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