Neurosurgeon Visit........

Lily and I went to see her neurosurgeon today. She had an ultrasound and then an office visit. Her ventricles measured a tiny bit larger, 1.5 and 1.6 last time both measured 1.3. He said that in one image, they looked identical to last week. ( I agree) It could just be the person that did the scan. One interesting tid-bit though.... he was unable to locate the cyst! He was pleased and we return in 2 weeks. The next time he has ordered a CT. He wants to know exactly what is going on in there. He said right now she is "Golden." I asked him if she should see a neurologist and he said nope.. no reason to at this time. He stated once again that studies show that people with at least 1mm of cortex are just as intelligent as someone that was born normal.

Soooooooo.. we head back in 2 weeks! Thank you to all for your continued prayers!

Howdy........

Hey everyone! Phew... Lily must be going through another growth spurt. Yesterday was a eventful day. She was cranky off and on, wanted to eat and be held all day. Needless to say, that was all I was able to accomplish.
She was finally able to get in her "European Bath." (looks like a bucket..lol) Ken and I took a video of her.. So cute! She LOVED it! Yesterday she discovered Chloe our rather LARGE kitty. I was able to get a video of that as well. She is toooooo cute! I thank God for her everyday!
She was scheduled to see her Neurosurgeon on March 5th however, we got a call from his office yesterday and he is going to be out of town all next week. Instead of bringing her in when he returns, he wants to see her this Friday. She could of seen a different Dr. in the practice but he didn't want to do this either. His scheduler said that he has become "possessive" over our little Lily... I told her, that is perfectly fine by us! What a great Dr! :D So, she is scheduled for another ultrasound and office visit this Friday. I will post an update after her appointment.

On a different note, I do not have an update yet on Baby Jackson but PLEASE keep him and his family in your prayers.

Here are the videos that we have taken of our sweet Lily.
God Bless!

"Whatever you ask in my name the Father will give you." – John 15:16

Please Pray for Baby Jackson!

One of my best friends forwarded this email to me this morning... Please Pray for Baby Jackson.


This is a Jackson Bensten update. Jackson is Everett & Jessica Benstens' first child and both the maternal and paternal grandparents first grandchild. Lee-Ann and I are honored to be called "Aunt and Uncle". The following is sent by Mark and Cathy Geary:

David:

All,

Thanks to all of you who are praying for Jackson Bensten and his parents,
Everett & Jessica. Feel free to pass this along to any person or group you
know would pray.

As a reminder, Cathy is the great aunt of 14-month old Jackson. Her sister
is the maternal grandmother, and Jackson is the only grandchild so far for
either set of grandparents.

He has been diagnosed with Stage 3 neuroblastoma. A softball-sized tumor is
in his abdomen and a smaller one is there as well.

He is home for the weekend and goes back Tuesday to CHKD in Norfolk for the
genetic marker test, which can determine how aggressive a form his NB is.
It varies, and we are praying for the least aggressive form.

His preliminary bone scan this week was CLEAR! This was the first GOOD NEWS
and we are asking God to keep giving us more and more good news.

He will have another bone scan Wednesday and chemo is set to start Thursday.
He has a porta-cath to accept the chemo drugs.

He will be re-admitted Tuesday or Wednesday and the treatment plan will be
set.

We who are family continue to pray for healing.

Pray as God leads you to pray.

Thanks again for caring.

Mark & Cathy

Let me be more specific....

I guess I should have been more specific when I wrote that we were going to follow BW. We are fully aware of our daughters medical needs and would never do anything that would put her in jeopardy. In our time at home it is apparent that she likes a routine/schedule as do we. I realize that things WILL arise, and things will change. We feel that it is important to have the same parenting style when caring for Lily so she learns what to expect. I want her environment to be as structured as possible. Hence the "Eat, wake/play, Sleep" pattern. We are NOT on board with the CIO (cry it out) theory. I would never allow her to cry for more than 5 minutes. In that case, I would know without a doubt that she was fed, changed, and not ill in anyway. As far as her feedings go... typically she eats every 3 hours. If she is hungry at 2.5.. I feed her. She is a growing baby and there is no way that she will be deprived. We like the fact that there is a routine. We can watch her closely in how she responds. My husband and I try to have a plan in life... for us "winging it" causes chaos. Yesterday morning I started her on her "wake-up" time. She ate, we played for a long time and then I put her down for a nap. She slept for about an hour and a half and awoke right on cue for her next feed. I tried to do this the entire day; but, I followed her lead. If she didn't want to "play" after a feed then I put her down for a nap. We had minimal crying/fussiness and we all had a very good day/night. She woke up with in 30 minutes of her "wake-up" time and we started the cycle again. Currently, she is napping. I put her down awake and she cried out in frustration once, her binky fell out. This also gives me an opportunity to really listen to her cries, to learn her needs better. I realize that "some" people do not use common sense when following BW or any other "program" for that matter, please be assured that we are not one of them. :) We sincerely appreciate the concern. God Bless!

Movin' and Grovin'

I'm trying to get Lily on a "schedule." While pregnant I read "Babywise." The book was given to me as a gift from a vendor that we used at work. I read the entire book and wanted to implement it in our lives.... until, we received Lily's diagnosis.

Two nights ago was a bit of a challenge around here. She was SO restless! The only thing that I can think of is our mini-morning schedule was disrupted b/c I had to take her to the Doctor. The fact that she decided to stay awake the entire time we were at the hospital for the ultrasound and then for her office visit, and the ride home. I think that she was a bit "over stimulated."

Yesterday, she didn't nap well or eat well. Grrr.... So, last night we put her to bed about 8ish and when she woke for her 11/12 feed she ate really well. So far today has been good.. PTL! This morning when i was getting her day started... sponge bath. I always put her in her crib so that she can look at her 'friends." LOL So, I left the room with her laying on her back. When I returned she was laying on her left side! I wish that i could have caught that on video... hmmmmmmm.. I may have to set up some sort of web-cam in there! LOL..

Have a blessed day everyone! Oh.. I have started "my" blog.. it can be found if you click on my profile link. I have only made one post but there are a few things that I want to write about there later. :)

Oh... I wanted to share this, I received the offer via email from Shutterfly.com

Enjoy a free photo book:


http://www.shutterfly.com/shop/Photo_Books_8x8_Story_Book/product_c18020-p3101


Promo code: PHOTOBOOKS

Check up with the Neurosurgeon.........

Lily had another Ultrasound this morning and then upstairs to see the Dr. He is very pleased. He said that the ultrasound looks the same or maybe even BETTER than last time. (2 weeks ago) He wants another scan and visit in 2 weeks. I asked him when will it be safe to say that we are "out of the woods?" He said that he didn't want to sound depressing but there could be a chance that she could start to fill again @ 6 months. Right now she looks great and I am SO grateful! God is good ALL the time! We are so blessed to have her in our lives! Her "button" is almost healed... I am eager to try out her European Bath-tub. We will be sure to take a video...hope that she doesn't hate it! Well.. Here are a few cell phone pics and a quick video from this afternoon. I couldn't resist putting the little bow in her hair. God Bless!

Lily's first snow.......

These are from yesterday. I know, not a lot of snow.. but, snow non the less. :D

2 months old today.......check-up

Wow! 2 months already! I took her for her 2 month check up, shots and to check on the umbilical granuloma. Her "button" looks good. The extra tissue is still drying up and starting the flake off. She said to wait 2 additional days after it falls off to put her in the tub. Her head circumference was 40cm (75th percentile) her weight was 9 lbs and 8 oz. (25th percentile) She only gained 4oz since her last visit 10 days ago. She was not really worried about this. She said that if I want I can bring her by and get her weighed next month. If at her 4 month check up she isn't gaining then we will come up with a game plan. Her length was 22.5 (45th percentile) Overall they were "pleased" with her. She asked if she is making "agoo" noises yet. It's hard to tell.. she squeaks and does make some noises. She asked if she is smiling... YES but, I think that she is going to be "serious" like her daddy. She got her shots.. poor baby. She is currently sleeping. She has eaten a tiny bit and wants to be held.

She has an appointment with her neurosurgeon Thursday too. Oh... here is a link to watch a video of an endoscopic fenestration. Lily's cyst was located in the middle fossa. This shows left middle fossa. Pretty neat.

http://www.medicalvideos.us/play.php?vid=646

Howdy!!

Things are still going well. Lily is a little stuffy this morning. I hope that she isn't coming down with her first cold. :( Yesterday she was very clingy and literally wanted to be held ALL DAY! She wanted to nurse allot as well. I also think that she is/was going through a growth spurt. This morning she looks bigger to me! So being she wanted to be loved on all day yesterday, I took some time researching a few things on the net. I'm getting really good at one handed typing! LOL! I found a site about breastfeeding and etc. I found it very helpful. I also decided to create my own blog to ramble on about things that I am interested in or to share ideas and etc. I am still interested in cloth diapers and did a bit more research on that. We have not yet had to buy diapers. Between her being in the hospital, shower gifts, and birth gifts we have been using those. I figure I may have about a two week supply remaining...

Well, my new blog will be listed here once I get it "designed" and etc. :)

Here are a few cute cell snaps from this morning:

Just a hello!

Everything is going well. Lily's fontanel is still soft and sunken! I have noticed that she is spitting up a little more here lately. I don't think that it is reflux but I will mention it to her Pediatrician when we see her next week for her 8 week (2 month) check up and to check on her belly button too.

It was 75 degree's here today so I took advantage and put her in a cute little Capri outfit. Thanks Sara and Lindsey! :D

Lily Bug.......

I recorded this video yesterday. Gotta love my high pitch baby talk! LOL

No Church today...........

We had a "rough" night so we are not going to make it to Church again this week. :( I hate missing it but, if Lily and I were to attend we'd be sitting out in the lobby anyway. All night she snacked and in doing so she had us up every couple of hours. I have tried taking her clothes off, burping her, changing her diaper... I don't know what is going on. Its almost like instead of nursing she thinks that "they" are comfort companions. Does anyone have any additional ideas??? Please share them if you do.

I have also been trying to decide if I am going to create another blog to exercise my general ramblings... I have been praying about our financial situation. I know that God wants me home with our children but I also know that we need an additional source of income. The other evening Ken came to me with an idea.. it's a great idea.. now we are in the process of creating a "business plan" and I continue to pray about this to see if this is the direction that God wants us to go.

Romans 12:2 (NIV)
2 Do not conform any longer to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will.

Yesterday I took Lily to meet all my "ex" co-workers at Dollar Tree. (Corporate office) Everyone commented on how small she is and that her photos make her look so much bigger. :) It was great seeing all of you.. I miss you all. :) Anyway, so then last night we went to visit friends of ours that just had a baby on Wednesday. He is 7 pounds. Lily looked HUGE compared to him! LOL

I am hopeful that we have a "good" night. I am going to attempt to make it to Church in the morning. I'm getting good at getting the two of us ready and out the door on time. :D :D

- Philippians 4:6

Do not fret or have any anxiety about anything, but in every circumstance and in everything, by prayer and petition, with thanksgiving, continue to make your wants known to God.
- Philippians 4:6

Just a reminder to myself.

Confirmed............

Lily has a Umbilical Granuloma. It is being treated with Silver Nitrate. Baths are on hold. I'm sure that she will not mind. LOL Her European bath-tub arrived yesterday. I'm eager to try it out. Oh well.... We have to wait a bit longer.

Oh.. and she was 9lbs and 4oz at today's visit.

Umbilical Granuloma... I think.........

I think that Lily may have a umbilical granuloma. I am waiting for the pediatrician's office to call me back. I'd like for them to look at it today. She has a hearing test scheduled at the hospital later today. We are unable to find where one was done before she was discharged. I have already rescheduled this appointment once.... Hope they call back soon........ it's already been almost two hours.

Cute pic from a few minutes ago.......

Wow!!!!

We just returned from the Dr. and we got a great report! Let me say that we are not out of the woods yet BUT Lily's ultrasound looked great! Her ventricles were smaller and the cyst was a great deal smaller. When Dr. Dilustro looked at the scan his response was "WOW!" He wants to see her back in two weeks and said not to think that we are "out of the woods." The cyst is the smallest it has Ever been! We are so grateful for all the continued prayers and we have been so blessed through all of this! He also said that he thinks that she will have limited developmental delays if any!!

She is such a miracle and a blessing to our family!!

A few new Photos and a Video

I am happy to report that I don't have a whole lot to update. Lily's fontanel is still sunken and soft! I think that her head looks smaller or maybe her cheeks are filling out more. LOL We see Dr. Dilustro tomorrow so I will be back then to update what he says and what her ultrasound shows. I'm praying for a wonderful report! :) I will say that she is more and more alert everyday. She is staying awake for longer periods of time and can focus on things a little bit longer. We are still getting to know each other... even though she is now 6 weeks old! The hospital time has prolonged things. I will say that she HATES bath time! I had looked at a "European" tub before she was born and have decided to order it to see if this helps. Whenever she is bathed she quickly goes into melt down mode and we pay for it the rest of the night and through the next day. (At least that is what has happened the last couple of times) I'm hoping that it comes quickly b/c I don't want to have to bathe her again without it. LOL Here are some photos that I took of her this morning. :) God Bless!

Lillians Birth Announcement