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****** PRAYER REQUEST ***** OUR BABY ***
captain culpepper
| 11/21/01
| captain culpepper
Posted on 11/21/2001 8:25:30 AM PST by Captain Culpepper
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To: Captain Culpepper
I'm a pediatric Physical Therapist and treat babies every day from about 8:00am until 2:00pm when the case load turns to after school kids. I have treated many babies that I would consider "floppy babies" but have never heard this as a diagnosis. It seems that they are probably still looking for a diagnosis for your son. In my experience I have heard many parents describe hospital experience and the doctors don't make promises they are not sure of and don't want to give you hope in case they are wrong. It is better to err on the bleak side and give you a surprise when it gets a lot better than they said. I can't promise you either but I can tell you that given a choice of treating a child with very stiff muscles over a child with floppy muscles there is a great deal more functional promise in the floppy babies. Many have problems with eating. We address this in therapy as well when they come home and reach the age where this is necessary. Many get feeding tubes and later learn to eat. It is not unusual to not be hungry in the first 2-4 days of life. All movement takes soooo much more energy for these children. They sleep for hours after their therapy. He is probably exhausted from birth. If your hospital has a NICU it probably has what it will take to get your son through the critical stages. The kids I see now are in so much better shape than they previously came from the NICU. You can't pick these kids out in the schools at all. If the eating stays a problem they will get the immediate need taken care of but don't be overwhelmed by what seems permanent. I have seen kids who ate nothing except from a tube for 18 months switch to eating by mouth in a matter of a few weeks with therapy. So many parents get so overwhelmed at this early stage that they can't see how beautiful their child really is or they are afraid to attach because they are greiving so early. All of the kids I see are happy and wonderful creations of God and their parents and sibblings love them even more because of their determination and courage. Keep praying for a diagnosis that is treatable and for the strength to make the decisions that you will have to make in the coming weeks as well as for a miracle because they do happen. Centex's wife
To: Captain Culpepper
God bless you from California..Thinkin about you and praying for you and yours.
To: Captain Culpepper
Is there an update on his condition? I am believing in a prompt response in answer to the prayers of all these FReepers. God be with you and give you His peace.
223
posted on
11/22/2001 1:42:12 PM PST
by
whoever
To: Captain Culpepper
Encouraging news indeed! Hope his improvement continues, as will all our prayers.
To: Captain Culpepper
A prayer for your family and for your sweet baby. I'm glad to hear he is making progress.
225
posted on
11/22/2001 7:38:13 PM PST
by
Helix
To: Captain Culpepper
Prayers for your dear little baby.
To: Captain Culpepper
Danny the name of my father and brother a good strong name! I have lifted this wee one up and will hold him up until you say the word that we all are praying for. He is fine now.
To: Captain Culpepper
Prayers conintue, in expectation of "hearing" of your son's complete deliverance.
To: Captain Culpepper
"Lord Jesus, we lift Daniel Patrick up to you in prayer tonight. Thank you for his improvement this Thanksgiving day. I pray that these precious parents find peace knowing that you hold this little life securely in the palm of your hands and that their faith in you becomes the bridge that turns their fears into trust." Two years ago I posted a Thanksgiving prayer request for my pregnant neice who's car had been totaled in an accident. A truck hit her side of the car. It was a blessing to have the prayer support and to read the encouraging words of those here on FR. Mommy and baby did fine. His name is Joshua and he will be two years old in a few months!
And...baby Daniel is already a blessing! What a joy to read a complete thread full of encouragement!
Lori
Comment #230 Removed by Moderator
To: Captain Culpepper
Good to hear things are looking up. Your Daniel is still in my prayers, as are you and your family. Keep us posted.
231
posted on
11/24/2001 6:27:14 PM PST
by
r9etb
To: Captain Culpepper
You're in our family's prayers. God bless you all!
232
posted on
11/24/2001 6:37:23 PM PST
by
pke
To: Captain Culpepper
"...first water and sugar, and now on to milk..."
____________________________________
FANTABULOUS !! !! !!
To: Captain Culpepper
Continuing in prayer, and rejoicing with you ...
Pegita
234
posted on
11/24/2001 7:05:47 PM PST
by
Pegita
To: Captain Culpepper
We have a great and good God who hears our prayers Captain. You keep that baby safe, we'll take care of the prayers.
To: Captain Culpepper
Our prayers are with your little guy and with your family.
236
posted on
11/24/2001 7:14:20 PM PST
by
SEA
To: Captain Culpepper
Heartfelt prayers for Daniel Patrick and his loving family.
To: Captain Culpepper
May His hand touch your little one. Praying for peace and health for your beloved family.
To: Captain Culpepper
I just wanted to give everybody a little update on our little Danny and again thank everyone for the prayers.
He is making, in my words, "slow but steady" progress. He is eating more and more and seems to have better tone by the day. I believe the prayers are working and ask that everyone keep them coming. We also had him baptized yesterday.
Daniel Patrick is having an MRI and EEG today and hopefully we will know more after these tests, as we are still on hold with a diagnosis, as "hypotonia" (low tone) as a syndrome is as close as we are gettting from the docs so far. I am starting to get frustrated, but am trying to ask the right questions and make sure they are getting answered and that we are making the right desisions for him. We ask that you pray for us- his Mom and Dad too as going back and forth to the hospital is tough on us both. (My wife has been home from the hospital since last Friday.)
Our five year old daughter got to see her little baby brother last Friday night which was very nice, and the back and forth without Mommy and Daddy for her has been a strain for her too. Hopefully he will be home sooner rather than later, and again we pray for that too.
I will keep you updated, and again thank you and God Bless.
To: Captain Culpepper
Here is an update and great big thank you to all of my fellow freepers who have prayed for our little Danny!
Danny has been home from the hospital since December 4th and is doing great! He was discharged without a diagnosis as all of the tests that were done were negative. His "slow and steady" progress became remarkable and by the time of discharge, the treating neonatologist-in response to my question- said his movements were "normal" for any two week old!
His first visit to the regular pediatrician showed that he put on 10 ounces in the first week he was home- up to 8 pounds! He thinks he is doing great. He has since been seen in the office of the neurologist- last week- who saw him in the hospital. His observation was that he was still "floppy" after his head stayed back when he lifted him up.. the office visit was about 5 minutes my wife said- and he asked her 4 times how old he was (one month to the day). I wasn't crazy about this particular doc the first time I met him and this last visit only served to lower my opinion further.
Next up was a physical therapy visit yesterday who I believe was realistic with her views in the hospital and yesterday's visit was also similar. She said he is doing remarkably better than when he was in the hospital. However, his feet turn inward somewhat which could be a result of his low tone beginning and a little weak in the neck-- but this could be normal as well for a 4-5 week old. She recommended PT once a week to keep an eye and look for progress. To be prudent,my wife and I both agree and are very optimistic. The next doctor visit is in a couple of weeks with the pediatrician and neonatologist.
The bottom line is that Danny is eating great, showing good progress in all areas, is an incredibly alert baby and my wife and I believe in our hearts that he will be fine. We are trusting our instincts, and while we are listening to the "experts" like the aforementioned neurologist, we are believing what our own eyes, ears and hearts are telling us.
Big sister loves her little brother and we are all very grateful as Christmas approaches.
Thanks again to all for all the prayers and we believe that they were- and still are being- heard and is the Number 1 reason Danny looks to be a happy, healthy one month old!!
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