Family Update-Surgery and Milestones

[Guest guest]

Last week still seems a blur to me as I am writing you this. It seemed last

week was the procedure or surgery week for members of the family as I had

surgery, my father had eye surgery, and JD had an Upper GI procedure. This

upcoming week seems more favorable with just many doctors appointments.

I will start with JD. JD had an interesting week. We are still quite

confused at some of the things we have found out but hopefully later this week

when we see Dr. Andersen, GI, some of this will get cleared up. JD has

learned to roll onto his belly and then back onto his back. He has discovered

that he prefers to sleep on his side mostly his left side. We have even

caught him sleeping on his tummy some. Along with JD learning to sit and

sitting

with no problems now we have started to discover that JD is beginning to

reach for everything in a sitting position that is in front, to the side, or

behind him without having balance issues. We also began to discover innocently

enough that JD is beginning to make the first evidence of crawling patterns.

He is also scooting some while sitting if that makes any sense. JD had an

Upper GI late last week and the results we got were good. There are no

structural problems with JD's upper digestive tract, the Nissen fundoplication

appears to still be intact and holding, and there is no narrowing of the

esophagus. Now to the confusion part. JD is still not tolerating feedings

well over

a fifteen minute interval through the feeding pump but we can initiate a

bolus feedings straight into his mickey button via a large 60 cc syringe and

feed him over a five minute interval with fewer spitting up issues. That

doesn't make sense. If he can tolerate the 5 ounce bolus in five minutes given

at

three separate 30 cc feeds he shouldn't have problems with the fifteen minute

bolus of old. We have discussed this with Dr. Andersen and he told us that

the feeding science isnt exactly perfect but we can live with what he is

somewhat tolerating and then figure a solution to the problem and his weight

gain

issues. It may be as simple as a formula recipe change but we will find out

later this week. Dr. Andersen is very good and will get on top of it. JD

had some bleeding issues out of his mickey button Friday after the Upper GI

but as of now they have resolved. JD has also been affected by his allergies

this weekend but as of right now we havent had to make any changes to his

respiratory schedule. He has spent the past week doing six hours off the vent

twice a day and has had no problems. We will continue that regimen and then

seek advice on where to go from there. We suspect it may be possible for JD to

be vent free by the end of September. That is if things continue to go as

they have. What we are noticing now more is that developmentally JD is

started to pick things up faster. He has made more progress in the last seven

days then he has over 3 months time. It seems like a big light has just

suddenly

come on for him and he has this new level of awareness and development that

he hasnt experienced. We are suspecting that despite the hearing problems

and other issues that he has that JD is very intelligent and it could be

possible that he possesses the same upper level intelligence as his sister

Olivia.

We suspect that but we are still not sure. Regardless little

is very smart and is starting to pick things up at a faster rate. JD is also

improving on his eating. Just last week for instance it was noted that JD

took seven bites of bananas number 2 gerber with no problems and swallowed it.

He is wanted to accept things more in his mouth especially a spoon. He is

also biting down. If you dont believe me ask his mother or his day nurse.

The next few weeks are critical for JD as we have more appointments and we

hopefully will get more answers. We dont suspect things to slow down for him

medically with appointments until the end of September. So he will be busy.

Olivia is continuing to blossom. We have made the decision to enroll her in

preschool. We believe she is ready for it and she needs more of the social

development. She will continue to have her sitter daily during our work and

when school starts for Mandy and I she will be enrolled daily in a private

preschool program that is close to my work. We believe this will allow her to

further continue her development socially and intellectually. Olivias

vocabulary is increasing daily. Her curiosity is increasing. She has already

hit

the terrible two's. Olivia is proud to tell you that she is a big girl now

in that she eats real food, sleeps in a toddler bed and can operate her mommy

and daddys cell phone and the house phone. She is still noted for calling

family members and we still cant figure out how she is doing it. I believe two

months ago she called up someone in Mexico and started to have a

conversation with them. She keeps her mommy and daddy entertained.

Finally, I was able to have my nose and sinus surgery with Dr. Brad Gamble

last week at Presbyterian Hospital of Dallas. Many of you know I was quite

hesitant in doing this due to not wanting Mandy to take on extra burdens with

caring for the children and then attending to me. I really had no choice if I

wanted to try and be free from the severe crippling grip of severe sinus

disease, severe nasal polyps and severe sinusitis which I had battled for nearly

twenty years. The surgery itself or the presurgery itself was an experience

but you can ask my wife about that. I think she found out that I wasn't the

best of patients to deal with however I do know that I had her rolling with

laughter as she escorted me and the anesthesiologist to the doors of the

surgery room. I do remember making the anesthesiologist, his nurse, and Dr.

Gamble laugh hysterically in the operating room as I began to experience the

effects of a sedative called Versaid. I was told I put quite a comical show

post

surgery in recovery and thoroughly kept my wife and the nurses entertained

and on there toes. I do know Dr. Gamble was able to successfully do the sinus

surgery and clear out all of my sinus cavities of the nasty material inside

them, he was able to successfully open my sinuses so that they could now

drain properly, he was able to clear my entire sinuses and nose of the severe

nasal polyps and he didn't even have to fix the slight deviated septum that I

had. I do know that I can breath through my nose and it should get better once

all the nasal passages heal and Dr. Gamble can suction my nose and I can

blow my nose and get rid of all that post surgery stuff inside my nose ( I dont

really want to gross you out by describing what it is like for a week post

surgery ) People say I sound different. But I learned a valuable lesson

through all this. God taught me and worked in my life about trust through

this.

I cant describe to you how fearful I was going into surgery. I didn't know

how things would turn out. I didn't know if something would go wrong and I

wouldn't get to see my wife and children again. It dawned on me about 5 am

Monday morning as I was outside before we left for surgery that I experienced

perhaps the closest feel to my Lord and Savior that I have ever experienced.

I cant explain it. Somehow as I was walking outside I knew He was with me

and I felt His presence. I even said out loud " You are going to take care of

this, arent you. " And suddenly I was at peace and knew that His will was

being laid out before my eyes. I learned to trust Him completely. I talk a

lot

about surrender and letting go of the control issues that humans

experience. But Monday morning I surrendered totally to the will of our Lord

Jesus

Christ and knew that He was going to take care of it for me and work through

Dr.

Gamble to get what needed to be done done. Total surrender in that I

mentally, physically, and spiritually trusted Him with my life and something

that

was beyond my control. I cant explain what happened except again like I have

before I felt so close to God and felt His actual presence. I cant explain it

but I know it was Him. Looking back it is just so interesting to see how God

is working in my, Mandy, and our childrens lives. Just when we think we

have seen it all we get knocked back with a new even more fabulous look into

the

glory of God and what He has in store for us. I will keep you posted on

post surgery progress as I see Dr. Gamble this week. Kudos goes to Mandy for

putting up with me ( I know that wasn't fun ) and for waiting it all out

patiently through three hours of surgery and then sitting with me during the

recovery room episodes. She is such a gifted woman and how she ever puts up

with

me I dont know even sitting in a boring waiting room at Presbyterian Hospital

for three hours during my surgery. I know it was hard on her but she never

complained once. God has transformed Mandy into a special woman who loves the

Lord with all her heart. Finally, I can say this if you need this type of

surgery done, Do it and dont look back, and I recommend Dr. Gamble, he is the

best.

We must close. I believe I have rattled off what seems to be a novel. But

like I said last week was busy. We will update you more when we know more.

I will end by quoting the scripture, " All things work together for good, for

those that love the Lord. " Until our next update, we remain firmly and

completely at rest and In His Grip and we remain as servants to a risen Lord

who

is Jesus Christ, the hope of all mankind.

May the peace, power, love, grace, and mercy of our Lord Jesus Christ be

with each of you.

In His loving Hands and still holding onto that rope,

&, parents to twins:

Olivia : potty training,walking, running the house, talking, saying no all

the time and JD(cHArgE: Choanal Atresia, Heart Repair, TE-F Repair, G-Tube,

Trach, on CPap w/ O2 at Night, severe to profound hearing loss, dumping

syndrome ) 22 months, Waxahachie, Texas

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