One more football fan in the family

Charlie and I went out to eat tonight and took Daniel with us. Its a football game night so of course we were watching OSU  Cowboy football. They were playing LaFayette, Lousiana, so I had some split emotions. When a Louisiana team is playing , we usually cheer for them.  Louisiana is still where we call  HOME!!! As we ate, Daniel cuddled and didn't cheer much but when we got home and turned the second half of the game on, Daniel started to let loose ! He is laughing and hollering and roaring his very loudest roars of pure delight as the crowds are cheering. I'm laughing because the only other  time I heard him cheer for a team was when I was helping him cheer for the New Orleans Saints. We watch a lot of football ( and baseball, and basketball and tennis too) so I know his usual  responses. I don't know what it is that he is enjoying so much  but he is having a great time and THAT makes me very happy!

2 days without bibs!

YES!! We have gone two whole days and Daniel has not used up 6+ bibs , which was his minimum  in the pre-op days. He has not used up ONE bib! NO reflux, minimal drooling from a change in positioning, but  WOW WOW WOW, I have not needed to change his shirts frequently throughout the day either! Feedings  are going so well: there is no crying, no trauma, no frustration, spitting and not knowing what to do( Daniel  OR  me)  and Daniel is noteably a happier baby! He talked to me quite a bit today, he sang, I am sure he was a bit confused about feedings. I watched his face as his meals were flowing via the tube right into his tummy and he had the funniest look going on! I could tell he knew something was going on, a familiar fillng tummy sensation perhaps  but absent was the struggle to GET that  tummy filled. I love it!! Naomi loves to help me with Daniel's meals now. She has learned how to set up his equipment, she helps me set up the tube, is so careful to clamp the tube shut, close the ports on the top end of the tube, unclamp for me when we are set up to let Daniel's meal flow, she gives him his water flush to clear the tube before we disconnect.I know we needed to get the shunt put in  and very sufficiently healed before  we scheduled the feeding tube surgery, that is fine  but I am so very glad that it is done now. IF  ALL this feeding tube does is make meals comfortable for Daniel, with no major weight gains or other "improvements" it will have been enough! Whatever benefits may result from having the Mic  button and tube pale in my mind right now to the comfort  and ease with which Daniel can have nourishment . If you are among those who never watched me feed Daniel before, you have no clue how horrific meals were. This tube is PRASIE MUSIC-worthy!!!!!!!!!!!!!!!!!!!!!!!!
And Daniel himself. NO adverse effects from anything. He is doing absolutely GREAT! Dear HEavenly Father, thank You for getting Daniel to this point and for keeping his body strong and healthy enough to fly through these two surgeries and to heal so easily. This Mamma's heart is over flowing with gratitude, praise,  and relief for our baby an his improved state of affairs!
We are now in WEDDING COUNT DOWN MODE . ONE month from today October 6 is ESTHER and CASEY's WEDDING!!!!!!!!!!!!!!!  Still lots to do, but its coming together. It really is!

Waiting, praying, sending money

Waiting and praying over the children who will be Josiah and Keren Jubilee...............
It was so exciting  this afternoon   to send the CAR WASH  and BAKE SALE  money over for new clothing and for  food !!! Western Union is an amazing establishment, and while I'd prefer the fees that it takes to use Western Union   go directly to my children, the fact that I can guarantee delivery of funds from here to West Africa in MERE MINUTES  is just about worth its fees. I don't  say that often or about every organization or mechanism which I need to use.  THANK YOU  TO EVERY PERSON seen and unseen  who let us wash their cars  and  /  or   who gave to our fundraiser to help our children while they wait for us and hope that we will be able to come and get them :  LAST YEAR.....................  This year already... WHEN MOMMY????
 All I can say is "GOD  YOU REIGN!" I hate that they are not home with us yet, but  I rejoice that  my children are in school  and have food and  will have clothing that fits!!!

New morning

Sweet Daniel is so stiff from the IV immobilizing his leg for  4  days, he is way  more "Froggie" than usual. I see a lot of massage and warm compresses in tthe future of his leg therapy. He was a bit disoriented this morning I think, but for the first time since surgery as I'm holding him, he is talking his little "coo and  roar" talk to me!!!!!!!!!!!!!!!!!!!!!!!!!Even has  a smile or too!!
The kids are fascinated that feeding is so simple and stressfree with the tube and big syringe. He had goat milk and cereal last night, his first food through the tube and that went very well. He has not needed any pain medication and fell peacefully to sleep in my arms as I rocked him and had a whole night of uninterrupted sleep. ME TOO!!!!
His rocking chair ,which I thought would be so great for a long time to come,  is not so great  after all because its at too high of an angle, even though it is quite reclined. At almost any angle, he can't do his passive  swallowing, and the drool factor takes over,We have had  no reflux or vomiting since surgery but the drool will continue to be an issue. I'm thinking that I will get him a wagon, pad it nicely and prop him up at just a bit of an angle so we can keep him in whatever room we're in, but in a more comfortable fashion since that cute rocking chair  didn't work.
I am really blessed by the music  of the band, Kutlass. Their version of one of my other all time favorite hymns (  "It is Well" )   is my #1 song to share with you today, I   also  REALLY   like their song, "Amazed" from that same cd, but I can't find it for  my playlist just yet. . I did find   a Youtube video I hope you'll play late. It is super!!! I pray that you will be blessed by this young band and their heart of worship for our God. I can't wait to be in Heaven to hear the composers of 1700's  music playing in concert with the 21st Century musicians. I am thinking when the clouds are " rolled back as a scroll" there will be a whole lot more understanding  across the ages of how The Church has worshipped in music in its various stages and styles.Kutlass does a great job of cutting across some decades. See if you agree!

No photos, just GLAD TO BE HOME!!!

Ahhhhhhhhhhhhhhhhhhh! Even though I was only home for about 25 minutes before it was time to pick Jael up from  the high school, take her to a doctor's appointment and to go the grocery store for things run out of over my absent weekend, it was HOME!!!!!!!!!! Daniel seemed to sense it too. His eyes were just darting from sound to sound as if trying to reconnect with them and put himself back into them. He  is doing very well, was not nearly as disappointed as his sister Naomi or brother Gideon that the Dolphins lost their football game so miserably , but rather fell asleep prettyearly on into the game.
Home cooked  Sloppy Joes with chips, Tater Tots and lots of conversation made for a great evening back with everyone. That wonderful lunch at Olive Garden with Charlie between Hospital and Home was pretty awesome too! Can't beat Minestrone Soup with fresh salad and bread sticks. Daniel didn't care about that. Lortab and a full tummy caused him to sleep though that entire part of his day.
How thankful we are to be home and that Daniel is doing so very very well! Better than a "Scoobey Doobey  Do Yah!!"

why is accurate medical charting so important?

Because a baby who was promised a Sunday discharge will NOT be discharged if someone passes on a bad piece of information or puts it in the WRONG CHART. We are still in the hospital at 9 AM  Monday. The Resident came in at 6 AM and  asked how Daniel was this morning (sound asleep thank you until you came in and threw his covers back and poked his tummy  without speaking to him and you scared him silly) and I  replied that he was fine, just like he had been on Saturday and all day Sunday:no fever, no vomiting, lots of wet diapers, tolerating feedings well, no need of pain medicine....what I had said Saturday night and Sunday morning. I asked why we had been told yesterday morning we would be going home and then the orders were not written and discharge denied  last night. He said that they had to keep an eye on Daniel because he had diarrhea yesterday."NO he did not have any diarrhea or any other form of  b m .."  No one asked us all day long about this so it makes me think it is not in Daniel's actual chart, but that this bad info was passed or mistakenly noted by the Surgical Residents themselves when making rounds.  As I was trying to console Daniel from the Resident's  assessment skills, one of the Residents made the comment,
boy he is really whiney fussy isn't he?" (DEEP BREATH Mamma, deep breath!)
   I slowly explained that while  I understood that they could not stop and explain everything to every patient before they did an assessment, in Daniel's case, he is blind, has severe spastic cerebral palsy, is very cold sensitive, and very easily startled. By not speaking to him before exposing his body to cold and touching him, it would most likely take me 20 minutes to calm him down. etc, etc..... (It did.) I hope that by not going ballistic or rude on this young group of future physicians, but gently teaching about PATIENT as PERSON that they will remember Daniel and take a bit of time in the future  to approach other patients as people before they approach the object of their rotation in med school.
Nurse pause.

AAhhhhhhhhhhhhhhhhhhhhhh! We are discharged! No more leads, no IV, no pulse oxymitor , just a calmed dowwn contented-looking baby in my arms as I type one-handed! Charlie is on his way!

There are no "night rounds"

so there will be no discharge orders tonight. We are here until whenever the orders are written tomorrow.
Peanut butter and graham crackers and tea anyone?

The latest update is not making me smile...

Well, we are not released and its 6:30 PM. The resident said just now that they want to keep Daniel one more night "to observe him". He has taken his tube feedings, he is peeing and passing gas, no fever, no vomiting...everything they told me he had to do and not do. SOOOOOOOOOOOOOO I am waiting for them to make rounds so I can ask them in person why we have to stay when we have been told since Friday morning that if these things were good, we'd go home on Sunday, and why they told me this even this morning. Even the nurses who were prepared to discharge him are confused because Daniel has done so well.
I did get to share some good fellowship with the Sunday chaplain a  little  while ago. I had a nice visit
with the  other chaplain last night, but this visit was fellowship,and after we'd talked for a while, he asked f he could pray for Daniel and for our family and we prayed together...That was very welcome!!! I love being able to share our story  because I  love what God has done  and continues to do in our family, every chance  I get and I think that God used us to really encourage both of those men to follow after what God had for each of them. I'll stay an extra night if there is someone else that God might use me to encourage!!1

COMING HOME!!

YES!  Daniel has done so well with his feedings, with needing less pain medication, and with being very stable, that we have discharge orders for this afternoon as long as he does not have any unforeseen issues! Thank You Father for Your hand upon our baby boy. For all his "issues" he is strong and healthy and I think, simply amazing! AND since he is waking up and its time for a feeding , I am going to happily  oblige him!!!

I just love my baby boy!

I am so thankful that he knows my voice so that when he is afraid or hurting it really does calm him when I stroke his face or his hair, sing to him or pray over him. Yes it makes me feel good that I can minister to his needs,  but more than that,  I am so thankful that I am able to minister to him!  I am glad that he feels ministered to and loved on.How scary must it be, no matter how much brain material one has or does not have...to be in the dark all the time, be in a place which smells totally different from home, to have pain all over  his belly, no food for more than a day and a half, even if getting that food  into his belly was pretty crummy, to hurt too badly for his mommy to pick him up and hold him when he is used to be held a LOT. I always speak to him before I touch  him and  I always touch his arm or leg before I do anything to or with him. MOST of the staff do not. They come in, start to poke and prod and give little thought to Daniel THE PERSON. They are quite nice, but are very obviously not used to thinking about a blind, brain challenged baby's responses to their approach or activities.  I am sure someone silently removing YOUR covers off of your body in the dark would be unnerving to you   but you, or I could say "What do you need?" and have some understanding of our surroundings.When I see any staff coming to do anything , I try to jump up and be right at bedside to talk to Daniel and touch him before any assessments start.

BUT, the kind student nurse did turn the lights out so Daniel "could go to sleep"!  Somehow I don't think he noticed that. He is having a good night. I am so very thankful for how strong and healthy  Daniel's body is. He is a very precious treasure who shows me more of what makes him precious every day. Dear Heavenly Father, THANK YOU for Daniel and thank You for bringing him through these surgeries so that we might have more time to love him!

15 ml at a time... and 2 Corinthians 8

It isn't much when you think about it, but 15 milliliters at a time is what Daniel is getting through his new feeding tube. That is just about three teaspoons of liquid, or half an ounce, and that only every three hours! I can give him some sips (or little squirts of  his syringe) of water by mouth too and he is doing well. We don't want to give him too much a tine time to start out so that the stitches at the top of his stomach/ bottom of his esophagus won't be stressed by too much fluid at one time. He has an IV running so he is getting lots of fluid and electrolytes  but this morning I could tell that Daniel was HUNGRY! Hunger is not something that he exhibits typically  but he has not gone this many hours without being fed either! It made  him pretty cranky to be so hungry! The morphine didn't seem to do a good enough job of managing Daniel's pain so Lortab via his feeding tube was substituted and that seems to help him quite nicely. There  have been no signs of infection, and we are keeping his body temp up with layers of blankets and socks on his hands and feet. I didn't have a cap for him but he has a towel covering the top of his head.  Its so good to know that we've kept him warm during this surgical experience. We should be coming home tomorrow, and from the number of phone calls and emails I've received today, I can be assured my family is VERY READY!!

Thank you all so very much for your prayers for Daniel at this time. We have been so aware of God's presence !!

As we continue to pray over  our children,JOSIAH BENJAMIN  and KEREN JUBILEE, as we fund raise for them in the here- and -now, and for the future, God continues to be so faithful in showing His providence for them! People gave to our car wash and we will be able to provide the necessary funds for clothing and food. HALLELUJAH!  People have continued to bless us through my friend Jill's CHIP IN Fund. I know that ONLY  God can move on people's hearts to give to a family essentially sight-unseen because someone else, essentially sight-unseen, asks them to.Yes people that she and I  know have blessed us, but mostly people who know God, but not us. As I  was thinking about  that this week,God showed me a verse He had put on my heart  over FIVE YEARS AGO for these children!!!We were still nose deep in trying to get our Isaiah home and reunited with his BIO-sisters whom we'd adopted the year before. A series of not-in-the -best-interests-of-the-child decisions had been made  and those caused us to dig in so deep in prayer and political activism for Isaiah's very life. GOD PREVAILED and the three siblings Charlie and I met in 2002 WERE finally home by August 2006. In May 2005, God gave me a challenge from 2 Corinthians8:8-15"...It is to your advantage not only to be doing what you began and were desiring to do a year ago but now you must also complete the doing of it that as there was a readiness to desire it so there may also be a completion out of what you have,....." We had been talking about  a sibling pair in Africa  even before Isaiah came home. We were not ready quite then, Charlie in Iraq  for two years and  Isaiah then coming home, but God was really calling us to COMPLETE what He had called us to. We won't stop praying and trusting God until this chapter of our life is completed and THEN we can start praying and trusting for the NEXT chapter!!!

Surgery....Scoobey Doobey DO YAH!!!

We  are praising God that Daniel's surgery was uneventful, uncomplicated and so far Daniel is doing very well. THANK YOU for your prayers for our precious baby boy! He is still sound asleep, and heavily sedated  but we've reaffirmed that he is definitely conscious, not  in a coma! His tummy looks like a 4 year old got loose with a box of bandaids because of the laparoscopy incisions on his tiny tummy, and in the  middle of the bandaids is his new Mickey Button.

Keeping warm!!!

My sweet baby boy!

Scoobey Doobey DOO-YAH! Daniel has  a Mickey Button!
No more traumatic feedings!

We have not used it yet, but will give him some Pedialyte a bit later in the afternoon. When Daniel had the shunt surgery we discovered just how inadequate Daniel's thermo-regulatory capabilities were when he got so chilled internally that it took us hours to warm his core temp back up to normal. Even Sunday when the outdoor temps dropped  in Oklahoma, our house chilled and so did Daniel. We need to be very mindful  of the temps and how they affect him. With the last surgery showing us how careful we have to be with Daniel, the staff were super about getting Daniel warmed before the surgery and keeping him warmed during and afterward. He's been awake a little bit now, in and out, his nurse was quite happy to see that  he had a nice wet diaper! Next we need to see that his intestinal system starts up again (you know...gas, maybe some BM...) and then of course make sure that he tolerates the feeding tube feedings.
We are so thankful for how well Daniel has done with both of his surgeries! God certainly has a plan straight out of Jeremiah 29:11 for him,"...plans for a hope and  future............." We have been able to share parts of Daniel's story with many people, and every time to give God the glory for sparing Daniel's life until He could put us together with this special baby and become his forever family.How  "funny" that I just said that because the Chaplain just came in to ask if he could pray for Daniel. I ended up sharing Jesus with him!! He was raised in India  as a hindu but became  Christian as a teen, he explained to me.
He stayed and shared some things with me,but then asked me lots of questions about my faith and how God gives me strength for my life. My mention of goat farming led to even more conversation and I suspect that we will be seeing him again!!! It makes me smile to see how God has used our goat farm to make new friendships and provide opportunities to share our faith!
Daniel is waking up a bit more and was pretty alert. We gave him some morphine for pain. He really did seem to be hurting since the caudal anesthesia wore off (kind of like an epidural for labor and birth) and back to sleep he went!  He is however  now wearing his big bulky warm OSU orange and black socks, even though this is OU territory and OU / OSU are fierce rivals!

OSU socks!