Baby Popeye

Weight check = 12 lbs. 13 oz.

Yesterday I fed Lilly spinach through her g-tube for the first time. She did very well with it. It is one of the top foods for iron (and she was recently found to be anemic) and in the cooked form, is excellent for the eyes. Lilly's eyes, like those of many children with Trisomy 18, are incredibly sensitive to natural light. (She often even needs her sunglasses or a hat on when it's cloudy out.) I read that some parents saw that it really helped their children's eye sensitivity to improve when they got a regular dose of spinach. We will see.

One thing I think the spinach did was to make Lilly stronger - like Popeye! She woke up early this morning (rare for her) ready to go. (first picture) She sat, playing busily, in her bouncy seat on top of the kitchen table while my son and I ate breakfast. She stayed wound up all morning, then had physical therapy from 11:45-12:45. She did fantastic in lifting her head today. When therapy was over, I picked her up and she was asleep on me within minutes. I laid her down (second picture) and she slept hard until occupational therapy at 2:15. After a few minutes of grogginess she worked really hard lifting her head for another hour.

Now I've laid her down on her mat on her tummy and she's talking to her reflection in her mirror. I'm trying to encourage a nap, but I don't know if that will happen! She's got another full belly - spinach and yogurt - and seems content.

This past Saturday, I combed the local thrift shops looking for clothes for Lilly for winter. I was specifically looking for soft cotton dresses (size 9 mos.) to pair with leggings as this seems like the best way to dress her so that her g-tube is easily accessible. I was surprised I couldn't really find anything like I had in mind. However I did find a beautiful soft blue coat with trim and a matching hat. (last picture) It is too big for this year, but I was thinking she'll look beautiful in it next year. (You hear that Lilly? I am planning for you to be with us next year! You work hard and stay alive! There's so many prayers for the Lord to sustain your life being offered every day!)

I had hoped we would have heard from Wolfson's Childrens Hospital today about Lilly's needed heart surgery. Still no answer. I'm continuing to bug them weekly. I think I'll ask my husband to help me pester them next week.

"Wait for the LORD; be strong and take heart and wait for the LORD." - Psalm 27:14

Lilly loves being rolled

Lilly loves being rolled back and forth during the therapy we do. Here is a short video from yesterday of me rolling her. She smiles the whole time.

Therapy with Mamma

Lilly is doing well so far with her "blender diet." She handled several days with the pureed avocado with homemade organic chicken broth just fine. (Our only glitch was one time the puree made a blockage in her g-tube button. But some water pushed in with a syringe quickly got rid of it.) I use a really big syringe to slowly push in the food. She's in my lap when I feed her and I watch for any squirming or facial expression or sound of discomfort. So far so good. Yesterday we added a tablespoon of yogurt in. We'll keep that mix for a few days. (It was recently shared with me that probiotics and help prevent colds and upper respiratory infections. See here.)

Except for Fridays, when her physical therapist and occupational therapist come to our house, I try and do about 30 minutes or so of therapy with Lilly most days. I have a little notebook where I write down exercises her PT and OT do with her so I can try them with her. I have to say that therapy time is just about her favorite time of the day. (Well at least it can compete with when her daddy gets home from work. He always gets the biggest smiles from her.)

Lilly just loves the stretching and working. She loves playing with her pinto beans. (Today's last two pictures.) Last week she wanted to crawl so badly. So I put her on our wood floor, and put her flannel burp cloth under her face and hands. I put my hands behind her feet and she pushed off on them. Her legs were crawling! She doesn't have the strength to lift her head or get up on her arms. But those legs were crawling and pushing her upper body along (sliding on the burp cloth). She was grunting and went several feet across the floor before she stopped. Definitely a missed video opportunity!

When Lilly is feeling well she is truly the most joyful and content human being that I know.

"The Lord has done great things for us! We are glad!" - Psalm 126:3

Downtown Bounty Festival

This evening we went to our town's "Bounty Festival." They had old cars and antique tractors which our son, the "little motor head", liked examining. They also had inflatable slides and jumps which our older daughter enjoyed. And it was outside so that meant Lilly would not have to be closed in with germs.

Lilly rode in my wrap and spent the first part napping. Then she woke up and enjoyed looking around. She was so happy to be out and about and seeing and hearing new things. :)

Operation blender diet

A few days before Lilly got sick, I decided to slowly start her on a blenderized diet of real food. She had two days of a little avocado blended in homemade organic chicken broth fed to her through her g-tube. Then she got the cold so I stopped as I didn't want to do anything extra. Now she's better and so today I again gave her a half ounce of the avocado/broth blend. (You can see in the picture I have the food in a big syringe, then push it through the bolus extension of her g-tube.)

I've started a little notebook so I can keep track of what I'm giving her and note how she handles it. I figure start SLOW and only introduce one new food a week. Since she has tolerated a little broth and avocado by mouth, I started with those.

The "other Lily's" mama shared with me about a book called Homemade Blended Formula Handbook by Marsha Dunn Klein, M.Ed, OTR/L and Suzanne Evans Morris, Ph.D., CCC. It is available on the Mealtime Notions website: http://www.mealtimenotions.com/ . Click HERE for the direct link to the book.

I'm so glad I got this book - it is a wealth of information. Plus I'm a "book person." It's nice to have a book to carry around and read wherever I want and not be chained to a computer searching here and there for information to piece together.

I am really looking forward to seeing how Lilly does on a diet of real food. She is still currently just getting breastmilk and now at 14 mos. I know she needs more. But her digestive system does NOT like formula very much. So I am praying this will work for her. The book had examples of children (a variety of ages) who had all sorts of digestive issues on formula and when they were switched to the blenderized real food diet they made HUGE improvements. Digestive issues went away, they began gaining weight better, had more energy, felt better, not sick as much ... the list goes on. For children (and adults) with g-tubes, formulas are convenient and are scientifically packed with what they need. But surely they just can not be as perfect as the food God created!

"And God said, “Behold, I have given you every plant yielding seed that is on the face of all the earth, and every tree with seed in its fruit. You shall have them for food." - Genesis 1:29

"Every moving thing that lives shall be food for you. And as I gave you the green plants, I give you everything." - Genesis 9:3

One other big change for Lilly's feeding is that during the daytime, we have been switching from using the pump and continuously feeding her, to bolus feeding her. Her tummy is still so tiny that I'm giving her an ounce of milk every hour. But in the couple weeks we've been doing this, I see that she is slowly starting to handle more at once. So we'll eventually be able to give her several ounces at once and not have to feed each hour. We are all LOVING this! Because without Lilly hooked up to the feeding pump constantly, we can do things like just pick her up and walk around with her like a "normal" baby. :) And I honestly think Lilly is feeling better too. I don't think it is just a coincidence that her painful gas issues have been decreasing as I have been getting away from the continuous feeds on the pump during the day and doing the bolus feeds instead.

I'll be sharing more about this food journey in future posts. For now I'll wish Lilly bon appétit!

Another Bumbo baby

Weight check = 12 lbs. 8.5 oz. (Down from 13 lbs. before she got sick. Disappointing but not surprising.)

Lilly's physical therapist suggested we got a tray for the Bumbo seat we are borrowing from A.S. So now sitting in it is part of Lilly's therapy sessions. I worked with her some in it for the first time (by myself) yesterday.

In today's picture Lilly is wearing an outfit that she received from the Kwant family. The outfit had been intended for their sweet little Hannah Grace, but she decided to go live with Jesus before she fit it. And she certainly has no need for the outfit there - I'm sure she's beautiful and whole and wearing white. :) Her mama sweetly passed on a few things to Lilly, which was very touching to us.

I had to call Lilly's pediatrician with her current weight today, because she is due to start the monthly Synagis injections (RSV (virus) prevention) in 2 weeks.

I got an e-mail today from the cardiology nurse at Wolfson Children's Hospital in Florida. They are ready to review Lilly's case with the surgeon, regarding her need for VSD closure in her heart. Apparently they had planned to today, but another surgery interfered with the meeting time. So supposedly they will do so next week. We're fine waiting another week - with Lilly's cold they're surely going to want to wait awhile longer anyway. (Assuming they accept her case.)

Lilly has little remaining of her cold. I am still in awe that we didn't have to go to the hospital! That makes two colds in a row that she handled well! Thank you nebulizer and God! :)

"It is good to give thanks to the Lord, to sing praises to your name, O Most High;" - Psalm 92:1

G-tubes for dogs??!!

Lilly and her brother are continuing to slowly heal from their colds. They seem to feel the worst in the morning and then improve as the day goes by, though this morning they did pretty well. We're keeping up the nebulizer treatments for Lilly.

This morning my son asked me to print out a picture of a Kangaroo Joey feeding pump for him. While I was doing so, he went and got his stuffed dog Thorny. He said Thorny had a g-tube and needed to eat. Then my daughter got in on it and the next thing I knew, Thorny had a paper g-tube and was hooked up to a pump on a pole.

This was definitely not a game I would have ever thought up as a child!