HOT BUT HEALTHY!!!

HE'S GETTING TALL!!!

This has been a fun, hot but healthy uneventful summer for Witt!!! He's been on trips to San Antonio, Dallas and Fort Worth with Melanie and Austan. With this extreme heat and the fact that Witt is a growing boy, it's hard to be patient waiting on the converted van. The daily highs are in the 100's and Witt and his equipment aren't getting any lighter! Unfortunately, the wait is still 2-3 months since the van hasn't even been made yet. It is ordered but the whole process including conversion takes a while. You would think by now I would have learned to wait and even bask in God's perfect timing! Please Lord, have Your way...it's always a better way than mine!!!

Witt does have several doctor's appointments this fall. Most notably is September 19. Witt will have tubes put in his ears, the doctor will look at his trach and wind pipe with a scope and a tear duct will be opened. These are normally not major procedures but Witt will need to be at the hospital with a cardiac anesthesiologist. Generally this is not an overnight stay.

This morning as I was thanking God for all the blessing of having Witt, He brought to mind a blessing that I don't normally think of. God reminded me of the incredible seeds He sowed through the valleys, some deep almost seemingly bottomless valleys. Yet, it is in those valleys that the ground is the most fertile...that the seeds yield the greatest harvest. Psalm 126:5 says:

"Those who sow with tears will reap with songs of joy." Throughout Witt's many, long hospital stays God was always always faithful to fill the seed bags with things like His truths, His promises and completely discard the seeds of anger or bitterness. Over and over He faithfully planted His seeds of truth deep into the fertile valley and watered them with our tears. Truly, truly joy always followed!! What a great harvest, what a tremendous blessing, what an Awesome God!!!

WITT HAS ALWAYS LOVED A CAR RIDE!

USING HIS '"CLAPPER"!

PLAY ME A SONG YOU'RE THE PIANO MAN!!!

ALL FINISHED!

GOOD NEWS FOR WITT AND ELLE!!!!

Witt had a great check up today! We had to wait a bit to see the doctor but if anybody is worth waiting for it's Dr. Macicek!!! He was Witt's first and has been Witt's main cardiologist. Dr. Macicek said Witt's X-rays and latest labs look good. He doesn't want to see Witt for another 6 months. They will schedule an echo cardiogram for that visit just because its been some time since Witt has had one. Just to show off for Dr. Macicek, Witt reached out and "shook" his hand! Dr. Macicek has a new nurse with many question about Witt and his history. I love the opportunity to talk about God and what He has done in Witt's life!!! She asked me how Melanie and Austan lived it...how they didn't freak out. I said that God is always equal to(and greater than!) the task at hand!! She said how do they not worry and I said the answer to all her questions is God. He is the Answer!!!

AND...Elle is out of her surgery and doing well! Dr. Morales said it all went great. The plan is to extubate her at 8pm tonight. Right now she is in cardiac ICU but will very soon will be moved to the regular floor!

DR. MACICEK AND WITT!

CARDIOLOGY CHECK UP TODAY!

He's a growing boy!!!

Today Witt has his first cardiology check up in months! He will be seeing one of our favorite doctors, Dr. Macicek. We don't anticipate that there will be any big changes because all of Witt's "numbers" are still good! We still do however ask for your prayers and as always my greatest desire is for God to be glorified!!!

ALSO....please be praying for Witt's cousin, Elle!! She is right now in the middle of another open heart surgery to make repairs!!!

AT THE ROUND TOP PARADE!

HAPPY FATHERS DAY!!!!

God blessed Witt with the best dad. Thank you for all you all do for him. The way his face lights up when he sees you says it all. Happy fathers day! We love you!

GROWING, HAPPY AND GETTING WHEELS!

GROWING, GROWING GROWING!

SITTING UP!

Witt's life continues to be one of the greatest examples of God and His purposes! For those who might be visiting Witt's blog for the first time let me tell you a bit about Witt! He is a very rare trisomy 1 child...I started to say "baby" but he's 2 1/2!!! He actually has a partial addition and deletion on the number 1 chromosome. Texas Children's genetics came up with 30 known cases in the world. The nurses in the PICU were googling it! Before Witt was born Melanie and Austan were told that several things were wrong with Witt. They opted to not undergo anymore testing realizing even then that Witt's life was in God's hands and He most certainly has the final say over all including medical tests. Witt was not expected to live but a handful of days. The chromosome issue has caused abnormalities most notably with his heart and brain. Witt has had 2 open heart surgeries to try to repair the mitral valve but there is no more that can be done. Throughout the first 2 years of his life and months upon months in the hospital Mel and Austan were told several times that this could be the end. They have learned to listen to the doctors and certainly appreciate their knowledge and expertise but also cling to the truth that God has the final say in all things! Witt has required extra oxygen since he was a couple of months old. A little over a year ago it was decided that Witt needed to have a trach put in and go on a ventilator. He breathes on his own but the ventilator helps really expand his lungs which were staying full of fluid mainly from the heart issues! Witt is now a robust 33 pounds thanks to his feeding tube which was necessary because basically everything he swallowed was going directly into his lungs. Witt is a miracle! Not that most of us aren't miracles but with Witt there is no denying God's work!!! It has been almost a year since he has been in the hospital!!!! He has actually had several colds and ear infections but has been able to stay home. I believe Witt has confounded and surprised all the doctors especially Dr. Ruiz(pulmonary specialist) and Dr. Macicek(cardiologist). Dr. Ruiz has even turned down some of Witt's settings on the ventilator and Witt is now only on 1/4 a liter of oxygen. What may blow me away the most is how God is so glorified and magnified by Witt's life! This has been my prayer all along...that if Mel and Austan were going to have to walk this walk and their son was going to have these very special needs then let's at least ask God to bring Himself infinite glory!! I hope to one day point people to God in the same way that Witt's life always has!!! Witt's(and Mel's and Austan's) life has not always been easy but God has always been Faithful. He has been faithful to make up with peace and joy where ease has been lacking...Glory!!

Now for some more current news! The great thing is that Witt has had very few doctors appointments. As I mentioned, a couple of weeks ago at his lung check up, Dr. Ruiz turned one setting down on the ventilator. He made no promises but said we might as well keep turning it down slowly! He said that you never know...Witt has already surprised us all! Over the past week Witt has been fighting a pretty nasty head cold but is slowly getting better. He has no doctor's appointments for the month of June! AND with some very kind donations and saving money on their own, Melanie and Austan now have a down payment for a special needs van!! They are going looking this weekend. Its getting harder and harder to lift Witt into his car seat while managing his ventilator and oxygen. With a specially equipped van, Witt and his equipment can simply be wheeled up and "lifted" in! This will have a wonderful impact on the Lupher's lives and I pray it will give them a chance to touch more lives through Witt as they become even more mobile!!!!

Here are some videos of Witt enjoying life over the last month!

HAPPY MOTHER'S DAY!!!

Melanie, I know that if Witt could say the words, he would most definitely say Happy Mother's Day to the best mom! I know because I see it in his eyes and his smile when you walk in the room! Today at church Gregg talked about a mom's sacrificial love. I know of no better earthly example than the kind of mom God has called you to be...the kind of mom God has empowered you to be...the kind of mom God has blessed you to be!!! AND I know how much Witt loves you!!!!

The best moms need a rest too!

BLESSED WHITE EASTER!!!

We pray for blessings


We pray for peace


Comfort for family, protection while we sleep


We pray for healing, for prosperity


We pray for Your mighty hand to ease our suffering


All the while, You hear each spoken need


Yet love us way too much to give us lesser things



Cause what if Your blessings come through raindrops


What if Your healing comes through tears


What if a thousand sleepless nights 
Are what it takes to know You’re near


What if trials of this life are Your mercies in disguise


This song is one of Melanie’s favorite. It makes me think of Good Friday and Easter all in one. Good Friday must have seemed horrible without knowing that 3 days later Christ would rise from the dead and there would be an Easter day. Christ being crucified was certainly not what the disciples were praying for but He does “love us way too much to give us lesser things”! Friday was “good” because Easter came. What’s hard is the in between days, the days between a good Friday and an Easter day…days that can be long and excruciating. Melanie has lived through many “Good Friday” days with Witt but in God’s infinite grace there has always been a glorious “Easter day’!!! We have prayed for healing, for His mighty hand to ease our suffering and we have always without fail received blessings…blessings through raindrops, healing through tears, unending mercies in disguise. Because of “Good Fridays” I can proclaim blessed “Easters”! Today I am praying for those who are right now living out a “Friday” that in no way seems good and for those who are in the in between days waiting on “Easter”. What I do know is that Easter does come because Christ is risen, He is risen indeed!!!

WITT ARRIVING AT THE FRITZ LODGE!!

ON THE WAY TO COLORADO!!

Witt and some of the crew are en route to Colorado!

They got off to a bright and early start this morning,

before it was even bright outside.

 The first stop of the day was a good one.

 Folding tables make great changing tables,

 at pit stops.

Everyone took a lunch break in Witchita Falls.

The trip plans include traveling to Amarillo tonight

and Winter Park tomorrow!

As always, thank you for your prayers.

This is by far the longest trip Witt has even been on

and while it is SUCH an exciting thing

prayers for safety, health and peace are greatly appreciated.

BUSY, BUSY BUSY!

Witt has been very busy!!! He spent 11 days at Warrenton

for the Zapp Hall Antique Show! This was Witt's second show

in a row to share with us and it was wonderful. He was not

feeling great at last fall's show and even had to be taken

into Houston to see the pediatrician. This show was uneventful

as far as Witt was concerned but incredibly busy especially at the cafe!!!

WITT SPENT MOST HIS TIME AT THE

TABLE WHERE MELANIE MAKES PLATES...

HOWEVER, IF HE NEEDED A NAP

HIS BED WAS READY THERE TOO!

JOE PETE WAS TRYING TO MAKE A DEAL

FOR THE "WITT PETE"!!

SOME GREAT TIMES WITH THE YOUNG COUSINS!

Witt wasn't back home long before he started on his new career

of finger painting. Look out Picasso!

The young Picasso at work!

I have a couple of prayer requests but first join me in thanking the Lord for Witt's health! Except for the couple of weeks this summer because of a stomach virus, it has been a year since Witt has been in the hospital!!!! We still run into friends from the hospital when Witt goes to his doctor's appointments but I have almost forgotten what it's like to sleep in a recliner! The first prayer request I have is for Witt to sleep through the night. I am writing this post at 3:00am because Witt has been waking up in the middle of the night for several nights in a row and its not an uncommon occurrence. I came over to sit with Witt so Melanie and Austan could get some sleep. In 8 days Melanie and Austan are taking their first vacation with Witt! We are going to Winter Park for Easter!! It's closing weekend at the ski area but a much warmer and healthier time than at Christmas. All of Witt's doctors have more than approved of the trip...they are pleased that Mel and Austan are taking him. This week I am having a special adapter put in my car so that we can travel with the humidifier attached to Witt's ventilator. Mel has worked out all the details of medication and supplies. The oxygen supply company even has an office in Denver and a top lung specialist that used to be at Texas Children's is now at a hospital in Denver! Please join me in praying for safety in travel. It should be a 2 day trip with an over night stay in Amarillo...hope the Gayle and Bobby Bed and Breakfast is open!!! The longest trip the Luphers have taken before this was a 5 hour trip so the timing will be up to Witt. He normally enjoys being in the car! We will return to Texas the week after Easter. I can't think of any better way to celebrate Christ and His complete victory over the things of this world than traveling with Witt, His miracle!!!

I PROMISE AN UPDATE SOON!

Witt is doing Great!!

MR. HANDSOME

Witt is doing great! We are getting ready to spend the week in Warrenton for the antique show. So today we had to make sure he looks his best and took him to get a haircut.

Please notice that Witt and I are wearing a duel cape.

He did not like getting his haircut at all. The lady was very fast and did a great job.

Witt can't talk because of his trach but he sure finds ways to make noise

WITT'S FIRST TRIP TO THE ZOO!

We and I have been trying to take Witt to the zoo for weeks and we finally made it happen. We went in the middle of the week in the afternoon. When we got there it was a little more crowded then we thought it would be. My mom went to buy the tickets and they were free. Free! On all the days we have been trying to go to the zoo we happen to go on free zoo day. Normally being free would be a good thing but we like to avoid big crowds with Witt. It ended up working out just fine once we got in and the crowds went all different directions. Of course Mr. Witt fell asleep right after we got there. We had tons of fun and it was one of those rare prefect days in Houston. Here are some pics from our day!

Annalee, Me(Mel), Witt, Adelaide, and Graham

Mom,(Karen) and the grandkids

The Boys!

Witt has a horn on his cart. Adelaide honked it whenever she found an animal from her list!

A note from Karen: Lest anyone think God is not still using Witt in my life to teach me many things, let me tell you what happened before we actually got into the zoo!! Because everyone was free at the zoo the parking lot was a little crazy. We do have a handicap card to park but all the handicap spaces were full up front. We drove around and finally were waiting(turn signal on) for a car to back out of a regular spot. We had to wait a couple of minutes. The way it worked out a car drove up and turned in before I could pull in!!! It wouldn't have even been so bad except that I had Witt and Melanie with me. I politely told the man that I had been waiting several minutes for the space...that all the handicap spaces were full and I had my special needs grandbaby with me. His reply was, "Life is tough!" Oh, my goodness!!!! I said, "Seriously, that is your response. I have been waiting on this space. All the handicap spaces are full." He once again said, "Yeah, life is tough." I actually sort of chuckled to my self thinking how "funny" it was that this man and his wife were telling me and my daughter with Witt in the car that "life is tough". I did say, "No, sir...this isn't tough. Life in a wheelchair...that gets a little tough." There was no response and they walked away leaving their car in the parking spot! Now, let me tell you how God had prepared me for this so that my joy would not be stolen and although I was shocked and amazed I was never angry! I have been listening to Nancy Leigh DeMoss' podcasts. It just so happened that morning when I was getting ready for the zoo her podcast was about controlling the tongue and our joy!!! She quoted from Proverbs 15:22...

A man has joy in an apt answer, and how

delightful is a timely word!

Nancy pointed out that it is in the way we answer that we have our joy. How great is our God to prepare us not just for the big things in life but for the little day to day things that can so easily steal our joy! By God's grace(and we all know its by His grace because its one thing to be rude to me but an entirely other thing when it involves Melanie and Witt!!) I answered politely and without a touch of anger. We did find more handicap spots at the very back of the parking lot. I can use all the exercise I can get!!! The day was a wonderful day with my daughter, daughter-in-law and the grandkids. In a weird kind of way it was more joy filled because of the way it started. Thank You, Lord for giving me the apt answer and filling me with Your joy. Thank You, Lord that You continue to use Witt for Your glory!!!!!

THE STANDER!

Witt's stander has arrived! It absolutely brings me to tears(of joy!) to see him in it. It also makes me realize how much Witt has grown...how tall he is!!!! I thank God for this technology that allows so many kids to stand tall who otherwise might never. This will really help Witt to strengthen his legs and could even help with his digestion. AND Witt likes it!!!

BUSY, BUSY BUSY!

Witt has actually had a very busy few weeks!!! Melanie has gotten a lot of

use out of Witt's hat's. We've actually had some pretty cold weather here

in Texas...at least cold for us!!

Witt helped Melanie and Austan celebrate their 5th year wedding

anniversary on the river in San Antonio!

Witt went with Melanie for a lunch date!

Witt really likes avocado!

Witt has also had several doctor's appointments. He continues to have some

fluid in his ear which sometimes has been infected. However, there is usually still

a smile on his face! Witt had an appointment with an eye specialist

who said that Witt's optical nerve is small but its still within the normal range.

The size of the optical nerve will actually never change now which is good news!

She said that Witt's eyes work just fine so Witt's ability to see or not is a function

of his brain. It's hard to tell exactly what Witt does process but one thing I

know for sure is that when Melanie walks in the door he always looks at

her and has the biggest grin!! Undoubtedly he does see and most the time he does

follow with his beautiful blue eyes! Maybe the best news came from Dr. Macicek.

First, Dr. Macicek will most likely remain at Texas Children's!!! He will very soon be an attending and no longer a fellow. Dr. Macicek said that Witt's heart is maintaining

and Witt's liver is actually smaller. AND all the specialists don't want to see Witt again

for at least 6 months....Hallelujah!!!! Except for the 2 weeks this summer when

Witt had an intestinal virus, he is closing in on being home for almost a year!!!

Almost unbelievable...BELIEVABLE MIGHTY GOD!!!!!

Right now Witt is running a low grade fever(100.2)and Mel just put a call into the pediatrician. Hopefully its just a normal 2 year old thing!!!

Quick update

Witt is staying warm!!!

Witt has been doing great! There have been no issues since our ER visit on new years. We have been very busy with doctor appointments for the new year. Witt went to my favorite lung doc at TCH, Dr. Ruiz and he said Witt looked like he was doing great. We talked a lot about the ventilator and turning his support down which we ended up doing. They took Witt's breath rate, number of breaths the machine gives him from 24 to 22. Nothing big but it is a start. Although there are no plans to take him off the ventilator any time soon. It has almost been a year since Austan and I decided to have the trach surgery done for Witt. He as had some serious surgeries but putting his trach in was the hardest one for me. I did not want to do it at all. When Witt came out of surgery and even a few days later he seemed so miserable. Austan and I for the first time were really second guessing our decision to have it done. Now almost a year later of having all the extra equipment in tow, which has not always been easy, Austan and I know we did the right thing. The trach and the ventilator as given us the most normal life we have had since Witt was born. Mr. Witt has also been dealing with some ear infections. Our last visit with his pediatrician he thought Witt's ears looked good but we have an appointment with the ENT on Monday. Witt also has an appointment with the eye doctor in a couple of weeks and I have to say I am the most nervous about this. They have to dilate his eyes and look in them. No kid likes to have their eyes held open. I can already feel my over protective side bubbling up just thinking about this appointment. If you would please pray that it won't be as bad as I'm thinking and if it is that I will remember they are not trying to hurt him. Witt is doing really well in therapy. He got this new vest called a spio. It looks like a little wet suit and it provides extra trunk support. He is very close to sitting up on his own when he is wearing his new vest. We are also waiting for his new stander and bath seat to be delivered. I'm very excited about those. Since Witt is doing so well we don't have as many day to day things to update the blog with. We will always try to put pics and keep everyone updated on the good and fun things Witt is doing.

HOME AND DOING WELL!

Jim and I just landed back in Houston. We headed straight to Mel's and Austan's and more importantly Witt's!!! He is doing quite well. His blood gas test done in the ER showed all his levels are good. We will never know how long Witt's tube was disconnected but whats most important is that he is doing good and there appears to be no long term effects. I can't imagine what last night must have been like for Melanie and Austan...to wake up to Witt's alarms going off, a tube disconnected from the ventilator and Witt pale and very limp. Austan said that by the time the paramedics got there Witt had finally moved a couple of fingers but that was it. Austan also told me that he had to drive his car while Mel went with Witt in the ambulance and that he wasn't sure what he would face when he got to the hospital. What Austan didn't know was that during the ambulance ride, Witt took the pacifier out of his mouth and smiled at the paramedic! Witt has bounced back quickly and my prayer is that Melanie and Austan are able to do so also. They were blaming themselves for not hearing the alarms sooner. Tonight Jim and I are spending the night with them. Hopefully they will get some much needed sleep!

UPDATE

We have talked to Melanie and Witt is undergoing some tests. As they are waiting, Witt has been playing with his grandfather Mark's face so he seems to be feeling okay. Karen and I are in Colorado so you can imagine have difficult this is on all involved. Thank you for your continued prayers.

Jim

PLEASE PRAY

Witt is on his way to ER via ambulance right now. His ventilator tubing came disconnected for a period of time tonight. As we know more about his condition, we will update you as quickly as possible. Please pray for the doctors and nurses to be the perfect ones for Witt, Mel and Austan tonight. Thank you for lifting our entire family up during this difficult time.

HAPPY NEW YEAR!!!!

Happiest of New Years from one of the happiest boys I know!!!!

Alas, Witt couldn't stay awake for the New Year!