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!

Lyla's First Haircut

At 14 months old, you would think Lyla is well overdue for a haircut. But because she hasn't been able to hold up her head for long periods of time, she's constantly rubbing her head on the floor. As a result the hair around the side of her head is very short (about 1" or less), and the hair on the top has grown incredibly long. Sheena cut off a total of 5 inches just to even it out with the other hair on her head.

Steps

Lyla is truly taking Lyla-steps. She progresses at the rate she wants, but she seems to be on a slow and steady increase. Her biggest concern right now is growth. She's had a very hard time keeping down her formula, so we've switched her to 'neocate' formula, but so far there's no noticeable difference other than maybe a very slight improvement. With our visit this week to her Infectious Disease doctor, it was concluded she does not have a reoccurring fever syndrome (which would be terrible if she did), but weight concerns will leave her with increased susceptibility going into the winter months.

This week she's been to the ID doctor, had a blood draw, and scheduled a consultation with a surgeon regarding a potential for Fundoplication surgery (the same surgeon who installed her g-tube).

Transferring Toys

This month Lyla has been transferring toys from one hand to another and then back again! It's been so amazing to watch her do this intentionally. She is rolling all over the place and doing really well keeping her head up. When on her belly she likes to lean onto one elbow and throw the other one back behind her. She is still spitting up, and we hope this ends soon! Her weight is teetering and 12lbs.

Catch Up

This blog has sadly been neglected. We know that a lot of you out there still check this blog and we wish we were better about keeping it up to date, but in a way it was a little easier when Lyla was in the hospital because we had more down time sitting in there with her while she slept.  I'm going to try and do recaps of the last 3 months.  This might get pretty lengthy, but I really do want to have a record of all this craziness to look back on.

May:
  After almost 2 months at home post OHS discharge, Lyla got really sick. She had been getting a lot of runny noses and fevers and combined with spitting up and not gaining any weight, we were asked by her doctor to bring her in to the ER. Both Trevor and I were optimistic that this wouldn't be a long stay, but I don't think we realized how sick she was. We were luckily admitted to the PICU. I say "luckily" because that is the 10th floor and that is where Lyla has spent all of her time at UCD. At first it was with the general doctors, and not ICU/cardiac doctors, but in less than 24 hours we switched over to the cardiac doctors. This was a good change because they know Lyla more, but scary since it meant she was sicker than we thought. She had human metapneumovirus amd diagnosed with bronchiolitis and pneumonia. This stay was 10 days long and we went home just in time for mother's day. The rest of the month was filled with Dr. appts. Ophthalmology, cardiology, pediatrician, and a blood draw.

June:
  June was going to be all about fixing Lyla's eyes. First with a nasolacrimal duct surgery, to help with the drainage in her eyes. And then cataract surgery

 

to remove cataracts in both eyes and hopefully give Lyla some vision. But unfortunately, we had to cancel and reschedule appts due to fevers. We had an appt with ENT (ear, nose, throat) for a swallow study. This was really neat to see in x-ray, Lyla drinking and swallowing. I wish I took a video! Anyway, she passed! So we have officially been ok'd to bottle feed. Unfortunately, Lyla gets sick so frequently that we haven't been able to get a good consistent feeding schedule. She is still being fed continuously through the gtube and takes water and formula occasionally from the bottle. 
She's also been getting really good at lifting her head! It's been amazing to see the change. 








July:
  As a result of Lyla's frequent fevers and spitting up, she wasnt gaining weight like she should have been so her cardiologist scheduled for us to be admitted on July 1st. The plan was to have her checked out by GI, ID (infectious disease) to check immunity deficiency, and get some blood drawn. We were there for 4 days and I was ready to leave after the first night! It seemed like a pointless admission. ID didn't feel it was necesary to check Lyla out, and GI didnt have much input since the issue of her "button" leaking resolves when she's not wretching and spitting up. There wasn't anything the hospital stay was doing that we couldn't do at home. Very frustrating. We brought Mabel and Parker to the hospital to watch the fireworks at Cal Expo from the 7th floor. It was amazing how many different firework shows we could see. The Kids got bored however. One good thing was that they could do test runs of Lyla off oxygen and closely watch her sats. She was pretty consistant around 90- mid 90s so they advised us to keep her on oxygen at night while she sleeps and as needed during the day. So wonderful!!! I can't believe how much easier it is to leave the house without the oxygen tank. We had been carting that thing around since April.  We went home on July 5th.

  After discharge Lyla was able to have the eye duct surgery on July 8th. The picture to the right is how the Dr. checks if the eyes are draining correctly. The right eye drained really well and the left eye was way better than pre surgery so we could prepare for cataract surgery.









 We had to wait until the end of July to have the cataract surgery because the Dr went out of town! picture on the left is what Lyla had to wear for 28 hours!









 Picture on the right is what Lyla is currently wearing for 3 weeks. Plus 2 different kinds of eye drops 1 drop in each eye 4 times a day. She's surprisingly been so good about the eye shields and hasn't tried to rip them off. Below is what Lyla's leg looked like after the nurse flushed her IV (wrong) for about 4 days. It still is really purple right at the IV site on her ankle. I'm hoping that starts to clear up soon.

 We had the normal appts between cardiology, pediatrician, and ophthalmology. and cardiologist requested for us to be seen from ID. So Lyla got her blood drawn. The ID Dr's were pretty confident (still) that these frequent fevers/illnesses were due to her age, cardiac condition, and Down syndrome. But the tests were borderline, so more blood was drawn for more specific diseases and now we wait.

  We did take a nice trip to Lake Tahoe in between surgeries and it was really nice. (aside from the mile hike down to the beach) Lyla slept most of the time on a blanket on the sand. I think the sound of the waves lulled her to sleep. Parker and Mabel had a great time too. Mabel wanted to be buried in the sand and Parker wanted to swim out and explore the Lake with Daddy. It was something that we really needed as a family.