New Blog

We have a new web address for Max's Updates

www.kjmjules.wordpress.com

Let me know if you like the new set-up or old set-up better!

We Have a Date

Another CT scan will be done on Oct. 4 and will be followed up with an appointment with the neurosurgeon, Dr. O'Brien. Specific prayer requests: the fluid will drain out of the ventricles, his body will function without the use of the shunt, no damage will be done to his brain in this process.

Please check out Gavin's site and say some special prayers for him, as well.

13 Months

Max turned 13 months old yesterday. He's not really looking like a baby to me anymore. So that I'll be able to remember, here are a few things he's doing right now:

*waving bye-bye
*pointing at things he wants
*trying to open the door to go outside
*loves to push buttons, like garage door opener, and flip light switches
*play peek-a-boo around objects, like he'll duck behind a toy to where he can't see me then pop up real fast
*play catch
*he throws the ball pretty good
*LOVES to be outside and cries to go out there
*jabbers all the time
*sounds like he says hello, bye, no, yeah, ma ma, da da (i don't think he has meaning connected to all these words yet, except ma ma and da da)
*loves to look at pictures of family
*is still fascinated with doors, cabinets, and drawers
*loves his dump truck
*always has to have something in his hand
*applesauce and smashed up bananas are the only fruits he'll eat
*grilled cheese is a favorite food
*extremely bashful for the first few minutes of being around someone new.
*his favorite toy is empty cool whip containers

We just love it when he talks to us because he looks at us like he really is saying something big, but we can't make out a word of it.

We still don't have a date set for the next CT scan and appt. with Dr. O'Brien. Max seems to be feeling good, so things must not be bothering him yet. When you pray for him, please pray specifically for his body to drain the CSF (fluid) so that surgery will not be necessary, for no damage to be done by the build up of CSF and possible pressure in his brain, and for peace for us.

Update

Holding his all-time favorite toy, a cool whip container!

Max had a CT scan this morning and an appointment with our new doctor, Dr. O'Brien. The CT scan showed that the ventricles in his brain have gotten larger since the CT scan he had a week ago. However, they are considered to be a stable size at the time being. We are supposed to watch him closely for any behavioral changes, changes in sleep, or sickness. Symtoms could indicate a problem. We already know the shunt is not working. No surgery is required at the time being, but I would speculate that it will be in the future. We go back in 2 weeks for a follow up CT scan so that a comparison of the ventricles can be made at that time to the CT scan we had today. Several people have asked me how we liked the new doctor. Well, we waited in our room for an hour and a half to see him and he came in and talked to us for about 2 minutes. So we haven't really had time to form much of an opinion of him. We got kind of conflicting reports on the speck of blood. They feel now that it is not blood, but could be scar tissue or a calcium deposit. They also said it's not in the area they originally thought it was in, but is in the ventricle itself. They don't seem concerned about it, so we're thankful for that. As far as we know, he still had just a virus last week. I guess it's a good thing, otherwise this may have gotten really bad before we ever knew about it. I suppose our specific prayer request would be that the ventricles go down in size and that his body will drain the fluid on its own. Thanks for your prayers! As always, we can never express our deep appreciation for those of you who remember him in prayer.


**A few requests for others**
I've added 2 children to the list of kids who need prayers.

One is a little boy named Jake. Jake Doolittle had an accident on Friday, August 3rd which resulted in a head injury. He was taken to Vanderbilt where he remained for 3 weeks in critical care. He is now in Atlanta undergoing inpatient rehabilitation. I'm not sure of his age, but he's pretty little.


The other is a 14 year old girl named Palmer. John's Aunt Frances sent us the following information in an email:

"...this girl could use all our prayers right now. Her name is Palmer Richardson and she is 14 years old. She had leukemia two years ago, has had two good years, and now has another kind of leukemia. She was treated last week, went home yesterday and bottomed out. They have rushed her to the emergency room tonight and that it all I know. Her website is www.prayforpalmer.com. I know that you understand that prayers are answered and this family really covets our prayers. This young lady has so much faith in her God and is willing to endure whatever she needs to endure for the glory of God. (Her grandfather, Prentice Meador, used to be our minister here at East Sunshine.) Thanks for your help in getting the word out."


Thanks for remembering these other children in your prayers!

Oh, What a Week!

The Julian clan has had better weeks, I have to say! I had a wreck on Monday on my way to work. Luckily Max was not with me. I was sitting at a stop sign and a young teenage boy came around a curve too fast and slammed into the front of my car. I had just gotten my car fixed from someone else who hit me in the exact same spot a few months ago. No one was hurt, but it is such a hassle!

The worst has been for sweet Max. When you have a shunt, throwing up can be a really big deal. It can mean shunt malfunction or infection which would be bad because pressure would likely build back up in his brain. Tuesday he threw up several times and was very lethargic, so I called our neuro.dr. and they suggested taking him to the ER at Children's Hospital. We got there about 1:00pm. About 15 different doctors, 15 different nurses, 2 CT scans, 1 x-ray of his shunt line, an I.V., 2 spinal taps (the first drew no fluid, so they had to do it again), and an overnight stay in the hospital later, our hopes are that it is just a virus. We were released and told to watch him and bring him back if his symptoms continue and they will investigate the shunt further.

The CT scans showed that a tube has come out of a ventricle in his brain and they believe has probably not been functioning properly for a long time. The good thing about that is that to this point, his body seems to be doing the work necessary to drain the fluid itself. Yea! The bad thing is, we will still have to go through this process in the future when he gets sick because there is still the possibility of shunt malfunction or infection. The scans also showed a small speck of blood in his brain that is unrelated to his original brain bleeds. He is stable as far as this is concerned, but we are supposed to follow up on it with his neurosurgeon. I called the neuro yesterday and found out that they will likely be releasing us as a patient and getting us established as a patient at Children's. I was extremely unhappy about this and broke down and cried while I was on the phone with them. Dr. Burson (our dr.) has been great, has lots of experience, I completely trust him, and through this whole experience this week I just kept thinking, "I can't wait to talk to Dr. Burson about this and see what he says." Children's is a teaching hospital, so there are lots of residents (which is also why we saw SO MANY docs) and the resident we dealt with didn't act like he had a clue about anything, wasn't friendly or personal, and doesn't know Max's complete history. So...I'm rather disappointed.

Max seems to be feeling better. We can't seem to get rid of that pesky temperature. It goes up, we give tylenol or motrin, the temp goes down, and as soon as the meds wear off the temp goes back up. Last night it was 102.2. He's still sleeping this morning (it's 9:30) and I'm about to go check on him again. He felt warm the last time I was in there but I was trying not to wake him so I don't know the exact temp.

Thanks for your prayers for our sweet boy. Today I feel like it's just a virus, but I was pretty worried on Tuesday. I'm feeling a bit down that this is what he'll have to go through when he gets sick like this, but it's just the nature of having a shunt. Sorry for the LONG post!

Looks like a virus

Please say a huge prayer of thanksgiving that it looks like Max probably just has a virus. Kelly stayed in the room with him last night. She said they had a very long night. It was really hard for him to get comfortable with the IV and board attached to his arm to keep it immobile. She said he finally got comfortable around 5am and then the neurosurgery team came in at 6am and woke him up. It is soooo hard to get any rest in a hospital! She just sent a text message and said that he just ate a little bit. Please pray that he will be able to keep it down. Also please pray that if this is a virus that Kelly and John will not get sick. That is so hard to be sick while taking care of your child.

They are supposed to be doing another CT scan this morning. They are wanting to make sure that his shunt is not infected.

I'll update more when I know something.

We keep praying,
Karie

Update #2

I got a text message from Kristin a little bit ago. She said that the spinal tap looks good so far. They are going to go on and admit Max over night for possible dehydration. They will possibly do another CT scan in the morning. Kristin said that he didn't like the spinal tap at all and he cried for a long time after it. Please, please continue to pray that this is only a virus and that he will suffer no complications from the spinal tap. Also please remember to pray for the doctors and nurses that are caring for Max. As when he was an infant, please pray for their wisdom, discernment, and clarity of mind as they make decisions regarding his care. Most of all please say a huge prayer of thanksgiving that it appears, through the tests that have been done so far, that this is only a virus that is causing the vomiting.

We keep praying,
Karie

Update

After doing an x-ray and a CT scan the doctors feel that Max probably has a virus, thank you God. However, they are doing a spinal tap just to rule out meningitis. Please pray hard that the spinal tap will be clean and that he will suffer no ill effects from the spinal tap.

Apparently, it was noticed on the CT scan that one of the tubes from his shunt has eased it's way out of the ventricle. It appears to the doctors that this happened a while ago, which would indicate that his shunt has not been functioning for a while. I don't really know what this means for the future. I don't know if we will be able to act as if he doesn't have a shunt since it is apparently not working anyway or if it will always have to be a consideration. I only have bits and pieces of information that I have received through text messages from Kelly.

Please continue to pray for Max and for Kelly and John as I know they are so worried and concerned for their precious son. I will update when I have more information.

We keep praying,
Karie

Prayer Request

Hey! This is Max's aunt, Karie. I just talked to Kelly and she asked me to update the blog. They are taking Max to Children's Hospital in Little Rock. He has been vomiting and is lethargic. Kelly spoke with Dr Burson's (the neurosurgeon) nurse who said that it may be his shunt malfunctioning and told them to go to the ER at Children's. Please pray that this is only a stomach virus and that Max's shunt is perfect. Kelly said that they will probably have to do a CT scan to know for sure. There have been several stomach viruses going around so we hope and pray that this is what is causing the vomiting. I will update the blog when we have more information. You have brought Max before our Heavenly Father over and over during the past year. We attribute how well he is doing to God answering your many prayers. We can never thank you enough and we ask you to continue.

We keep praying,
Karie