Happy 18 Month Birthday!

Is it just me or can anyone else not believe that Sweet Pea is a year and a half old today! It seems like just a month or two ago that she was a newborn blob and now she is into everything, crawling everywhere and just a roaming disaster girl! Oh how I love her!!!! I was going through old photos today and I was amazed at her transformation! There were even some photos that I wasn't sure it was her or not because she has changed so much.

These past couple months have been amazing with Sweet Pea. She really is learning something new every day. I know that this explosion of new skills will eventually plateau, but boy am I enjoying every day of it while it lasts! The joy that emanates from her when she does something new is beyond words and her Mommy and Daddy are so very proud of every single accomplishment because we know how hard she has been working to achieve them! We love you Sweet Pea!!!!!

Gross Motor Milestones:
Crawling: Sweet Pea's crawling has definitely taken off. It's far from textbook, but she no longer uses her army crawl to get anywhere, it's all hands and knees...or in her case, hands, knee and foot. She uses her right foot to push off and then slides her left leg/knee forward and under her bum. It's an interesting technique, but it works to get her from point A to B to C to D. I love that she decides to go from one room to any other room whenever she feels like it. It's such huge progress!!!! It was just 2 months ago that we had to coax her into moving rooms and we were the only motivation that would make her do it. Now, we can be in one room and she will leave us to go play in another!

Standing: This is another area that has seen huge gains.  She pulls to stand on just about anything that she can grab onto...my legs, couches, tables, etc.  She is trying to do it against walls, but isn't quite there yet.  We definitely need to work on the endurance with her, but I have a few ideas of things to try (thanks to Pat Winders Gross Motor Skills in Children with Down Syndrome book) and will keep you all posted.

Cruising: For those that don't know, cruising is basically walking while holding on to furniture.  We didn't really plan to start working on this milestone, Sweet Pea just started to do it.  She only does it a tiny bit, but since she is doing it without any coaxing from me, I'm beyond thrilled!  On Sunday she stood up at the couch, cruised the 12 inches to my legs and then cruised another 12 inches from my legs to the coffee table where the computer was.  It was slow going, but she did it!  One foot after the other and eventually she got to the computer keyboard which, unfortunately, I had to reward her and let her play with for a few seconds (this is a very dangerous thing as Sweet Pea finds keyboard combinations that we often don't know how to undo).  Since she started to do this on her own I guess I will add it to the list of skills to work on.

Climbing: We live in a one story home with just one 6 inch step separating a room.  Sweet Pea mastered that step all on her own.  We have tried stairs on a play structure at a local park and I think they will work okay, not great because they are hard on the knees, but it is better than nothing.  At home we used the couch to practice climbing and as you saw in this post, she has almost mastered it.  She still doesn't always go far enough forward before trying to sit, but we will continue to work on that with her.  She has also learned how to climb down!  She doesn't always do it, but a couple different times I can tell her to come down and she will go from sitting down to her belly and scoot backwards off the couch!  This little girl really picks things up quickly...when she wants to!

Walking: We have a stroller that we have weighed down and she is using that to take one or two steps.  I am not focusing on this until we get a little better at the standing and cruising, but thought I would include it so we have a starting point.

Language: I don't want to sound like a broken record, but language is another area that she has really been growing quickly in.  While her vocal expressive language isn't doing a lot (only new sound that I can think of is "va"), her signing is making some good strides.  Just yesterday she started to do "more" with her fingers instead of just clapping.  Sometimes it takes a little prompting, but it is so cute to see her do it because she looks at her hands and you can see the wheels turning in her head as she does it.  And the smile that she gives when she does it and we are so proud of her...well that smile just melts my heart!  We are also working on getting her "dog" sign to be down on her thigh instead of on her belly.  She is getting better, but I think it will take a little longer as the practice sessions are much shorter for dog.  The signs that she knows now are: more, all done, eat, please, thank you, bye, dog, book, and she is starting to do baby, up and open.  She can identify her head and can get her mouth about half the time.  In terms of receptive language, she continues to amaze us by what she understands.  It's always amazing to see her comprehend something that we say and actually do what we say.  Doesn't always happen since she can be stubborn, but that is okay.

Eating:  This continues to be a challenging area for us as it seems to be for many parents.  Sweet Pea REALLY wants to be eating what we are eating, but her chewing and swallowing aren't up to par yet.  We have found that ground meat is definitely the easiest for her to manage so we can get enough quantity into her before she is too tired or bored.  Noodles, breads, pancakes, waffles, chips...basically anything carbohydrate related...are huge successes.  Soy yogurt is a fairly consistent hit.  Bananas are hit or miss and we need to find more fruit that she will eat.  Baby food is rarely successful for us, but daycare has pretty good luck so we can at least sneak in her fruit and veggies at daycare.  We have recently brought back in cream cheese, pudding and cottage cheese in small quantities and those are working well so far.  The biggest issue that we are afraid of is an increase in her reflux. 

Weight: 22lbs 2.5oz

Height: 30.5 inches

Therapy:  We are certainly in a transitional period in regards to her therapies.  She started the center based therapy classes last week and will be attending them Monday, Wednesday and Friday mornings.  Speech will remain on Tuesday and Thursday afternoons as we don't have any choices for that.  We have cut PT and OT to once a week for the next couple of weeks and for right now, PT will be Tuesday afternoon and OT will be Thursday morning.  We aren't ready to make a decision on asking for her services to be reduced to once a week for both PT and OT since we don't know how the center based therapy is going to work out yet.

Toys:  The seahorse is still her favorite, but she also loves a book that has buttons that play sounds.  It's a Thomas the Tank Engine book, but I think I will need to get a few more of these as she absolutely loves it!

Sweat Pea-isms:  Her latest adorable trait is her little cackle that she does instead of a full laugh.  She doesn't always do it, but it's becoming more common.  I do love her regular laugh though so I hope that it doesn't disappear, but the cackle is pretty funny.

Sleep:  Knock on wood...this area has improved again.  She has started to sleep through the night again and will often not even wake up for her twilight feedings.  Daddy and Mommy are very, VERY, happy about this change and we hope that it continues!  Mommy will take Sweet Pea for a sleep study in a couple of weeks to try to get an explanation for how restless she is when she sleeps.  Let's hope it isn't anything to worry about.

Overall Health: She has had a cold or allergies or something since Labor Day weekend.  She wakes up extremely congested and does not clear up completely throughout the day.  She has even been coughing up phlegm (TMI...sorry) the past few days which is just lovely.  Hopefully she will get over this soon.  Daddy thinks it is from our mountain trip over Labor Day, but I think it is just coincidence and refuse to blame the gorgeous mountains for these many weeks of aggravation. The heat wave that we had this week (105 when the average temperature for this time of year is 76) gave Sweet Pea heat rash, but it is dissipating as the temperature drops. She isn't letting anything slow her down though!

Center Based Therapy Started

Warning:  Extremely long post...again!

We received the approval for Sweet Pea to start center based therapy on Tuesday and so she went to her very first class on Wednesday! She will be going Monday, Wednesday, Friday and her first two days went great! Wednesday she was fussy all morning so I was more than a little nervous about how it would go. We left home about 8:20, but not before Mommy attempted to get a first day of school photo of the little girl.  She wasn't cooperating, but these didn't turn out too bad considering her mood.

 

We arrived around 8:40am, but she had fallen asleep in the car. I tried to get her out without waking her up, but managed to hit her head on the car trying to get her out so that was an utter failure. Poor girl not only got woken up, but rudely! She calmed down very quickly and so we headed in and she got right to playing. She played with blocks and a musical instrument and everyone was coming over to introduce themselves and meet Sweet Pea.







After class officially started at 9am we went into the OT focused therapy group and played in the room with swings for the first 20 minutes.  Sweet Pea was crawling around a bit and watching the other two kids in our group.  She then got adventurous and crawled through a little tunnel they had created:







After that we attempted to put stickers onto the sheets of paper on the wall.  Sweet Pea loved the stickers, but when she would put one on the wall, she would then peel it back off.  That was working her fine motor skills so that was fine, but it was pretty funny.  Then she decided that ripping the big pieces of paper on the wall was more fun so we ended that game after a few futile attempts at getting her to behave.

The second part of the hour long focused therapy group time was spent in the speech room where we worked on putting little animals in and out of bags.  Then we moved onto playing with pegs in the pegboards.  A couple of her other therapists have this toy and so it wasn't new to Sweet Pea, but she had never before (that I'm aware of at least) stuck a peg into the hole without assistance.  She did on Wednesday though!!!!  Only one, but I was very proud of her and she was pretty darn proud too.  I didn't capture it on film, but here are some of her playing with the toy anyway:





After focused therapy group time ended we had a nice little snack where Sweet Pea enjoyed some vanilla pudding and goldfish crackers.  She is supposed to use a paper towel as her plate, but she insists that it is to be tossed onto the floor and the crackers are to be eaten off the table directly.  That isn't a battle that I'm going to fight, but the teachers said that most kids do that so maybe eventually she will learn since the other kids all seem to.

When snack time ended we moved to circle time and sang a few songs and then split into the first of four 15 minute centers.  Sweet Pea was directed to the ball pit first and that was a good choice since she loves the ball pit!







That is the end of the photos because the speech therapist pulled me aside to get a detailed history on Sweet Pea.  I spent the next hour with her going through what we do for oral motor and speech and everything else even slightly related.  Sweet Pea lasted about halfway through the four 15 minute sessions and then something set her off and it was touch and go from that point on.  I let the therapists/teachers/aides try to calm her since they will need to be able to do it while I'm not here.  It is really hard to sit and listen to your little girl cry, but I knew that she wasn't in pain or anything, she was just tired.  I collected her about 11am and tried to feed her some milk as it seemed she might crash out on one of the gals and I really wanted to get some food in her before she took what I knew was going to be a long nap.  She rallied after the milk and was able to join the group for closing circle time and was trying to climb and stand all over the place so she had definitely rallied.  When class ended we gathered our things and left and not 2 minutes into the drive home, Sweet Pea had crashed out and remained that way for 90 minutes (don't worry, I transferred her into her crib when we got home).  It was a very successful first day and I couldn't be more proud of Sweet Pea or happy with our decision to push to get approval for center based therapy.  Some of our therapists put up some minor roadblocks during the approval process, but we got around them and I am so thankful that we have a great service coordinator (not everyone is as lucky in that department as we are) who helped fight for us.

Grandma took Sweet Pea today (thank you grandma...again!) and she had a funny story to share.  Apparently the kids are supposed to come with shoes and socks and in the last portion of the class before closing circle time the therapists help teach the kids how to put them on.  When they asked Grandma if Sweet Pea had shoes, she said no.  When they thought that Sweet Pea just didn't have shoes with her today, Grandma had to let them know that no, it wasn't just today.  This poor neglected child who has a severe addiction to people's shoes, doesn't actually own any shoes that fit her!  Her feet are too chunky for the few pairs that might fit in length.  Now that I have been shamed, I guess I need to take her shoe shopping this weekend so she at least has A pair of shoes!

Today they did a couple of evaluations to gauge where Sweet Pea was developmentally in OT and speech.  In the OT evaluation session they watched how she crawls and plays with toys like the pop up ones that Sweet Pea adores.  Then they moved to a table and watched how she plays with small toys, putting objects into containers and something with pieces of playdough (need to get details from Grandma on that one since Sweet Pea normally just puts the playdough in her mouth).  Sweet Pea performed really well during the evaluation and the OT commented on how she uses both her right and left hands when playing with toys and that she even does well crossing midline when she picks up pieces and puts them into something.  This is great news because many kids (even typical kids) can have issues with crossing midline sometimes.  (Here is a quick article that speaks to why crossing midline is important if you are curious.)

During her speech evaluation today (different therapist than is there on Wednesdays) they did some songs, bubbles with careful enunciation of "bubble" and "pop" since /b/ and /p/ sounds clearly show what the mouth is doing, they worked to get her sign for "more" to be more accurate instead of just clapping and during that worked on the /m/ sound, did a little work on learning "I want" and picking between two objects and ended with some work on the sign for "open".  I am beyond thrilled that they are working on actual speech sounds with her since our current speech therapy that we get via insurance doesn't do hardly any speech sounds, they focus on the feeding...which is important, but I want Sweet Pea getting both so this is wonderful.

Apparently they do a bike "parade" the last week of the month out in the parking lot and since Sweet Pea didn't have shoes, nor can she ride a tricycle of any sort yet, she got a ride in the wagon.  This will be yet another area that will be fun to watch how she progresses!



Looks like she made a friend today!


One final story from today's session...when the parents drop the child off in the morning they bring a toy from home with them and put it in the "sharing box".  At the end of class, right before they wrap up circle time, the teacher picks out one toy at a time and the kids go up and get their toy.  I thought a small sensory ball would be a good idea because it was small and didn't make noise.  Well, yet again I was wrong.  Turns out that a ball is a bad toy to bring in because Sweet Pea knows that you are supposed to throw balls.  That meant that she would throw the ball into the middle of the circle.  I'm sure Sweet Pea was trying to go get the ball after she threw it too!  I think the staff got a kick out of it today, but I don't think they would appreciate it on a regular basis since the kids are supposed to stay in their seat before/after they get their toy back.  Live and learn.

That was Sweet Pea's first two days at center based therapy.  I am so happy she is going and I know that this is going to be wonderful for her!

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!