Thursday, June 24, 2010

Doctor Updates

Sweet Pea made the trip to Children's Hospital again today and visited her GI & ENT.  Spending 3 hours in waiting rooms and exam rooms will test her patience on a good day, and today was not a good day.  She survived though and we made it through both appointments.

GI: We sat in the exam room for 70 minutes before the doctor came in.  Yes, I'm annoyed!  Moving on...The reports from the radiologist and OT of our swallow study still weren't complete so I tried to share what I knew...which wasn't much.  The doctor was concerned that she was aspirating and wants us to follow the recommendations we were given.  Hopefully the report will be available soon and it will give us more information.  Until then we are continuing to use the Simply Thick honey for all formula and liquids and we are going to be adding baby cereal to any purees that are too runny.  He wasn't concerned that she is still spitting up typically between 2-4 times a day sometimes much more.  It's frustrating, but I'm hoping he knows what he is doing and that we aren't overlooking something.  He does want us to do another test...this one is the stomach emptying study which tracks digestion for an hour to see how fast (or in Sweet Pea's case...slow) her stomach works.  Since she spits up hours after eating, this is a concern.  To end on a good note, he is happy that her weight gain is ok...not great, but not bad.

ENT: This appointment was much better as he is normally very timely and he was this time.  Both her ear tubes are still in good position and don't look like they are close to coming out.  This is great news since we were told that they could be out in less than 3 months.  We are at the 3 month mark and still looking good!  We talked about getting a sleep study and he is going to put in the referral for us.  He wasn't really recommending we get the study though because he doesn't think there is much to do even if she is having apnea issues.  Let me try to explain it as he did...there are two kinds of sleep apnea...obstructive and central.  Obstructive is just as it sounds...something is physically obstructing the breathing.  Central has to do with the brain and sending proper signals out for proper breathing.  The most common "solution" for apnea is to wear a nasal cannula that blows oxygen into your nose.  Most kids rip those out immediately and so they don't do any good.  Daddy & I believe that it is better to at least know what we are dealing with so that we can make informed decisions.  If she does have sleep apnea, I want to know how bad and then determine what we need to try to do.  Hopefully she won't have it and this will all be a moot point, but time will tell.  The wait for the sleep study could be 3 months so I'll keep you posted when we actually get it scheduled.  We go back to the ENT in 3 months again.

To end this post on a high note...Sweet Pea displayed a new trick today.  You know those toys that are a bucket and they have a lid that has different shape cutouts in it?  We have an older one that only has 3 cutouts and I thought I would try it out with Sweet Pea and see what she would do.  I covered up two of the holes with my hand so that she only had one choice and she picked right up on it!  The circles and triangles went in quite easily, but the squares proved to be a bit more difficult because they almost fit sideways, but not quite so that kept throwing her off.  She is far from good at this, but it's a start!  We transferred this new skill to her milk carton toy that has a slit in the top for the cookies to go into and she did that too!  We've just left the lid off figuring that she wasn't able to do this...who knew?!?!  I will have to ask daycare if this is something that they have been working on with her.

Tuesday, June 22, 2010

Modified Barium Swallow Study

Today we had the modified barium swallow study to determine if Sweet Pea is aspirating. Surprise surprise...she is! I wish I had trusted my instinct a lot more and pushed to either have this done sooner or at least start modifying how we feed her to try to avoid it. It is extremely frustrating that she is 14 1/2 months old and I'm sure she has been aspirating for some time now and yet we only get confirmation and are told what we need to try to do today. Oh least now we know...

The study itself was really easy. I have posted a video of the view that I saw since Daddy was in there with his little girl. It's interesting to watch, but I can't tell what I'm looking at. I believe what we were told is that she was aspirating on the thin liquid and only penetrating on the nectar thick liquid. Penetrating is when it isn't going into the airway, but goes over the opening to the airway. When there is penetration there is a high chance that at some point some food goes down into the airway. We should get the report next week so hopefully that will make it a little more clear.

We were given some SimplyThick "honey" to add to all her formula and so the price of her formula just went from gold to platinum! We haven't done any research on this stuff yet, but hope to soon. It's supposed to make the formula into a consistency similar to that of honey.  The thought is that the thicker the liquid, the harder it is to aspirate because it stays together better.  Our main concern is that it contains citric acid and since she isn't allowed food with that, is this going to be an issue? We are going to try it for a few days and see. Hopefully it won't be an issue. The other issue that it seems we are going to run into is that it continues to thicken as it sits. Since we make formula up in batches for both us and for daycare, that is likely to be an issue. We tried it tonight and she can drink it from the straw okay, but the nipple that we have for the bottle is really too small. She was able to get it, but it took a lot of work so we will have to try something else.

If anyone has experience with thickeners I would love to hear about it.

We see the GI on Thursday so I'm glad we got this study completed before that.

Oh, and for those that asked why I suspected aspiration was occurring:
  • coughing as she drinks
  • gurgling/wet sounds after drinking
  • a gut feeling for months
Honestly, I remember many months back looking up aspiration and being worried about it, but when we brought it up to our GI he wasn't concerned.  Unfortunately, we let it go for a while and didn't press it.

Oh, and we thought she might be finally over that Hand, Foot & Mouth Disease, but tonight there are fresh bumps on her bum so I'm afraid we aren't through with it yet after all.

That's about all the bad news I can handle in one day so I'm heading for bed.  Before I go, here are some cute pictures from the day...

Waiting to be called for the study:

Hanging out in the chair before the study began:

Sweet Pea being a goof while Daddy looks like one in his lead outfit:

My view of the study:

Monday, June 21, 2010

Hand Mouth & Foot Disease

I've been slowly working on this short post for the past week or two and yet still haven't completed it. Here is my last attempt...

Probably old news to most of you, but since it's such wonderful news I will share it anyway...Sweet Ella is in remission! I had Ellen in my lap as I read the post and when I started clapping, so did Ellen! She too is very excited!!!!! They still have 5 more rounds of chemo to make sure they catch every last bad cell, but this is great news!!!!

Sweet Pea is putting herself into kneeling from a seated position quite regularly now and is even trying to pull herself to stand using us sometimes. She will often launch (and I mean full force launch) herself at us when we are laying down next to her. I think the momentum helps her get up somehow. But if she is close enough for the launching to place her up on us then she pops up on her feet right away. She will even lunge over the top of us to try to get toys that are on the other side which is when she will go head first down the other side of us. Luckily she doesn't cry about it too often and it's quite entertaining to watch!

Her standing is really improving as well. She will move from a seated position (up on our legs or a small box) into standing and maintain the standing for a couple minutes now. It's such a change from a few months back when she refused to put any weight on her legs. I don't even have to hold her anymore, she can lean on the furniture to stabilize herself.

One of the reasons this blog post has been so slow in coming is because Sweet Pea got sent home from day care last Thursday with Hand, Foot and Mouth Disease (HFMD). It hasn't appeared to be painful for her, but I think the lesions in her mouth must hurt because she really slowed down her eating. She had a rash all over her arms, legs and bum that first appeared last Monday and we thought it was an allergic reaction to either the peaches or the squash that she had eaten. We didn't do anything about it because it looked minimal and didn't seem to bother her. Well, apparently a couple other kids at day care had it too so on Thursday they were all sent home and off to the doctor we went. She weighed in at 19lbs 9oz! She is slowly gaining weight and I'm good with slow and steady. The doc said that there wasn't anything we could do for HFMD, but to let it run its course and if she was irritated by the rash to give some Benadryl. We haven't needed to do that and she is eating a lot more now than she was last week so I think we are on the road to recovery. We went back to the bottle because she was drinking more from it than she would from a straw so hopefully we can get back to the straws soon enough. Her rash is almost gone and hopefully she will be able to return to day care tomorrow if it is completely gone.

Speaking of tomorrow, Sweet Pea has her modified barium swallow study tomorrow afternoon. That is where they feed her food and liquid that has been laced with barium and "watch" internally what path it travels to determine if she is aspirating and if she is, then they try to thicken the foods to try to figure out how to stop the aspirating. We are glad to be finally getting this done and hope that Sweet Pea cooperates for it! I'll let you all know how it goes!

We had a good Father's Day and took a trip down to the beach. Sweet Pea put her feet in the sand, but that was about all she wanted to do. The sand was really hot so we had cleared off a section so her only wanting to put her feet in was ok by us. Next time we will take her down to the water and see what she does. She isn't a fan of cold water so I am not hopeful it will go well, but we shall see. I'll try to get some pictures posted in the next few days.

And finally, here is an amazing post on Living Life with E'sthat was written last weekend and it hit home in so many ways. It was great to see a post written by a dad, but what he wrote was even better.

Sunday, June 20, 2010

Hubby makes me smile

Another lost post.  This one is probably what I'm saddest about having been delayed.  Daddy is the best father and I'm a lucky girl to have him as my husband!!!!!

In honor of Father's Day...we enjoyed a walk at the beach...

And one of the best quotes that Daddy just said, "You do most of the Sweet Pea work when you are awake." For those of you that actually know me in real life you know what a true statement that is! I love to sleep and luckily Sweet Pea takes after me in that regard.

Friday, June 11, 2010


Friday's are a great day because I know that I have a fun weekend coming up and get to spend a lot of time with my little princess. It's the anticipation, the excitement and the celebration of the end to a long work week and the unknown of the weekend ahead.

Sweet Pea was happy that it was Friday too!  This morning she was so happy that she even let me practice crawling up on all fours with her!  This is an exercise that our new PT taught me earlier this week.  I hold her belly with one hand and with the other hand I move one of her arms forward.  Then I switch hands and move her alternate leg forward and then the arm on that same side.  Then switch arms again and repeat.  When our PT did this with Sweet Pea on Tuesday, little missy was not happy about it, but she did it.  When our PT showed me on Wednesday how to do it, Sweet Pea was still mad about it, but again she did it.  Imagine my surprise when I tried it this morning and she didn't even protest a little bit!  She even moved her own arms and legs forward a little!!!!!  I didn't get any video as I only have two hands, but I will try to get some this weekend to show you the miracle...if it repeats.

Here is another great video that CBS did on the wonderful local ballet class for children with DS here in Los Angeles.

Have a great weekend!!!!

Thursday, June 10, 2010


Sweet Pea seems to develop in spurts...nothing seems to happen for a while and then whammo...a whole bunch of new skills. Let's see if I can capture of few of these new skills to share with you all.

Playing with her bear and other stuffed animals. Every little one in our family has one of these bears as do most of the little ones in this town! A very special lady makes them with a matching blanket and Sweet Pea's youngest cousin has taught us a thing or two about just how loved these bears can be! "BBBeeaaaarr"

She also has learned to army crawl much farther distance. Here are a couple of video clips of her going across the living room yesterday. I was thrilled with this because she had never gone all the way across before. However, this morning near the end of infant stimulation I used the most expensive toy (extreme sarcasm) as a motivator...printer paper! I actually got her to crawl all the way across the living room, down the short hallway around the corner and to the edge of the kitchen. She put one hand on the cold tile and started protesting. It seemed like she would keep crawling so I jumped over her and she turned around and retraced all her steps back to the living room. I was thrilled that she had let me mess with her for so long so I finally let her play with the paper. Proud Mommy!!!!! I know I'm going to regret teaching her that she can leave the living room, but it will be good for her in the long run. Now I need to start working with her on the tile a little bit. Although, maybe it is good since there is one step down from the kitchen that could cause us problems with her...hmmm...decisions.

Sweet Pea also decided to show me up today by very nicely placing toys into the bucket after I told the infant stimulation teacher that she was still pretty spastic in throwing the toys into the bucket most of the time. That's my girl!

And finally, her babbling has just taken off! She still doesn't say anything that we can understand and the sounds themselves aren't expanding that much, but the amount of time that she spends babbling is really expanding.

Daddy & I love you Sweet Pea!!!!!

Wednesday, June 9, 2010

Wordless Wednesday

A perfectly good bath...ruined...

It only took 14 months for it to happen.

Tuesday, June 8, 2010

Addressing Feeding Issues for Children with Down Syndrome

Another lost post...

Finally putting up some notes from the seminar that I attended at CHOC in May.  These notes are for use in addition to the handouts as I didn't want to redo what was already written up.
  • It's okay to play with your food
    • Make it fun and enjoyable
    • If they will tolerate it on their hands, they will more likely tolerate it in their mouths
  • Start offering a variety of textures early on
  • Hypotonicity causes our kids to have to work that much harder to activate the movement (for feeding or play) and so they fatigue that much quicker.
  • Tapping (pinpoint instead of broad touch) their face may work better for our kids because of the hyposensitivity.  Typical kids might prefer the broad stroke, but our kids often crave more input than that provides and the finger tip provides that.
  • Metal spoons: Use two and have one in cold water and the other in warm water.  Alternate between them to wake the mouth up.  You can do the same with sour & sweet tastes and spicy & mild.  Other good things are cinnamon extracts, peppermint extracts and pixie sticks.
  • Kids like to have control so give them choices between two things that both meet your goal...example: if you are trying to work on textures you can give them the choice of vanilla pudding or chocolate pudding or for chewing it could be between the green chewy tube or the red chewy tube.
  • Use of token system for rewards: small reward of sticker at each successful task completion and they add up to one larger reward (playing in the ball pit) if they get 5 stickers.
  • No grazing between meal times - research shows that children take in less total calories when they graze.  3 main meals with 2 snacks is a good plan.
  • Straws & whistles are great for getting the tongue back where it belongs and working on lip closure
It was a great seminar and I'm thankful for DSAOC & CHOC for putting it on!

Great Article

Thank you Kelli for posting this great article which really gives me hope that I will eventually get to the same point.  I've definitely come a far distance in the past 14 months, but I can't claim that I am there yet:

Don't forget to keep voting every day for the DSAOC clinic ( and Duke resource program for children with Down syndrome (  DSAOC dropped to number 70 so we need to keep voting in order to help them win!!!!

I got a call from our PT that today's session went well.  Sweet Pea protested a fair amount, but she kept working through it which is very important.  Thank you Grandma for being able to cover these sessions while I work!  I feel so much better having you there and I know Sweet Pea does too!!!!

Monday, June 7, 2010


I love to celebrate anything...birthdays, accomplishments, the end of the week...anything!  This past weekend we did all of that!  I don't have copies of most of the good photos yet, but will try to get my hands on them later this week.

We headed up to our local mountains for a relaxing and fun weekend with family and friends.  The only downside of the weekend is that when we are up in the mountains we have to share a room with Sweet Pea.  The issue with that is that she isn't the quietest sleeper.  She cries out and moans in her sleep a lot!  She doesn't normally actually wake up, but when you are in the room with her, you wake up!  And in the morning she thinks that 5:30am is when she should start to wake up, but she doesn't just wake up.  Oh no, she fights it and whines and half sleeps for 30 minutes.  Oh well, being up there with the fresh air and beauty is well worth it.

As I mentioned on Friday, we were going to be celebrating Papa Bear's (Sweet Pea's great-grandpa) 90th birthday.  Mama Bear had fooled him by only telling him that it was his family getting together where it was really about 50 people when it was all said and done.  It was great and I think he really enjoyed it.  Sweet Pea was in a fussy mood for a good piece of Saturday with a slight fever that we assume was related to teething.  She fell in love with one of my mom's college girlfriends though and seriously lounged on her for 2 hours!  Since Sweet Pea wouldn't sit still or be content anywhere, this was insane!  Thank you Mrs. M for your magic touch!!!!!

By the time Sunday rolled around Sweet Pea was in a much better mood and her fever was basically gone.  She was energetic and did a few things that I loved:

First, she got up on all fours over and over and over again!  She hadn't done it more than a few times since the video we posted a couple of weeks ago.  I assumed that was because she got sick right after that, but this past week I had hoped to see it more, but I hadn't.  Until Sunday!  She did it over 20 times that day!  Nice job Sweet Pea!!!!

It was my morning to get Sweet Pea on Sunday so when she woke up at 5:30 with her whining I took her out of the bedroom so Daddy could sleep.  She then slept on me in the living room until just about 7am.  The instant she woke up, she heard her cousins behind her who had been playing very quietly on the floor for over 30 minutes which is amazing since they are 3 & 5!  She popped up on her arms and spun around and gave those adorable cousins the biggest smile!  For a little girl that normally wakes up a little slowly, there was no delay at all this time!  She was ready to "play" with them immediately!  Those three kids are just too cute for words.

The other big item of note was that she was sitting on my leg and pushed to stand a few different times without me trying to get her to do it.  The first time I was in shock that she was even trying it!  I used my arms to stabilize her as she doesn't have the balance, but she was doing great!  She would groan and cry out as she was doing it, but she was doing it of her own volition!  When she would get up there she would clap and have the largest smile on her face!  I think she was trying to show off for her cousins and I loved it!!!

It's supposed to be a pretty boring week here.  Absolutely no doctor appointments and nothing else scheduled outside of the typical therapy.  Let's hope it stays as boring as it is supposed to be!!!!

Friday, June 4, 2010

Happy Happy Friday!

I attended the weekly OT session that happens at Sweet Pea's daycare today for the first time in a couple of months.  Oh my goodness how things have changed!  The last time I was there they were doing the therapy in the employee lunch room which was fairly cold (during winter) and just not an inviting place.  Sweet Pea quickly realized that when she was brought into that room that she was there to work.  It got so bad that she would start to cry the second she was brought into the room!  I don't remember how it happened, but somehow they tried doing the session in the main infant room and it went so much better!  Since then they have been doing it in the infant room each week and I've heard great reports of how she only has minor crying sessions, which I'm all too accustomed to.

Today was different and I'm not sure I believe what I witnessed!  She didn't cry or fuss even once the entire 50 minutes!  I loved it!!!!  And even more importantly, Sweet Pea loved it!  She played and played and rocked on all fours and played and played some more.  She was all smiles and grins and waving her hands in excitement.  Such a change!  For those of you who know how much I've struggled with whether these therapies were worth the aggravation that they cause Sweet Pea, this helps confirm that we've been doing the right thing for her.  Switching PTs was the first step and I think everything is falling into place behind that.

The therapist brought out her etch-a-sketch and I asked if she ever drew anything to which I was told "no, she just plays with the string and the pen and mainly just tries to put it in her mouth."  Again, today was different!  She actually drew on the screen!  And not just once, but a number of times!  I didn't get any pictures of it, but trust me, she did it and I couldn't be prouder.  I'm going to have to call Daddy and share the news with him.  Is it bad that I write the blog before I call him?  Whoops!

We are celebrating Papa Bear's 90th birthday this weekend so I am very excited!

Happy Friday to all!

DSAOC in the running for $250k

I just received this notice from DSAOC and it looks like they are trying to win $250k for a DS clinic.   Please take the time to help us out!  This would be an expansion of the DS clinic that we went to just this week that is only open twice a month currently.  Expanding it would be wonderful!

Vote every day in June!

*** DSAOC Pepsi Refresh Project***

We just wanted to update everyone and let you all know that after just two days of voting we have risen from 143rd to 65th.  We are grateful for each and every vote and especially thankful for our dedicated "Refreshers" who are rallying family, friends, co-workers, neighbors, classmates and other people in the community to our cause.
If you haven't registered yet, please go to to register.  And don't forget, you need to vote each and every day in June at
While you are at it...Duke is trying to create and educational resource program for children with DS.  They are in the running for $25k and so they aren't in competition with one another.  Duke is currently 59th.  Here is the link to vote for them too.  You have 10 votes per day so you can easily vote for these two every day!

Thank you for helping our families!

Wednesday, June 2, 2010

Visit to DS Clinic Today

This morning Sweet Pea had an appointment at the CHOC DS Clinic.  This clinic pales in comparison to so many others across the nation, but it was nice to speak with one doctor who has a lot of exposure to DS and who knows more about DS and the ancillary issues that it can bring along.

The doctor loved how social Sweet Pea was and Sweet Pea was being a bit of a ham for her.  She had a British accent and her phrases were so cute that I think Sweet Pea was enjoying the novelty of it.  She spit up a number of times during the one hour appointment so the doctor would like us to let our GI know.  She says he might add another medicine to her Prevacid.  Her spit ups increase with her activity, but her activity is only going to continue to increase so we need to do something.  We see the GI at the end of the month so hopefully we can get some more answers then.

The two things that we really got out of the appointment today were a referral for a sleep study to check for sleep apnea and a referral for a swallow study so that they can verify if she really is aspirating.  Both have been things that Daddy & I have thought about, but hadn't pushed for yet.  It is comforting to know that we aren't loony for considering these issues and it will be better to have an answer once and for all.

For those that don't know, children with DS (and adults with DS as well) have a much higher chance of having sleep apnea.  Sweet Pea's slight snores, constant congestion and how a lot of the time she angles her head back as far as it can possibly go were the reasons for wanting the sleep study to be done.  This doctor recommended that all kids with DS have a sleep study done by the age of 4, but didn't want to wait for Sweet Pea.

You might remember that we briefly mentioned the swallow study last week after we had our appointment with the SLP.  The purpose of it is to determine if she is aspirating (breathing food/liquid into her lungs) and I believe to also determine what kinds of foods she does aspirate on since it isn't necessarily everything.  If she is aspirating, it can be very bad for her lungs.  Since she hasn't experienced pneumonia we may not have an issue, but pneumonia doesn't always happen when aspiration is just often does.

We are keeping our fingers crossed that both of these tests turn out to be a complete waste of time, but we will sleep better at night knowing that we didn't ignore something that should be looked into.  I have no idea how long it will be until these tests happen, but we will keep you posted.

Oh, and a few interesting "facts" that the doctor shared with us today:
1) People with DS tend to be really good at remembering dates.  Sweet Pea can be my own personal calendar...goodness knows I need one!  Looks like I might not be forgetting all of your birthdays a few years from now!
2) People with DS tend to be more prone to get periodontal diseases and cavities.  Let's hope not!
3) People with DS tend to be visual learners.  We already knew this one, but it's always good to have a refresher.  She says how they learn math and reading will be different so to keep that in mind.  Maybe that is why so many of our kids have such success with Baby Signing Time?
4) Kids with DS have a higher chance of falling into the autism spectrum.  She didn't see any signs of it with Sweet Pea since she was so social, but it was interesting to hear.  I had never heard it before, but know of a few people with dual diagnosis.  That would be tough!

Tuesday, June 1, 2010

Sara Rosenfeld-Johnson Presentation

Sara Rosenfeld-Johnson re-taped a speech she gave at the American Speech-Language-Hearing Association and posted it online for all to view.  I believe that this can be a great link to share with your OT or SLP to get them on-board with Sara's programs.  It is a large file so give it time to download, but if you are interested in Oral Placement Therapy and Sara's techniques, I highly recommend it.  FYI - The playback would stop on me when it had run out of downloaded/spooled material and I would have to wait until more spooled up before I hit the play button again.

Also, here is an article that she recommended I provide to our SLP.

I really hope that our SLP will be receptive to watching and reading these!