APPOINTMENT WITH THE PEDIATRICIAN!

ON THE WAY TO THE PEDIATRICIAN!

The Luphers had a great outing! Many things were discussed with the pediatrician, Dr. Tapia. They talked about immediate concerns and possible future concerns like visits to the ER. The good thing about this pediatric group is that they are very hands on if Witt has to go to the hospital. The doctor said that if it was ever time for some very hard life decisions that they would be a part of that too. I really appreciate and thank the Lord that there are people in this world willing to take that on as part of their job. Ultimately any decisions will be made by Melanie and Austan under God's guidance but to know that Witt's pediatrician will also step in and offer advice is wonderful. Although Witt was originally supposed to be Dr. Lewis' patient, he may actually stay with Dr. Tapia. The group of doctors all work closely with each other and Melanie and Austan liked him. Dr. Tapia said that Mel and Austan can take Witt on outings! Of course, Witt still can't be around anyone who is sick and he will not have the measles or chicken pox vaccines for 6 months. Certainly taking Witt out involves packing up quite a few things but if anybody can handle it Melanie and Austan can!!!!!

AT THE PEDIATRICIAN'S

ALL TUCKERED OUT!!!!

FIRST OUTING TOMORROW!

Witt is adjusting well to his new home. Melanie and Austan are getting closer to having all their things moved in. Witt is getting on a good schedule now that he is out of the hospital. For the most part he is sleeping through the night. Melanie and Austan do have to start a midnight feed and a 6am feed but Witt just sleeps through it. Tomorrow will be Witt's first outing since having the ventilator. He has is first appointment with his new pediatrician. Dr. Lewis will be his pediatrician. She is at Texas Children's and specializes in kids with special needs. Actually, tomorrow Witt will be seen by one of her associates because she is out of town but from now on it will be Dr. Lewis. Please pray that this first time out for Mel and Austan with Witt is not hard as they have to deal with Witt's equipment. I don't worry about Witt's disposition...Mel said he is almost always smiling. First thing in the morning when she goes to his bed, he smiles and throughout the day! I think of Witt and what God has accomplished in his life and I smile! It would have been almost impossible for the 3 of them with Witt's equipment to have lived in the house they way it was before the hurricane. I think of Almighty God and what He accomplished with their house and I smile!!!!

Mr. Smiley!!!

Melanie and Austan have a video monitor.

Here's Witt asleep at night!

In this picture Witt's hair is kind of tame....

...but it looks alive here!

18 MONTHS OLD AND HOME!

Witt turned 18 months old today...a year and a half!!!!! He is doing well being at home with Melanie and Austan. They are still moving in and adjusting to being out of the hospital. It is wonderful for them to be in their own home but there are some changes to adjust to! I am even having to get used to an empty home! I am grateful that one thing left behind is the scripture on my wall in my living room which had become Melanie's and Austan's bedroom...

The LORD is my Strength and my Song;

He has become my Salvation.

He is my God, and I will praise Him,

my father's and I will exalt Him.

The LORD is a warrior;

The LORD is His name.

Exodus 15:2-3

Please pray for all of us as we adapt to these wonderful changes. Please pray for Melanie and Austan as they continue being parents in ways most of us will never experience...ways that are far from what most parents would expect!!!

Witt leaving his room at the hospital!

"A HOUSE IS MADE OF WALLS AND BEAMS...

..A HOME IS BUILT WITH LOVE AND DREAMS."

march 2008-

mel told us she was pregnant!

september 2008-

hurricane ike ruined the luphers' home.

october 2008-

witt harris lupher was born!

april 2010-

the lupher 3 get to move into their (beautiful renewed) home together!

today those things called "HAPPY TEARS" kept welling up in my eyes.

almost every morning i tell my daughter adelaide (as my mom always told me),

"this is the day that the Lord has made. i will rejoice and be glad in it."

(psalm 118:24)

and that is my prayer, that every day, regardless of circumstances, i REJOICE.

but today as i said these words i had to blink a few extra times.

because today my heart was OVERFLOWING with joy.

i have prayed and longed for witt's homecoming.

i have tried to imagine what that day would be like.

and TODAY was that wonderful day!

it was pretty much INCREDIBLE to see the luphers

at HOME hanging out in their living room.

and as you can see by the picture of these 3 cousins,

i wasn't the only one overflowing with JOY!

ON THE ROAD

Witt is on his way home. The very first time he will be at home with Austan and Melanie at their newly rebuilt home from the hurricane in 2008! Witt's temperture went down to 98.1! This is a really exciting day for everyone!!

WITT IS GOING HOME...ANY MINUTE!

We are all loaded up and ready to leave! He has a real low grade fever(100) but WITT IS GOING HOME! Please pray that his little fever is not the beginning of anything! Please pray that this is the beginning of many many days home!!!

GOING HOME TOMORROW...HOPEFULLY!

Witt has not had another fever since night before last. He is scheduled to go home tomorrow morning....Glory!!!!!! Witt will now be seen by Dr. Lewis. She specializes in kids with disabilities here at Texas Children's. Hopefully she will even stop by and see Witt before he leaves. It's not that we don't have our hopes up but we have learned to wait to celebrate the moment as it happens. For now I am beseeching our Lord to keep Witt fever free and tomorrow we will celebrate with an infinite joy that can only come from Christ!!!!

DELAYED HOMECOMING

Over the weekend Witt seemed to be doing better but around 4am he spiked a fever of 103! He was supposed to go home tomorrow but that is delayed until at least Wednesday and only if he has no more fever and the tests all come back negative. I want to ask everyone to pray that Witt goes home soon. Melanie and Austan have been working hard on their house and especially Witt's room to prepare for his homecoming!

Please join me in praying that Witt's homecoming will be in God's perfect timing and for strength for Mel and Austan as they wait! I can't imagine what this long, windy, up and down road must feel like to Mel and Austan. Melanie wrote on her facebook that she is about out of energy...what a great chance for God to show Himself to her as her Strength and the One Who Lifts Her Head! I pray today that Melanie and all of us who might be weary are simply seeking the Lord. Lord, let there be an outpouring of Your strength that is only explained by the name of Christ!

Psalm 105:1-4

"Oh give thanks to the Lord, call upon His name; make known His deeds among the peoples. Sing to Him, sing praises to Him; speak of all His wonders. Glory in His name; let the heart of those who seek the Lord be glad. Seek the Lord and His strength; seek His face continually."

I am going to have to figure out a way to secretly video Witt...he gets way to somber when he knows I am recording!

LUNGS HAVE MORE FLUID

Yesterday Witt was given some blood. He had looked pale for several days and his hemoglobin was low. The original plan was to give him the blood followed by an extra dose of lasix. Giving Witt blood is the same in some ways as giving him extra fluid. Then it was decided to time the transfusion so that it would end when his regular dose of lasix was due. Through the night, Witt started breathing harder and the x-ray showed his lungs had more fluid again. They just gave him an extra dose of lasix. Hopefully, this will quickly make him feel better. The doctors would like him to get more calories but for now he can't seem to tolerate it. Please pray that his lungs dry out some! Witt is so close to going home but we keep having little setbacks. Also, please pray for Melanie and Austan. Except for the 5 or 6 days Witt was home in January, he has been in the hospital since the middle of December. And please, always pray that through all this our Lord is magnified...not just through Witt's life but all of ours lives!!!

WITT HAS WHEELS!!!

Witt has his new Kid Cart! It's so nice and holds everything. I think Witt and I for sure will win the Granny Stroller races! The new target day for going home is next Tuesday!! Witt's stomach seems to be feeling a whole lot better today. He is back on his normal feeds just for today and tomorrow they will try either more formula instead of adding extra water or 30cal/ml formula with extra water. It works out about the same but either way it gives Witt more calories which he really needs. Yesterday, he finally got some of his immunizations. Previously, he only had his 2 month shots. Witt was always either just out of the hospital or not feeling good enough to give him the shots. He has handled them just fine. Melanie and Austan are still moving their things into their house but the nursery is about ready. It's going to be a glorious home coming for many many reasons!!!!

STOMACH A LITTLE UPSET

Good Morning!

Melanie said Witt(consequently Melanie and Austan too!) had a long night. Witt's stomach seems to really be bothering him. It could be the antibiotic he is on for the pneumonia. At least with the gtube they are able to vent his stomach before for feeds to help. Teething could also be a contributing factor. Witt has been on the home ventilator again since yesterday. The home ventilator doesn't work exactly like the hospital one so the settings are having to be tweaked some. Witt was definitely breathing faster but that's better now with the adjustments. Today Witt's new "stroller" is being delivered. This thing is great...it is made especially for Witt and will neatly carry all his necessary equipment. The Physician's Assistant mentioned next Wednesday for Witt's new go home date!! Please pray that Witt's lungs continue to dry up and his stomach feels better. Pray also for rest for Mel and Austan. Each day they have been leaving the hospital for a short bit to continue moving into their house and last night they got very little sleep. I am asking God to reveal Himself to them as their Sustainer!

Witt loves his purring Lion!!

BETTER

Witt seems better today. Yesterday afternoon he did not tolerate his IPV treatment. Vickie was here...we two grandmothers decided enough was enough! He became really agitated, sweaty and very pale. It took Witt several hours to recover so Mel has asked that he not receive any more of these treatments. He will definitely not be going home this week. The plan tomorrow is to put him back on his home ventilator. The people from the Rider 28 program are coming on Monday for the initial evaluation. Melanie and Austan continue to get things ready at their home. It's taking a while because after the hurricane destroyed it, we had to quickly pack things up with no light and rain coming in! But it is beautiful now and will always be a wonderful example of God and His faithfulness. However, the most incredible example of His faithfulness is Witt!!! Thank You, Lord that undeniably You hold Witt's life in Your trustworthy hands!!!

READY FOR BED!!!

AUSTAN, MELANIE AND WITT!

LONG NIGHT

Well at about 12am I noticed Witt's oxygen was staying down a little and when I looked at him he was breathing harder. We tried stopping his feed to see if it was his stomach. We changed his trach in case it was blocked. Did a blood gas which came back fine and an xray which showed he has a small collapse and maybe a small pneumonia. I have no idea how he got it maybe some type of aspiration. Or he heard we were going to move and get the house ready tomorrow. HA! The blessing all this is if this would have happened pre-trach we would have been rushed to the PICU and been intubating him. He seems to be playing through it all. Till he gets over this pneumonia they are putting him back on the hospital vent because it is easier to manage and more affective. Please pray this will not be a huge set back and we he will get over this quickly.

STEPS CLOSER TO HOME AND TEETH!

Mr. Witt is doing Great!! Yesterday his B.U.N was going up which is a function that his kidneys are not getting enough fluid. The doctors, PCU team and cardiologist got together and decided to first try to give him extra water through his g-tube before giving him fluids through an IV. It is working great because his numbers are much improved. Today we also had our home health company drop off some of our supplies like Witt's pulse ox monitor, ventilator bag, and portable suction machine. You would not believe how they make this equipment so you can travel and feel like your life is a little "normal". We are making great steps in completing what we need to do to go home. Austan and I have had a huge list of things that we had to learn before we leave. One of those being having a nurse watch us change his trach. I was first up today and I was so nervous. I had to pull the old one out of his neck and put the new one in. My hands shaking but I did it! It took about 10 seconds and it was much easier than I thought. Austan has to do it on Sunday. We will have to change the trach once a month when we are at home.

On a side note, when Witt turned 1 he still did not have any teeth which is not unheard of but made me a little worried. Doctors told us kids with genetic issues can have bone growth problems and may have problems growing teeth. Since we know so little about trisomy 1 no one knew exactly what that meant in regards to his teeth. Getting teeth is something I don't think most parents worry about. They just seem to appear. I use to say, God after everything that is already different about Witt please just give him some teeth. In December I noticed it looked like he was getting a molar and within a week he had all 4 molars coming in. As we all know Witt likes to do things his own way so why did I think his teeth would be any different. Everyone thought it was odd he didn't have any teeth coming in the front and told me again maybe he wont get any. One doctor showed me in a chest xray which shows a little of his jaw you could see teeth in there. I have been praying for teeth to sprout up and I have good news... Witt is now getting a new tooth on the top and the bottom! They are still not in the very front but I think they are working their way forward. The point of all this story is in the midst of all Witt's serious problems I never want to forget to praise God for the things that seem so small. So each little tooth I see in his cute mouth makes me so excited. I know Austan thinks I'm crazy because I make him stop whatever he is doing and come admire the newest member to Witt's mouth with me. Our total tooth count is 6!

Thank you, thank you for all the prayers, emails and comments. I wanted everyone to know even though my mom is the one who updates the blog most of the time that I do read each and every comment. My mom also shares everyones emails with me too. Austan and I feel so undeserving of everyones unbelievable support. I hope everyone has a blessed weekend!

Mel

HARBOR LIGHT CHOIR!

Just when things don't seem to be going great our Greater God has a way of showing up! In God's perfect timing the Harbor Light Choir from the Salvation Army showed up at Witt's room! They sing for us the last Friday and Saturday of the Zapp Antique Show. Jim told them about Witt. On Thursdays the choir sings at Methodist Hospital so the men came on over to Texas Children's....GLORY!!! And if that wasn't enough, Dr. Macicek stopped by too!!!!! How great is our God!!

A LITTLE TOO DRY!

Witt is not feeling great! He has had a slight fever. Over the past few days the doctors were worried that Witt was actually a little dry so they withheld some of his diuretics. This morning he looked a little puffy but his BUN level is up. The answer to that is to give him some IV fluid.

Please join me in praying that this gets all figured out...it could cause a delay in Witt going home!

Witt has been getting lots of good Occupation Therapy!

Here are some videos of the OT working

with Witt on swallowing.

MAKING PLANS!!!!!!

ONE LAST WITTSTER BUNNY PIC!!!

I have been hoping and waiting to type these words....PLANS ARE FOR WITT TO GO HOME END OF NEXT WEEK!!!! AND...Melanie got a letter from CHIPS (a part of Medicaid) that Witt has been accepted AND a representative from the Rider 28 program called. He is moving Witt to the top of his list to come and evaluate!!! I am awed and humbled by our God...His faithfulness and His plan!!!

Witt's home ventilator is here and it's tiny! Melanie and Austan attend a trach/CPR class today. Austan has been talking to the gas company trying to get the gas turned back on(it had to be turned off because someone stole part of the pipe outside!!). Witt is doing really well on his diuretics. The only issue right now is with his feeds. The nutritionist bumped him up to 30 cal/ounce but that seems to be just too rich for Witt. He wrenches and has frequent loose dirty diapers so for now it's back to the 27 cal/ounce. This weekend will be a big weekend at Mel's and Austan's house as they prepare to be at their home for the first time with Witt!!!!

Getting ready for bed!

GOOD FRIDAY!

It is Good Friday and it is a good Friday!!!! The goodness of God has never been so evident as in Witt's life! Somehow...just like thousands of years ago...God has taken seemingly bad things and covered it in His infinite goodness and it's good! Much of Witt's life has been filled with incredibly hard and sometimes horrible circumstances but with God I simply proclaim that Witt's life is good!!! I am in no way saying that it is not hard...harder than I as just his grandmother even knows...but God's goodness is so much greater!

I believe in this Easter Bunny!!!