New blog background and header

Lilly's blog has a new look, thanks to my sister-in-law K.H. (Actually both of my sisters-in-law have the same initials - for those that know them, this is the one that lives in a different state than me.) I had been wanting something that was special for Lilly and asked K. about it and she took my ideas and made them better. The Easter lily flower at the top is my favorite kind of lily - pure and white like my Lilly. The red, white, and blue bows on the sides represent Lilly's birthday - which is the 4th of July. And the background is blue because that is my favorite color. :)

Though I loved my Lilly picture at the top that I had - she had the best smile! - it was time for a new one. One without the NG tube in her nose. I do need another picture up of Lilly smiling and hope to have a good one to use as her header picture soon. UPDATE: I put the smiling picture at the bottom of this blog page.

Thanks again K.!

Figuring out the chocolate and Karo tip

OK, so I got Lilly the super healthy chocolate. (See my July 12 post ) My other two children and I had to do a taste test first, to makes sure it was suitable for Lilly. YUM! Passed the test. So I've been melting it for Lilly. What does Lilly think? Well - she's not in love with it. But she doesn't dislike it either. She prefers eating it off my finger rather than from a spoon. I think the main issue with the chocolate is that it is pretty thick when melted. Not too easy for her to work with. Thought it's good to practice. I've been experimenting with mixing in breastmilk with it to try and make the consistency easier for her.

One thing that happens every time is that she seems to get some stuck on the roof of her mouth. She has a very high roof, so it can be quite awhile before it all gets swallowed, or drooled out.

On a different note, the wife of one of my nephews told me about an old remedy for baby constipation. (Unfortunately quite a problem in the Trisomy 18 world.) A capful of Karo syrup! I couldn't believe I was buying corn syrup, since I try to avoid it in all food I buy, but I figured it was better than the medication usually prescribed. Lilly got a little bit this morning (added into her milk) and 5 hours later - major relief. Ha!

Button buddies and pediatrician visit

Weight check = 12 lbs. 7 ozs.
Height check = 24.5 inches

Lilly had a check up with her pediatrician today. She's doing really well overall and everyone in the office was thrilled she made it to one year old. Her pediatrician requested a picture of Lilly to hang up in the office.

I've been thinking ahead to the dreaded winter months of super germs everywhere and anyone reading this blog for long knows how hard that can be on Lilly. (She was hospitalized twice this year for viruses, and almost died both times.)

So I asked about getting Lilly the RSV series of shots which starts around October and goes for several months. These shots are ridiculously priced - about $1000 PER shot! But if it really does protect her from the viruses, it is worth it. And it would save a ton of money from hospitalizations. (The two viruses she had been hospitalized for combined totalled @ $150,000.)

I also have found many parents of Trisomy 18 children have nebrulizers and use them for breathing treatments for their children when their kids get colds, or are really congested. They say if they use these, then they can often nip an illness in the bud. We want to do that too! So I am going to buy a nebrulizer and I got a perscription today for Xopenex to use with it..

Thanks to a tip from my cousin M., I got something that's working really well for Lilly called "button buddies." (Today's pictures) These little cloth circles go neatly around her g-tube (they velcro close) and work sooooo much better than gauze and tape. (Lilly often has a little stomach leakage so we need something to absorb it and keep it off her clothes.) They are soft and ticker than the gauze I used so I am hoping they'll cut down on her granulation too. (Growth of skin around the opening to the stomach.) Plus they're washable! So it will be a money saver, just like Lilly's cloth diapers. I got these from: http://www.mybuttonbuddies.com/

Speaking of g-tubes, ever since Lilly had her's placed in May, she has done a lot of spitting up. (Which she rarely did before.) She was spitting up several times a day and it was a lot. Plus her tummy seemed uncomfortable. We finally cut the rate back on her feeding pump and now she's not spitting up at all. (I was actually afraid to do this initially because it's she already gains weight so slowly. But I reasoned if she's keeping everything in - instead of spitting up a lot of milk - then that is better for weight gain.) I have been pondering why this was happening, since she handeled the higher feed rate with her NG tube without problems, when it finally hit me that the balloon at the end of the g-tube (which is inflated with water in her stomach to keep it from coming out) takes up a lot more room in her tiny tummy than the skinny NG tube did. Oh .... that makes sense ...

Lilly is in my lap and just happily finished off a spoonful of coconut oil. It gives us such joy to see her happy and feeling well. Her nurse today commented that Lilly is a lot closer to Jesus than we'll ever be. That's the truth!

"For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, 39 neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord." - Romans 8:38-39

Leak proof diaper cover and O.T. evaluation

Lilly is modeling her latest diaper cover in today's picture. This is a wool diaper cover. I had forgotten that these existed until my friend H.B. showed me one she used for her son. She said they didn't have the overnight leaking problem when she put it on him. So I ordered one for Lilly, in a deep purple color. We've used it every night on her for over a week now and I am thrilled that she has not leaked at all! Even sleeping 11 hours straight on continuous feed. I can't tell you how happy this makes me! No more washing nightgown and bedding almost every day.

Wool diaper covers can be pretty pricey, but this one is by Disana (I think from Germany?) and is a good price. If you're interested go to:

http://www.abbyslane.com/Disana-Wool-Covers_p_115.html

And if you're new to using wool diaper covers, note that you have to wash them a little differently than regular cloth diapers and covers. See: http://www.abbyslane.com/Wool-Care_c_24.html . You don't have to wash them daily - just air out!

Last Wednesday, Lilly had an evaluation for occupational therapy. I told her I was most interested in getting Lilly some therapy for her hands (to not clench so much) and to work with her on mouth feeding. She agreed that Lilly could benefit from therapy for her hands and suggested "low profile hand splinting" such as a neoprene glove. (A glove that fits over Lilly's palm.) The therapist also wanted to watch how Lilly ate so I fed Lilly coconut oil. She said that Lilly managed the feeding very well. I was happy to hear that.

Lilly's coordinator is now collecting information on occupational therapists who said they would be willing to work with Lilly. Then I will decide which one we want to try.

Speaking of feeding, Lilly's special super healthy chocolate came right before we left town. I have it on my to-do list to try and feed some to her tomorrow. I think I ought to try it too. :)

"If you then, being evil, know how to give good gifts to your children, how much more will your Father who is in heaven give good things to those who ask Him!" - Matthew 7:11

Back home

Weight check = 12 lbs. 6 oz.

We're back home now after spending some time with my husband's family. Friday was my father-in-law's funeral. My husband gave the Eulogy and did a fantastic job describing Pop and the strong, generous, and spiritual man that he was. Our Lilly's full name is "Lillian Eva" and she was named after two relatives. "Eva" was Pop's mother, who died when he was a little boy. "Lillian" was my great-grandmother.

Shortly before we left town, I had a moment of panic because Lilly's entire g-tube got yanked out! My daughter T. was holding Lilly and lifted her up to stand her on my desk. Lilly suddenly began crying loudly from pain. T. took her back down and Lilly soon calmed down. Shortly after T. brought Lilly to me and said Lilly had leaked all over her. I noticed Lilly's onsie was soaked. Then horror of horrors - when I opened it the whole g-tube (with water balloon still inflated) was loose in her onsie. (The water balloon stays inside Lilly's stomach to help keep the whole g-tube from coming out easily.) The open hole to her stomach was staring at me. Lilly herself was staring at me and smiling.

I got out my directions on what to do if this happened. I had to put a "Foley" three inches into her stomach hole, and then inflate it with a little water to keep it from slipping out. (See today's picture.) It was evening so I wasn't sure how easy it would be to reach the surgeon, so I called my friend K.L., who has a little boy with a g-tube. She was so kind to come right over and showed me how to deflate the g-tube's "water balloon", pop part of the tube back in, and then inflate the balloon again with more water. It all went smoothly and we've had no trouble since. Thank you again K. for saving the day! :)

I couldn't help but think of this scripture, after the g-tube mishap, as it applies to so many areas of our lives:

"Two are better than one, because they have a good reward for their toil. For if they fall, one will lift up his fellow. But woe to him who is alone when he falls and has not another to lift him up!" - Ecclesiastes 4:9-10

Lilly's Pop

This afternoon my father-in-law went to be with the Lord. I'm so grateful we got to see him on July 4 - Lilly's 1st birthday - and that he still was able to smile at her then. Pop was a good man and will be greatly missed.

"The LORD gave, and the LORD has taken away; Blessed be the name of the LORD." - Job 1:21

Lights, bells, and whistles

I'm one of those parents that thinks that toys that demand imagination from my children are best. Blocks, dolls, toy cars, lots of craft supplies, etc. I don't generally think noisy flashy toys are good for children's minds.

Enter Lilly's pink laptop.

Shortly before Lilly's birthday I was talking to her physical therapist about toys that would be good for her. I had noticed she paid more attention to toys that had flashing lights and turned towards sounds. So I went looking for toys that flashed and made noises.

I didn't really find anything. But then God blessed us through a sweet mama of a little girl with Trisomy 18, named Emily. (Emily is FIVE years old!!) For Lilly's recent birthday, this mama sent Lilly a pink laptop that has flashing lights and sings and talks. She said that it was Emily's favorite toy.

And now I think it is probably Lilly's too. She really likes when we hold her and put the laptop in her lap and put her hand over the buttons so she can push them. I don't know if she's connected what she's doing yet, but she is quite interested and stays focused for awhile.

So what do I - Mrs. Picky Toy Lady think of the laptop? I love it! I thrills me to see Lilly interested in something and know that for her, this is just the kind of toy she needs.

My son loves to help Lilly push the buttons on the laptop. He likes to play with it by himself too. He likes to tell me he needs to play with "something with a lot of buttons." I usually tell him it's fine for him to play with Lilly's laptop for a little while. He then proceeds to "send e-mails" and "work" for a little while.


I love this last picture of my son holding Lilly's hand. He loves her so much and frequently tells her that during each day.

Lilly got a happy birthday e-mail from B.P., an employee at Focus on the Family. (She is the one that we communicated with for Tammy Tate's booklet "Gift of a Lifetime." You can read a description of the booklet and get the link to order it by going to the right side of my blog and scrolling down.) Lilly is one of the babies pictured in the booklet. B.P. shared a verse that made her think of Lilly:

"Day by day the Lord takes care of the innocent, and they will receive an inheritance that lasts forever." - Psalm 37:18

What a comfort.