Sunday, May 30, 2010

She's Back!

Our little Sweet Pea is back...or at least almost back. Our first sign was that she woke up at 4:30am (yes, we were far from thrilled), but she was hungry! She ate only alright in the morning, but then CHUGGED a 6oz bottle at the park this afternoon. That was the first time she finished a bottle in a very long time. She had two decent sized puree meals today and had 5oz at bedtime. She really is on her way back! She played a good portion of the day. We took advantage and went to the park to enjoy the beautiful day with our happy little girl. Here are a few photos from our re-entry into society.

Saturday, May 29, 2010

14 Month Birthday

Happy 14th Month Birthday Sweet Pea!  My how the time flies.  It seems like yesterday I was writing the 13th month accomplishments...oh wait...that was because I was so late with that one!  He he he

This past month has been pretty good overall.  She has been the healthiest she has been in MONTHS!  Not even congestion for a week or two!  Well, at least until this past week when she got sicker than she has ever been.  The current illness is her first stomach virus and boy was it a doosey!  She has lost at least a pound and probably more, but I'm afraid to even put her on the scale because I really don't want to know since there isn't anything that I can do.  She is only drinking formula in two ounce increments and today she ate pears and carrots too so that is a step in the right direction.  I really hope we can get her healthy soon and get the weight back on.  You can feel the lightness when you pick her up and when you look at her you can see the rolls disappearing.  That is so hard to watch when we have fought so hard to get those pounds on.  I know that many people have a harder time than us, but we are still struggling with all this in our own way.

Feeding: She is expanding her diet to include small amounts of tomato and apple again.  Hopefully we can bring them in more in the future, but the current illness put that on hold for obvious reasons.  Sweet Pea also started to eat more textures (pieces of chicken breast, turkey lunch meat, pasta), but after our meeting with Sara Rosenfeld-Johnson we won't be continuing that until she actually starts to chew.  It's frustrating because I thought we were closer to getting her to table food and away from those purees, but we aren't.  We will be, but we aren't there yet.  Sweet Pea also started to self feed a little more, but we will be delaying that as well since purees really aren't very easy to attempt that with.

Accomplishments: Sweet Pea is beginning to put objects into buckets.  It's not smooth, but she is getting better all the time.  She is also giving objects to people and when I do songs that have hand movements like clapping (Pat a Cake) or pushing/pulling (Row Row Row Your Boat) she will put her hands on mine to do them with me.  She is also starting to get into what is called quadruped (all fours).  She does it mostly in her crib, but has done it once for me.  I hope to see it more often when she is healthy again.  She certainly isn't doing anything productive while she is sick!  Combat crawling is coming along very well.  She is starting to use her legs more when she is combat crawling and her right foot is helping her push forward.

Vocalizations:  She is also learning how to protest without just crying.  Her vocalizing is getting better and more varied even though it is still mainly da da, ma ma, and raspberries.  The ma ma and da da's are still non-specific.  Every once in a while a la will come out.  The speech pathologist said she heard a couple different vowels so I will try to get more details the next time we see her and share that.  The whale calls have virtually disappeared, but still make an appearance every once in a while. 

Weight: Was up to 19lbs 3oz, but was down to 18lbs 9oz on Thursday at the doctor and probably down to 18lbs now.

Favorite Toy: Paper, phones and computers

Favorite Song: Itsy Bitsy Spider, but likes all songs especially ones with hand movements that go with them.

Sweet Pea-isms: Fish lips!  Too adorable when she does them.  She also does a lot of lip smacking and will play back and forth with me when I do it back to her.

Sleep: No change from last month. Still goes to bed by 7pm and doesn't wake us up until 6am.  She typically has only two naps a day and one of them is often over 1 hour.  An improvement over the 45 minutes that are still her norm.

We haven't taken many photos the past few days because of her illness, but here is a video that we captured on Wednesday.  Take a look at the happy feet at the beginning!  It gets sadder as you watch as you see that she isn't healthy.  Just listen to her at the end!  Poor girl!

Poor poor Sweet Pea. Not the way we hoped you would spend your 14th month birthday, but I hope you continue to get better each day. We love you with all our hearts and it completely breaks our heart to see you so sick and unhappy. We want our happy little angel back, but I bet you want that even more than we do! Happy Birthday and may next month be even better than this last one!

Friday, May 28, 2010

Sweet Pea is getting better

Far from being healthy, but she is no longer the snuggle bug that she has been.  This morning she was up sitting and interacting with her toys.  She wasn't crawling around and getting up and down to/from sitting, but hopefully that will come soon.  I'm so glad that she obviously feels a little better at least!  She is still having it come out of the bottom end and has only had one out the top this morning so far.  Let's hope that she behaves for Grandma again today like she did yesterday.  I tell you, Sweet Pea doesn't like our house.  The moment I stepped in through the front door last night with her after she had spent the day snuggling with Grandma she started fussing!  Seriously?!?!?!  I would walk out to the front porch and she was happy, but inside, not having it.  The only thing I could think of (without taking it personally) was that the house might have been too hot for her.  I opened the back door to let the breeze in and it took an hour before she would calm down.  Luckily she calmed down just a few minutes before Daddy walked through the door so he only saw his happy baby.

Daddy's first day of work went well.  He loves the short commute!  He is there within 20 minutes and it's an easy 20 minutes...mainly freeway that is actually moving.  Yes, out here the freeways aren't often moving.  They call the 405 a parking lot for a reason.

Thanks Monica for the update on Sheridan.  Much appreciated!

Thursday, May 27, 2010

Still sick

This bug is still attacking poor Sweet Pea.  Last night was by far her worst night and today she is just a cuddle bug which is how you know she doesn't feel well.  Now that she can move she doesn't sit still for cuddles anymore.  I miss them, but not enough to wish this upon her!  We checked in with the doctor this morning just to be safe since we do have a 3 day weekend coming up.  He told us to do small meals and that if she will take formula to go with that over Pedialite or water because it has more nutritional value.  Additionally we need to focus on liquids and not worry about solids until she is feeling better.  Dehydration is the big worry and so far she is ok on that front.  We need to have 3 wet diapers within 24 hours or we have to take her in for IV.  I really don't think that will be an issue, but it is always good to know what to be looking for.

Grandma is being a life saver and watching Sweet Pea today so that I can work and Daddy can try to enjoy his first day of work!  Not the way I wanted to celebrate his first day on the new job, but so is life.  We've learned to roll with the punches in this household.  Thank you Grandma!!!!!

Random side note and I hate to post this, but I worry easily and I don't know who to ask for an update so I'll put it out here as this is such a close community...has anyone heard anything from Lisa at Genetically Enhanced about her son Sheridan?  The last post I have seen was the great post that he was being wheeled into ICU after a successful heart surgery!  But that was on Tuesday and since there hasn't been an update since then I am worried.  Prayers are going to them both and I'm hoping that they aren't needing them.

Wednesday, May 26, 2010

Sweet Pea sick again

Looks like the source of the fussiness yesterday wasn't teething after all.  Appears that she has some sort of a bug because she hasn't kept hardly anything down today.  It's been fun!  When we picked her up from school yesterday they said she had thrown up after her afternoon snack, but we didn't worry too much about it.  Then she didn't eat much the rest of the day, but did drink well at bedtime and twilight so we felt better.  This morning she sucked down 2-3 oz of formula super quick and then started coughing and next thing you know...all that formula was a shower for mommy.  Sweet pea, I know I needed a shower so thank you, but I really prefer to take one in clean water.

She is spitting up a lot and being clingy and sleeping a lot.  Poor thing!  This isn't how daddy envisioned his last day of unemployment, but it's a good thing he wasn't working today!

I guess I just spilled the beans above, but great news!  Daddy has a job!!!!  He starts tomorrow and we are so excited and proud of him!  It's not too far away and we hope he likes it!  It sure is going to be hard managing all the therapy appointments with both of us working, but we will make it work (Grandma, have I said how much we love and owe you!!!!).  If we add the speech therapy into the mix that will make for 7 appointments a week!  Yikes!!!!  Don't know if we will do that or drop something, but we aren't ready to discuss that yet either.  We have a few weeks to see how things are looking before speech would even begin.

Here's hoping Sweet Pea feels better really soon!

Tuesday, May 25, 2010

Speech & More Speech

Today has been all about speech.  Could have been dealing with three different speech pathologists today if we had the guts to...only could handle two though.  Read on for the details.

We started off the morning with an appointment with Sara Rosenfeld-Johnson.  She is a very well respected Speech Pathologist who specializes in Oral Placement Therapies.  She has done considerable work with those in the Down syndrome community and we are very lucky to have had the opportunity to meet with her again.  The first time we met with her was back in December and so this was our second meeting.  Sweet Pea has changed a lot since December so it was definitely time for a re-evaluation.  Unfortunately, Sweet Pea wasn't very cooperative as she isn't feeling much like herself today.  Hasn't eaten hardly a thing and throwing up/spitting up a lot.  Don't know why, but hopefully it will pass quickly.  Sara was able to see a little of what Sweet Pea does, primarily that she babbles with her tongue out and that her tongue is still kind of out when drinking from a straw.  She is putting us on straw #1 on her straw hierarchy with 3/4" of straw to begin with.  In two weeks we would cut that down to 1/2" and then eventually down to 1/4".  Each time we shorten the straw it makes her work a little harder.  With the 3/4" length in her mouth Sweet Pea can still do a suckle like she would with a bottle so we really haven't helped as much as we thought we had by moving her to the straws.  We also need to start side feeding her with the spoon so that she closes her lips better.

Another big change is that we need to regress to only purees because she doesn't have a chewing pattern.  We had thought we were making such progress on this front, but apparently we were just helping her learn to swallow her food without chewing it.  Whoops!  Better that we are told this now than later!  So it is back to purees for Sweet Pea, but we will continue to expand the variety by doing homemade meals and using the blender and food processor to puree it for her.

I believe the other change is that she is giving us a new treatment plan.  This time we will start with our therapist doing the exercises at daycare or the OT location until Sweet Pea is comfortable with the therapist doing them.  Then us parents and my mom will be asked to try doing them during the therapy with the therapist.  Finally when she is good with us doing them, then we will start doing it at home without the therapist there.  Who knows how long this process will take, but Sara warned us that if we rush it we could turn Sweet Pea off of all of this for years to come.  We all agree that patience is best!

Moving on to the 2nd portion of speech...we had an evaluation for speech through our insurance this afternoon.  Since we have to go through insurance for our services before Regional Center will pay for them we realized that we didn't have to wait until the ridiculous 18 month magic line in the sand that the Regional Centers have for even thinking about offering speech to our kids.  We can get it from insurance until we run out of sessions for the year and then either insurance will have to approve more or we will need to lobby Regional Center to start paying for it.  Either way, we can start getting speech much earlier than 18 months and that can do Sweet Pea a world of good!  Now trying to find a speech pathologist that takes insurance was a nightmare, but we finally found one about 20 minutes away (without traffic).  The evaluation was very thorough and Ms. Speech shared a lot of good info with us.  Again Sweet Pea wasn't cooperating, but she did show some of her skills.

Basically, Ms. Speech is a bit nervous that Sweet Pea is aspirating when she is drinking and that has been a concern of ours for a long time now.  One of the reasons that she is worried about that is because Sweet Pea sometimes coughs during feedings (mainly with liquid) and also after feeding she sounds a little gurgley.  The way she explained it is that food/liquid can sometimes get stuck above the airway instead of going down into the esophagus.  That food doesn't always make its way down into the lungs, but it could.  The coughing would be the bodies attempt to expel it before it gets down to the lungs.  She has a fairly week cough so we don't know if the cough is successful or not.

If we get approved for services (most likely we will), the gal will work with us to try to figure out if she really is aspirating or not.  Aspirating (basically food/liquid goes down into your lungs) is a VERY bad thing and we really hope that she isn't actually doing it, but we just don't know yet.  Ms. Speech is recommending twice a week therapy for the time being and hopefully the paperwork will all be approved in 2-4 weeks so we would start then.  Her suggestion for the time being were to keep Sweet Pea upright for 30-45 minutes after all feedings.  That doesn't work too well at bedtime or at twilight but we are going to do our best.  Her bed being inclined is somewhat helpful, but she said unless it is 45 degrees or higher it really isn't doing enough.  We can't get her to 45 degrees so we will just have to hold her or something.

The final piece of news from Ms. Speech was that Sweet Pea scored at the 0-7 month old level on the test!  Lovely!!!!  She thinks that Sweet Pea is probably more like a 6-9 month old, but based on what she actually witnessed Sweet Pea do today, 0-7 is where she had to score her.  Those tests are so heartbreaking!  I'm trying to not get hung up on it because I know that Sweet Pea is making steady progress, but I really hope that by adding in speech services we can see her start to at least keep pace and not fall farther behind.  Speech is our number one concern and it is frustrating that it is the one service we haven't had!  Oh well...we are working to correct that now.

On a twisted note...the speech person from our Regional Center who we spoke to for the first time last month actually called us while we were at the above session!  She left a message for us on our home line and Daddy and I haven't had the courage to even listen to it yet.  It probably doesn't even say anything, but we just couldn't handle anything more today.  This gal told us a month ago that because Sweet Pea was doing a couple of things that kids close to her age would do that she wouldn't qualify for services.  We were going to have to really fight her for a few months to get her to even do an evaluation!  After today's evaluation it makes me so mad!  The Regional Center system really is broken out here!  They have these unsubstantiated guidelines as for when speech services should even possibly be considered and to get an evaluation you have to convince their internal speech person that it is needed.  This person who works for the Regional Center and therefore is going to follow their guidelines!  It's insane...but I will get off my soapbox now because we are lucky enough to have good insurance and hope to be rescued by them. (knock on wood)

To sum up what we learned today...we have a lot of work ahead of us!  We thought we were already doing a lot with/for Sweet Pea, but apparently we need to be doing a lot more.  It's so hard!  We try to be good parents, but her needs are so much higher than we ever anticipated and we feel like we are falling way behind.  We will have to get our daycare to start doing these new things too, but we will make it work.  Some how, some way, we will make it work.

To end on a sweet note...her are some pictures from our trip to the park this weekend.

Hang on tight!

Best Daddy Ever!

Such excitement!

I love the flying hair!

Daddy and his little angel

Finally warming up to the slide!

She really is smiling!

Sunday, May 23, 2010

Another milestone reached

I'm so proud of my little girl...she continues to amaze me time and time again.  You will have to read through this long post to see what that milestone was though...

Daddy's birthday was on Monday and while we didn't share Daddy's brownies and ice cream with Sweet Pea, we did let her have a little fun.  We opened up a jar of Gerber Stage 3 Sweet Potatoes thinking that they would be thicker and she could feed herself. Unfortunately, they were just as runny as the Stage 2, but that didn't stop us.

This one reminds me of those drunken mug shots that is all the fad with the Hollywood celebs:

And my favorite:

These next 2 videos are long so those of you that don't care, you can just skip right over them. These are more for our family that don't get to see her much and want more than 30 second clips.

Here is a video of Sweet Pea playing with a new toy we got off of Freecycle. She loves it and picked up what to do with it right away.

This is during Infant Stimulation on Friday. Sweet Pea was doing really well with putting the blocks in the container until the camera came on. Apparently she doesn't like showing off for the camera.

And now for the grand finale...Saved the best for last...this one is VERY short, but that is due to Mommy not using her brain on Sunday. Let me give you a lot of background first...

I believe I've mentioned this before, but let me restate it for anyone that has missed it...Sweet Pea HATES to work and I mean HATES. Our new PT has been a tremendous help in finding ways to get her to "work" without her realizing that she is working. We've been trying to get her to kneel for what seems like months now and really weren't getting anywhere. Here is a photo of our new PT "working" with Sweet Pea in kneeling.

Each day Sweet Pea is kneeling for longer and longer.

On Friday I noticed that she was starting to crawl using her right toes a bit. I wasn't going to post this video, but I can't describe what I'm talking about and this one shows it. Please don't mind the drool...we live in a constant state of drool here and it drives Daddy bonkers!

I've also caught her bringing her knees up under her when she is laying on the ground. She has done this in the crib for a long time now, but that is with the incline that I think helps her because she didn't do it on the ground until this week.

The combination of all these new tricks made me not completely surprised when I saw her up on all fours this morning in her crib. I was still thrilled and had to snap more photos. Her feet are against the end of the crib which makes it easier. Poor girl can't get her hands to stay out of her sleeves!

This morning we were just about to leave the monthly playdate that our local DS support group organizes when I decided to check her diaper. False alarm on the diaper, but she rolled over and started entertaining some good friends. She tried to get up on all fours and scooted backwards twice and then she did it! She got up on all fours in the middle of the floor with no help and then she even started rocking!!!! I couldn't believe it and since everyone there was connected to DS they also were very excited. It's nice to be around people that understand that we get small breakthroughs and need to revel in them because we know how very hard our kids had to work to get there. I was too busy being happy and cheering Sweet Pea on to even think about getting the camera out. When she finally stopped she laid back down but only stayed down for a short time. She then decided that she liked the reaction that she got and wanted to give us an encore. She got up on her very first try this time and we again were cheering her on. Mommy's brain finally clicked in when I realized that Daddy would probably want to see this and I grabbed my camera out of the purse and got it to the right setting just in time to capture this short video:

Now that she can get onto all fours, I am curious how long until real crawling happens! I'm not ready yet!!!!! We have 1 outlet cover installed in our entire house and that was just installed this weekend. I think it could be a couple months before we see real crawling, but I'm excited none the less.

Thanks for sharing in our excitement!

Friday, May 21, 2010

Perfect Name: Sweet Ella Grace

I have fallen in love!  Sweet Ella Grace is just that...sweet!  So adorable and I wanted to eat her up!  I was lucky last night and was able to visit with Denise and Ella before a seminar that I wanted to attend at CHOC.  I know many of you are jealous and I have to say that you should be!  I knew she was cute from all the photos and videos that her mom has posted, but I never expected her to be so precious.  We had fun making faces at each other and her laugh is absolutely contagious.  I thoroughly enjoyed chatting with Denise and getting to know her a little bit more.  She is an amazing woman and watching how effortlessly she juggles everything blows me away.  Ella is a lucky little girl to have Denise and I am a lucky gal to have met both of them!  Here are a few pictures of Ella I was able to snap:

I'll continue to think positive thoughts for Ella and I can't wait to visit with them again!

Thursday, May 20, 2010

What Would You Do?

I've seen a number of my fellow bloggers write about this episode last night and Carrie actually posted a link to watch the entire segment. I had taped it but hadn't watched it yet and so I watched it over my lunch break and all I can say is wow! It broke my heart to see how so many people stood by and watched the cruelty occur. I was thrilled to see the few people that did actually stand up, but it really shows how far we have to go. Tears fill my eyes when I think of someone saying that to Sweet Pea! I know it will happen someday because we do live in a society that is far from perfect, but that doesn't make it any easier to swallow. I only hope that it is many years down the line when it does happen because I'm not ready to handle that yet and I'm afraid I won't be proud of my reaction. Daddy might be thrown in jail if he is the one that encounters it first! No one better mess with his little girl!  Here is the clip...

On a happier note, I get to meet Ella and Denise tonight!!!!!  I can't wait!!!!

Wednesday, May 19, 2010


Sweet Pea amazes me more and more every day and yesterday was no exception.  She was doing PT with her new PT and Daddy.  I was in the back still working, but I could hear them.  Sweet Pea did something that I have never heard her do...she would let out exclamations of protest instead of just crying.  I can't describe it in any manner that would do it justice, but suffice it to say that she was very clear in her signal that she wasn't happy and didn't want to be doing the work that she was doing.  It was exciting and yet heart breaking at the same time.  The excitement was because it was clear that she was learning how to communicate more effectively and heart breaking because she needs to work but REALLY hates to work.

The therapy sessions are so hard because she really hates to work.  Our new PT is MUCH better and we are very happy that we made the switch.  I still wish that I had done it earlier, but I'm trying not to kick myself too much over it.  Our old PT was not very personable and didn't know how to make any of the session fun.  Our new gal still pushes Sweet Pea hard, but also understands how to get the most out of her without her realizing that she is working.  It's all about trickery with Sweet Pea.  We can slowly get her into positions if we do it slowly step by step and slowly increase the difficulty.  Putting her directly into a tough position is fruitless.  I don't know if her stubbornness is a good trait or not, but she sure has it!  It must come from her Daddy's side of the family...(tee hee hee)

Perfect end to the day: Sweet Pea gave her daddy an unprompted kiss last night after her bath.  Daddy had given her a kiss while they were playing in front of the mirror when she then turned to him and gave him a big wet one on the cheek.  She sure knows how to melt his heart and wrap him around her finger.  It will serve her well for years to come!

Finally, thank you Meridith for reminding me about this..."Video footage from NDSC's "We're More Alike Than Different" campaign will be included in tonight's edition of ABC's "20/20: What Would You Do?" at 10 PM ET/9 PM CT. The segment will use an actor with Down syndrome to portray a grocery store bagger who is berated by a customer (another actor). The question posed by the television show is, what will other shoppers do? Hidden cameras reveal the answer and speak to the need for us all to advocate for workers with disabilities. In a clip from the NDSC video, self advocates Christi Hockel and Mark Hublar are shown at their respective real-life jobs at Safeway and Wal Mart, demonstrating that employees with Down syndrome are more like their colleagues than they are different. Ask your friends and neighbors to watch tonight's show and then ask them, "what would you do?" You might discover that you have a wonderful opportunity to educate and advocate! "   I don't normally watch this show, but I have already set my DVR for this one episode.  I sure hope they do it well!

Sunday, May 16, 2010

Happy Almost Birthday Daddy!

Today we celebrated Daddy's almost birthday. Since I have to work tomorrow, we pretended today was his big day. That really only meant he got to sleep in and not do dishes today. No, he really would say it was a good day. We went to a park that Daddy hadn't been to before and we played and enjoyed a nice picnic lunch by the lake. Too bad my battery died or we would have some better pictures of the park instead of just these few.

I'm not sure I'm going to like this.  Mommy, are you going to rescue me?

I'm not sure I like this...Daddy, don't let go!

I definitely don't like this!

Switching who "helps" me down doesn't make it any better guys!

Swings!!!!  Now that is more like it!  Thanks Daddy!

The higher the better!

You would have thought Sweet Pea ate the brownies that I hadn't even made yet for her Daddy with how active she was this afternoon. She crashed hard like she would have if she came down from the sugar high. The brownies didn't come out of the oven until she was in bed though so I know that wasn't the case. Here is a video of just a snippet of her energy this afternoon.

Random side note: It's amazing how many times we find ourselves around special needs kids when we didn't expect to be. Today I decided to park in the very back section of the park that I wasn't even really sure even existed since I was going off of memories from 15 years ago. Turns out that where I was planning on parking was right by a baseball field. I got parking fright and jumped out and had Daddy parallel park for me and while he was working his magic, I noticed that this wasn't just any little league game that was being played. Almost every kid had someone else with them and it was very special in so many ways. A parent was walking past and I asked him what kind of game this was and he awkwardly started to say that it was a game for special needs kids when I interrupted and said, "Oh, our daughter has Down syndrome". At this point the man appeared to become completely relaxed and shared that many of the kids on the team had DS and told us all about the program that they are a part of. He gave me this website and it seems like a great group and I hope it is still around when Sweet Pea can participate! 14 months ago we probably would not have even noticed that there was something special about the game. We lived in a bubble and I am not proud of it. I am glad that Sweet Pea has opened my eyes to the world around me and I know that she will positively impact many other people in her future.

Friday, May 14, 2010

TGIF - Art Time

It was art time at daycare again. Her wonderful teachers took these awesome pictures!

Wednesday, May 12, 2010

Nearly Wordless Wednesday

Finger food time:

Mommy gave me a spoon!

Mommy, stop taking pictures of me!

Mommy, look what I painted for you for Mother's Day:

And a special bonus paint job:

I'm just adorable aren't I?

Anyone seen my fish lips?

Daddy & I love watching hockey together: