Happy Memorial Day!

Happy Memorial Day from squeaky clean Lilly!

We have a 96-year-old veteran that lives across the street from us. He survived the Bataan death march in World War II and was a prisoner of war for 3 years. He has many fascinating, and horrible, stories about that time. My daughter T. made him a "thank you" card today.

We continue to be tickled by Lilly's occasional sneezes. It's so strange to think that she never sneezed when she had the NG tube in her nose! I wonder if that is normal.

Lilly had physical therapy last Friday. Her therapist is working a lot to get Lilly to turn her head to the left normally. Ever since that session, Lilly has been turning her head to the left lot more on her own. Yay! I'm trying to work with her each day too, using exercises I saw the therapist do with her.

Lilly has always enjoyed looking at different shooting targets that I have printed off a free target website. Now I have pulled out some of my son's brightly colored books to show her. She is taking some what of an interest in them. Keeping her eyes focused for long doesn't seem to be easy for her. She's got her first eye doctor visit scheduled for early July.

Doctors doctors doctors ... Lilly will be seeing her pulmonologist Friday morning along with her surgeon for a g-tube follow-up. And then her physical therapist that afternoon. I'm still playing phone tag with her audiologist to see about an appointment for the complete results of her hearing tests. And next week it's back to the cardiologist. I think my daily calendar is one of the hardest working things I have in the house!

"Therefore let everyone who is godly pray to You while You may be found; surely when the mighty waters rise, they will not reach him. You are my hiding place; You will protect me from trouble and surround me with songs of deliverance." - Psalm 32:6-7

Super Supplements

Tonight is the night of our family camp out. Only Lilly and I are just camping out in spirit. The rest of the family is in the backyard in a tent. (The 2 older children have been asking to do this for a long time.) But the thought of lugging all of Lilly's equipment out and running extension cords to the house, was too much for me. (Add that to us trying not to have her out in the pollen very much.) So Lilly and I are blogging before we have a girls only slumber party. Not as fun but it will do.

Today I found some outfits I liked for Lilly at the thrift shop. Some were impractical now that she has the g-tube. Others were larger sizes. I have a really hard time with those. It's hard to know what will fit her in what season. She's almost 11 months old and is just now starting to grow out of size 3 months. And the other problem is I feel panicky at times wondering will she even still be alive then to wear whatever it is. So I usually just put the stuff back. I guess it sounds like I don't have much faith when I think like that. I do though - and it's growing. (Another Lilly lesson for me.) I am a "work in progress" for sure.

I have always added a supplement to Lilly's milk called Advanced Ambrotose (by Mannatech.) This is a glyconutrient that promotes immune system health at the cellular level. There are a lot of documented studies showing this has helped others with problems like Down Syndrome and autism. Now we are adding two new products from a company called RBC Life. This company and some related people were generous to give me some free samples when I was pregnant with Lilly. One of those freebies was a product that is now available to the public called VitAloe. This is another immune boosting product, which Lilly badly needs. It helps with digestive issues too. You can read a summary of this product at: http://www.rbclifesciences.net/pdfs/vitaloe.pdf The other new product is called Stem-Kine. This one is really interesting as it regenerates damaged tissues. It supports bone marrow to produce more stem cell. See:
http://www.rbclifesciences.net/pdfs/stem-kine.pdf
Lord willing, these products will really help Lilly's body.

I am down to just needing to lose 13 more pounds to be back at my pre-pregnancy weight. I read Dr. Sears' High Speed Fat Loss in 7 Easy Steps and one of the recommendations was to take a 600 microgram chromium picolinate supplement once a day. I started in early May (500 mcg) and have lost 5 pounds. Really exciting since I've spent much of the month with Lilly at the hospital and didn't do much other than eat and sit.

Grace and peace!

Better days

Weight check = 10 lbs. 9 ozs.

Life has been extra busy since we've been home from the hospital. I feel like I'm still trying to get unburied. (I have a bunch of e-mails that I haven't had time to answer, but I promise I'll get caught up soon!) But it is good. Lilly is feeling very well and is happy and smiling a lot. She didn't talk at first but that has come back in the last couple days.

We have noticed what a big difference it is making in Lilly's congestion by not having the NG tube in her nose anymore. There are many days now where I don't have to use the Nose Frieda (suction) on her at all. She's also started sneezing some (she never used to for some reason) and it's pretty funny to watch. She will scrunch up her whole face, then turn beet red, then out comes a quick little sneeze.

I gave Lilly a little yogurt to try yesterday and she ate it pretty well. She seemed to like the consistency.

The other day I walked into the room where Lilly's pulse ox is and found my 2.5 year old son sitting there with it. He had plugged it in, turned it on, and hooked the sensor up to himself! All this medical stuff is completely normal to him.

If you are a fan of pug dogs, look close at Lilly's onsie. It says "pugcake." That was a gift from Lilly's aunt that has a pug and all sorts of pug paraphernalia.

"Lord, you are our Father. We are the clay and you are the potter. We are all formed by your hand . . . look on us, we pray, and see that we are your people." - Isaiah 64:8-9

Hannah Grace's story

Lilly has been doing well and I've been so busy trying to catch up at home a bit. But it's wonderful! We visited Lilly's Pop today in rehab. (He's still slowly recovering from his stroke this past winter.) Today is his 78th birthday. He had lots of smiles for all of us, though still can't talk.

While at our last hospital stay, a mama of a Trisomy 18 angel, named Hannah, shared Hannah's picture and story with me. I urge you to read a beautifully written story about Hannah's short life at:


http://kwantfamilycorner.blogspot.com/

Hospital recap in pictures

Here are pictures from Lilly's last hospital stay. (May 7 - 18)

In the emergency room:

Extubated on Mother's Day after almost dying:

Lilly was hooked up to 7 pumps delivering medication and nourishment:

Oxygen and monitors on the other side of Lilly's bed:

The nurses put ribbons in Lilly's hair:

Raise your fist and yell "SURVIVOR!!!!"

Extubated and smiles for mamma and daddy!

Sleeping her way to recovery:

Dressed and ready to go home!

The end!

Looking at these pictures makes me want to cry again with relief that God allowed Lilly to survive. Again. We just love her so much and can't imagine not having her with us.

"Love never gives up, never loses faith, is always hopeful, and endures through every circumstance." - I Cor. 13:7

Back home where we belong

Weight check= 10 lbs. 1.5 oz. (Weight loss at hospital. Lilly's working on it - she pigged out on coconut oil last night.)

We got home late yesterday afternoon! I've always liked being at home, but I have extra appreciation of it now. When I laid Lilly in her bed last night she just couldn't stop smiling. Even babies love their own beds.

By the way, my brother P. took the liberty of fixing the time lag for my posts. So now the time you see I published the post on is the actual time.

I'll post our hospital-stay-in-pictures as soon as I have a chance.

Going home!

Lilly and I are packed - and she's wearing regular clothes again for the first time in 11 days - and we're waiting for our ride home! We are so nervously happy! :)

The doctor feels that Lilly's alarms going off this morning, when she was in deep sleep, is simply normal for her. She wants her to go home and enjoy the best quality of life that she can - surrounded by her family that loves her.

Amen!! Thank you God for once again being faithful and getting us through this stressful time!