Family and Friends

Most of you know that Mommy and Daddy have been working on the house to get it ready for little G when he comes home. It has been one of those projects that grows. Take one thing down and find two more things that need to be corrected or replaced before the new goes in. This weekend, Mommy and Daddy did a 48 hour 'room in' with Grady. While they were living the family life, their dear friends were working their back sides off. The new floor is in! Thank you to all of you. I hope you know how much this means to the big kids. What a wonderful gift, to give up your weekend and give Mommy and Daddy one huge blessing. Time was getting short for this project and you all completed it and took major pressure off of the kids. At the risk of repeating myself, you are true family. God has blessed us by putting you in our lives. Our little man is going to grow up knowing that family has a much larger description than most people know.

As for our precious little man, he is getting so close to coming home. Once the rooming in weekends are completed, we will be getting ready for the day we bring Grady home. Once he is home, there will be new worries and concerns. Bringing an immune weak child home , will have its own fears. This little man may be 25 before he gets to see the light of day. The hospital staff have already begun to warn us that we need be sure we keep visitors to a minimum. Everyone will have to wash up before they can touch him. Little people will be discouraged from coming over to see him. One more period of time that Mommy and Daddy will worry. The RSV season is upon us so that will restrict the places that Grady will be taken to. Having a kindergartener will have its own concerns. We will be doing our best to keep big sister healthy. So, please don't stop praying for this little family. All of your prayers have assisted in getting Grady this healthy and he will continue to improve with the love you have given him. Hopefully, it will not be long before all the kids can live a more normal life and not have to be so cautious.

As always, thank you for your love, support and most of all your prayers. Also, a big THANKS to the work team that got this house so much closer to being completed. You did a great job.

Talk soon,

JoJo

Big Visitors to tell G Happy 9 months

Just about the time Grady starts growing and getting bigger, look what shows up! Now these are very Big Boys. Some of the Dallas Cowboys came to the hospital to visit the children. These boys were bearing stockings full of Cowboy stuff. The stocking is an official (clean) Dallas Cowboy sock. If you look closely over Grady's left, you will see a picture of this years Dallas Cowboy Cheerleaders. Um, does anyone have a 10 by 12 frame Grady can borrow? Mommy will this go with his new room decor?

Our little man is doing well. He has gotten back to his 13 pounds and he is 24 inches long. His little fat dimples are disappearing. His thighs are getting longer. Little G looks skinny and long. Guess his body finally knows it is safe to grow. Grady continues to do great with his breathing. He sleeps a little more than usual, but this breathing thing is hard work. And he is eating as much as he can have. Looks like this little man is trying his best to get home for Christmas. Keep up the good work, Grady Pants.

Well, I just wanted to share some of the fun the hospital has for the children. We have been told that this time of year brings a lot of visitors to hospital.

If any of you have ever wondered if prayer really works, go back to the top and look at the little man that needed prayer and got it. We feel so blessed to have such a strong extended family. There is not way to thank you enough for your prayer and support. Hugs.

Talk soon,

JoJo

Busy, Busy times

It has been a long time since we last talked. Grady's world has really gotten busy. He has been working very hard to get off the respirator. You can see, in his picture with Momma, that he has a new attachment on his trach. This is an HME or artificial nose. This allows Little G to be free of the hoses that were connected to the trach. It does the same thing that our nose does and heats the air that he breaths. It also puts moisture back into his lungs. Picking this little boy up is so nice with no heavy hoses hanging around his neck. Friday night was his first 24 hours with no respirator assistance. He is doing very well. All blood gases are good and Grady is good.

Grady has plans the next couple of weekends. He will be spending them with Mommy and Daddy. It is part of the process to getting him out of the hospital. We are so close that it is getting exciting. It is also getting every one of his care-givers in a rush to get all their paperwork done. He is having a lot of visitors because they all need to get one last follow up on him.

YES! Grady is coming home soon. We still have some planning and prepping, but it is getting close to time to bring this boy home. What a blessing that is going to be.

Well, more soon. I hope you all have a very Merry Christmas.

Talk soon,

JoJo

Grady had visitors

What a day Grady has had. He had surgery first thing Monday morning to have his internal shunt put back in. That involved three different incisions. Ouch! Little G spent the afternoon off the veny. WooHoo. He did fantastic. As you can see, he also had some visitors. This is Grady's Great Grandmother. Is she fabulous or what? Off the airplane and straight to the hospital to see her great grandson. MiMi came to visit and she was the first person to get to hold our little man, after surgery. As you can see, his surgery went as expected. The surgeon told us that we should be done with surgery and if G has a good night, he can go back to his old unit in the morning.

Well, we are back on the old unit. Do you remember TCU? Man, how great it is to know that we will work on getting this boy off the respirator and that is all we have to work on. There is physical therapy and occupational therapy, but G loves that. Remember the baby massage? Me too! Our little guy can now start working on sitting up and reaching out and getting home! We have not talked about the doctor's plans yet. Hopefully, we will know something very soon. Grady is off the respirator 8 hours a day now. He has not shown any signs of struggle and that tells us what we have always known. Grady is ready to get off that machine.

We want to wish all of you a happy Thanksgiving. Enjoy your families and loved ones. Thanks for all your prayers and support.

Talk soon,

JoJo

Out of Surgery

Once again, Grady has come through surgery like a trooper. He is doing well, has been awake for a little while. As soon as he can have some food, he will be ready to boot scoot his way back to TCU. One more night in the ICU and off we go. Our little man has his internal shunt back. One less attachment to keep him down. Give G a few days and we will be able to pick him up without ANY attachments what so ever. It wil be the first time Mommy or Daddy has held this little one with the freedom to walk around. Well, guess I better get back to little man.
As always, you are the best support any family can have. Thanks for loving my children and praying for them.
Talk soon,
JoJo

Surgery Updates

Grady did just fine for this last surgery. Looks like we have one more. Monday, they will give Little G his internal shunt back. Today, they opened one more cyst. Mommy and I got to view the last CT scan and got a better explanation of these cysts. They are actually normal fluid pockets that we all have. Grady's problems came from the staff infection. His brain 'walled off' these pockets which formed closed pockets. This is what the surgeon keeps referring to as cysts. He goes in and puts a hole in the wall. This allows the pockets to work together and drain, like they are suppose to. So, our little man now has all but one pocket working with the others. As long as he does not have any infection from now until Monday, they will give him a new internal shunt. So, there you have it. Five minutes with the surgeon and we now have a clear picture of everything that Grady has had working against him. As of today, this should all be taken care of.

When I left him, tonight, he was only requiring tylenol and motrin for his pain. There is a two inch incision from the top of his right ear, heading to the top of his head. It looks pretty painful, but the boy is a little trooper. As long as his belly is full, he sleeps, plays and watches his television. One of his doctors, from upstairs, came for a visit. Grady was talking to her the entire time she was there. He had this look on his face that made me think he was telling Beth to let him back upstairs because they were letting the little green men take him away too often. He is a charmer, that grandson of mine. He is already working on the ladies.

Well, I will try to get some pictures on here, of our precious little rock star as soon as I can.

As always, thank you so much for your love, prayers and support. You give us all the strength to continue through these days.

Talk soon,

JoJo

Non-Emergency Surgery

Well, here we are again. Grady is in the operating room, as I type. Dr. H had a long surgery cancel today so he wants to go get the cyst on the right side. We are still going to watch the one at the base of Grady's head. Yesterday was a busy day for Grady, also. He had a CT scan with contrast. That was not such a good day. They allowed the pressure in his head to build so the contrast would get all around. Grady was not best pleased. After the test, they released the pressure and we had our little fella' back.
Today's surgery will take about an hour. Of course, that means we will wait about three hours before we see Little Man again. We were suppose to have an MRI. We did and they wisked him off to surgery once they saw what they needed to see.
Since I don't have any news on the surgery, let me just tell you that Grady has been working hard to get off the respirator. He is up to six hours a day without assistance. As far as Grady is concerned, there is no difference. He sails through his 'trial time' without any change in his day. Now, when they put the respirator back on him, he coughs. I guess the pressure assistance irritates him. We probably would cough too if we had a machine puff air in us. Once he gets the idea that the hose is back on, Grady will grab ahold of it. Sometimes it seems like that hose has become a toy for G to hold on to. So far, he has only jerked the hoses off a few times. Most of the time, it is just a part of the room. But the freedom it gives us not having to move hoses as we move the boy, is so wonderful that we are the ones getting impatient for the hoses to be off for good.
As for today, it looks like Grady will keep the external shunt until Monday unless the doctor feels there is no risk in putting his internal shunt back in. Most likely, we will have to wait until Monday. With all the infections that Grady has had, I don't see Dr. H taking that risk. But who knows what this wonderful doctor will decide to do! So far, he has made all the difference in our little guy. Well, Grady has done some of that himself.
I will put a note out here when we get this little trouper back to his room.
Thank you all for your prayers and support.
Talk soon,
JoJo

8 Months old

Today has been a big day for our little man. Grady was able to get out of bed and Mommy finally got to hold him. It has been over three weeks since Grady has been held. It is way past time. As you can see, Grady is doing well. He continues to recoup from Monday's surgery. He is taking all of his meals through the bottle again. This is the first bottle, in three weeks, that Grady has taken sitting up. Maybe we needed to hold little G more than he needed to be held......nnnnaaaaahhhhh! As you all know, there is nothing better than holding such a precious little bundle in your arms.

Can you believe that tomorrow, our little man will be 8 months old? Time has really disappeared. You might think that the hours would drag on, sitting in this hospital all the time. It is amazing how fast the days have gone by.

The doctors are running cultures on Grady every day. It takes about 3-7 days for this infection to appear. So far, we have one positive results and one negative. We will stay in the ICU until they internalize the shunt. The good part is that Grady is not battling the fever. He is on three different antibiotics for this and they seem to be fighting the infection off. The doctor did explain to us that as long as Grady has these foriegn objects in his body, he is at risk for infections. We are just going to be extra careful from now on. Right down to using the gloves to change his diapers. Another blessing we have is that our little guy does not appear to be loosing weight like he did the first time. As long as he can keep his weight and strength up, he should be able to kick this infection quickly.

Well, thanks again for all of your support and prayers.

Talk soon,

JoJo

Continuing to improve

Well, Grady had a rough night the day of surgery. He spiked a very high fever but he was already taking the antibiotic for the infection so the fever broke around 12:30. Grady was able to get some much needed rest. Day two brought sedation and pain meds. Grady slept about 24 hours. Day three brought a bright eyes little boy that wanted his bottle back. Today, Grady woke up happy. He has been looking around his room, checking out all of the new colors and shapes. This room has walls to keep the sounds of others out. This is the first time , since the surgery, he has really cared where he was. Grady continues to control his own temperature. He will spike a small fever, but it will break before he gets any tylenol or motrin. That is a very good sign. We were told, in the beginning of this, that he would be very sick for about a week. Looks like, once again, Grady will have it his way. He only wanted to be sick for a couple of days. Now we will just hang out here until they change all the hardware. The next surgery will give little G new hardware and an internal drain. I am hoping that we will be able to get him out of bed after that. A couple more weeks of fighting this infection and he should get his internal shunt back.

Well, that is all for now. I will get a picture of this little snuggle boy on here when I get back to the trouse. Thank you all so very much for all your prayers. Looks like we may be here for some time. Hug my kids when you see them.

Talk soon,
JoJo

Cultures never lie

Mommy was nibbling on Grady!

Grady is recouping from surgery. He began running a fever the morning he was scheduled for his shunt to be internalized. Guess what they found?!?!? Infection! So the surgery plans were changed to a new, clean external shunt. Grady is still in the PICU and he is still confined to his bed. This will lead to another surgery in about two weeks that will give him new hardware and an internal drain. After another two weeks, or when Grady is completely infection free, the surgeon will put the internal shunt back in. We may be in the PICU for as much as a month. Anyone up for a hospital turkey dinner? Looks like Grady and I will be dining in for Thanksgiving.

For now, Grady is receiving drugs to keep him relaxed. The doctor replaced his stitches a little bit ago. Looks like Grady has to have a certain material for his stitches or it will not hold. This boy has the sweetest and softest skin you could want, but even that can be an issue when you need someone to sew you up.

At least the boy is well fed and well loved. As we sit here, nurses, doctors and other very helpful staff members come by to see how our little G is doing. He is pretty well known on this floor, too. He must have signed up for the membership. Someone take his debit card away.

As Grady continues to improve, I will keep you all updated. I can't give you a picture right now, but check back later. I will add some when I am not at the hospital.

As always, you keep us going. Thank you for your prayers, love and support.

Talk soon,
JoJo

One more surgery

Well, looks like we have one more surgery to endure. Grady's surgeon will put the shunt back in tomorrow. After 3 weeks in the PICU, they will not try to reach the cyst on the right side. After many cultures and MRI's, Grady has been declared clear of infection and can have his shunt back. Funny how we cried and worried over him getting the shunt in the first place and now we can not wait until it is returned. He will be getting all new hardware so that will require three incissions. Poor little fella will have stitches in two places on his head and his tummy. His surgeon has been in Grady's head more than anyone ever imagined, including Dr. H. At least little G has had the same surgeon every time.

This is the first family picture we have had an opportunity to get. It took a little time to get everyone looking at the camera at the same time. You can just imagine trying to get them all to smile for the picture. Well, Grady didn't smile, he was a little curious about everyone trying to get into the bed with him. If we could read his mind, we would know that his big concern was who had his paci. The look on his face says, I will share my bed, but leave my bottle alone.

Our little man is taking 4 ounces now. He really seems to enjoy getting his bottles. All feeds are now given from a bottle. They call it add lib, but his nurse called it on demand. I like that a lot better. It sounds more like Grady. Taking the bottle away just to get a burp out of him causes Grady to turn a beautiful marroon color. Needless to say, he is not best pleased when you take his groceries from him even for a minute. Once he has his belly full, Grady does his leg lifts. Exercise time comes after every bottle. This is something that Grady started doing about two weeks ago. I guess he is trying to get a head start on his six pack.

I will let you know how the surgery goes and get some more pictures up. We are looking at the noon hour and it should take several hours. If I get the chance, I will update this from the hospital.

Thank you all for your prayers and support. God has placed you in our lives and we could not ask for a better extended family.

Talk soon,

JoJo

Hangin' out in the PICU

Well, here we are still in the ICU. Grady is doing well, he just has to be monitored by these nurses while his shunt is on the outside. Looks like we may have another surgery once his ventricles are expanded. Sounds a little scary, but the surgeon is hoping to go through Grady's right ventricle to get to the last cyst. Hopefully, he can because that will be a little less invasive. Of course, all surgery is difficult, but his doctor was telling us that brain surgery is easier to recouperate from than most other surgeries. HHHHMMMMM. I wonder how many he has recouperated from???? Just kidding. Thank you, Lord, Grady has one of the best neurosurgeons there is. Dr. H. is suppose to be the best when it comes to pediatrics. Now, he did tell us that Grady has not done anything normal yet. Dr. H admitted that our little man has been a challenge.

Funny how things happen. Makes you wonder how God planned all of this eons ago. I was talking with another parent yesterday, from W.F.. Man, this world gets smaller every day. When you pray for our little G, you might just add all of these precious little people in your prayers. You don't need their names, just knowing that they are all fighters and all deserve to have someone loving and praying for them is enough. We have made several friends here. Some of them are patients and family and some are the wonderful nurses, therapists and specialists that help Grady and all the other kiddos here.

As always, love you guys and thanks for loving my children. Your prayers and support are truly what we need.

Talk soon,
JoJo

Successful Procedure

Well, Grady is out of surgery. They removed his internal shunt this morning. His doctor wants to make sure that there is no bacteria attached to outside of the shunt. It will go for testing and we should have some results next week. For now, Grady has an exterior shunt and he will remain in the PICU until we get an all clear from the different tests that have been ordered.

Grady is doing wonderful. He was awake for a few minutes. Just long enough to peek at Mommy several times to make sure she was there. Then, off to sleep land he went. Grady seems to need natural sleep after anesthesia wears off. He will get to return to his regular schedules for everything, once he is alert and wide awake. That means he gets his bottle back as soon as he can tolerate it. He now has an order to allow him to set his own schedule and amounts. Of course, we are keeping him within reason. Don't want the little one to pop just because he wants to be a little piggy. When he goes over his regular 90 mls, we call it dessert. For now, Grady can sleep until his tummy wakes him up.

If you are a friend of mine on facebook, I put a short video of Grady for you to see. I tried to get it out here on the blog, but something did not work. Must be operator malfuntion.

Thank you all for your prayers. We all know that is what is getting Grady through all of this. You have to know how very precious you are to all of us. For now, just hug your precious loved ones and we will give Grady kisses from all of you. Does that mean we need to kiss him until sundown?

Talk soon,

JoJo

Funny faces of Grady

Hope you enjoy these pictures of our little guy. He has such funny faces sometimes.

JoJo

Unexpected Update

Well, just thought I would take a minute to fill you all in. Monday, Grady went back under the knife to clean up the incision from last Monday. We got him all settled into the PICU for a few days. He did wonderful for the little procedure, but they did not like the outcome of the cultures they took afterward. So, we are now waiting our turn to have the shunt removed. One of the team from his neurosurgeons group explained that bacteria likes to cling to any hardware and they are thinking that may be the case with our litle guy. Grady is scheduled for surgery Friday morning.

Sorry there is not picture. We are at the hospital and can not put his picture on their system. I will add a picture once I get to my computer.

Grady is doing well. He continues to gain weight for now. Once the antibiotics kick in, we may be loosing again. He is still enjoying his bottles and continues to eat all he can get. Grady can have as much as he will take, but we stop him at a reasonable amount. He is getting comfortable with 95 to 100 ml. Pretty good for this little fella.

Well, again we are asking for prayers. Grady will have to remain in the PICU until there is an all clear from infectious desease doctors. He will have an external shunt and that will require constant monitoring.

Just know how much you all mean to us.

Talk soon,
JoJo

7 Blessed Months with more to come

Well, since the last time we talked, there has been a little excitement in Grady's world. First thing, he is 7 months old today. It is so hard to believe that this little guy has been blessing our world for the past 7 months. Man, how time has sped by. As you can see, he is quite the little sweety. He has not grown much, but with all the surgeries and infections, his little body has been concentrating on getting stronger and fighting to maintain. Once he is better, I believe he will start growing again. He has already gained some of the weight back. He lost over 1 pound and that is a lot of weight for this little boy.

Monday, Grady went back to the operating room. He did wonderful and Tuesday's MRI tells us that his procedure was successful. Thank you all for the prayers and support. Grady is doing well, this week. He no longer needs the pain meds and had his first bath today. We still can't wash his head (not much hair to speak of), but he did enjoy sitting in the warm water.

After a big bottle, he setted right down for an afternoon nap. Nap time is wonderful now that Grady has decided to participate. His new schedule has helped with that. He gets his breakfast an hour earlier, now. Yesterday, he took 5 mls more than he usually does. We decided he was needing some dessert.

Well, I will not promise to get better about the updates. Seems like every time I do, something happens that keeps me at the hospital longer. So, I will update the next chance I get and hopefully that will be soon. As always, we can never thank you enough for all of your love, support and prayers.

Talk soon,

JoJo

MRI today

Today, Grady is having another MRI. We will find out just how great the antibiotics have done. I know that our little guy will have beat this infection. He is one of the toughest little people I know. Once we know the results of this MRI, Grady can continue to work on getting off the respirator.

While he was on two different antibiotics, Grady dropped over a pound. His doctor decided that Grady should get one long meal throughout the night. Must be pretty good stuff because he is gaining his weight back. He lost one chin and part of his little butt cheecks. It is good to see those pinching spots returing. Holding him close, you really notice just how tiny his hiney is.

The doctor has also given G back his bottle. You must know by now, how much Grady loves his groceries. He wants that bottle every time you put him in your arms. He is assuming the postion and expects a bottle to be there when he is ready. All I can do is laugh at him. Poor little fella. Mommy held him this morning and that was tough. NO bottle because of his MRI. Food was stopped at four am and Little G wanted Mommy to feed him. Needless to say, Grady was a little cranky.

The 'Giving to Grady' Golf Tournament was a blast. Thank you all for a wonderful day. It was so much fun seeing everyone and driving that cart from Hole to Hole. Hope everyone had as much fun as we did. We are all so blessed to have such a wonderful group of people in our extended family. I hope you all know how much you mean to all of us.

As always, thank you for your continued prayers and support. One day soon, you will get to meet this precious little man. Just remember, when you meet G, don't tell him that all of his little secrets are on the Web!

Talk soon,

JoJo

Giving to Grady

For those of you that did not know, several of Mommy and Daddy's friends wanted to do something to help Grady. There was a golf tournament and dinner for him. We had a blast. It was so much fun seeing everyone, watching the teams play golf and just talking with people.

There were Team Grady T shirts, there were hamburgers grilled out, carts for us non-golfing partipants and two chances to win money or a car for a hole in one. By the way, golf cart zooming can be a lot of fun. Just remember, you need to know who is teeing off before you pass up a team. Philip and Kimala had a zoom by golf ball bouncing in front of their cart. Guess that means it was bouncing behind me.

The turn out was wonderful. There were quite a few teams. We had players from Oklahoma, Fort Worth and a very special person drove in from Florida to spend time with our Grady while Mommy and Daddy were at the fund raiser. Hope GiGi did not get all of the Grady kisses.

As for our little guy, he is doing very well. Grady is on two different antibiotics which has caused him to drop some weight. But, as you can see, he still looks cute as ever. We have a couple more weeks of these drugs and then we can concentrate on putting the weight back on him. Grady has not let that slow him down, though. The big smile you see is from Grady getting his mobile back. The batteries has run down and he had gone several hours without his little friends circling his head. The nurse got batteries put in the mobile and within 30 to 45 seconds, I had this smiling picture. He was so happy to see his monkey, ostrich and giraffe circling his head that he chuckled.

I want to take just a minute to thank every one of you for coming out to the Golf Tournament and the dinner, Saturday. Your kindness, support and generosity was overwhelming. Tim and Suzanna and the rest of the family want to tell you how much we love and appreciate all you have done for Grady. Having your for support warms our hearts. We can never say Thank You, enough.

Talk soon,

JoJo

Six Months old today.

Can you believe this child is 6 months old today!?! Wow, time has really snuck by. What a blessing these two children's hospitals have been for our little man. God is good. Grady is almost 22 inches long. He has dropped a little weight because the antibiotics are playing havoc with his 'tummy'. But the doctors and nurses say this is normal and not to worry about any weight loss for now. If G loses a lot of weight, we will worry. But for now, we are just enjoying this little boy as his true personality really starts to show. As you can see, Grady is smiling at things, he has a belly laugh that will cause you to laugh right along with him. He keeps his JoJo laughing all the time. One other thing we are celebrating is Grady throwing a fit! I know, I know, who wants a baby to get that mad. We do. As Grady is waking up from all the sleep meds and other stuff they have had him on, we are seeing things that we should have seen before now. Grady can throw a fit like every other little fella his age. He gets down right CHAPPED. And I laugh at him while trying to make it better. It is a wonderful thing to see this little boy begin to act like a 2 to 6 month old baby.

For those that do not know it, there is a fund raiser for Grady next weekend. We will be there to see everyone. If you are interested, go to http://www.givingtogrady.com/ to see what it is all about. It should be fun.

As always, thank you for all you do to support my family. Your prayers are priceless to us. Hope to see you all soon.

Talk soon,

JoJo

Grady's Jojo

Here are some pictures of Grady and his Jojo. For those of you who don't know, Jojo is Timmy's Mother and Grady's Grandmother, Jodi Kidd. She is the one who started this blog and continues to keep you updated on Grady's progress. I thought it would be nice to put a face to her name.

Jodi has spent the last 2 1/2 months living in Fort Worth and taking care of our little man. She sends us pictures throughout the day and keeps us updated on any changes that occur. It is so comforting to know that she is there with Grady. The nurses take wonderful care of him, but she gives him the love and affection that he needs too.

We have truly been blessed with a Guardian Angel!

Back to TCU

Today, Grady was released from the PICU. Yea, Grady. He is so happy to be back in his bed. For now, Grady is still a little sedated, but they are weening him off of the sleep medication he has been on since his last surgeries. Yesterday, the surgeon read Grady's last MRI. He was pleased with what he saw. Grady did not get an all clear report, but everything appears to be moving in the right direction. Now that he is back on his transition floor, the respiratory specialists will begin weening Grady off of the respirator again. He will also get to begin his bottle feeds again. We don't know when that will begin, but I know the little man is really missing his bottle.

While we were in the ICU, Grady was introduced to 'Sweeties'. It is a natural sweetener that helps encourage and teach babies to suck the pacifier or bottle. They also use it to help rid the child of hiccups. Well, Mr. G. is loving his sweeties. He will lick his lips and smack. This is his way of asking for something to moisten his mouth. And you know his JoJo is going to try to give him what he wants. Thus, the sweeties. It is a good thing Grady does not have any teeth just yet, otherwise, his Mommy might just send me some dental bills.

I hope you enjoy the pictures. Mom and Dad took thier picture today. The other handsome couple is Mommy's Mommy and Daddy. I thought since Grady is in his home away from home, you all might enjoy some family pictures.

As always, thank you so much for your prayers and support. This was a rough time for my family and having your support and love has carried us through it one more time.

Talk soon,

JoJo

Better Days

Grady is doing much better these last couple of days. He is still in the PICU, but you can see the smile for yourself. We are beginning to see our little boy returning to himself. He has been through a lot these last two weeks. If you are counting, Grady has had three procedures in the last two weeks. All of them in his head. He has spent the last week sedated, so we have spent a great deal of time at the hospital with him. The doctors have begun to reduce his sleep drip and his pain medication. This has caused him a little discomfort because the sleep medication is a narcotic and coming off of that has given our little man a challenge. Last night, he had a rough time of it. According to his care givers, he was wide awake for most of the night. Today, Grady has slept most of the day. They have begun the weening process again today. Let's hope this little fella' gets some sleep tonight.

During Report, one of Grady's doctors asked if the patient has been out of his bed. When the nurse told him no, he ordered more treatment. This PRN (as needed) is for JoJo, Mommy and Daddy. The doctor ordered the patient be allowed to get out of bed, PRN. Now that is one treatment that I completely agree with. Needless to say, Grady spent several hours in my arms, on his tummy today. This may be why some people fall in love with their doctors.

As always, thank you for your prayers and support. We are so very blessed to have you in our lives and family.

Talk soon,

JoJo

Way to Go, Grady!

Grady has come through his dual surgeries just like the fighter he is. The neurosurgeon was able to drain the infected area and he also got the cyst to drain into the proper canal. This is not the most flattering picture of our little guy, but he was just waking up. I knew you would want to see him so you would not worry. For now, Grady should sleep for the next several days. They have re-started his sleep drip and pain medication to keep him resting comfortably.

Thank you for all your prayers. Check back soon and I will put some cute pictures of Grady to let you see how well he continues to recouperate.

Talk soon,

JoJo

Another Surgery Friday

Grady has to go under the knife again tomorrow. The Neurosurgeon wants to go in and drain a spot on each side of his head. Because there is an infection, it will be two procedures back to back. They have to do one, then begin again with another sterile area to go into the other side. There is not much to tell at this point, but I will keep you informed as I find out information. For now, please pray for our little boy. He is such a little fighter. This may come to a shock to all of you, but he is charming his way into the hearts of many wonderful and caring nurses, Therapists and lots of other care givers.

Talk soon,

JoJo

Grady is a Rock Star

You have heard it before, but Daddy keeps telling us Grady will come through this like a Rock Star. Well, our little Rock Star has been blessed again. He has a staff infection in his brain. How scary is that? The doctor told us this morning that his infection is one of the lesser ones and they know the exact treatment to clear this up. Thank you, Lord! and thank you, everyone, for praying for this little guy.
We are not out of the woods yet, though. Grady will have to undergo another surgery so they can put an external drain in. This will allow them to drain the pockets of infection and flush the areas. Little G is receiving a sleep drip to help him sleep through all of the recouping time as well as a little pain medication. He rests well with his booster! He doesn't appear to be in pain most of the time, but when his stats start climbing, we know the pain is starting. But the ICU nurse just gets Grady his booster and within minutes, Little man is resting again.
One more thing you will enjoy knowing. Grady is becoming quite the popular little guy in the ICU. His nurse asked Mommy if that was Seth James that came to visit Grady. Why yes it was. Grady's nurse was pretty excited. She told us that her boyfriend was a big fan and that she was raised in W.F. Such a small world. Thanks, Seth and Jessica for coming to see our little boy. It was great seeing you both.

As always, thank you all for your many prayers, texts and loving thoughts.
Talk soon,
JoJo

Surgery over for now

Grady has been through a lot today. He had three different procedures done. He has a medical port line, he had the infection drained and they also drained his left ventrical. The fluid in the left ventrical appears to be clear. That is very good news. We will not know if there is any infection in that fluid for several days. They have sent all fluids off for cultures. As you know, that will take up to 72 hours.
The neurosurgeon was very pleased with Grady and how well he handled all three surgeries today. As Daddy keeps telling us, Grady came through it like a rock star. He is in pain, but his doctor has put him on a anesthsia drip for tonight to let him rest and calm down. Grady is have a minor issue with his vital signs, but again, he is in a lot of pain. His vitals are high, but not so high they are worried. They are concerned enough to let him sleep through the night with assistance. We may still be looking at another surgery, but for tonight, we will wait and see. Doctor says, one thing at a time. So, we will let Grady get through this before we address the next step.
I know I am leaving a lot of your questions unanswered, but I don't have any answers for you for now. There does not seem to be an explanation for the infection other than it could possibly have been there for some time and is just now causing problems for Grady.

Keep those prayers coming. It works and Grady is proof of that. Hold your loved ones tight and thank you for all you are doing to help support and pray for my family.

Talk soon,
JoJo

Surgery Update

Just wanted to give you all an update. Grady went into surgery at 12:00. With three procedures to complete, they will probably take around 4- 6 hours. We will not know anything until they give us calls after each procedure. For now we are just asking that you pray for our little man. I will put more information out as we receive it. First surgery is to put a line in for the antibiotics that G will require for about the next 6 weeks. Then they will drain the infected areas to pull that off of his brain. Last but not least, the surgeon will move to the other side of his brain to see if they can relieve pressure from the cyst that is pushing on his brain. So, we are looking at a very long day and a very long recouperation.

Grady was alert this morning and smiling at Mommy and Daddy. He was responding much better today than he was yesterday. Later, we may have more surgery facing him, but for now they will concentrate on the infection and the pressure.

Thank you all for your prayers and support.

More updates later.

JoJo

Lots of new changes

Grady is recieving new settings, again. This little boy has taken on most of the breathing. He has certainly taken on this challenge. Grady's doctor began the weening last week. This week, we are looking at more changes. Today, the respirator pressure is getting dropped to 4. When Grady moved to the TC Unit, it was in the 20's. Three days ago, they added the Passy Muir. This is a connection that forces Grady to exhale past his voice box. Little G has been talking without this connection, but this allows him to be heard much better. It adds volume to his voice. He did not like this very much and only tolerated it for about a minute. Grady will get to try this daily until he gets used to it. The way this little man has taken all his other changes lately, gives me confidence that this will not slow him down either.

Grady is now taking three bottles a day and those bottles are 50 ml each. Are you surprised to know that he is not best pleased when the bottle is empty and he can not have any more? I'm not. He has also moved up to 75 ml each meal. As he continues to gain weight, the doctors will up his amounts. Don't tell anyone, but Grady has a burp that can be heard across the room. His burps are not little or just one at a time. Grady will be burping the alphabet before we get him home.

Grady has a mobile that plays music. He loves it. The music is very calming to him and helps drown out the other sounds in the unit. One thing he seems to not appreciate though, is one button on his mobile. It plays a song from Bach. It is pretty funny to watch his expression. Much like the one it the picture above. This song will raise his blood pressure and make him fidget. There is another child on the other side of the unit that cries and Grady can hear him. Grady will give me this look, that makes me laugh. He does not like that sound, either. I keep telling him that I can not stop that sound, so we just hit a button on his mobile to help cover the crying. This seems to give Grady something to concentrate on and makes him happy again.

As always, thank you all for your love and support. Grady is such a blessing and I can not wait until all of you get to meet this little cutie in person. I pray that God blesses each of you as much as he has blessed this family.

Talk soon,
JoJo

Working hard

Our little guy is doing wonderful with his new settings on the respirator. As you can see, he is alert and cute as can be. Grady's first day with the pressure down, was a little tiring on him. He slept a lot that day. But the very next day, you would never have guessed the doctors had changed anything. He is working a little harder to breath on his own, but he is getting it. Once he is comfortable with this new pressure, they will move it down again. Soon, Grady will be doing all the work and that is when they will start trying him off the machine.

As we expected, Grady is taking two bottles a day and they moved his amount up to 30 mls. This is a large step for him, as well. It appears they will increase his amounts before they increase more feeding times with a bottle. This little man is really enjoying his bottle. Now, if you kiss him too close to his lips, he is expecting a bottle to fill his opened mouth. It is too cute, watching him turn his little head with great expectations. There might be some real issues if the pacifier were not flavored vanilla. That seems to still make him happy when he is not getting food across his tongue.

As for Grady's growth, he is 10.36 lbs and 19.75 inches long. He is beginning to outgrown his newborn clothes. His 0-3 month clothes are beginning to fit him much better and he is filling them out quite nicely. It is such a blessing to see his little arms and legs plump up. Within the next few days, his unit will be out of isolation and we will no longer require the beautiful yellow gowns. That will be sooooo wonderful. Those things are pretty hot and I am not complimenting them. For such a thin product, they sure keep the cool air out. I guess that was their design.

Well, that is all for now. Please know how grateful we are for all of your support. These have been growing times for us and it is such a wonderful feeling knowing that you all are there praying for Grady and his family. We love each and every one of you. Having your support and prayers has carried us a long way.

Talk soon,

JoJo

Parent Talks

According to Grady, parent talks can really get pretty interesting. I just hope Grady has gotten his parents all straightened out. He had a long talk with both of them and I think they now have the right idea. What that is, I could not tell you. Mom and Dad are not sharing. Just in case you could not see for yourself, Grady is growing and filling out wonderfully. He weighed in a little over 10 lbs today. Go Grady boy, go. Maybe he was having a big boy conversation with Mommy and Daddy.

This has been a big week for our little guy and it is only Tuesday. Monday, the doctor lowered Grady's oxygen rate from 23 to 21. That is considered room air, the same that you and I breath. Today, they lowered his pressure rate. This is more good news for Grady. All these numbers, rates and pressures can get confusing. Just know that as all of these drop, Grady is getting closer and closer to getting off of the respirator. The weening will go slowly. We have been told that he will start with an hour at a time. This will give the doctors a good idea of how tiring it will be for him to breath without assistance and also give Grady time to get used to breathing without help. They will increase his time off the respirator using baby steps. From the day Grady was born, the doctors have told us we are all on Grady time. So, one more thing happened today. Grady will start taking his bottle twice a day and he was moved up to 30 ml each bottle feed. It took him a little time to get the hang of it, but once Grady figured out what that bottle was all about he is all for it.

Let me say Thank you, again. Your prayers, love and support give all of us strength. God has blessed us with Grady and great friends.

Talk soon,

JoJo

Family Photo....s

Well, we almost have a family picture. It just had to come in two pics instead of one. Now that Grady's uncle is closer, we might get them all into one picture, yet.

You can see the boys are gowned. There is a small outbreak in Grady's unit, so we are all wearing gowns and gloves. One more thing we have to do to spend time with the little guy. It is a good thing he is worth it. You can also see how much he has grown. Grady was a little over 9.5 lbs before this little bug broke out. Grady dropped a few points, but he is still close to the same weight. So far, none of the babies are showing symptoms of any illness, so we are just playing it safe and gowning up when visiting.

Since we last talked, Grady has begun tummy time and he is learning to take his meals by mouth. Today, he took 20 ml in about 5 minutes. You should have seen the look he gave me when I took the bottle away and replaced it with the paci. It was not the best look, believe me. Amazingly, Grady has to take small steps in his learning to take the bottle. Apparently, the amount of calories he burns taking the bottle is a large concern so this week he moved up to 20 mls once a day. The calorie concern has a lot to do with him being a preterm baby. Next week Grady will get to have the 20 mls from a bottle, twice a day. This little man is really enjoying that bottle. It took a little bit, but once he figured it out, that was all she wrote.

Grady has also been moved up to a larger respirator system with larger and longer tubing. This allows him to get into the floor to sit in his bouncy seat or watch the television or just look at how big everything is. There are plenty of padded mats to make him his own little space. With Grady in the floor, we can get down there with him. Mommy really enjoyed just laying in the floor with her boy. I will get those pictures up next time. Most of the babies have floor toys that they can play with. Grady has the strength in his little hands to play with some toys, but he is still so small that Mommy just holds his hand or helps him with some stretches. One day, they will be taking a nap together in the floor.

Well, there are so many little things that can be shared with you. I promise to get back to sending you all updates sooner. Grady has so many people loving and praying for him that we feel very blessed. Thank you all for your continued prayers, love and support.

Talk soon,

JoJo

Bath Time

It has been too long since we have talked. So, I am sharing a couple of my favorite pictures to make up for neglecting you. As you can see, bath time is getting much better thanks to Mommy's great idea. Grady wears himself out during bath time. He is beginning to enjoy the water. No, he has not turned into a duck yet, but practice makes perfect. Just look at that relaxed little man.

Grady continues to grow. He is now 9.5 lbs and 19.5 inches long. The massage therapist came to visit today. We now have two books to instruct on how to make this little boy enjoy touch more. It is going to be interesting to see how this works for him. There is a lot of repetition with this, but the best part is that there are no exact moves. If the baby likes it, you just keep massaging that area. Believe it or not, she told us the back is usually the area the baby does NOT like. Children! They just don't know what is good, sometimes.

Tomorrow, Grady will begin his bottle feeds once a day. That will be great times for all involved. He has been practicing with the paci and doing a great job. Grady can make that paci pop, so the bottle was easy for him to get the hang of. The only problem he is having now is that he does not want to stay awake to finish his dinner or lunch or breakfast. That will be our challenge. Teaching him to enjoy his food is the easy part. He has spent the first four months of his life, sleeping while his tummy was getting full by the feeding tube.

As always, Grady's progress has much to do with your support and prayer. He is a very strong little boy and I can not wait until you all can get to know him. He is one blessed little boy, having so much love sent his direction. Thank you all for being a big part of our lives.

Talk soon,

JoJo

4 Months? 3 Weeks?

Happy Birthday, little one. Today, Grady is 4 months old and 3 weeks old. Sounds funny, huh? If Grady had been born on his due date, he would be three weeks old. But, instead, God blessed us with this little man four months ago today. The nurse tells us that he is 8.75 lbs and and almost 19 inches long. Just about the right size for a three week old. Puzzling, right? Sometimes I get a little confused, too. He may be 4 months old, but remember, he has been growing to his birth size these first 3 months that he has been with us. So, today, Grady is 4 months old and 3 weeks old.

Most of you know, Grady moved to the TCU, Transitional Care Unit, a couple of weeks ago. Here, we get to care for all of his needs. We pick him up and hold him when we want to. One of Grady's therapy lessons is to be held while he eats and he needs to have his paci. This will help him associate a full tummy with suckling. But, it is wonderful and scary at the same time. All of Grady's bells and whistles now mean a lot more to us. Learning what all of these represent is a little intimidating. There are many other lessons that we need to complete, as well. So far, we have all completed several things. One is giving this little boy a bath. Now, it sounds a little odd that we have to learn to bathe Grady, but remember, he has several new attachments that can not be submerged in water. Mommy has found a way for Grady to enjoy his baths. He can sit up, which helps his breathing. Yeah, Mommy. All little people should get to enjoy their baths. And he smells so good afterwards. Grady loves to have lotion put on his feet and hands. We are still working on his comfort levels for his legs and arms. His Ocupational Therapist is referring Grady to massage therapy. Hhhhmmm. Where is the sign up sheet for that?!

Now, if we have to be checked off for a bath, you can just imagine all the other things that need to be learned. So far, we have jumped in with both feet. Daddy was the first to change Grady's trach. He got us all started and now we are all taking those first steps and getting our check list shorter. Thanks, son. It is a relief to know that you are here to prod us on.

Well, I must say it is wonderful to be here spending this much time with Grady. Getting to know him and learn what his personality is developing into is great. He has a little bit of a temper. But only when he does not get his way. The Boppy is turning out to be his favorite thing from home, besides Mommy and Daddy and sister. Sorry, Pete, but Grady doesn't know you yet. Music is very soothing to Grady. He is still charming all of his nurses and the eye doctor told me he is a very strong little fella. Grady loves his hands and he is learning to grip things. If he is mad, you may as well just wait until he gets tired. You will not be getting that grip to open until then. One of my favorite things is the bridge of his nose. It is the perfect place for a kiss. If you place him right under your collar bone on your chest and hold him close to you, his nose is right there just asking for you to plant a big old kiss on it. Hey, just wait until it is your turn to hold him. You will try it, I promise.

Thank you all for being an important part of our lives. Going through this with you there makes all of these challenges a little easier. Your support and prayer has brought us a long way.

Talk soon,

JoJo

Little G

Grady continues to grow. He is so alert now. It is a blessing to watch him enjoy all of his new surroundings and the colorful crib attachments that Mommy and Daddy have been adding to Grady's world. You learned about his boppy the other day. He is still enjoying it and so is everyone else. Grady is so happy to sit up or just take a nap while the boppy snuggles around him. Man, I wish these were around thirty plus years ago.

As you can see, our little man is a wee bit content. Home would be better, but for now, it looks like Grady will be in the TCU for a little longer than originally thought. He has some growing to do so that his lungs can build new tissue. As he grows, his lungs will get bigger because he will be developing this much needed new tissue. Some of you may already know this, but when we are born, we only start out with about 10% of what our lungs will be as adults. As we grow, our lungs grow too. Grady needs more lung capacity to be able to get off this respirator. The nurses are watching his oxygen saturation and as he can tolerate it, they will reduce his amounts. Once he is at room air, they will begin weening him off the respirator. Looks like our little man will be staying longer than any of us had hoped. Now, on the bright side, it is a blessing that he is with these wonderful nurses and doctors. Spending my time with him, has allowed me to observe the family environment the nurses try to give all of these precious babies. Grady has a neighbor that is such a delight. Every nurse or doctor that walks by, stops and visits with him. This child has a smile on is face most of the day. They call him by name, know what he likes and everyone seems to spend at least a few minutes just talking to him and teasing him. He loves it. It is very comforting to know that Grady is in such a loving place.

Love, prayer and faith have gotten us this far and I know God will continue to carry us through to the day we get to bring this little fella home. Thank you so much for all you are doing for this family. I pray that God blesses every one of you and yours like he has us.

Talk soon,

JoJo