PT: Week 16, Get Motivated

Averi was even less excited than usual to go to PT today.  It might have had something to do with her pooping twice while we were there, but I don’t know for sure.  (Good thing they keep extra diapers there because I didn’t bring enough.)

We are still working on the same stuff and waiting for Averi to figure out how to do it on her own.  Abbi swears that with a little coercion in the right direction, Averi is getting in and out of sit all by herself.  She’s especially good at getting out of sit, with a little help, because she just drops onto her face with no help from her arms whatsoever.

She just fights it so much.  She will go from perfectly content to screaming and arching her back as soon as Abbi starts to move her because she knows that work is coming next.  I have really been trying to work on it more at home and I sometimes wonder if doing it too much is frustrating her because now she even gets mad when I try to help her.

Abbi says that if we could just find something that motivates her enough to want to move, she will do it.  Now, if I only knew where they kept that magic motivation stuff, Averi would be doing a lot more (and me too). =P

Here's something she does get motivated for - getting tangled in her tube.  I walked away for a couple minutes and came back to this.  Seriously.

OT: Week 24, Honey Bear

The Honey Bear works!  Dan picked up the honey bear for Averi this week and immediately called me to find out why he had to stop at the hospital for something we could just buy at the store.  I explained that the honey bear had an expensive straw inside it and then he was more understanding.

After only a few times using it, Averi is drinking from a straw like a pro.  I can squeeze the thickened liquid up to the top and then she does all the sucking and drinking all by herself!  She even takes several consecutive swallows.  For never figuring out the bottle she is excelling with a straw.

Frances was also amazed.  After Averi took a whole feed (3 oz formula, 1 oz apple juice, 4 tsp oatmeal to thicken) she looked at the clock and stated that this was the fastest feeding session we had ever had.  She then said that we need to up the straw feeds to twice a day.

Since we had time, Frances got out some mixed fruit and mashed up the peaches and pears.  She tried feeding them to Averi on a spoon but Averi did a really awesome job spitting them back out.  This will be our next goal since straws are going so well, but like everything, it will be a process.

PT: Week 15, Bye-bye

In super exciting news, Averi did a first today!  Some friends came over after PT and one of them has an 8 month old.  As they were leaving we all said bye-bye and waved and waited for Kayla to wave back.  All of a sudden, Averi picked up her arm and started waving her hand!  I blew it off as coincidence at first until I realized how much concentration Averi was putting into it.

I have been working on waving with her for a while and she will open and close her hand if I hold her arm up but this was totally all by herself.  I tried to get her to do it again after they left so I could get it on camera but the peer pressure was gone and she just laughed at me.  I was so excited I called Dan.  I can’t wait to get her to do it again so I can prove to myself that she knew what she was doing.

Physical Therapy went well today.  Averi’s core just keeps getting stronger and stronger.  I’ve been really diligent this week about making Averi get in and out of sit when she starts getting bored with one position or the other.  I also make roll onto her side and sit up in bed before I pick her up after she wakes up.  I like to think that it is helping.

I told Abbi about how well Averi did with standing on Saturday so we tried it out a little today as well.  She was really impressed with Averi’s progress.

For some reason, Averi was really fighting side sitting today so Abbi got out a flat square that can rock back and forth.  Averi was a little bit happier on it but she refused to lean over with the tilt and put her hands down beside her.  Instead she just really worked her core muscles and did everything in her power to stay vertical.

I wish there was a magic way to stop Averi from fighting PT so much.  She puts way more work and energy into trying to get out of doing stuff than just doing it would use.  This week I got her into four-point and she held it all by herself for quite a while.  She would never do that for Abbi, which I guess is why my patience and determination between sessions is so important.

Beverly

The girls and I made a trip to the store today and we got as far as walking into the produce section before Kaili started talking the ear off one of the employees.  They visited for quite a while before I was finally able to pull Kaili away from the lady, who I had learned was named Beverly.

As I finished grabbing my veggies Beverly walked up to me, smiled, and explained that she had this strong feeling that she needed to tell me something.  She then proceeded to tell me the story of the last 10 months of her life:

After ten years of trying, she had finally gotten pregnant.  Then, ten months ago, she lost the baby after 5 months of pregnancy.  She had lots of complications with the pregnancy but an autopsy was done and they found out that the baby had Down Syndrome.  They also discovered that her husband’s chromosomes don’t respond well to hers and they will probably never be able to have children.

She glanced at Averi, then looked me square in the eyes and said, “You have no idea how blessed you are.”  My heart ached for her and I just wanted to reach out and hug her.

After leaving the store, I couldn’t get Beverly off my mind.  I don’t know if she needed to tell me her story but I definitely needed to hear it.  Averi has been hard to care for from day one and I often complain about the tediousness of the job, but she truly is a blessing in our lives.  I wouldn’t trade her for the world, even if it does mean I get all her ‘baggage.’

I am so grateful for a stranger that took time out of her day to remind me just how lucky I am that Averi is still with us and I can cuddle her all I want.

OT: Week 23, Apple Juice

After being on vacation and not seeing Frances for 3 weeks, she thought Averi looked older and that her sit was much stronger.  Slow as it may be, I think my baby is growing up.

I kept track of everything Averi ate while we were gone and showed it to Frances.  She is taking much more orally now and will eat a whole 4 oz jar of baby food mixed with a ½ serving of oatmeal at each feed.  I also offer her a bottle once a day and have gotten her up to 3 oz of formula thickened with 3 tablespoons of oatmeal and sweetened with a little strawberry syrup – all within the 15 minutes.

Now that Averi is finally starting to understand the bottle a little and take a few consecutive swallows before breaking the seal, she is old enough to move on to a sippy cup or straw.   Frances got out an apple juice box to see what Averi would do with it.  One of the advantages of a juice box is that you can squeeze it to initiate getting the juice into her mouth until she starts sucking on her own.

Surprisingly, Averi did awesome.  She sucked on the straw all by her self and kept opening her mouth trying to get more.  Of course it was a thin liquid so she choked like crazy, but she still wanted more.  Apparently there is a honey bear with a stiff straw in it that is great for straw training and we can put thickened milk in it.  I’m going to run by the hospital later this week to pick one up.  I have high expectations for this one.

Frances said that Averi is advanced enough now that we should be giving her finger foods.  This will be good for her to work on her pincher grasp, eye hand coordination, and chewing.  We got out some Rice Crispies, the only thing there that she wasn’t allergic to, but she had no interest in eating them.  She did, however, exhibit some great pinching techniques, such as index and middle finger, both thumbs, and poking until the moisture made it stick to one finger.  We’re going to work on it.

We also got out a bottle and tried feeding it to Averi without adding the strawberry syrup, since that may not be the healthiest long term solution.  She did better than I thought but wasn’t quite as interested.  Then Frances suggested adding some of the apple juice to flavor the formula.  She did really well with it and took a total of 3 oz.  Seriously, why is it so hard for me to come up with these things?  Apple juice is way healthier than strawberry syrup.  We are going to use apple juice to sweeten from now on and hopefully we will be able to increase her formula intake a little this week.

LEAP, Straight Legs

We went back to the LEAP program (PT, OT, and Speech) for a second try today.  We missed last month, which I wasn’t too upset about, but today they decided to split up the sitters and walkers so I had better hopes.  There were only three kiddos there so we got a lot more one on one time than last time, which was nice.

At one point the PT came over and lifted Averi up a little and she actually kept her legs straight and put weight on them.  She never does that.  Whenever you pick her up she looks like an airplane with its landing gear up.  The PT pushed it a little further, put some toys up on a bench, and got Averi to stand at the bench and play.  She did it several times.  I was amazed!

When she was done she sat Averi on the edge of the thick mat so that her feet were touching the ground and she was forced to use them for balance.  I sat and blew bubbles at her for at least 5 minutes and she was perfectly content.  It was surprisingly an exciting day.

Too bad she’s not getting much Speech out of it, since that is the main reason we started going.  As she gets more vocal, we will stop going and start some real Speech Therapy sessions.

A Day on Planet Heart

The hospital put on a free celebration tonight for all of the heart surgery patients and their families.  It was AMAZING!

It was a space theme and Averi got to sport a new shirt and an astronaut backpack.

All of the heart doctors were there, including Dr. Galantowicz, who performed Averi’s open heart surgery.  We were able to get a picture with him (bad as it may be) so that we can always remember the man who literally held my baby’s heart in his hands and healed it. 

We are so very blessed to have Averi in our lives!

PT: Week 14, Moving is Useful

After being on vacation, spending a lot of time in a carseat, and missing a week of PT, I was worried that Averi wouldn’t have progressed much.  She did still cry, but she was just fine.

In fact, just yesterday I ran into the grocery store for a few things and didn’t feel like taking in the whole carseat so I just put Averi in the front of the shopping cart.  She sat up the entire 20 minutes and only tried to eat the cart a few times.  She is becoming such a big girl.  I think she can handle a longer shopping trip, which is a big deal because I have a really hard time seeing around the carseat when it is sitting in the cart. :)

Today we worked some more on getting in and out of sit, which is always fun.  Since Averi really doesn’t like being on her stomach, Abbi tried helping her get from sitting into four-point (hands and knees).  She said there is nothing wrong with skipping tummy time as long as her arms are getting the workout they need.

Being on her back has become a save place so Abbi said I need to really work on making her get out of sit into four-point and then she can roll over from there.  Hopefully this will show her that there are other ways to get to toys and see her surroundings.

Something else I just realized today while talking to Abbi is that it will take Averi longer to figure out that she can move her body to get to toys.  Duh!  I always just focused on the fact that she has low muscle tone and it will take her longer to be able to move, but just because she can move doesn’t mean she has mentally figured out that she can use it to get to things.

So not only do I need to be working her muscles but I need to be showing her the usefulness of using her body.  Sometimes I wonder how we get anything done at our house.

First Tooth

I’m pretty sure Averi got her first tooth today.  If not today, it was sometime recently.  How, you might ask, do I not know when it happened?  Because it’s a MOLAR!

I was playing with Averi today and when I leaned her back I saw something white.  After further examination, I realized that her upper left molar has broken through her gums.  Now I know that people with DS often have their teeth come in in a weird order, but I was definitely not expecting a molar to be her first tooth.  It’s also a very painful way to start getting teeth.  (I tried to get a picture of the tooth and it was a no go.)

Hopefully all the drooling that she has been doing lately will lead to her getting teeth in the front, but until then I think she’s trying to tell me that she’s ready to skip baby food and go straight for the steak!

Explosion

I took Averi in to be weighed at the pediatrician before we leave for vacation, just to make sure that she is at least still gaining weight.  I do not want to be on the other side of the country and realize that my new method of substituting formula is not working and I need to feed her more and I didn’t pack enough formula.  I sound confident, right?

So, she weighed in at 16 pounds 12 ounces.  That’s a gain of 6 ounces in the last 2 ½ weeks (keeping in mind that she had on a diaper and it’s a different scale) but that should at least keep GI off my back for a little while.

Averi was so excited about gaining weight that she gave us a present.  Dan went to pick her up as we were packing the car to leave for a Fourth of July party tonight and he smelled something nasty as she lifted her leg.  After further inspection he realized that she was sitting in a puddle of brown.

Now Averi has constipation problems so if she doesn’t poo for a couple of days we start giving her milk of magnesia to clear out her system.  The problem with this is that she usually goes several more days before getting it out and by then it has turned to liquid.  This being said, we have had messes before, but never to the extent of this EXPLOSION!

It was literally up to her nipples in the front and her shoulder blades in the back.  Dan ran her up to the bath tub and started rinsing off her chair.  Her clothes were so messy that we couldn’t get them off without getting poop all over her face.  Dan finally just ripped them off and threw them away.  While this was going on I was trying to hold down her poopy thumbs so that she wouldn’t put them in her mouth.

Once her clothes were off we began dumping water on her in hopes of getting enough brown off of her feeding tube to take out the extension and plug up her button without filling her stomach with poop.  Long story short (because it was very long, trust me) we finally gave her 3 different baths, threw away the tube extension and Mickey Button, and replaced the Button with a new one.

(I know it's a crappy picture...no pun intended...but considering the circumstances it was the best I could do before I had to hold her down again.)

Since Averi was screaming bloody murder during this entire experience, it shouldn’t have been a surprise that when I took out her Button her stomach contents literally shot into the air and got all over the carpet and her clean body.  This resulted in yet another mess and a rash that has now sprung up all over her tummy in reaction to the stomach acid.

Needless to say, we were more than 30 minutes late leaving for the party and Averi still didn’t smell clean.  Don’t worry, I’m sure it will happen again.