy products with veggies and try to slowly increase the proportion of veggie to dairy.  He confirmed what our pediatrician had told us about her thyroid test being ok, the T4 was 11.8 mcg/dL and the TSH was 5.1 uIU/mL.  I guess having the TSH over 5 isn't a good thing, but since the T4 was an ok number they weren't concerned about it.  Makes me just want to keep a close eye on it in the future, not that I have a clue if that is necessary.

He was a little concerned (as we have been) about the coughing during feedings and wants us to meet with a feeding specialist to determine if there is an issue.  He is putting in the referral so it will probably take a few weeks for us to even get the call to schedule that.  He mentioned something called microaspiration, but I can't find much online about it.  If anyone knows about microaspiration I would love to hear about it.  I am trying very hard not to worry about it until we are told there is something to worry about, but I would still like to have a basic understanding.

Enough about the doctors...Sweet Pea had a good week outside of them.  She is finally back to her happy self and is showing everyone with lots of smiles and waves.  Her desire to army crawl is still minimal, but it seems to be ever so slowly increasing and that makes me happy.  I work with her on it every chance I can and it is fun to just get down and play with her and make her want to come to me.  I can't wait for the day that I leave the room and next thing I know I turn around and she is right there again!  I know that I am going to bite my tongue because it means chaos will ensue, but I'll still be happy.

Here are some pictures from her OT session on Wednesday.  This is the one that we go to an actual therapy place and so we get to use all their equipment.  In the past we have spent our time upstairs focusing on oral motor mainly, but I think we are going to be starting to spend the first half of the session in the downstairs play area and I'm looking forward to it.  They have so many fun things to explore and I just know that Sweet Pea will enjoy it.  So far we explored the ball pit while sitting on a "surfboard" (aka a carpet sample), the swing and a very big exercise ball.

And this is Sweet Pea in her doorway jumper that I believe is the reason she is starting to put weight on her legs.

Here are a couple of videos:
Sweet Pea likes to treat her water bottle as if she were attacking it...this doesn't do her attack justice, but you get the picture.  The beginning part is the attack, then she decides she would rather just keep her mommy busy.

This is her playing with bubble wrap with daddy.  He was doing some sensory work with her...aka fun with different textures and she was fascinated with the bubble wrap.

I hope everyone is having a good week!

Sunday, April 11, 2010

IFSP Goals?

We have our IFSP meeting on Friday.  I really like our coordinator, but I don't like our original IFSP.  We had no idea what we were doing as it was done when Sweet Pea wasn't even 2 months old.  So for a child that wasn't even 2 months were her goals:

1) Will be able to take steps independently.  She will begin to trot/run with good balance and control.


2) Will jabber closed mouth sounds in response to play stimulus and family.  She will begin to jabber "mama" and "dada" non specific.

At one year she is doing "dada" non specific.

3) Will be able to use a neat pincer grasp and play with manipulative toys.

Still not able to do pincer.

As you can see, we need some help!  Can you share what some of your goals were from the ages of 6 mths to 18 mths?

We get PT twice a week, OT twice a week (one focuses on feeding) and Infant Stimulation once a week so our services are pretty good.  I don't know what effect the IFSP has long term, but I would like to make it a little more pertinent to where she is today and where we want her going.  All you parents that have done this before...please help!

Catch up

Sorry for being out of communication for the past week or so.  Not much to share and even less time to share it!

Sweet Pea started to get sick on Sunday...luckily it was the day after her party!  We had family over for Easter and it was a very nice day.  On Monday she got sent home from daycare and only made it back there on Friday...and only for a few hours because they sent her home again because she wouldn't stop crying. They said she probably wasn't completely healthy yet, but she was just fine when we brought her home so who knows.  I really hope she doesn't try that trick again tomorrow, but if she does we aren't picking her up!  I never thought I would be happy to have Daddy unemployed, but when Sweet Pea is sick and Grandma is out of town, it is actually a very good thing!  Her fever wavered between 99 and 104 for the first couple of days and she again wouldn't eat.  We started her on some cottage cheese (3/29) and cream cheese (4/3 birthday cake frosting) and now yogurt (4/10) and those seem to be the only things that she will eat now!  We bring them out and she gets so excited!  The downside is that since we aren't sure how dairy will react with her we are trying to do small portions.  We are trying to mix them with anything that we can (much to daddy's disgust) in hopes that she will eat more.  It's an ongoing battle and so far we are on the losing end.  We have also gone back to bottles in hopes that she will eat more because it is easier.  Not really making much of a difference, but at this point every extra ounce counts.  We meet with the GI on Thursday so we will see what he says.

On a happier front, Sweet Pea has learned a couple of new tricks...1) She gives kisses!  Wet, slobbery, tongue included kisses!  We kiss her on the cheeks and make the kissy sound and now she gives us kisses back when we ask for one!  It's very cute!  She started this on Monday and would just give you one if you put your face right up to her cheek.  By Wednesday she would lean over to give you one!  2) We are trying to not allow her to have more food if she still has food in her mouth so I stole a trick that my sister used with her boys..."Mouth Check".  You say mouth check and she is supposed to open her mouth.  We have been practicing this only a couple of days and she is already getting it!  I'm so proud of her!

We are still working on her army crawling and since she doesn't want to move on her own, we are working hard to motivate her.  We are using anything we can think of.  If we are going to give her a bottle then we make her crawl a foot or two to get to it.  We put her down a couple of feet from her toys.  We move her favorite toys after she has played with them for a few minutes so she has to move to get them.  Basically just don't make anything easy for her.  Alright, so we still find ourselves forgetting to do this a lot, but we are working on it.  She is definitely getting faster and we will just keep working on it.

Another area that we are working on is getting her to kneel and also put weight on her legs.  She is getting better at both of these.  We haven't used the doorway jumper more than 4 times since we got it, but I really think that is what got her bouncing.  She isn't bouncing a lot, but if we hold her on my lap she will bounce a bit.  It's a start and we have a long way to go, but I'm excited that she is even starting!  We aren't trying to get her walking anytime soon because we understand the importance of crawling, but she has to start allowing some weight on her legs to EVER stand or walk.

I think that about sums up our world here.

Sweet Pea's Birthday Party

I started writing this many days ago now and obviously never got around to completing it...let's try again...

We celebrated Sweet Pea's first birthday for the last time on Saturday, April 3rd.  It was a wonderful day shared by many friends and family!  The weather even cooperated and we did it all outside...which is a really good thing since our house is tiny.  Thank you to everyone that shared this special day with us.  It was truly a celebration of surviving the first year and we couldn't have done it without everyone!  We have been blessed to be surrounded by such love and support and Sweet Pea is so lucky to have such a great network surrounding her!

Here are tons of photos from the great day!

Family photo

Cousins went to a easter egg hunt before the party which explains the adorable bunny ears

I love this kid!!!  Always adorable!

Sweet Pea's cupcake

Aren't these cakes amazing?!?!  I loved them!  Thank you Auntie J!  You did great work on the entire party!

Good clean bubble fun!

She looks a bit nervous about what is to come...

She refused to use her hands!  And I love the feet!

Apparently the plain old whipped cream cheese for frosting was a hit! 

Finally the glasses are helping us!

Papa Bear...I love you!

The cousins made beautiful butterflies out of coffee filters and closepins.

Auntie J and the cousins scattered butterflies throughout the yard and the kids had to collect them before they decorated them.

Sweet Pea had a hard day, but she was a trooper through it all!  She didn't want to miss a minute of the action!

Maybe she will choose to become a dental assistant as she certainly examines all of our mouths plenty!

And more presents!