Since I posted this so close to the last update, please check that one in case you missed it.
The answer to my problem has been found. As I have been updating this blog with cool gadgets, Twitter is the answer to my blog and Facebook updates. I can text message a quick update throughout the day to keep people up to date on what is going on with Kayleigh, so I don't have to post every single night and you don't have to wait for it to come!
Also, with the limited amount of time we have in a day, I can focus that hour or so that I am posting on work or quality time with Aimee. I will continue to post updates of the most important things in case people missed it on Twitter or Facebook, as I still need these posts to be included in the book that I am writing about our journey.
So, throughout the day, you can go to the side tool bar of the blog (over to the right) and follow the updates that I text from my phone. You can also, click on "follow me on Twitter" and I am guessing you will get updates on your blog or sent to you. (not quite sure yet, still learning).
Thank you all so much for your prayers!
God Bless,
The Freemans :)
40 comments:
I thank God for allowing Kayleigh to show you that she was not ready and am happy she is starting to get better again. I am going to try to figure out this twitter thing, because I am on the sight hourly so that I don't miss a thing. I am praying diligently as always.
In His Grip,
Katie
GREAT IDEA!!!!! Seeming as I check your blog like 50 times a day...I promise I am NOT a stalker :) just hoping Kayleigh is OK!!! MckMama uses Twitter and it is great to see her updates about Stellan. Thank you so much for allowing us to join you on Kayleigh's journey! What a precious gift she is! It is just amazing how much she has touched all of our hearts...most of us COMPLETE STRANGERS...but we love and care about her so much, too. Keeping you, Aimee, Allyson, and Brandon in our prayers, too.
Hoping the kids had a great Christmas. I know you got your best gift, ever!
Elizabeth
massachusetts
I'm so happy to hear that you added twitter! I know from MckMama's site also, that if someone is "following" on twitter, you can go to "settings" then "devices" and enter your cell number to get updates to your phone. I LOVE it!
Still praying for your family!
Kim
Nebraska
Love it! Keep fighting little girl.
Thats great to hear, because Im so interested in fighting with little Kayleigh!! She is a tough little cookie !!
Prayers to you :)
I am the mother of a preemie and while in the NICU I became friends with a women whose daughter weighed 15 ounces at birth. She never came off the vent and her lungs were so damaged that they didn't want to cause anymore damage so she went in to get a tracheotomy(sp) surgery. Is this something that could help your Kayleigh? Has this ever been discussed?
kayleigh is a strong little girl. she amazes me every day. i am really praying for everything to work out for you guys. you will like twitter. i am completely addicted to it. you can update from your cell phone and link it to your blog and facebook... it is pretty neat.
with love
Just wanted you guys to know that my family and I are praying for your beautiful little girl. Also wanted to tell you that your daughter shares a birthday with my son.
I pray that God will bring total healing to Kayleigh, and that this New Year will be filled with blessings for your family.
I have been following your blog for a few days now. I went back to the beginning and read it all. What a little fighter you have. God is so good, and I am praying with 100's others that your precious little one will win her fight!. what a strong testimony your family has. Praying this New Year brings lots of miracles to your little one.
I love the Twitter thing! New to me but since I check on Kayleigh about 100 times a day I love the little updates! The prayers are still coming.
With love from Southern NH!
PS Did Alyson and Brandon get their suprise gift at Christmas??
My family and I are praying for you guys, Kayleigh is a strong girl, God will help her get even stronger and overcome. She is a true blessing!
PS love the Twitter!
Wishing you a happy and healthy 2009. Your a strong little girl Kayleigh and so many are praying for you! Stay strong peanut!
Praying for you in South Dakota!
Love the Twitter as I to like many others check on sweet Kayleigh many times a day!
Laurie
Twitter is awesome!! Thanks guys for doing it!! I'm so happy to hear that you were able to hold Kayleigh's hand!! What a wonderful New Year's gift.
Praying that the right decision is made in regards to the cardiology situation.
Hoping Brandon's finger is better!!
HAPPY NEW YEAR FREEMAN FAMILY!!! Completely hoping for many miracles to come your way.
Elizabeth
Massachusetts
I found your blog today, and I am just amazed at your strength. I will pray for Kayleigh, and continue to pray for all of you. God bless you for sharing her and your story. Both my two kids were almost micropreemies but miraculously God kept me pregnant until 35wks with both of my kids. I can't imagine all you have experienced in the last six months, your strenght from the posts I have read is amazing. I have had my son have many medical issues but nothign in comparison. Thannk you for reminding me of God's grace and for sharing His strength in your lives!!! God Bless you and Miss Kayleigh
~Danielle
PS: how do I grab your button for my blog? I would love to have our family and friends pray for your beautiful little girl. (Sorry I am a little computor iliterate with that type of thing)
~Danielle
HAPPY NEW YEAR FREEMAN FAMILY!
we are still praying that all is great.
Happy New Year Freemans! My first prayer of the year will be for Kayleigh! I just got home and it's almost 1:00 a.m. and put my four kids to bed! I had to check in before I turned in as well! I'm so glad she had a great day and you got to hold her!
Karen
cincymomof4
Wishing you a 2009, where your girl comes home healthy to her beautiful nursery. Health, Peace, and Strength to the rest of the Freeman's as well! Love, the Johnson's in CT
Twitter, what a great idea. I, too, like many others, check your blog many many times each day looking for the positive updates. I pray for her each and every day.
Happy New Year and may this year bring your sweet Kayleigh home to her beautiful pink and brown room!
Glad to hear that she is having a good day so far. I know that the distance between where you are and CHOP is big, but, like you said, what is best for Kayleigh is what you and everyone wants! If this move will help her improve quicker, then hopefully God will guide the drs decisions in that direction.
Thanks for the updates!
Elizabeth
Massachusetts
i have been reading since before kayleigh was born. You just might think seriously about chop. This is an odd comparison but just read it. My husband is a mechanic and he says sometimes you just need a fresh set of eyes. I has said he has looked at a car for hours, looked at it a few times and just cant figure out the problem. Then it is another mechanics turn. And sometimes they find the problem. When the first mechanic fixes the car the can get tunnel vision, they might miss the problem. And the second guy looks at it and they just might find the problem right away. I know sweet Kayleigh is not a car, but just give CHOP a chance. I am glad you mentioned it. I have been thinking for a few weeks they maybe a fresh set of eyes is what you need.
Best Wishes, Love to Kayleigh
I have heard wonderful things about CHOP. I agree with many postings today about how fresh eyes and a new perspective might bring fixing the problem for our wonderful baby Kayleigh for this great new year. Sometimes things get missed in the medical profession and having a new person look at her files may provide a different avenue that may have never been explored that could possibly work for her and get her home quicker. Being a nurse sometimes I see this happen where the doctor's call in experts in different fields to really try to figure the problem out. I think this is an excellent move and one that was put in your path for a reason. This may be the solution to the problem. I hope Miss Kayleigh is having a great night and that you guys are getting some rest. This year is going to be great and I know that Kayleigh will continue to show all of us God's plan through her fighting spirit and faithful heart.
Love
Amber
I agree that CHOP may be a solution too. Our son was at Stanford for two and a half months without getting well. Two weeks after bringing him home to a Las Vegas hospital we went home. Sometimes new people see things that have been missed. Also I mentioned before my son had similar episodes and isoflurine helped his lungs recover. I am sure you get SO much unsolicited advice. Sorry to offer more. We are still praying for all of you and will continue to as long as needed. Take care sweet girl and sleep well tonight.
Good luck at your scan Kayleigh! Praying that the Drs get what they need from it and you don't have any episodes!!
Love Elizabeth
Massachusetts
Soliciting help with Twitter, for those of you who are better at this then I am, I signed-up registered my cell phone and everything, however I am not getting text's any ideas? I really think this is a cool idea and I would love to get my updates on Kayleigh this way.
Thanks,
Katie Anderson
katie@appletitlellc.com
Katie:
I am having the same problem. I cannot access Twitter from work so I wanted the text messages so I could stay up to date. So anyone that has had success could you let us know how to get the texts to go to our phones? I have also registered my number but I cannot even get the HELP function to work for me.
Thanks
Amber Hoberg
amberkoepp@gmail.com
Great news about possibly coming off the vent!! Keep doing good Kayleigh and hope you sleep right through that CT scan:)
I'm so glad to hear that she is progressing. I pray for good news everyday. Keep is up Kayleigh!
I want y'all to know I have been praying for Kayleigh! Keep hanging in there Little Lady!
Loving these postive updates! MAybe just maybe Kayleigh is on the mend..........Let's hope and PRAY she stays on the uphill~~
Still Praying throughout my day~~
Kristie
CHOP is about 30 minutes from us and honestly will take my 4 kids only to that hospital if the need be. They have wonderful resources, expertise,kid and family oriented. Plus they have access to experimental studies/drugs that other hospitals can't try out yet. They will make you feel very welcome and do their absolute best at accomodating you since you aren't "local".
You and your family remain in my thoughts....good luck today!
praying every day for God to watch over Kayleigh.
so glad to hear that she is back in her bed and resting comfortably!!! way to go kayleigh!!
elizabeth
massachusetts
Way to go Kayleigh- your such a strong little thing! So glad to hear that things went well today! Praying for you peanut!
Laurie in SD
If she does go to chops remember they have a Ronal Mcdonald house which is such a blessing~~
My heart is filled with JOY JOY to hear these postive updates....
Can I stand on the mountain top and yell for Kayleigh? I just read your twitter update!!!! GOD si so so good~~Praise GOD!!
I am so overjoyed to hear that she is on only 35% O2, my 35 weeker was on 40 for a while, I remember that number well. I am praying for you guys and my 4 year old is praying with me, she asks about Kayleigh all the time. I showed her your blog and she insisted we start one for her sister too. Please come visit if you get a chance.
http://www.odessatylermele.blogspot.com/
God be with you always
Tanya
I have been following this blog for some time now and I don't know that I have ever commented. I just wanted to say that if Kayleigh does get moved to CHOP, everyone there is absolutely awesome. My daughter was born in 8/07 and shortly after birth suffered a stroke. She was transported to CHOP where she only spent 4 days and then was released. It was a God-send for us to be so close to that hospital and I am forever thankful for all the awesome people at that hospital! Thank you for sharing Kayleigh's story with us!
PRAYING SHE WONT NEED A TRACH! IN JESUS NAME!
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