Standing

A lot of this has been going on lately. It seems like she is almost always trying to pull herself up to stand. Sometimes she lifts her (straight) leg up and climbs right on the couch. Here she is sporting her shiny hip helpers playing on the ipad. Her knees are locked, which is not great, but we are just thrilled that she is standing. We are seeing a LOT more movement with Lyla. More army crawling than rolling. More time on her knees, especially when wearing the hip helpers. And she's even taken a few knee steps when on all fours! I told parker and mabel that we would have a party when Lyla starts crawling, cake and all! Can't wait!

Also, she turned 2 in September! I need to post about that ASAP!

Standing Up

Today Lyla stood up all by herself by pulling herself up on the outside of the bathtub!!!!! Parker and Mabel were in the tub playing after their bath and Lyla really wanted to play too! She just loves the water and really likes the Ariel swim Barbie. I was in the bedroom(bathroom...) and I hear the kids shout with excitement "Mom! Lyla is standing up and she's splashing the water in the bathtub!" I ran in there so fast and couldn't believe my eyes! I didn't get a picture as I was so worried that she would fall in or fall backward not being able to stand for very long. She did it a second time too and we all cheered so loud. Lyla clapped too ( while standing against the tub). It was an amazing sight to see. And just as wonderful was how truly happy and proud both Parker and Mabel were for her. I could cry..sniff sniff...

My Summer In Pictures

My Summer in Pictures

In June we went to the Monterey Bay Aquarium. I loved going in the baby area and bouncing around on the water blob. I also thought the jelly fish were really cool! We got to go to Auntie JJ's wedding in Capitola too.

I'm getting to be really good at sitting up and sometimes it keeps me up later at night.

I had a few naps outside. Some at Parker's swim practice and this one over at Grammy's house.

I love seeing what my older siblings are up too. Mabel was on the ipad so I wanted to help.

 I got to celebrate Independence Day at home. Last year I was in the hospital and got to watch the the fireworks from the window.

Grandpa and Vovo got a new boat and I loved going fast on the water. 

This is a comfortable position.

Had an echocardiogram. Dr says everything looks the same. My mitral valve is leaking but for now it's ok.

Read some stories with Daddy and Mabel.

 Helped Parkie build with Legos.

Rode the carousal for the first time and was really unsure at first. Once it started moving I felt a lot better.  

Sometimes when Mommy says "cheese" I smile:)

We went to the beach for Mabel's 4th birthday and I had fun in the sand and putting my feet in the water. Then I took a nap. 

In August we went camping at the D.L. Bliss campground in Lake Tahoe. We went on a fun hike and got stuck in a hail storm. I liked getting wet and then sitting around the camp fire.

 Sometimes Mommy lets me sit in the forward facing car seat. 

I'm doing a lot more Army crawling.

And pushing myself into hands and knees.

I started warm water therapy in July and really love the water. I'm working on strengthening my core and Mommy can already notice a difference in how I'm sitting and how more often I am sitting. I also now have 4 teeth and 2 more are coming in. One bottom tooth and the rest are molars! I can take objects out of a bowl and am working really hard to learn how to put them in the bowl. I love playing "roll ball" and can also play "throw ball".  I really love drinking water from my bottle and having bigger tastes of food. I can sign "more" and put my arms up when someone asks if I want "up".  I have 3 bolus feeds during the day and then I  am hooked up for 12 hours at night.  I love pulling hair and blowing raspberries. I am currently 20lbs and 31 inches long. I can wear sizes 18-24 months.

First Time Swimming!

Lyla has had her feet in the pool before but we've never had her floating around in her little floatie. She LOVED being in the water; splashing so hard her face was drenched and drinking as much pool water she could (and then barfing it all back up). We officially have 3 little fishies.

(oh, that hair!)

Hands Free

This month Lyla has been slowly lifting both hands from the ground while she is sitting. Sometimes she'll grab a toy or whatever is around and play with it for a few seconds. But usually it's to clap her hands. She's very proud of herself. She also is turning herself around while in the sitting position. She's not quite upright and she still spends the majority of time on her rolling around and on her back, but we are still seeing more and more of her sitting up. And every once in awhile she will get on her hands and knees for a few seconds. 

We went to the speech therapist and have since been working on giving Lyla a little bit (5ml) of almond milk twice a day and also food tastes (dipping the spoon in puree and touching it to her tongue). She loves the milk and even reaches out and pulls for it back to her mouth! I've seen her increase the time she wants it in her mouth. Which is sometimes too long even though she's comfortable because she has spit up afterward. With food tastes she was pushing away the food at first and not even wanting it, but now she will open her mouth for some! These are just small progressions but huge for Lyla!

 We've also been able to continue to increase her pump feeds. After visiting the GI last (above photo), Lyla is now getting 60ml/hr for 16 hours! In the morning her food ends at 6 am and I'm able to take her, pump free, to drop off Parker at school! It's so much easier picking her up out of the car without a backpack and cords following that I have to be careful for and worry about clipping onto the stroller and moving out of the way! The break in the morning is the longest from 6am-9am. But works out wonderfully since she doesnt spit up a ton of milk during school drop off (nothing in her tummy). She still spits up, but not the same amounts.

She has also been bearing more weight on her legs! When you lift her up, she doesn't stretch her legs down to standing position. Instead they just curl up. But we've been working on her standing from the sitting position. She sits on a short little step stool and stands holding onto the couch. She will even stand if you ask her too! (while sitting on the step stool)

She also went to her first Sacramento Rivercats game! I think she had a good time.

Weight Progress

Lyla's GI is very happy with her weight progress. Her historical charts are scanned below:

March and April - 18 & 19 months

 Things we've been up to lately:

For Daddy's birthday we went to Farrells ice cream and Lyla sat in a high chair for the first time! She did really well sitting in it, propped with a blanket. It was nice to have her level with the rest of the family.

Trevor and I went on a nice long (20 mile) bike ride with just Lyla. She had the whole trailer to herself and was so good. Just made it a little bit harder on Daddy!

                                      

 We went on a short hike during Conference weekend. The whole family was able to go and Parker and Mabel were excited to have both Mommy and Daddy. We walked a trail by Ancil Hoffman and Lyla hiked on Daddy's back. She really enjoyed the walk and didn't even spit up!

 Here are the girls during a little break.

 Our little gymnast.

 Easter weekend we went to GG and Poppi's house for an egg hunt and crafts. It was Lyla's first time around all her cousins. She's was pretty tired and ended up being rocked to sleep in my arms. The nap didn't last long, but I very much enjoyed the snuggle time.

Lyla is technically old enough and weighs enough to sit in a forward facing carseat. Problem is her head control is still not 100% and neither is her core so we haven't switched her from the infant rear facing seat yet. But just for fun, Mabel and I buckled Lyla up to go pick Parker up from school. I think you can say she loved it!

We have been steadily increasing Lyla's milk rate and she's doing great! She is currently at 47ml/h for 19 hours. We've also been to the speech therapist and implemented a plan to slowly introduce Lyla to foods orally. She gets a bottle of water 2x a day and gets 5-10ml. She doesn't have a steady suck, but she reaches for the bottle, takes what she wants, pushes the bottle away, and then reaches for it again. Love it! The puree's haven't been as successful. She's only spit up after tasting the sweet potatoes, but been ok with the green beans and peaches. All I do is dip the spoon in, and touch it to her tongue. She hardly gets any, but the point is the taste.

She is still sitting with support (tripod sit) but the last couple of days has been turning herself around while in the sitting position! Showing more core strength and trying new things!

Before bed Lyla gets a kiss from everyone and then we say goodnight. Lately we've been waving goodnight to her. Well tonight she was getting fussy and I asked her if she was ready for bed. Then I said "Lyla, you want to go night night?" and she started waving!!! Not 100% sure if she put the two together but I just about exploded. It was Awesome.

Last month I was holding up two familiar toys, one in each hand, and then asking Lyla to get one of them (specifically). She almost consistently went for the one I asked for. We tried that over again for a week or two and she could mostly do it. I thought it was so great, but she hasn't done it since. Kind of a bummer, but we'll keep practicing.

Oh! and she has TWO teeth! One on the bottom (right side) came in end of March and one right above it mid April. It's super exciting. I just hope more start popping through soon!

Progress!

I feel like the last month Lyla has really been making some progress. It has been incredible to watch. She can clap, wave, sign momma (mostly), and put her arms up on command. She is sitting herself in support (tripod) more and more everyday and now will lift up one hand for a few seconds!

She is way more interactive and smiley. It also doesn't take a whole performance to make her laugh a little. She will get on her hands and knees and rock back and forth. And we are happy to see some chubby thighs!



some stats for us to remember
  Currently at 38ml/hr- working on increasing to get her rate high enough to decrease how many hours she's connected to the pump.
  Weighs 18lbs!!!!!
  Still in rear facing car seat, but she is growing so fast!
  Still in the cradle at night due to her frequently waking up in the night to spit up (which has decreased) and/or fussing because of gas.
  We have dropped a few prescribed vitamins.
     No more vitamin D or Iron
     Lasix 1mlx2
     Spironolactone .4mlx2
     Probiotic at night
     Prilosec at night

 She loves to roll right over to Parker if he sits or lays on the floor and has to either tap on him or get her feet and legs on him. It is super cute.

 First time playing in the sand and she was enjoying herself. Even sampled it:)

Really gets jumping in this thing. It helps when big sister jumps along with her. She gives the biggest smiles for that.

Clapping

ok,, I think I'm 99.9% convinced that Lyla is clapping her hands when we ask her to. This is amazing! It truly blows my mind. Every time this girl does something that seemed so "normal" with the other two, I am just overwhelmed with gratitude.
posted by sheena

Caught in the Act

It's been tricky trying to catch Lyla doing some of her new tricks but I was able to catch this one while I was in the kitchen and she and Parker were playing in the family room. It's the highest I've seen her get up and I wanted to shout from the rooftops after it happened. She gets up from the splits, which isn't ideal in the PT world but we are thrilled. We are working on getting her used to getting up from the side and getting down that way as well, but for now we are just happy that she can do this:

She doesn't stay up for very long and is dependent on her hands for balance, but it's so wonderful! She has also, a handful of times, gotten up on her knees and hands! Last month she wasn't able to push up on her hands; she only could get up on her elbows. It's exciting to see her in the crawling position! She does all kinds of movements with her body which are really cool to watch. Hopefully I can start catching her doing these things. Oh, and she's clapping her hands. I'm pretty sure it's unintentional, but it's super cute. She usually does some sort of tapping, mostly with her thumb. But this past week it's been her hands. Love it.

And this happened the other day

This never happened to Parker or Mabel

Apria Delivery

 This is what one month of formula looks like. The box on the right is a month of feeding pump bags and another box (not pictured) contains extension sets to the gtube and syringes.

1 Year Anniversry

Today marks one year since Lyla's open heart surgery. We were mostly comfortable going into the surgery since we already had this experience with Parker. We even read that she could be out within a week or two. We had learned a few things about Lyla from previous hospital stays, like that she likes to do things on her own time, so I was a little unbelieving that it would be a quick experience. The surgery itself went well. The surgeon was able to fix what he wanted to fix and she was sewn back up. But after only a few days, Lyla's heart wasn't doing too well and the ECMO (life support to pump and oxygenate Lyla's blood for her) was hooked up. We continued on a road full of bumps and detours with respiratory issues and feeding issues included. And after 3 months, were finally able to go home.
   We are so grateful to have that behind us. We felt like every time we got to take a step forward, we would then take two steps back. We finally feel like we are moving forward with Lyla's health, weight gain and development. It has been in true Lyla style, but we'll take it!