A Daniel story

We go out to eat   almost every Tuesday night at the restaurant where Esther is the Server Most Extraordinaire and we are pretty well known by staff and clientele alike for our  rather large but always very polite presence. Early on in our patronage when staff saw us coming they were  not always  so eager to be our servers but as time went on and they learned  we were "Esther's Family" and that we helped to clean up the table and surroundings and always said "please " and "thank you" we became THE  family to serve. More lately we have just  asked for Esther because its one of the few times that we can hang out with her.Anyhow, we are known. This week we were noticed by and approached by a family I'd not seen before, and who had not seen us before either so they must not be 6-8 PM  regulars, but I digress....
A  masculine voice from behind me said, " I hope I'm not interrupting your dinner. You sure have a pretty baby." At that moment as I turned to acknowledge the voice,  Daniel went into big seizure mode and became very distorted in his appearance. I saw that the man was holding a little boy in his arms, a boy of about 3 who in all his blonde blue-eyed super- cuteness, also had some visible physical special needs. I thanked the man and agreed with him. He proceeded to tell me that his little guy had a P1-N-6 or some combination of those letters and numbers  Syndrome and began to apologize as the boy got rather  agitated. I spoke to the little boy and asked if he wanted to see the baby, which he  did, but what he really wanted was to give me  a kiss!!! He was making kissey gestures toward me, and his dad was kindo fo uncertian howI'd respond. I asked it  were ok to pick him up, got an OK, scooped him up and he planted a big sweet one on my cheek. We talked for a short while about our boys and their various diagnoses, which led to talk of pediatric neurologists , neuorosurgeons, and brain surgery . TURNS OUT they use the same neurologist that Michelle Riggs referred me to and whom Daniel will be seeing in August. They love  her and said that they could not say enough good things about her and how pleased  we too, would be to have her caring for our baby. What a great "chance"  (thak you Heavenly Father!!)  meeting which I know will grow to something more in days to come. I'm so thankful that they came over to speak to us and so glad we could give positive affirmation to each other about the incredible value of our very Special children!

The Wedding invitation: reposted

Apparently the codes for the Smilebox  wedding invitation website  do not work with Blogger and the invitation as  I posted it  moved all my entries around and sliced into my sidebar. SO, my apologies to anyone who was trying to visit late last night or this morning... I have taken the animated musical version of the invitation down and replaced it with a still image. I love that animated one  in which the butterlies flit  about as the invitation opens bit by bit until it all comes together into the image above. It was/ it is  my intent to invite you all.to either come in person or be with us in prayer !! I can't get the x-large image to print in its entirety either but clicking on the image does make it large enought to read easily!  My song pick for this post is my alltime favorite love song by the Stylistics circa 1972..."Betcha By Golly Wow!  You're the one that I've been waiting for...forever, and ever will my love for you keep growing strong!"

Surgery, and home again

We arrived at OU Children's Hospital at 8: 30 Am on Wednesday. The Daddy held his baby boy until  it was time for me to go with Daniel to the OR for his anesthesia

God is so good and we had a great time, if that's not  a weird way to decribe brain surgery! Daniel did so well all the way thought; his surgery took less time  than we were told it would, he recovered easily and discharge was a speedy 24 hours after surgery! The OU Children's Hospital staff were so wonderful to us and we had so many opportunities to talk about GOD and HIS LOVE, God and His calling of adoption on our family, adoption adoption adoption to so many people , God's love for ALL OF US and HIS PLAN FOR ADOPTION THROUGH HIS SON JESUS,  and how much we love Daniel. I can think of at least a dozen people who would not have been exposed to a large family adoption special needs children, or adoping in general  if not for Daniel! We had nurses and trnasporters , CT scan techs and admission staff asking so many questions which almost all started with "Did you KNOW he was 'that way'  when you adopted him?" Our answer of "yes we met him a year + beforewe were able to bring him home" was a great conversation opener and let people know we'd answer any questions they had.

EXCEPT that Daniel does not have , and we hope he never develops, an infection, these poster photos show how a shunt is inserted, and where. Our major differences are  that Daniel's shunt was done much higher up on his head (think the hands of a clock and go to about 2:00 from the hole in picture #2) and Daniel does not have all that brain material

Daniel has a two inch incision on his tummy right next to his belly button where the shunt was threaded in and up to his brain.

Here we are  in the Pre-op holding area right before they took Daniel to the OR.  They let me go along, I held his gas mask until he fell asleep. Then about 1 3/4 hours later we were backtogether in the REcovery Room

In Recovery Daniel was resting verycomfortably .

Tah-DAH!!!!!!!!!! Thursday afternoon , ready to be discharged s soon as the IV  comes out

 

Does this baby look like he just had brain surgery the day before??!!! Thanks Dr Mapstone!

the diagnosis is "Hydranencephaly" hydro-cephaly = anecephaly

Hydranencephaly is a congenital malformation of the brain characterized by the absence of the cerebral hemispheres, an incomplete or absent falx and a saclike structure containing cerebral spinal fluid surrounding the brainstem and basal ganglia5. Approximately 1 percent of infants thought to have hydrocephalus by clinical examination are later found to have hydranencephaly3. Hydranencephaly is found in 0.2% of infant autopsies.
After doing a lot of reading and researching I spoke with and emailed with the doctor and asked if  THIS, rather than hydrocephaly  was a more accurate diagnosis for Daniel and he told me that this was more than likely the case after reviewing the MRI  films again. My use of the words "small brain" earlier were incorrect. Daniel has very little brain, not a small brain. His other physical characteristics fall more in line with this diagnosis as well.  The aim of surgery for children with hydranencephaly is comfort since there is very little hope of increased brain function after shunt surgery. We discussed  Daniel in more depth and how a shunt would be the better choice, perhaps the only real viable option for Daniel. Several hours later the  nurse called to ask if we were ready to go forward  and if we were, did we want to be included on Wednesday's surgery call. Charlie and I had spoken some, but with this call, we needed to talk immediately and were in agreement about the shunt surgery  and that doing it as soon as possible would be the best choice. The surgery date of Wednesday July 21  was confirmed yesterday afternoon. Today we went to the hospital for pre-op lab work and paperwork. Daniel pitched a huge angry fit over my putting shoes on his feet, a huge fit.  When the nurses applied the tourniquet to first his arms and then to his legs in an effort to find a vein, he didn't fuss at all, he barely responded. Even having his heel stuck for the blood work didn't initiate a cry. What a boy!!!! Everyone has been so very tender to Daniel and I am so grateful. SO  different from our  DAY ONE seeking medical care!!
We will take Daniel to the hospital tomorrow early, he'll have the surgery about 11 o'clock and believing that all will go well, he will be discharged on Thursday afternoon!! I'd like to thank you all ahead of time for your prayers for Daniel while he is in surgery and during his recovery period!

This is Where the Healing Begins " by Tenth Street Norrth

I've been hearing this song on our Christian radio station for  about a week and I LOVE it!!
Hope this blesses you  as you listen.
Please scroll down and mute my play list so you can play the video and hear it while you read the words!

My Philippians 4:8 evening

"Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy (other translations say "of a good report") —think about such things."  There is so much that we are praying about, SO much, but for now, I am shifting the focus  to JUST the Philippians 4: 8 qualified thoughts and images

Cambodian  style wedding photo                           Western style photo
The wedding was certainly  ALL of the above   characteristics in my favorite verse!!

            

Daisy and her kitttens about 2 weeks old in June  Cats will have kittens, this is a true  thing

and the remaining two kittens in July

Esther's dog  Heidi and her puppies born about July 1. Dogs who break off their chains and visit young lady dogs who are "in season " will have puppies 62 days later . This is also true............

two of the pups up close............they are cute (loosely translated "lovely")  for now! The  "Real truth" is that the mix of the parent breeds makes these puppies officially Junk Yard Dogs ! TRUE!!

Aslan, Malachi's Golden Retriever, age 6 napping on a bench on the back deck. Those are NOT  his puppies. That is a good report.

Brownie loves to hop up on top of the cat house. The little girls used to milk her up there because she was easy to reach that way.That was good.

When I was in Liberia a mother bird successfully made a nest on our porch. She and maybe another visiting mamma bird laid eggs   which all hatched and fledged pretty quickly. Admirable!! Note three white eggs and one speckled one!

Excellent and of a good report too!!

FAMILY!! Grand daughter Emily graduates from High School

My son Joshua, Daugther-in-law Diana and Emily

Lovely!

Rachel has such a good eye for photography. She took the shots  in my garden of the gladioli and the lily

More things that are lovely.............

Here are Naomi and Grand daughter Mady after a mulberry picking morning

More loveliness!!

Son-in-law Jon took this of grandbaby Charlie. This boy knows he's got it goin' on!! Solidly walking well before his 10 month birthday.  Admirable  for sure!

Rachel is also good at photographing people. These are her shots of  Leah

LOVELY

Naomi did a good job of catching her older sisters in a sweet smile too!

Our favorite 4th of July dessert   Any  flavored cake, iced with real whipped cream, topped  with fresh strawberries and blueberries:   Excellent!!

Yes this is the pot I cook spaghetti in, or gumbo, and some times its used for boiling crawfish. We DO have a pot even bigger than this one !! SPEAKING of crawfish,  I had to  "borrow" this photo from a friend's album. It made me so homesick for SW  Louisiana! Crawfish season is just coming to an end.

..........whatever is praise  worthy...This flock of geese impressed me! They take over the road, and stay together and stop traffic until they are where they want  to go. I took this with my cell phone looking  out my Suburban window while I waited

whatever things are noble......this is certainly a noble effort, and it amuses me every time I look at it!

if  anything is excellent

THINK  ON THESE THINGS!

The Neurosurgeon visit

Good morning all!

I really liked Dr. Mapstone the pediatric neurosurgeon we met with yesterday. He was very kind but I sensed that he was very confused as to "why" Daniel. One of his early questions was " have you adopted him yet?" with a sort of gentle "can you get out of it?" implied. I shared with him a little bit about how we came together with Daniel (that I was a follower of Jesus,  ) and how I had seen changes and lessened deterioration since we began to pray for him and make plans to bring him home. We were very honest with each other about Daniel in terms of expectations now and in the future. I felt like he respected me and didn't talk down to me .

That said, the results of last week's MRI were more stunning than I had prepared myself for. I "thought" I had readied myself for a suggestion that we do nothing surgically, but I was not as readied as I had hoped. I did not cry while we were with the doctor: I had too many questions to ask and to much to listen to and prepare to research later.

Daniel has very, very little actual brain. (it is unknown whether he had brain matter and lost it to fluid, or if he was born microcephalic (little brain) AND hydrocephalic) Instead of the approximately 100 ml of fluid which should be in his 2 year old head, he has about 2000 ml. Compare the volume of 1/3 cup measure to a 2 litre soda bottle: what your child has as opposed to what Daniel has.

Doing no surgery will not have much of a negative impact the doctor thought, because obviously he is draining off some of the fluid in his head. A total blockage would result in a much larger head, more brain cell death... ( Essentially: since there isn't much brain material there isn't much more cell death to occur that would not result in death itself.) Daniel does not seem to be in contant pain as he was last year and he is not totally irritated by tactile stimulation ( these are classic signs of hydrocephaly on the move)

Surgery will reduce the amount of fluid in Daniel's head, which will reduce the size of his head making him a bit more proportional, will make him more comfortable certainly, but will more than likely not cause any restoration of function for him. Dr Mapstone said that he has done brain surgery long enough to know that there are no real answers to that "will my child improve?" question before doing any surgery, and often even after. Because the fluid is so dense in Daniel's had he could not see much of anything...except the absence of brain material. As I said, there "could possibly" be increased brain function after surgery, but it is absolutely unknown IF or HOW MUCH.

He gave us several options and since hydrocephaly is fairly new to me I didn't know there were options beside shunt surgery.

Our three options are

1) nothing

2) shunt

3) choroid plexectomy

4) endoscopic third ventriculoscopy ( the subjects of 1-4 I am doing MUCH READING about right now!)

I knew that the shunt option carried with it a lot of life long implications, risks of infection, need for replacement, etc etc... as in: every time Daniel might have a fever of any sort its a trip to the ER because that fever could be shunt /brain related and not just a cold or virus. Cerebro-spinal fluid checks are the only way to diagnose or rule out a brain infection with or without a "plain infection" but that is life with a patient with a shunt.

Another option is to remove surgically a choroid plexus which is the little section in the brain which makes the fluid. As I understand this, there are more than one of these plexuses (plexi??) in the brain so fluid would still be made, it has to be there, but would lessen the amounts produced and hopefully create a more normal brain environment. Its a riskier surgery than the shunt  but is usually a one time affair. Because shunts are "easier" many neuro surgeons prefer them to the older methods in #3 and #4, but I read a recently revised statement from the College of Pedi-Neuro-surgeons stating that the #3 and #4 options are NOT obsolete or uncalled as previously stated, for but that in some cases ARE necessary and beneficial. One statement I read from a year ago was testimony to how intricate our brains are and how far science still has to go in knowing how to treat or even address them...in that science is still "incredibly challenged" by how to treat brain issues.

Charlie and I have not had a chance to talk in depth about all of this, but I think we are leaning toward the choroid plexectomy. IF Daniel were cognizant and could tell us if he had a headache or ear ache etc, we'd feel better about the shunt. As with little Abby Riggs who sees the ER and so many doctors so often even when she CAN explain her symptoms, Daniel could not tell us anything that would indicate shunt related issue vs "common issue and we would need to rely upon hopsital visits and tests.

IF the choroid plexectomy were successful, Daniel would  likely not need surgery again, and risk of infection would be minimalized because his incision sites would be healed. AND, since we are hoping to have a feeding tube inserted, that very process which would make feeding much less traumatic could be a source of infection with a shunt present which could "double whammey" everything.

There would be no way to do brain and feeding tube surgery simultaneously either. Brain is SO SO STERILE and any "gut surgery" is considered "Dirty surgery" because the GI tract is not sterile. (Sterile procedures all the way of course, but I understand what he meant)

Dr Mapstone told me to go home , take a few days talk to Charlie and call him regardless of what we decided to do, even if we decided against surgery at all.  We should be able to have brain surgery scheduled within a week or so from when we talk to Dr Mapstone again. He also suggested that a feeding tube was a good idea but we needed to decide which we wanted first: brain surgery or feeding tube. IF we do the feeding tube first, he needs to be at least a month healed up before brain surgery takes place  to minimalize risk of infectons. Ditto the other direction if we do brain surgery first. SO, that begs the questions Do we aim for increased brain function and hope that swallow reflex is present and returns so we don't NEED feeding tube

OR

Do we do the feeding tube to make life a bit more pleasant and postpone brain surgery ?

Much matter for prayer.

How ironic that after each of our babies were born, we praised God that they were healthy and didn't have.......................

pretty much everything that God gave us in one Daniel-ized package!!!

FINALLY.an update!

When did days stop having 24 hours and who forgot to send me the memo??
Malachi and Sopheak are quite happily married and returning from a lovely sounding honeymoon on the beach coast  and a wonderful beautiful hotel judging from the photos Sopheak posted. Her visa appointment went very smoothly last week and all is right on schedule for Malachi and Sopheak to return at the end of July. I know her parents and family will miss her tremendously as thier family is close like ours is. Its been very special for Malachi to be there for two months with her so that they got to know him much better before he "took their daughter  away" to Oklahoma!
Our  son Caleb also got married last week adding not only  another daughter-in-law to the family but a 9 year old grandson as  well. We met them briefly  before they got married over 4th of July weekend. They all came from Kentucky for the holiday.  I guess we'll get to know them a bit more when they come back for Malachi's American wedding in mid August.  How many moms have two sons get married within three days of each other? It was one roller coaster of emotions for this mamma , I have to tell you!!
Last week we were blessed with a very last minute openeing at the Pediatric MRI  center where Daniel needed to be fully anesthetized for his MRI procedure. He had his MRI done on Wednesday and it all went very well for him. Our appointment with the neurosurgeon is this afternoon. I don't know what all will happen at this appointment but my hope is that we will  be able to schedule surgery for the shunt placement and  make arrangements for a pedi-gastroeneterologist to also be available to do a G-tube intertion for feeding  at that same surgical time.( Naomi's  Pedi-Gastro doc does not practice at this facility so we will have two Pedi-Gastro docs in our lives!! She sees her Pedi-Gastro  doc   in a few weeks to assess status and do labwork. Last visit her viral load numbers were so very high but she'd grown quite a bit  and his idea was to up the dose of antil-viral medication and hopefully catch up with and overtake the virus before drawing blood again. She has not responded to the meds very well so far, but this med is really our only choice for the time being .)
Daniel has done well at home, except for feeding times. Having no swallow reflex causes a lot of issues, and for me to stimulate a response from him so that he will swallow.  (think nursing a baby or bottling a baby, they fall asleep, you flick their foot or some such thing to wake them up, make them fussy and inspire the to go back to feeding.........................) at every feeding or drinking. A 5 cc syringe helps with fluids, sometimes,  since he does not take a bottle or drink from a cup.  Fluids spoonful at a time are very messy and most innefficient. I had a formula scoop that I used for a while, but  the syringe works better and gives me better control over speed or slowness of delivery.
He does love music so when I sing to him that usually brings some smiles, as does coming along for praise and worship practice at church  and being in church for music time. I put him to sleep with soft music at night and nap times too. 
Drool..................there are not enough bibs or wash cloths to keep up with the drool, but the reflux seems a bit better since we started Zantac ,  well  sometimes  its better. I never go anywhere without a new bib and a fresh wash cloth.
I'm sharing some photos from 4th of July. Esther and Casey put together a big 4th of July BBQ so that we could meet Casey's parents. Pretty good group photos considering how many people are IN our  family group these days!!

Smiths and some Rogers too

Casey is on the far side with him mom Cindy , his nephew  Jaden is the blonde boy  next to Casey's dad Eddie,

Ther rest are Smith Soup ingredients with Caleb in oragne in back, Hannah and Jon with Charlie  Madyson and Blake on the right side

Can't get the glare out of that photo so Noah is kind of overshadowed in back but  here's a big portion of our crew!
Gideon , Leah, Jael, Noah, Isaiah,  Esther , Isaac, Caleb,
Daniel, Charlie , Naomi, Linda, Hannah and Rachel
Next  family photos will have Malachi and Sopheak, Tiffany and Bryden too

Photos from Malachi and Sopheak's wedding!!