A PICTURE IS WORTH A THOUSAND WORDS

LOOKING GOOD!

Witt had a very good checkup with Dr. Macicek! He wants Melanie to wean Witt's oxygen as low as possible keeping Witt's saturation about 95. Melanie has started this process but it will take a couple of weeks. Dr. Macicek doesn't want to try to wean Witt off the ventilator at all for now. The ventilator is actually therapy for Witt and one of the last options that helps with his cardiac issues by helping his lungs to expand. Dr. Macicek strongly encouraged Mel to live life with Witt. There was even some talk of taking a trip or two with Witt in the future!! Taking Witt out and traveling will be so much easier when they are able to have a vehicle that Witt's cart just rolls into. I know our God who has been and is Faithful has a plan for this too!!!

Last night Witt was able to go to Kelsey's(cousin's) birthday party. Graham(cousin) was really glad to see Witt and his toys!!

Jim and the boys!

CARDIOLOGY CHECK UP TODAY!

Today Witt has a cardiology check up with Dr. Macicek.

Yesterday he rested up...

...And then he brushed his teeth!

There was also some shake, shake, shake time...

...And just some fun and smiling time!!!!

ROCKING HORSE RIDE

Witt has been doing very well! His stomach continues to be an issue. Melanie has been trying all sorts of adjustments to his feeds to see if anything helps. Dr. Tapia is referring Witt to a motility specialist. It appears to take him a long time to actually digest the food. Friday is physical therapy and this past Friday Witt rode his rocking horse! Witt is definitely gaining much more strength in his neck and back. He even pulls himself up to sitting when Mel is holding him. Melanie and I have both noticed that Witt is trying to make some sounds. He actually can't because of the trach but he sure looks like he is trying!

A well deserved nap after therapy!

The scar that hurts my heart and the smile that heals my heart!!

Thank you all, for your continued support and prayers. Sometimes I forget all the physical problems that Witt has. The ventilator and oxygen are just a part of his life and his heart and brain, well I cant see their irregularities. Every now and then God gently reminds me of these things but not so I will hurt for Witt, Mel and Austan. When God reminds me, it is to remind me how incredible He is...how dependent Witt's life is on God...how dependent my life is on God. I am sorry to say that I still need the reminders especially when Witt is home and thriving. Please continue to pray....pray that I will never take a day in Witt's life, my life or any life for granted but use each day to bring Him glory whether at home or in a hospital!!!

Witt's Horseback Ride

BUSY THURSDAY!

Witt had a busy day yesterday. First an appointment with the pediatrician(Dr. Tapia) at

Texas Children's then lunch at Santo's. He was very patient waiting for

me and Mel to load the car and his equipment!

It's a good thing Witt had his shades because

it was very bright outside!!

It was a great appointment with Dr. Tapia. Witt basically weighed the same as he did two weeks ago before he got really sick and had to be admitted to the hospital. Dr. Tapia is scheduling another swallow test to see if Witt can eat some food by mouth. He has started to really show interest when Mel and Austan are eating. Dr. Tapia is also scheduling some sort of oxygen requirement test. This will accurately measure much oxygen Witt requires. Witt also was given 3 shots!!! This did bring him completely up to date on his vaccinations! Doctor's appointment and then lunch. Witt was tired...very very tired!

Waiting to see the doctor!

HOME AGAIN!!

Witt is home! This was a very short stay in comparison to the last 2 that were 4 months each. We are incredibly blessed and grateful that the Adenovirus did not affect his heart or lungs. Witt has a follow-up appointment this Thursday with Dr. Tapia(pediatrician) and will reschedule the appointment he missed with Dr. Macicek. Right now Witt is resting well at home. Maybe a little to well in the early evening. His nights and days are a tiny bit mixed up!! Thank you, for all the prayers, please join us in our praises!!!

Final days in the hospital!

On the way home!

HE'S 21 MONTHS OLD!

Witt turned 21 months old Friday and there is talk of Witt going home tomorrow!!! Friday he started feeling much better. Friday night was the first night that he slept all the way through(11 hours!) like he does most nights at home and Melanie didn't have to change diapers and bedding. By Friday night Witt's feeds were to his normal fluid amount and his normal schedule of 4 feeds a day. Through most of the hospital stay he had been on 2 times his normal fluid amount and no diuretics to fight the dehydration! Yesterday the doctors started Witt back on his home regimen of diuretics and his feeds were changed to 3/4 formula and 1/4 water. All of his lab work looked really good. Today he will be fed is normal formula mixture. All the final steps have been taken so that Witt can hopefully go home tomorrow!!

I love seeing Witt interact with Melanie!

BETTER!

Witt is definitely doing better. Melanie is changing a little fewer diapers with less volume! We still do not have results from the IgG test. Witt looks like he is getting back to his normal fluid level. His little eyes sink in when he is dehydrated but now his face is filled out nicely. He is still getting more than his maintenance amount of formula and water all(formula and water) through his gtube. He is waking up happier and smiling more...of course he always smiles at Mel and Austan!

There has not been any talk of going home yet. Witt needs to back on his home regiment of feeds and medicine. Right now they are slowly reducing his overall liquid intake but still making sure he is hydrated. Witt has now been in the hospital 8 days and it has passed quickly. We certainly desire God's timing in all this...I'm simply asking for His timing to go home to be soon!!!!

NO IMPROVEMENT YET!

Witt and Elmo had a long night!

Witt continues to have frequent, very loose stools. Right now he is being fed formula and pedialyte through his gtube...the formula for some calories and the pedialyte for more fluid. The total amount is one and a half maintenance but that is constantly changing as blood test results come in. Witt is also receiving fluid by IV. The doctors are doing a wonderful job of keeping Witt hydrated and yet not overloaded. Yesterday the attending also ordered an IgG test. The best I understand is that this has to do with Witt's immunoglobulin(Ig) or antibodies present in his blood. Witt is on day 9 of this adenovirus with no real improvement. One thing that might be happening is that he just isn't producing enough Ig to fight this off. If this level is low he can actually be given Ig by IV(wow...buy a vowel!). Melanie and all the doctors are keeping a very close eye on how Witt looks and his oxygen saturation levels. They want to be sure he doesn't begin to look puffy and require more oxygen which would be a good indication that he has too much fluids.

Witt still loves a good ride!

"The mind of man plans his way, but the Lord directs his steps."

Proverbs 16:9

Recently Jim and I have changed some plans because of Witt's hospital stay. It might have been easy to get upset over these changes but we have a great example in Austan and Melanie. We have watched as their plans have been turned upside-down and yet they are called to still make plans on a daily basis and even plans for the future all the while knowing they may or may not come to pass. We have watched Melanie and Austan live out the plans that God has for them. We have watched them walk in very detailed steps that are far different than they planned in their minds and yet there is joy! When our plans are changed there can be great disappointment or peace and joy. We can choose to hang on to our plans and most assuredly find disappointment or let go, trust the Lord and most assuredly find Him, His peace, His joy!

Please pray that Witt will begin to get over this virus. Please pray for God's wisdom in treating him and keeping the right balance of fluids. And please pray that Mel, Austan and all of us continue to simply seek the Lord and His direction and that in His steps we find Him!!!

ADENOVIRUS

Witt has tested positive for the adenovirus. This type of virus affects the respiratory, eyes, intestines and urinary tracts and its consistent to what Witt's symptoms have been over the last 8 days. During the last hospital stay Witt tested positive for this same virus. Typically, this virus runs its course from 10-14 days. Please pray as Melanie and Karen have to wake up through the night and early morning to change diapers and bedding for Witt. This type of virus can cause severe dehydration in infants as he is now experiencing. In addition, his oxygen saturation level has fallen by a couple of percentages as well. Pray as we depend on God's healing hands to guide the doctors, nurses and Melanie throughout the next few days.

TRYING LESS FORMULA

Yesterday, Witt was given half formula and half pedialyte again. Unfortunately, he's just not able to tolerate it yet. He had several really loose dirty diapers through the night. His lab work at 5am showed his sodium was slightly up...headed back in the wrong direction. At rounds the attending decided to try 1/4 formula and 3/4 pedialyte and increase the overall amount of pedialyte. The thought is that nothing is really going on except that Witt's system just isn't ready for much formula. So far all the tests to try to determine what caused this have come back negative. There is a very good chance we will never know what caused it. Witt will just get well and go home!!!!

I thought Witt woke up with his...

"Conan" hairstyle but after seeing this picture of Donald it might be the "Trump" style!!!

Since Witt's mouth gets very dry, Mel gives him drops of

water with a syringe. He's a very cute baby birdie!!

PATIENCE, PLEASE!

Witt is on pedialyte only and doing much better! His fingers have been pricked numerous times but it doesn't even phase him anymore. This afternoon he slept right through it. We are not sure when the formula will be tried again but its apparent that it needs to be done very slowly! Please, Lord, gives us patience!!!

BUMMER!!

Yesterday Witt seemed to be doing much better. There was even talk of going home by Sunday but that's changed for now. He wasn't able to tolerate any of his formula and has had to go back to straight pedialyte. Mel even asked for the pedialyte to be increased slightly because Witt appeared to be getting dehydrated. We are not sure exactly what is going on. It might be that Witt just needs more time and the the formula added in more slowly than half and half. The doctor has ordered a test to check the bacteria in Witt's stomach. They honestly don't expect that to show anything but need to rule somethings out. Melanie has changed his clothes and bed several times this morning. At least we don't have to wash the bedding!!

Yesterday it was obvious that Witt felt better!

All finished with his bath!!

Although the reason Witt is in the hospital does not appear to be serious it's always hard. It's harder for Melanie to take care of Witt here and everyone is definitely a little sleep deprived. Please pray that Melanie and Austan are able to get some rest. Please pray that Witt gets back on the path of healing and headed home!!! Please pray that through all this we seek and accept God's perfect timing to His glory!!!

FEELING BETTER!

Witt is feeling much better! His latest blood test showed everything is going in the right direction. His sugar level is low so he is getting dextrose. AND so far Witt is not holding extra fluid!! The attending who has seen Witt before(I think they all have!) said that Witt looks really good. Today's plan is to start feeding him a mixture of formula and pedialyte. Later today he will be given some of his normal medications with the goal of getting him back on his home meds. We have been catching up with old friends from the hospital...they have been stopping by to see Mel and Witt. We even ran into Chase and his mom, Carol! Chase is the young man who had the lung transplant and we have had the blessing of getting to know his family. The doctors are hoping this is a very short stay. Its funny to watch them say that with a little cringing. The last 2 hospital stays(for very different reasons) were each 4 months. We know that God is in control and has numbered all our days...even these days in the hospital!!!

IN THE HOSPITAL

Witt had to be admitted to Texas Children's today. Hopefully this will be a short stay! The blood test showed that he is very acidotic. This isn't necessarily surprising since Witt has had diarrhea for several days. Mel had made changes at home with his feeds and diuretics trying to keep him plenty hydrated. It's really hard to know how much extra fluid to give Witt and what diuretic to hold. The pediatrician said its a little strange that some other levels are not out of whack too. They will run some more tests but he said most likely Witt will get better without us ever knowing what's caused it all. It's such a blessing to have the pediatrician at Texas Children's. He walked over to the hospital to make sure the doctors in the PCU understand that Witt cannot be hydrated too quickly or he will be overloaded with fluid which affects his heart and lungs. We were able to wait in the room at the pediatrician until a hospital room was ready. Witt used the time wisely to nap!

The Kangaroo Crew came to the pediatrician's office and got an IV in on the first try!!!

The wait was not very long before Witt's room was ready and Witt was all settled in.

The plan right now is to give Witt half his fluids by the gtube and half through the IV. Hopefully this will hydrate him but not overload him! Please pray that this is a short stay! Also, pray that God is able to use this time in the hospital to His glory...He is so Faithful!!!

PRAYER FOR TODAY

We have been praying prayers of thanksgiving for three months at home and healthy days there!

We thank you for joining us in prayer on those days and on days like today as well.

Witt has had diarrhea for a few days. It hasn't been horrible, but because sweet Witt's fluids are such a delicate balance he is being taken to Texas Children's for blood tests to check his electrolyte levels. The pediatrician there will check him after the tests as well.

Again, thank you for your constant love and prayers for wonderful Witt!

HAPPY BIRTHDAY, MELANIE!

Today I am actually writing about Witt's mom and not so much Witt. Today is Melanie's 25th birthday!!!! I would like to share some stories with you about Melanie. They are stories that I love to remember because they are wonderful reminders of God's plan for Melanie's life even before she was born! I could not fully relate to what Melanie must of been feeling after the 5 month ultrasound with Witt but I know God could give her peace, a peace even without assurances. 25 years and close to 9 months ago I was out jogging in our little neighborhood. This is a neighborhood where kids ride their bikes and frequently play in the streets...no sidewalks. It was a beautiful day. As I jogged down one street I could hear that a car was coming very close. I reached back with my hand just as the car hit me and threw me in the air. I landed on my back and head and then skidded on the road. The young driver was looking for an address and never saw me. My head was split open and my back had 3rd degree burns form sliding on the pavement. But there are so many things that miraculously didn't happen...I didn't actually get run over by the car but was thrown up in the air, I didn't have any broken bones, I didn't have a concussion, I didn't loose consciousness!!! What I did find out a couple of weeks later and totally unbeknown to me was that I was actually pregnant with Melanie at the time. Not only had I been hit by a car, but in the hospital I was x-rayed from head to toe looking for injuries. My first thought was if the baby survived the accident I must have fried it with the x-rays!!! God gave me such a peace and yet it wasn't necessarily assurances that Mel was okay but that God was in control! That was Melanie's incredible God ordained beginning. My life has never been the same. Melanie has always had a very very tender soft heart that's protected by a very thin but tough shell. She has always been drawn to the "underdogs". When Mel was in preK at First Baptist she would always tell me about her friend she loved to play with. She would tell me all they did each week but she never brought up one detail that I didn't discover for quite sometime. Her little girl friend was actually in a wheel chair. That detail was not important to Melanie. She actually loved that the little girl had her own desk that went with them everywhere!! That is an incredible mindset that God gave Melanie that has served Witt well! Around that same age I also got many glimpses of Mel's straightforward, speak the truth mindset. This is one of my favorite stories that I do tell often but it is who Mel is even today. We were at my parents and the kids were acting up some so I sent them back to the bedroom. I walked back there and said, "When you kids act like this I don't even want to see you" to which Mel quickly answered, "Then why did you come back here?" Honestly, it was not said with disrespect it was an honest question and she wasn't afraid to ask it! I of course said, "I don't know and I'm leaving!!!" I'll bet some doctors at Texas Children's can relate to this.?!! Melanie was in elementary school when she left me this note. I certainly loved the fact that she missed me but what really touched me was what she wrote at the end. God's hand has always always been evident in and through her!!!

That little girl grew into the only person(by God's plan) capable of being Witt's mom. Oh, Melanie, the wonderful woman you have grown into...the undeniable gift from God you are to me and now to Witt. God "protected" His plans for you and equipped you to walk in them...don't ever doubt that! Your first 25 years have blessed me beyond measure. Happy Birthday...I love you!~mom

FIRST HEART SURGERY

One year ago today I placed Witt in the arms of a nurse and they took him back for his first open heart surgery. I remember not being able to fall asleep the night before, I was so worried. I had so many thoughts racing through my mind and I thought my world was over. God gave me a peace the next morning that only God can do. Witt did great through surgery and his recovery was slow with a few set backs along the way but he did better then everyone thought he would. I cant believe how far he has come and how our lives have changed since that first heart surgery. He is truly a miracle. Each time I change his clothes or bath him and I see his scars and i'm reminded what a gift his life is. Today has been much different then last year at this time. We slept in, took naps, cleaned house, and all the normal things a family does. Today I celebrate Witt's life one year later on a day we thought we may not have him anymore. Praise God!!!

HAPPY 4TH!

Thank You, Lord, for freedom! Thank You for freedom in our country and in our

own lives! AND thank You for setting us free in so many

ways by giving us Witt!!!!

Austan, Melanie and Witt spent July 4th with us at Warrenton! It had been quite some time since they have been anywhere except the nursing home trip. I know it is hard to take Witt and all his medical supplies out for doctors appointments much less for overnight stays and I am very very grateful to Austan and Melanie for doing this. Not only does all the family miss seeing Witt but we also miss Austan and Melanie. When Witt was born my relationship to Mel was forever changed. Honestly, God has used Witt to bind Mel and me in so many wonderful ways. However, a few of the things I have always been blessed to share with Mel have not been possible so when Austan, Melanie and Witt came to Warrenton for the weekend it was wonderful!! Thank you Mel and Austan for doing what it takes(and it takes a lot!) to spend a couple of days away from your home. Mel, Austan and Witt...God uses you as medicine for my soul!!!

A LITTLE DOWN TIME FOR MEL AND WITT!

WITT OF COURSE SAT AT THE HEAD OF THE TABLE!!

NURSING HOME FUN!

Well our trip to the nursing home was very interesting to say the least. We checked in at 2:30 on friday, signed a ton a paper work and then headed back to the hotel till 8:30 that evening. When we got back to the home a nurse let us in our room and that was the last we saw of anyone till we left. We did have one visitor come by though. It was around 10 and we keep hearing a knocking on our door but we weren't totally sure. Finally I got out of bed to check and sure enough there was a little old man going up and down the halls in his wheelchair knocking on all the doors. He was so sweet. We saw him the next morning trying to get out of the front door. Austan and I woke up around 6am and went and met my parents and Lynn at Ihop before they headed to Winter Park. Although the nursing home stay was very silly i'm glad we are able to get Witt on medicaid. I feel like a huge weight has been lifted off of Austan and me when it comes to Witt's future bills. All in all it was a fun trip! We had to pack what seemed like a months worth of luggage for two days but I enjoyed getting Witt out of the house. It's also nice to know that it is possible to take him places. Thank you for all your prayers for safe travels. If you would please pray for my mom, Lynn and Cheryl's family they will be driving back from Winter park tomorrow and Friday.

As for other news with Witt there isnt much to report. I took Witt to the pedi surgery nurse yesterday to get his g-button looked at because it keeps leaking. She was able to put in a new size so we are hoping that will fix the problem. He goes back to the cardiologist in July and his special needs doctor in August. We will also be starting back up his physical therapy soon. Here are a few pics from the weekend. I have pictures of our nursing home room but those are stuck on my camera. I will post them another time. I hope everyone has a safe and happy 4th!!

Witt is a fan a twilight thats why he sporting his fangs. Witt's tooth count is up to 10!

This picture only took about 4 takes to get it right. The others are really funny but for my eyes only!! Ha!

ROAD TRIP!!!

Yesterday was Witt's first real car trip! Tonight Witt will stay in a nursing home near Killeen, Tx. This is the last step in Witt qualifying for a special medicaid program. I went along to lend a hand if needed. To make the trip a little fun and just in case there were any issues we went a day early and stayed in a hotel close by.

ALL SETTLED IN FOR THE 4 HOUR RIDE

STOPPED FOR A DIAPER CHANGE!

One of the harder things about the trip is the packing. Thankfully all of Witt's equipment is portable but there is quite a bit. Another issue is lifting Witt in and out of his car seat while maneuvering his tubes, oxygen and ventilator! This is probably the biggest need for the family right now...a vehicle where Witt's cart can simply be rolled in and locked down. His cart is also a car seat and if he could just be rolled in that would be wonderful. I have talked to some people about raising money for this and now I am praying and trusting in God to accomplish it!! Witt was a great traveler. Hopefully, staying in the hotel was a treat for Mel and Austan...it sure was for me!

Witt played with his toys...

and enjoyed his mom!!!

The pack and play provided by the hotel doesn't work for Witt because of the tubes but a good old fashioned pallet does!

This afternoon its off to the nursing home to check in. Then back to the hotel because Witt, Mel and Austan don't have to actually be in the room for the night until 9pm. Please pray that the night is not too hard! Pray that God uses Witt, Mel and Austan in this setting to bring glory to His name!!!

HAPPY FATHER'S DAY!!!

Jim and I had the blessing of joining the Luphers for their Father's Day dinner out. Mark Lupher is a wonderful father who clearly loves his sons and grandchildren!

Elle, Lee, Witt, Austan, Mark and Jim

Melanie cut Witt's hair to prepare

for the outing!!!

Undoubtedly, Austan loves Witt and Witt loves his daddy! Austan has been called to be a father in ways that most of us cannot even imagine. He has had to have discussions with doctors and make decisions about his child's life that most dads will never have to. Cheryl and I have said this before...Austan is one of our heroes!

Witt likes hanging out on the couch!

NORMAL WEEK!

Witt has many teeth!

Witt definitely has beautiful eyelashes!!

And Witt has a new chair to sit in!!

Witt's week started with his cardiology check up which went very well. He did not have an echo this time and the blood work came back great. Outings with Witt are definitely different than with other kids but like other kids Witt...

...enjoys the ride...

...loves to be with his mommy...

...and is worn out by the whole thing!!!

Witt's an active little big guy!!

It's been a wonderful normal week for Witt...thank You, Lord! Witt's normal may not be what's normal for most but its great to have normal days!!!! Please pray that we continue to love the Lord, our God with all our heart, souls, minds and strength with the same intensity in these normal days as we have when Witt was in the hospital!! Please pray that we set the Lord continually before us in these normal days not because there is some great request but because we want to worship and praise Him always!!! What an amazing God that He can take our minds, our very meaning of words like "normal" and transform them when His will is not to transform our circumstances. I see this in Mel and Austan all the time...AMAZING GOD!!!!