today is my first day since kyle came home that both boys are off to school and we don't have a doc appt.
so - I have worked on Medicaid - ahhhh! interviewed several pediatric physical therapists, made more doc appointments, read 2 studies given to me by one of our attendings in the NICU and now I am sitting down to update on kyle.
no profound dramatic thoughts today - just an update!
Kyle is 17 1/2 inches long, weights 6 lb 4 oz. He is one week corrected and 4 months by his Bday. He eats 3 1/2 ouces 8 times a day. he eats every 3 hours in the day time and every 3 to 4 at night. most nights he makes is in 4 hour sessions. John does one feed every night! This is amazing!!!! Kyle does seem to have his days and nights mixed up a bit - no more or less than my other two did. it is funny to me though b/c he is not "really" a new born! anyway - he likes to keep us up at night for now!
I think it was all the partying that he did with the night shift in level 3! but I won't point any fingers!!!
He grunts and groans and wiggles and makes all those cute little newborn type noises! He does wake up every now and then during the day to play and watch and be read to. yesterday he laid in my lap and watched jack and I play race track with the train set!
He loves to be in the swing but breathing wise can't seem to handle to much of the bent sitting up position so we also lay down alot.
He still has a clot in his heart - haven't got the official recommendation about that yet. He still takes a shot everynight - I DO NOT DO THIS - it is all john - I am not nearly as tough as i thought! and still does have a hernia and will have that surgery some time in the future. He is developing an umbilical hernia also - they will probably take care of that too?!
He is so cute and so cuddly! Loves to be held! he loves his bath time
Here is a new pic.
i am begging to realize what a miracle he is. In the moment this is hard to see but when I have a chance to step back and realize that I have a 6 pound 4 month old that was healthy enough to come home from the hospital on just one med that leaves us in a couple of weeks (hopefully!!) and gets all of his nourishment from a bottle - amazing! He really is a miracle. The courage of a lion and the spirit of a king and the goodness of our God.
wow.
Please keep praying for kyle's brain to be fully restored!
Thank you all for your help on the medicaid stuff. a form was filed wrong by our medicade case worker causing it to not retro activate. so there was no coverage from kyle's bday until 11/1. This is a set of 10 very expensive days. a form has now been filed to try and correct this but even though it was medicaid case worker mistake they can't just go back and correct it. so it is a wait and see for now. I don't see how they can hold us to that or keep us from the benefits. any thoughts are welcome. also any thoughts on getting babies to wake up in the day and sleep at night? hahahaha!
We really are doing great!
21 comments:
Kelly,
Kyle is such a handsome little boy! Just like the other two! I am so thankful to God for all He has done for your family! I am still praying for complete and total restoration of Kyle's brain and will continue until we see it come to completion!
Prayerfully yours,
Amanda Ogletree
Hey Kelly...I was pulling up the KSBJ website and this literally "jumped off" the page to get my attention! When I was finally able to get to it- because it disappeared as quickly as I saw it!!!) I thought about you! I know you get so stressed about doc's and their comments and rightfully so...They're haven't exactly been chocolate and sunshine! Anyway...here's the comment:
"Our Miracle
05-17-2007|
On July 2, 1997, our six year old son was life flighted to Hermann hospital as a drowning victim. One of the first things I told my friends that came to the hospital was to call KSBJ and have them pray for Cody's complete recovery. The listerners did pray and stand with us. The first 9 days were very trying, reports of 'irreversible brain damage' , 'herroraging lungs' and 'infection'. He was in a coma and all we could do was to trust God. God literally put new lungs and a brain in our little boy. Today, we have a perfectly healthy 16 year old, junior in high school with a 4.0+ GPA! God does listen and God is faithful! Thanks KSBJ for being there for us! Ella Texas City, TX "
Bottom line...doctors have to give you the "worst case scenario" and then look fabulous whne something greater happens. Their liability is too great to say anything else in addition to the fact that they truly DO NOT know! The human brain is AMAZING and we use only a tiny, tiny portion of it which means that another part of the brain can likely compensate for any damage that might(?) be present and you'd never know there was an issue. God heals in an abundance of ways! Go ahead and live in your perfect "at home" world! That is where the most difference is going to be made anyway!
In His Love and In our prayers!
Debra Robinson
HE IS BEAUTIFUL!!!!
STEFANIE
Kelly,
I "hear" you say that you don't see the miracle here and then you say it is. You are correct in saying that Kyle is a miracle from God. I love the picture. Thanks again for allowing me to be involved in your son's life. I am still praying for your family.
Candy Humber
thank you for sharing the new picture of kyle. he melts my heart every time i see him!
My son (a former 26 weeker) also had his days and nights mixed up when he came home. I exposed him to lots of sunlight during the day (opened curtains and shades during the day, etc) and made his room very dark a night and it really seemed to help.
Look at those beautiful little chubby cheeks! He is filling out so nicely! What a gorgeous and healthy looking baby boy! He has come a LONG way! We continue to lift you up in our thoughts and prayers! Hang in there!
Precious pic!!! Praying for you and your family and for little Kyle!
Maia ><>
I continue to pray for Kyle and you and your entire family. God has incredible plans for Kyle.
Hi sweetie friends - thank you so very much for another look at our miracle KYLE!! He is precious! I can see how he can consume your every minute along with Jadon,Jack,(& John). I'd find it hard to not want to hold him ALL the time! We continue to pray for everything you ask me to pray for. Thanks for letting us be a part of your lives. Hugs to all of you ! !
GranMammy B
Barbie Weller - Mansfield
Still praying ......... daily, and thanking God for allowing me to see His hand at work in such a God like way!! :)
Candy Humber
Just stumbled across your site. Your boy is beautiful. Our son had an umbilical hernia that we were told may need surgery. It does not and totally corrected itself...be encouraged and rest when you can :)
Wow!! Kyle looks soooo good!!! He reminds me of my little preemie. I am so amazed at how wonderful he looks and is doing. As I've said before, I'm a former 28 weeker's mom. My son is almost 3 now. You've got better days to come, I promise. Just keep the faith. God is good.
This is your cousin Brandy Mizell (Latayne's granddaughter). I haven't commented until now, but do know that I've been reading your blog since almost the beginning. Kyle looks FABULOUS!!! About Medicaid, keep fighting them! If you have to, get the media involved. Good Morning America's Chris Cuomo has helped a lot of patients with these types of issues--especially when it's the insurance company's or the state's fault. It would be ludicrous for Kyle to be denied coverage for his first 10 days due to Medicaid's error. Don't give up!!
Kelly - I am praying for a wonderful Saturday. Kyle is absolutely precious! I love the pictures. I am still praying for you and your guys (all 4 of them)!
Colleen
Hey there! We are dear friends of Jeff Johnson and he has been keeping us updated on your story from day 1. We have all been praying and thinking of you! SO glad to see they your sweet boy is home! Such blessings!
Dear John and Kelly,
I wish I had something profound to say...but I am speechless at the sight of your beautiful son. He is a miracle, that is for sure. We're so happy to know you all are at home together and enjoying your "newborn." How amazing to see the first picture of Kyle when the blog first comes up and then to scroll down and see your little man all filled out. Many thanks for letting us in on the journey. I'm sure you'll never know how it has strengthened the faith of so many - some of whom will never meet you guys. Even my two older girls have been witness to this miracle and were able to participate through their sweet prayers at night for Baby Kyle. He is simply beautiful...what a wonder!
Love,
JeanAnn Wiggins
hes soooo handsome and im so happy that everything is going well and i know that with each and every prayer from everyone he will be healed completely. my little one had an umbilical hernia as well and i got scared but the dr said no biggy with time as they start to sit up and their tummy muscles tighten it will go away and it did about 6-7 months or when they lay on their tummy!
I am SO glad that he is doing well :) I have been following your blog for awhile now and every night I pray for you and your family. What a beautiful little boy Kyle is. Best of luck to you :)
Hello to the Sherrill's...
Just wanted to let you know that I still pray for you all asking God to heal Kyle's brain and to help you both to understand all the Medicaid "stuff."
Candy Humber
Hello Sherrill's! I cannot tell you guys how much I have missed seeing you both! It was always so fun to sit and just talk to you guys in Level 3! Wow, what a miracle Kyle has been. It was such a joy to take care of him here. I still cannot believe he is home. God is so good! I certainly hope we can keep in touch. Please feel free to contact me anytime! My personal e-mail is mckenzie.jenn@gmail.com.
I love seeing these new pictures of him. Psalms 115:1
I am so excited for you guys,
Jennifer McKenzie
(Level 3 Day Shift RN)
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